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Supportive and unsupportive processes within the stress and coping context Hemphill, Kenneth John 1996

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SUPPORTIVE AND UNSUPPORTIVE PROCESSES WITHIN THE STRESS AND COPING CONTEXT by KENNETH JOHN HEMPHILL B.A., The University of B r i t i s h Columbia, 1987 M.A., The University of B r i t i s h Columbia, 1989 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE STUDIES (Department of Psychology) We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA July 1996 ©Kenneth John Hemphill, 1996 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholariy purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of Psychology The University of British Columbia Vancouver, Canada Date July 12. 1996 DE-6 (2/88) 11 Abstract This d i s s e r t a t i o n comprises three studies, and includes interview and questionnaire data from 446 people coping with d i f f e r e n t s t r e s s f u l l i f e events, and 87 providers. Data were gathered from a community sample, undergraduates, and people with Myalgic Encephalomyelitis (M.E.) and t h e i r close others. The primary aims were to document exchanges between providers and r e c i p i e n t s , and develop a framework within which to understand supportive and unsupportive behaviors. Five sets of antecedents were studied, including personality dimensions, need for assistance, symptoms, perceived causes of chronic i l l n e s s , and constraints (attributions for unhelpful actions and factors that prevented more supportive exchanges). Three sets of consequences (number and type of responses, and awareness of unhelpful actions) and two moderating variables (stressor c h a r a c t e r i s t i c s and source of support) were also investigated. Consistent with the t r a d i t i o n a l model of s o c i a l support, d i f f e r e n t forms of emotional assistance were regarded as h e l p f u l across the three studies. Avoidance, provision of unwanted information, and minimization and maximization were considered to be u n i v e r s a l l y unhelpful. In l i n e with the s p e c i f i c i t y model, other forms of support, such as tangible and informational assistance, were mentioned as e s p e c i a l l y h e l p f u l or unhelpful depending upon c h a r a c t e r i s t i c s of the stressor (such as physical incapacitation, c o n t r o l l a b i l i t y , or t r a j e c t o r y ) . Across the three studies, respondents mentioned a t t r i b u t i o n s for unsupportive behaviors that emphasized causes that were benign such as ignorance/lack of knowledge or I l l understanding, emotional d i f f i c u l t i e s , a d d i t i o n a l stressors, and overprotectiveness. Such benign a t t r i b u t i o n s were offered to close others and r e l a t i v e s more often than to distant others, and were not s p e c i f i c to situations with which providers had l i t t l e f a m i l i a r i t y . Approximately half of r e c i p i e n t s reported that they did not say or do anything i n response to unwanted actions by providers, which i s consistent with the notion that many people coping with s t r e s s f u l l i f e events may be reluctant to share t h e i r negative feelings with others. When they were not r e t i c e n t , p a r t i c i p a n t s ' responses were consistent with maintenance of harmony or c o n f l i c t avoidance perspectives. Thus, r e c i p i e n t s said that they discussed the issue r a t i o n a l l y , downplayed the problem, blocked communication, or agreed with providers. Few rec i p i e n t s indicated that they attempted to maintain freedom and autonomy through screaming or acting i n a h o s t i l e manner toward providers. Limitations, p r a c t i c a l implications, and areas for future research were discussed. i v Table of Contents Abstract i i Table of Contents i v L i s t of Tables v i i L i s t of Figures ix Acknowledgment x Chapter 1 Introduction 1 Scope of the Present Investigation 3 Perceived and Received Support 5 Behaviors: Helpful and Unhelpful Exchanges 7 Antecedents 9 Consequences 15 Moderating Variables 23 Relationship between provider and r e c i p i e n t 2 3 Stressor c h a r a c t e r i s t i c s 25 Summary 2 9 Chapter 2 Study 1 3 0 Attributions for Unhelpful Social 33 Interactions Responses to Unhelpful Social Interactions 35 Issues to be Explored i n Study 1 3 6 Method 3 6 Sample 3 6 Procedure 3 7 Measures 37 Category Codes 38 Results 3 8 Event Categories 38 Helpful Responses 38 Unhelpful Responses 4 0 Attributions for Unhelpful or Upsetting 41 Actions Responses to Unhelpful Actions 42 Discussion 43 Chapter 3 Study 2 4 7 Issues to be Explored i n Study 2 51 Method 51 Participants 51 Dependent Measures 51 S t r e s s f u l l i f e event 51 Relationship between provider and r e c i p i e n t 52 Helpful and unhelpful actions 53 Attributions 54 Responses to others' unhelpful actions 55 Results 55 Analyses by Type of Relationship 55 S t r e s s f u l L i f e Events Analyses 56 Relation Between Helpful and Unhelpful Actions 57 V Responses to the Unhelpful Actions 58 Discussion 59 Chapter 4 Study 3 6 3 Description of Myalgic Encephalomyelitis 65 Background Information About Myalgic 67 Encephalomyelitis Supportive and Unsupportive Actions 68 Antecedents 72 Interpersonal t r a i t s and t h e i r p o t e n t i a l 72 r e l a t i o n s to supportive and unsupportive actions Perceived need for assistance 77 Congruence between providers' and 78 r e c i p i e n t s ' ratings Perceived causes of M.E. 82 Constraints 84 Consequences 85 Awareness that actions were unappreciated 8 6 Issues to be Explored i n Study 3 87 Method 87 Inclusion i n Study/Assessment of M.E. 87 Procedure 89 Participants 92 Dependent Measures 9 3 Demographics 94 Helpful and unhelpful actions 95 The Big Five Inventory-44 9 6 Perceived need for assistance 97 M.E. symptoms 97 Psychological symptoms 98 Causal explanations 98 Constraints 99 Awareness that actions were unappreciated 99 Coding 100 Comparisons Between Providers and Recipients 102 on the Open-Ended Data Number of Participants Included i n Analyses 102 Results 103 Descriptive S t a t i s t i c s for Scales 103 Helpful Responses 103 Unhelpful Responses 105 Interpersonal T r a i t s and Their Relations to 108 Supportive and Unsupportive Actions Perceived Need for Assistance 112 Most important assistance needed 113 How did providers become aware that M.E. 116 r e c i p i e n t s needed help? Providers' and Recipients' Views of 119 Symptoms, and Their Relations to Supportive and Unsupportive Actions Perceived Causes of M.E. 124 Constraints 131 Attributions for unhelpful actions 131 What prevented close others from acting 135 in ways that r e c i p i e n t s would have preferred? v i Awareness That Providers' Actions Were 13 7 Unappreciated Discussion 139 Helpful Actions 139 Unhelpful Actions 140 Interpersonal T r a i t s 141 Respondents' Understanding of the Support 14 5 Process Most important assistance 145 How awareness of the support process 147 was obtained Congruence Ratings 150 Perceived Causes of M.E. 154 Constraints 157 Attributions 158 Impediments to e f f e c t i v e actions 159 Method of Data C o l l e c t i o n 160 Chapter 5 Summary of Results and General Discussion 162 Behaviors: Helpful and Unhelpful Exchanges 162 Antecedents 164 Consequences 166 Moderating Variables 172 Relationship factors 172 Stressor c h a r a c t e r i s t i c s 174 Limitations and Areas for Future Research 17 5 References 181 Appendix 1 I n i t i a l Contact Letter 22 6 Appendix 2 Script for Telephone Contact 22 8 Appendix 3 Replies to Common Questions 231 Appendix 4 Consent Form 23 2 Appendix 5 M.E. Participant Interview 234 Appendix 6 Participant with M.E. Questionnaire 272 Appendix 7 Reminder Letter 280 L i s t of Tables V l l Table 1 Frequencies of Others' Helpful Actions 2 00 From Recipients' Points of View Table 2 Frequencies of Others' Unhelpful Actions 201 From Recipients' Points of View Table 3 At t r i b u t i o n s for Others' Unhelpful Actions 2 03 From Recipients' Points of View Table 4 Responses to Others' Unhelpful Actions 2 04 From Recipients' Points of View Table 5 P r i n c i p a l Components Analysis Factor Loadings 2 05 for A t t r i b u t i o n Items Table 6 Means, Standard Deviations, and Cronbach's Alpha 206 R e l i a b i l i t i e s for Scales and Subscales for Participants with Myalgic Encephalomyelitis Table 7 Means, Standard Deviations, and Cronbach's Alpha 2 07 R e l i a b i l i t i e s for Scales and Subscales for Close Others Table 8 Par t i c i p a n t s ' Views Regarding the Most Helpful 2 08 Actions Received Table 9 Respondents' Views Regarding the Most Unhelpful 2 09 or Upsetting Actions Received Table 10 Intercorrelations Between Subscales for 210 Providers and Recipients Table 11 Correlations Between Recipients' Personality 211 Dimensions and Their Reports of Supportive and Unsupportive Behaviors Table 12 Correlations Between Providers' Personality 212 Dimensions and Their Reports of Supportive and Unsupportive Behaviors Offered Table 13 Correlations Between Providers' Personality 213 Dimensions and Their Factors of SAS-C Table 14 Correlations Between Providers' Self-Reported 214 Supportive and Unsupportive Actions and Their Personality Dimensions Table 15 P a r t i c i p a n t s ' Views Regarding the Most 215 Important Help Needed Table 16 How Respondents Believe that Providers Became 216 Aware that Support was Needed Table 17 Correlations Between Providers' Views of 217 Symptoms and Their Reports of Supportive and Unsupportive Behaviors Table 18 Correlations Between Symptom Residuals and 218 Recipients' Reports of Supportive and Unsupportive Behaviors Table 19 Views Regarding the Cause of Their I l l n e s s by 219 Respondents with M.E. Table 20 Factor Loadings of Causal Items for Respondents 220 Table 21 Correlations Between Providers' Views of Causal 221 Factors and Recipients' Reports of Supportive and Unsupportive Behaviors Table 22 Respondents' Perceptions: Why Providers Said 222 or Did the Unhelpful Things They Did v i i i Table 23 Respondents' Perceptions: What Prevented 22 3 Providers From Acting i n More Preferred Ways Table 24 How Respondents Believe that Providers Became 224 Aware that Their Actions Were Unhelpful or Upsetting IX L i s t of Figures Figure 1 Framework Within Which to Investigate 225 Supportive and Unsupportive Behaviors X Acknowledgment There are several people I would l i k e to thank without whose support t h i s project would not have been possible. My committee members at the unive r s i t y and department defenses were very h e l p f u l . Dr. Donald Dutton, Dr. Martha Foschi, Dr. Darrin Lehman, Dr. Wolfgang Linden, Dr. Cathy McFarland, Dr. D i m i t r i Papageorgis, Dr. Daniel Perlman, Dr. Jerry Wiggins, and Dr. Perry L e s l i e helped me to c r i t i c a l l y evaluate my work, while conveying a genuine i n t e r e s t i n the academic enterprise. I would e s p e c i a l l y l i k e to thank my supervisor, Dr. Darrin Lehman, who read through several drafts of t h i s d i s s e r t a t i o n and, by fos t e r i n g a sense of enthusiasm i n the project, managed to a t t r a c t a large group of volunteers and research assistants. Fellow graduate students Christopher Davis and David Mandel played an i n t e g r a l part i n shaping the f i n a l M.E. interview and, along with research assistants and several people with M.E. who served i n an advisory capacity, helped to make a more comprehensive and comprehensible interview. Dr. Grant Stiver graciously recruited participants with M.E. through h i s practi c e . Stephen Reid, former president of M.E.B.C., and Jacqueline Young, current president, mobilized forces within the organization, and assisted wherever possible. E l l e n Hockin selected information from M.E.B.C.'s computer database, and sent l e t t e r s to M.E.B.C. members. She was s e n s i t i v e to both issues of c o n f i d e n t i a l i t y of participants and to our needs as researchers. E l l e n Hockin and Cassandra Neilson contacted 2 00 M.E.B.C. members by telephone, and t h e i r professional assistance under t i g h t turn-around conditions was very much appreciated. Karol Morris had the ominous task of tr a n s c r i b i n g a l l of the M.E. interviews and coordinating information. She worked with amazing e f f i c i e n c y and independence, and made a seemingly insurmountable project manageable. Nancy Dwornick coded and entered data into the computer, and her organizational s k i l l s were s i g n i f i c a n t assets. Several people assisted by interviewing research participants, and I am indebted to them. F i n a l l y , I would l i k e to express my immense gratitude to the research part i c i p a n t s who took part i n the studies, for without t h e i r help the project would never have been conducted. Their p a r t i c i p a t i o n was p a r t i c u l a r l y meaningful given that many took part at a time when they were coping with formidable challenges. In addition to my academic and professional contacts, I would l i k e to thank family and friends who have influenced me as well. I would l i k e to thank my brother James for his assistance with many of the analyses; h i s expertise enhanced the q u a l i t y of t h i s project. He generously gave his time to help me while balancing a busy schedule of his own. My mother Shirley was an i n s p i r a t i o n for much of t h i s work, and i s courageously dealing with the challenges of M.E. every day. My father James has taught me that anything can be accomplished with hard work and determination, and my s i s t e r has provided encouragement and had f a i t h i n my a b i l i t i e s . My grandparents have been important i n my development as a person, and have always emphasized the value of education. There are several friends i n graduate school who have made my time here at U.B.C. an enjoyable one, and whom I w i l l miss; Sunaina Assanand, Peter B i e l i n g , Adam DePaula, x i Josie Geller, Monica Landolt, David Mandel, Paul Trapnell, K r i s t a Trobst, and Cynthia Van Ginkel, to name but a few. I had the good fortune of meeting V i k k i Baker, whose love and encouragement have helped to sustain me during c r i t i c a l points i n the process. To a l l who have helped me i n so many ways, thank you. 1 Supportive and Unsupportive Processes Within the Stress and Coping Context Chapter 1 Introduction Social support research has t r a d i t i o n a l l y emphasized the protective functions of relationships, that i s the b e n e f i c i a l aspects of int e r a c t i n g with people i n one's s o c i a l network (see Cohen & W i l l s , 1985, for a review). Findings have generally supported the notion that s o c i a l r elationships moderate the ef f e c t s of s t r e s s f u l l i f e events (Kessler, Price, & Wortman, 1985; Lin, Simeone, Ensel, & Kuo, 1979; see Cohen & Syme, 1985, for a review). However, i t i s evident that not a l l interpersonal exchanges, or even support attempts, are appreciated by people coping with s t r e s s f u l l i f e events (Cutrona, Cohen, & Igram, 1990; Dunkel-Schetter & Wortman, 1982; Lehman, E l l a r d , & Wortman, 1986). Another, a l b e i t smaller, l i t e r a t u r e has begun to explore various aspects of negative interactions (e.g., Coyne, Wortman, & Lehman, 1988; Wortman & Lehman, 1985). These include people's unsuccessful e f f o r t s to help others (e.g., Dakof & Taylor, 1990; Dunkel-Schetter & Wortman, 1982; House, 1981; Lehman et a l . , 1986; Thoits, 1982; Wortman & Lehman, 1985), active c r i t i c i s m or r e j e c t i o n of others (e.g., Coyne et a l . , 1988; Lehman & Hemphill, 1990), and loss of mastery associated with excessive support provision (e.g., P e r l o f f , 1987). The importance of investigating such issues i s highlighted by the fact that negative s o c i a l interactions are more highly related to adaptational outcomes than are p o s i t i v e interactions (e.g., Rook, 1984). This thesis seeks to advance 2 the l a t t e r t r a d i t i o n by examining not only supportive but also unsupportive processes toward people coping with s t r e s s f u l l i f e events. This d i s s e r t a t i o n comprises three studies that were conducted to examine connections between pre-behavioral, interpersonal, and post-behavioral processes between providers and r e c i p i e n t s . "Providers" are defined as others who o f f e r h e l p f u l and unhelpful actions to someone coping with a s t r e s s f u l l i f e event, whereas "r e c i p i e n t s " are those who receive such actions. Three d i s t i n c t aspects of supportive and unsupportive exchanges are examined (see Figure 1). F i r s t , "antecedents" are those cognitive, motivational, and emotional processes that precede supportive and unsupportive behaviors. For example, a provider may think that the r e c i p i e n t does not want to be reminded about his or her d i f f i c u l t i e s , or a provider may experience d i s t r e s s at the prospect of i n t e r a c t i n g with the r e c i p i e n t . Second, "helpful and unhelpful behaviors" are those s p e c i f i c exchanges that occur between providers and r e c i p i e n t s . For example, a provider may l i s t e n to the concerns of a r e c i p i e n t , or a provider may give advice on how to cope with a p a r t i c u l a r problem. Third, "consequences" r e f e r to post-behavioral processes of a cognitive, behavioral, emotional, or interpersonal nature. For example, a f t e r receiving an action that i s perceived as unhelpful, a r e c i p i e n t may respond by discussing the issue r a t i o n a l l y with the provider or by avoiding future interactions with t h i s person. Each of these three components of the support process w i l l be discussed below, along with two p o t e n t i a l moderating variables (source of support and stressor c h a r a c t e r i s t i c s ) . F i r s t , however, the focus of t h i s 3 d i s s e r t a t i o n and i t s goals w i l l be presented i n more d e t a i l . Scope of the Present Investigation One may investigate an issue from d i f f e r e n t l e v e l s of analysis. For example, Bronfenbrenner (1977, 1979) stresses the immediate household (microsystem), larger s o c i a l systems (exosystem), and c u l t u r a l b e l i e f s and values (macrosystem). Although a l l l e v e l s are important for a complete understanding of the p o s i t i v e and negative sides of s o c i a l exchange, the scope of inquiry i n the present investigation i s r e s t r i c t e d to an examination of supportive and unsupportive interactions at the micro l e v e l of analysis. S p e c i f i c a l l y , i n d i v i d u a l and dyadic influences are examined, along with contextual factors and moderating variables that may a f f e c t the success or f a i l u r e of supportive e f f o r t s . Although the present framework (antecedents, behaviors, and consequences) i s presented i n a l i n e a r fashion, that i s , with one d i s c r e t e variable leading to other variables, one at a time, t h i s has been done s t r i c t l y for the purpose of c l a r i t y . The present set of studies i s based upon the assumption that interpersonal processes are c y c l i c a l and nonlinear. That i s , person A's perceptual processes and behavior influence person B's perceptual processes and behavior which, i n turn, influence person A's perceptual processes and behavior, and so on (Watzlawick, Jackson, & Beavin, 1967). The pattern i s t h e o r e t i c a l l y continuous, with neither a beginning nor an end. Given the i m p r a c t i c a l i t y of investigating a l l aspects of t h i s cycle at once, a decision was made to examine the process at one s l i c e i n time. Participants were asked to discuss the most important examples, ensuring that respondents discussed psychologically meaningful i n t e r a c t i o n s . Antecedents, behaviors, and consequences may be punctuated very d i f f e r e n t l y depending upon whose impressions are being c o l l e c t e d . One person's "behavior" may be another's "consequence." Consider a m a r i t a l l y distressed couple i n which the husband contributes passive withdrawal while the wife contributes nagging c r i t i c i s m . The husband believes that he withdraws only because his wife nags, whereas she explains her c r i t i c i s m of him as a r e s u l t of his withdrawal. In essence, his view of the disagreements i s that "I withdraw because you nag," whereas she believes "I nag because you withdraw." Although there may be agreement with respect to the behaviors that are exchanged between spouses, the partners may punctuate the sequence of events d i f f e r e n t l y (Watzlawick et a l . , 1967). Once started, the cycle may be self-perpetuating unless or u n t i l one or both of the partners a l t e r t h e i r own behavior. The purpose of t h i s d i s s e r t a t i o n i s to examine supportive and unsupportive processes that occur between providers and r e c i p i e n t s . Because the l i t e r a t u r e on negative aspects of s o c i a l exchanges i s i n i t s infancy, t h i s research i s necessarily exploratory. I t aims to integrate information from providers and r e c i p i e n t s about b e l i e f s and experiences p r i o r to, during, and subsequent to the h e l p f u l and unhelpful exchanges. This thesis also presents an organizational framework based upon integration of research that has previously been conducted. It i s recognized that cert a i n variables may be i n f l u e n t i a l at more than one stage i n the process. For example, personality factors are undoubtedly important i n determining the manner i n which an i n d i v i d u a l perceives a s i t u a t i o n ("antecedents"), acts 5 toward someone coping with a s t r e s s f u l l i f e event ("behaviors"), and responds to another person who has offered unhelpful actions ("consequences"). To avoid redundancies, each variable w i l l be discussed i n the most relevant section. Perceived and Received Support There are two separate research t r a d i t i o n s within the s o c i a l support l i t e r a t u r e . The f i r s t , perceived or avai l a b l e s o c i a l support, emphasizes people's perceptions about whether they are loved, valued, and esteemed by others (Pierce, Sarason, & Sarason, 1992). The second, received support, includes resources that are provided to the r e c i p i e n t regardless of how the support i s interpreted (Barrera, 1986). Dunkel-Schetter and Bennett (1990) ref e r to these as cognitive and behavioral support, respectively. The conceptual d i s t i n c t i o n between these two constructs i s supported by empirical evidence (Wethington & Kessler, 1986). Studies examining the r e l a t i o n s between perceived support and supportive behaviors have reported nonexistent (Lakey & Heller, 1988) or weak (Cutrona, 1986) associations. Although both aspects of support are important, the present set of studies focuses exclusively on received support, on interpersonal interactions or the behavioral component of support. This i s because perceived support i s apt to be more inaccurate than received support with respect to quantity and q u a l i t y of s o c i a l resources (Dunkel-Schetter & Bennett, 1990). Thus, the amount of support that i s anticipated may be more or less than a c t u a l l y materializes, and i t s effectiveness may also be discrepant with expectations. There i s some evidence which suggests that people coping with s t r e s s f u l l i f e events may 6 overestimate the amount of support believed to be avai l a b l e (e.g., Peters-Golden, 1982). Providers may be i n e f f e c t i v e because of intrapersonal (Wortman & Lehman, 1985) or interpersonal d i s t r e s s (Lehman et a l . , 1986), poor understanding of e f f e c t i v e responses (Lehman & Hemphill, 1990), and misconceptions about the support process (Sil v e r & Wortman, 1980; Wortman & S i l v e r , 1989). Recipients' lack of awareness of these factors may lead them to inaccurately estimate support that i s forthcoming. Individual difference variables may be implicated i n both the cognitive and behavioral aspects of support, but they may be p a r t i c u l a r l y important with respect to the former component (Lakey & Cassady, 1990). This i s because i t i s more d i f f i c u l t to d i s t o r t an event that has actually happened than i t i s to d i s t o r t the perception of a v a i l a b i l i t y during times of c r i s i s . Thus, disconfirmation of one's views may occur with received support, whereas one's perceptions of available support are often not subject to empirical v a l i d a t i o n i n the same way. Moreover, perceived support i s related to a negative r e c i p i e n t outlook bias (Vinokur, Schul, & Caplan, 1987), which may influence ratings of mental health. This l a t t e r p o s s i b i l i t y may account for the f a c t that there i s often a stronger association between perceived than received support and measures of psychological adjustment (Barrera, 1981; Sarason, Pierce, & Sarason, 1990; Wethington & Kessler, 1986). Moreover, to the extent that current views of available support are based on past experiences (Cutrona, 198 6), i t i s perhaps prudent to measure such experiences d i r e c t l y v i a actual in t e r a c t i o n s . A f i n a l reason for the emphasis upon received support i n the present set of investigations i s that much of our understanding of s o c i a l support has r e l i e d on findings from perceived support. Pea r l i n and McCall (1990) have noted that the s o c i a l and i n t e r a c t i o n a l character of support has either been ignored altogether or largely taken for granted. One aim of t h i s d i s s e r t a t i o n i s to address t h i s issue by investigating supportive and unsupportive behaviors among people coping with d i f f e r e n t types of s t r e s s f u l l i f e events. Behaviors; Helpful and Unhelpful Exchanges Previous s o c i a l support studies have tended to emphasize general questions about, for example, the extent to which respondents f e e l loved. As a r e s u l t , very l i t t l e i s known about s p e c i f i c interactions that occur .between providers and re c i p i e n t s during s t r e s s f u l l i f e events, and t h i s lack of knowledge has impeded (1) progress l i n k i n g support to health outcomes and (2) the development and implementation of e f f e c t i v e strategies to help someone cope with s t r e s s f u l l i f e events (Lehman et a l . , 1986). Some recent studies have attempted to f i l l these gaps by investigating s p e c i f i c behaviors from the re c i p i e n t ' s point of view (e.g., Dakof & Taylor, 1990; Martin, Davis, Baron, Suls, & Blanchard, 1994). An examination of both the he l p f u l and unhelpful aspects of s o c i a l exchanges i s important for at least two reasons. F i r s t , studies have noted that unsupportive elements of interpersonal r e l a t i o n s h i p s are strongly and consistently negatively associated with mental health outcomes (Fiore, Becker, & Coppel, 1983; Rook, 1984). Second, unsupportive behaviors are unfortunately not rare occurrences. For example, Davidowitz and Myrick (1984) found that, among the bereaved, the majority of 8 statements (80%) were considered unhelpful from the r e c i p i e n t ' s point of view. Despite these findings, s u r p r i s i n g l y few researchers have investigated the negative side of r e l a t i o n s h i p s . The l i t t l e research that has been conducted has documented p a r t i c u l a r exchanges that occur between providers and r e c i p i e n t s (e.g., Dakof & Taylor, 1990; Lehman & Hemphill, 1990; Martin et a l . , 1994). For example, Lehman et a l . (1986) reported s p e c i f i c behaviors that were regarded as e s p e c i a l l y h e l p f u l or unhelpful by bereaved individuals interviewed 4-7 years a f t e r the loss of t h e i r spouse or c h i l d i n a motor vehicle accident. Support attempts most frequently mentioned as h e l p f u l were contact with a s i m i l a r other and provision of emotional support; those most frequently mentioned as unhelpful were giving advice and encouraging recovery. Data obtained v i a t h i s methodology are informative because participants describe, i n t h e i r own words, issues of importance to them. The present research attempts to advance the l i t e r a t u r e i n t h i s area i n several ways. Previous research has focused almost exclusively on the r e c i p i e n t ' s point of view. The paucity of data avai l a b l e from the provider's perspective includes behavioral intentions to a s s i s t someone i n hypothetical scenarios (e.g., Dunkel-Schetter & Skokan, 1990; Lehman et a l . , 1986) rather than reports of actual support interactions. This thesis continues to chart out the t e r r i t o r y of supportive and unsupportive behaviors within the context of coping with stress, but extends the l i t e r a t u r e by examining providers as well as r e c i p i e n t s . In an attempt to further understanding i n t h i s research 9 area, contextual factors p o t e n t i a l l y related to h e l p f u l and unhelpful actions w i l l be explored. These factors or processes may e x i s t p r i o r to the acts ( i . e . , "antecedents") or following the acts ( i . e . , "consequences"). In fact, although we have a basic understanding of the types of h e l p f u l and unhelpful exchanges that occur, we know v i r t u a l l y nothing about the context within which they transpire. However, understanding of context i s v i t a l because (1) behavior does not occur i n i s o l a t i o n ; (2) the same behavior may spring from d i f f e r e n t o r i g i n s ; and (3) d i f f e r e n t r e s u l t s may be produced by the same causes (Watzlawick et a l . , 1967). Thus, a mere examination of supportive and unsupportive acts i s problematic. At best i t may y i e l d an incomplete understanding and at worst erroneous conclusions. J u s t i f i c a t i o n for an i n i t i a l attempt at examining these issues rests on the assumption that s o c i a l support i s a dynamic process that comprises an interwoven sequence of events rather than merely supportive and unsupportive actions offered i n a vacuum (Watzlawick et a l . , 1967). Work that has focused on the more dynamic aspects of support processes has been exclusively t h e o r e t i c a l (e.g., Coyne et a l . , 1988). This d i s s e r t a t i o n i s an i n i t i a l attempt to map out the t e r r a i n surrounding h e l p f u l and unhelpful actions, a necessary prerequisite for further empirical and t h e o r e t i c a l development. Antecedents Within the context of the present research, antecedents reference cognitions, a f f e c t i v e states, personality and s i t u a t i o n a l factors that temporally precede the o f f e r i n g of supportive or unsupportive actions. Antecedents, then, r e f e r 10 s p e c i f i c a l l y to the factors that may contribute to what providers say or do. Based upon previous theorizing (e.g., Dunkel-Schetter & Skokan, 1990; House, 1981), t h i s d i s s e r t a t i o n focuses on f i v e main categories of variables that may lead providers to o f f e r p a r t i c u l a r l y h e l p f u l or unhelpful actions. F i r s t , d i s p o s i t i o n a l c h a r a c t e r i s t i c s provide a backdrop against which s p e c i f i c behaviors occur or are interpreted. The r e l a t i v e l y enduring ways that people view and respond to environmental s t i m u l i w i l l undoubtedly impact upon t h e i r interactions with others. Providers' p e r s o n a l i t i e s , therefore, may predict t h e i r p a r t i c u l a r h e l p f u l and unhelpful exchanges with r e c i p i e n t s . For instance, Agreeable i n d i v i d u a l s are characterized by interpersonal t r u s t and consideration of others (Wiggins, 1995), and are apt to o f f e r nurturant behaviors (Alden, Wiggins, & Pincus, 1990). Extraverts tend to experience p o s i t i v e emotions, be sociable, and engage i n high l e v e l s of a c t i v i t y (Costa & McCrae, 1985). Previous research has shown that Extraversion i s p o s i t i v e l y related to s o c i a l support (Connell & D'Augelli, 1990; Duckitt, 1984). Neuroticism, the tendency to experience emotional d i s t r e s s , may be negatively associated with s o c i a l support behaviors (Duckitt, 1984), and p o s i t i v e l y related to the use of regressive or coercive t a c t i c s i n interpersonal relationships (Buss, 1992). Because Conscientiousness and Openness to Experience have been r e l a t i v e l y less studied i n personality research (Marshall, Wortman, Vickers, J r . , Kusulas, & Hervig, 1994), p a r t i c u l a r l y i n the area of s o c i a l support, only tentative predictions may be offered. People high on Openness tend to be philosophical, abstract-thinking, and imaginative (Trapnell & Wiggins, 1990). 11 Therefore, i t i s expected that h e l p f u l and unhelpful actions may r e l a t e to the use of novel or unconventional strategies toward r e c i p i e n t s . Because they are undisciplined, f o r g e t f u l , and disorganized (Trapnell & Wiggins, 1990), those low on Conscientiousness may not o f f e r h e l p f u l actions because t h e i r good intentions are not r e a l i z e d . In order to obtain a comprehensive understanding of associations between personality and h e l p f u l and unhelpful behaviors, the f i v e dimensions of personality (Nurturance, Dominance, Neuroticism, Conscientiousness, and Openness to Experience) w i l l be correlated with measures of s o c i a l support. Second, p r i o r to engaging i n support attempts, the p o t e n t i a l provider must perceive a need for assistance by the r e c i p i e n t (Latane & Darley, 1970). Interestingly, previous researchers have not assessed the ways in which support providers become aware that need e x i s t s . I t i s possible that p o t e n t i a l providers may become aware of need by asking or being asked by r e c i p i e n t s , but at times t h i s may be d i f f i c u l t for one or both of the parties to do (Silver, Wortman, & Crofton, 1990). Recipients may not want to r i s k r e j e c t i o n or h i g h l i g h t t h e i r v i c t i m i z a t i o n status, whereas providers may r e s i s t asking r e c i p i e n t s either because they are concerned about making the p o t e n t i a l r e c i p i e n t f e e l bad or they may not want to invest the time and energy needed to follow through with the request i f an affirmative response i s obtained. Because of these p o t e n t i a l problems, providers and r e c i p i e n t s may not be completely candid with one another. In such situations, providers may r e l y on less d i r e c t indicators of need. For example, providers may perceive need by r e l y i n g on nonverbal signs of d i s t r e s s such as 12 crying, movement of f a c i a l muscles, adoption of ce r t a i n body ' postures, or a l t e r a t i o n s in behavior (such as the r e c i p i e n t withdrawing from a p a r t i c u l a r s i t u a t i o n ) . Because nonverbal factors are highly subject to interpretation, they may y i e l d less accurate information than that obtained from verbal communication (Watzlawick et a l . , 1967). Providers may also assess need on the basis of b e l i e f s about the coping process (Wortman & S i l v e r , 1989), through disclosure from a mutual fr i e n d , or the l i k e . Third, perceptions of symptoms may also be associated with supportive and unsupportive behaviors. Providers and re c i p i e n t s w i l l be asked to report on physical (Goldstein, 1992; Komaroff & Buchwald, 1991) and psychological (Derogatis & Melisaratos, 1983) symptoms experienced by r e c i p i e n t s . The l o g i c i s that r e c i p i e n t s who have an abundance of symptoms w i l l be unable to accomplish much, and w i l l need more assistance from those in t h e i r s o c i a l network than those who endorse fewer complaints. Based upon the foregoing, i t i s assumed that (1) providers who indicate fewer symptoms than t h e i r yoked r e c i p i e n t s w i l l view the s t r e s s f u l l i f e event as being less serious than the person coping with the stressor, and that (2) the size of discrepancy between a provider's and recip i e n t ' s symptom reporting i s a measure of magnitude of congruence of perceived seriousness. Incongruence scores w i l l be analyzed i n connection to supportive and unsupportive actions. It i s hypothesized that (1) reports of more physical symptoms w i l l be related to more h e l p f u l and less unhelpful actions and (2) greater discrepancies between providers and rec i p i e n t s for physical symptoms w i l l be associated with more unhelpful actions and fewer h e l p f u l actions 13 by providers from the r e c i p i e n t s ' point of view. With respect to psychological symptoms, providers may o f f e r p r i m a r i l y supportive actions i f they believe the psychological symptoms are due to stresses and l i m i t a t i o n s imposed by the i l l n e s s . On the other hand, providers may o f f e r primarily unsupportive behaviors, or no actions at a l l , i f they believe that the psychological symptoms are due to r e c i p i e n t s ' lack of e f f o r t . Fourth, providers' views regarding the cause of an i l l n e s s may be important i n leading to a greater understanding of why they say or do what they do. Guided by the research of Weiner and h i s colleagues (Schmidt & Weiner, 1988; Weiner, 1985; Weiner, Perry, & Magnusson, 1988), an examination of a t t r i b u t i o n s and t h e i r r e l a t i o n s to supportive and unsupportive behaviors w i l l be undertaken. According to a t t r i b u t i o n theory, the perceived cause of a negative l i f e event may influence providers' subsequent a f f e c t i v e reactions and behavioral responses. For example, Weiner et a l . (1988) found that physically-based s t r e s s f u l l i f e events were perceived as onset-uncontrollable, and e l i c i t e d p i t y , no anger, and judgments to help. In contrast, mental-behavioral events were perceived as onset-controllable, and e l i c i t e d l i t t l e p i t y , much anger, and lack of assistance. However, Weiner et a l . (1988) did not include support providers of actual people coping with s t r e s s f u l l i f e events, and instead r e l i e d on respondent's views of hypothetical people coping with one of a number of negative l i f e experiences. Rather than investigating people's views of several stigmas, and comparing mean ratings between event types, indiv i d u a l s with d i f f e r i n g views within a single chronic i l l n e s s 14 category w i l l be examined. S p e c i f i c a l l y , close others (providers) of people with Myalgic Encephalomyelitis (M.E.), an i l l n e s s characterized by extreme l e v e l s of fatigue and f l u - l i k e symptoms, w i l l be asked about t h e i r views regarding the suspected etiology of t h e i r close other's i l l n e s s . Because of ambiguity regarding the onset and course of M.E., i t i s anticipated that d i f f e r e n t providers may consider the i l l n e s s to be caused by factors ranging from psychological, physical, environmental, and b i o l o g i c a l . Furthermore, i t i s proposed that such views may be associated with reported behavior toward people with the i l l n e s s . Thus, i t i s anticipated that providers' b e l i e f s that M.E. i s primarily caused by psychological factors w i l l be related to fewer supportive actions, and more unsupportive actions, whereas b e l i e f s that the i l l n e s s i s l a r g e l y due to physical causes w i l l be associated with more supportive actions and fewer unsupportive actions. F i f t h , antecedents w i l l be measured by examining the constraints that have some bearing on providers' subsequent unhelpful actions or lack of h e l p f u l behaviors. Previous research suggests that providers may be influenced by several factors such as ignorance or paucity of information about the appropriate course of action (Peters-Golden, 1982), lack of experience with the stressor (Lehman & Hemphill, 1990), interpersonal anxiety (Wortman & Lehman, 198 5), lack of resources such as time or money (Darley & Batson, 1973; Hobfoll, 1989), discrepant coping s t y l e s of providers and r e c i p i e n t s (Lane & Hobfoll, 1992), and expectancy of negative consequences (Fichten & Bourdon, 1986). Nonetheless, i t i s not clear whether providers and r e c i p i e n t s view such factors as being important i n 15 preventing providers from acting in more favorable ways. In an attempt to determine constraints that are operating on providers, people coping with s t r e s s f u l l i f e events and t h e i r close others (such as partners, close friends, or r e l a t i v e s ) i n i t i a l l y w i l l be asked why they believe providers said or did the unhelpful things that they did. Constraints w i l l be assessed more d i r e c t l y by asking respondents what they think prevented providers from acting i n a way that r e c i p i e n t s would have preferred. Such a question w i l l prompt respondents to think back to the things that were happening before the upsetting exchanges occurred. Consequences Social i n t e r a c t i o n t h e o r i s t s (e.g., Gottman, Notarius, Gonso, & Markman, 197 6) have emphasized the need to investigate not only the supportive and unsupportive acts and t h e i r p r e c i p i t a n t s , but also the r e c i p i e n t ' s response. Despite i t s importance, there have been few studies that have examined t h i s l a t t e r issue. To the extent that behaviors are often repeated within the communication process, and c e r t a i n actions constrain the range of subsequent responses, a r e c i p r o c a l c y c l i c a l process or pattern may develop across time (Patterson & Reid, 1970). The l i t t l e research that has focused on r e c i p i e n t ' s reactions to supportive and unsupportive behaviors has emphasized the physical and psychological consequences of support receipt (see Hobfoll & Parris Stephens, 1990, for a review). For example, considerable research has documented the b e n e f i c i a l long-term e f f e c t s of support upon health (Gore, 1978; House, Umberson, & Landis, 1988). A recent review pointed out that there i s substantial evidence documenting higher mortality 16 rates among people lowest in s o c i a l integration (House, Landis, & Umberson, 1988). S i m i l a r l y , s o c i a l support processes are re l a t e d to immune functioning (Baron, Cutrona, H i c k l i n , Russell, & Lubaroff, 1990), well-being (Turner, 1981), s a t i s f a c t i o n (Hobfoll, Shoham, & R i t t e r , 1991), and psychological symptomatology (Sandler & Barrera, 1984), to name a few. Despite the emphasis upon physical and psychological e f f e c t s of support (House, 1981), there are c e r t a i n consequences that have been less thoroughly investigated. Consequences i n the present set of studies include those interpersonal, perceptual, and behavioral responses that unfold subsequent to h e l p f u l or unhelpful actions. Three main issues to be examined here include (1) the proportion of p a r t i c i p a n t s who have received unhelpful actions that respond i n some manner to the person who has offered them, (2) the types of responses that are made by r e c i p i e n t s , and (3) awareness by providers that t h e i r behavior was unappreciated. Awareness comprises two related issues: (1) the point at which providers became aware of the unhelpfulness of t h e i r actions, and (2) the manner in which that awareness was obtained. The f i r s t issue concerns whether or not r e c i p i e n t s said anything i n response to the unhelpful actions. This i s p o t e n t i a l l y important because i t offers insight into the amount of information that providers have regarding the unhelpfulness of t h e i r actions. There i s some evidence that people coping with s t r e s s f u l l i f e events may be reluctant to share t h e i r negative feelings with others (Dunkel-Schetter, 1984; Lehman & Hemphill, 1990), and t h i s tendency may be exacerbated when rec i p i e n t s are to communicate with someone whose actions are 17 unappreciated. If r e c i p i e n t s f a i l to communicate with t h e i r s i g n i f i c a n t others, then providers may be poorly informed about the unhelpfulness of t h e i r actions, and such negative exchanges may then be more l i k e l y to occur i n the future. Recipients who indicate that they did or said something i n response to the providers' unhelpful or upsetting actions w i l l be asked to describe exactly how they responded. This question examines whether r e c i p i e n t s ' responses are generally appropriate or inappropriate to the s i t u a t i o n (Barrera, 1981; Coyne et a l . , 1988; Dakof & Taylor, 1990). For example, previous research i n the area of interpersonal c o n f l i c t s has determined that people may respond to dyadic problems in numerous ways. Perhaps the most s o c i a l l y sanctioned of these i s r a t i o n a l discussion (Straus, 1979). In fact, therapists of m a r i t a l l y distressed patients often prescribe interventions to enhance verbal exchanges between partners, such as communication t r a i n i n g and c l a r i f y i n g one's feelings and opinions (Schmaling, F r u z z e t t i , & Jacobson, 1989). Nonetheless, i t i s clear that, p a r t i c u l a r l y i n c o n f l i c t u a l r e l a t i o n s h i p s , negative responses are also l i k e l y . These may include complaining, arguing, demanding and, i n extreme circumstances, violence (Pan, Neidig, & O'Leary, 1994). Moreover, people coping with s t r e s s f u l l i f e events may respond to c r i t i c i s m of others by withdrawing p h y s i c a l l y ( B u r c h i l l & S t i l e s , 1988). This i s p a r t i c u l a r l y true i f there has been a cycle of interactions in which providers respond to d i s t r e s s of r e c i p i e n t s with annoyance and unsupportive actions (Coyne, 1976). In addition to physical avoidance, r e c i p i e n t s may engage in psychological avoidance by e x p l i c i t r e j e c t i o n , avoidance of 18 confrontation, or ignoring what the provider has said or done (Jung, 1989). Various t h e o r e t i c a l perspectives may be useful i n elucidating post-behavioral processes; a summary of equity, reactance, and threat to self-esteem theories i s offered below. Given that there are no well developed perspectives to account for h e l p f u l and unhelpful actions, i t i s not the goal of the present set of studies to t e s t s p e c i f i c predictions from these theories. Rather, the present set of studies i s necessarily exploratory, and the d i f f e r e n t perspectives are u t i l i z e d as frameworks within which to better understand the support process. Using the theories as a guide, I consider possible responses to interactions that may occur between providers and r e c i p i e n t s . Equity theories are based on assumptions that the lack of equity i n interpersonal relationships leads to discomfort, which may be restored by a l t e r i n g inputs or outputs, or by c o g n i t i v e l y d i s t o r t i n g them (e.g., Walster, Walster, & Berscheid, 1978). Such a formulation emphasizes negative reactions to aid (Fisher, Nadler, & Whitcher-Alagna, 1982), that i s , feelings and responses that occur as a r e s u l t of disproportionate inputs of providers r e l a t i v e to r e c i p i e n t s . In essence, equity theory expects unfavorable reactions to being overbenefited, and e f f o r t s to restore equity or leave the r e l a t i o n s h i p . Equity theories, however, f a i l to explain exactly how r e c i p i e n t s respond i n order to e s t a b l i s h p a r i t y . That i s , what type of behaviors w i l l r e c i p i e n t s perform? One goal of the present set of investigations i s to document s p e c i f i c actions that r e c i p i e n t s engage i n subsequent to receiving unhelpful exchanges 19 from providers. Reactance theory (Brehm, 1966) i s perhaps more relevant for close relationships i n which one i n d i v i d u a l i s coping with a negative l i f e experience. The theory posits that perceived reduction i n freedom of choice r e s u l t s i n a negative psychological state. People are then motivated to restore such freedom by engaging in the threatened behavior, or by a l t e r i n g perceptions and judgments. For example, intrusiveness on the part of an overinvolved provider may lead the r e c i p i e n t to preserve autonomy by "refusing to be pushed around" and engaging i n the undesired behavior anyway (Coyne et a l . , 1988). Reactance theory, then, emphasizes r e c i p i e n t behaviors that map d i r e c t l y onto those statements or actions by providers. Fisher et a l . (1982) have developed a comprehensive threat to self-esteem model to account for r e c i p i e n t reactions to assistance. B r i e f l y , the model assumes that dependency r e l a t i o n s have po t e n t i a l for s e l f - t h r e a t , and that there i s a mixture of b e n e f i c i a l and negative features of support. For example, instrumental aid may be obtained at the expense of independence. Furthermore, reactions to aid are determined by i t s predominantly supportive or threatening aspects. Of p a r t i c u l a r i n t e r e s t to the present set of studies, negative or defensive responses to assistance may be obtained when there are c e r t a i n aid-related conditions, such as negative donor att r i b u t e s and motivation, i n a b i l i t y to reciprocate, threat to autonomy, and aid that implies the loss of important freedoms. Again, however, the s p e c i f i c manner i n which pa r t i c i p a n t s may respond i s not addressed by the model, and i s a focus of investigation i n the present set of studies. 20 Few researchers have investigated d i r e c t l y awareness of the supportiveness of p a r t i c u l a r behaviors. However, i n t e r a c t i o n -based approaches to s o c i a l support may help to shed some l i g h t on these processes. Although providers and r e c i p i e n t s may agree about the supportiveness of cer t a i n behaviors (Lehman et a l . , 1986), t h i s i s not always the case. For example, Melamed and Brenner (1990) studied couples i n which one of the spouses had rheumatoid a r t h r i t i s (RA), and noted that a substantial percentage of partners disagreed about supportiveness of a var i e t y of actions. S i m i l a r l y , support providers may believe that e f f o r t s of cheerfulness and compliments about patient's appearance would be supportive, even though the patients themselves may disagree (Peters-Golden, 1982). These findings suggest that a subset of providers may be unaware that t h e i r actions were unhelpful in the f i r s t place. The t h i r d issue, development of awareness at some point i n the support process, w i l l be examined i n two ways. F i r s t , people with M.E. and t h e i r close others w i l l be asked to think back to the most upsetting exchange between them. Then, respondents w i l l be asked when, i f at a l l , awareness was obtained. Responses to such a question w i l l be important to a s s i s t i n our understanding of the manner in which the support process unfolds. For instance, providers may recognize immediately a f t e r saying or doing the unhelpful things that t h e i r actions were unappreciated. Then, they may use t h i s awareness as a guide to t h e i r future behavior, or believe that such things needed to be said or done, even though they were not appreciated by the r e c i p i e n t . A l t e r n a t i v e l y , providers may not recognize that what they said or did was unhelpful, and may 21 a r r i v e at such an understanding only a f t e r an intervening period of time. Providers may make inferences about the appropriateness of t h e i r behaviors i n a number of ways. To further our understanding i n t h i s area, a second question w i l l be asked regarding how providers became aware that t h e i r actions were unhelpful or upsetting. In order to answer t h i s question, providers may r e l y on statements made by r e c i p i e n t s , nonverbal indicators, or obtain information from a t h i r d party. Each of these w i l l be discussed i n turn. Research has indicated that disclosure about a traumatic event may have b e n e f i c i a l e f f e c t s (Pennebaker, 1989). However, for various reasons, people coping with s t r e s s f u l l i f e events may f i n d i t d i f f i c u l t to t a l k about t h e i r problems, and i n some cases discussion may have deleterious e f f e c t s (Costanza, Derlega, & Winstead, 1988). Recipients may be p a r t i c u l a r l y hesitant to t a l k to providers about the unhelpful things that have been said or done by the l a t t e r because of the appearance of being ungrateful for successful supportive e f f o r t s , tensions inherent i n face-to-face interactions, and discouragement of open communication that may occur when re c i p i e n t s attempt to discuss t h e i r thoughts and feelings (Wortman & Lehman, 1985) . If providers are unable to obtain useful information from , verbal statements by r e c i p i e n t s to assess awareness of the unhelpfulness of t h e i r actions, they may r e l y on nonverbal strategies. Nonverbal behavior and communication involve the i n t e n t i o n a l sending of various messages to another i n d i v i d u a l by means of symbols or signs (Wiener, Devoe, Rubinow, & Geller, 1972). Although nonverbal communication may comprise a number 22 of components, providers and r e c i p i e n t s , who are u n l i k e l y to be experts i n t h i s area, probably w i l l only be cognizant of a subset of strategies that influence actions. Nonverbal behaviors that may be used to gain awareness include gestures (movement of the body, or any part of i t , that i s considered expressive of thought or f e e l i n g ) , f a c i a l expressions, physical proximity between one person and another, and eye contact (Siegman & Feldstein, 1987) . A t h i r d way i n which providers may assess that t h e i r actions were unappreciated i s by t a l k i n g with mutual friends. Copers may be reluctant to reveal t h i s information d i r e c t l y to providers, as the former may want to avoid the negative s o c i a l consequences that may ensue (Lehman & Hemphill, 1990). Moreover, such information i s inconsistent with the p o s i t i v i t y bias that i s inherent i n s o c i a l interactions (Taylor, Falke, Mazel, & Hilsberg, 1988). Nonetheless, r e c i p i e n t s of unhelpful actions may be w i l l i n g to disclose t h e i r d i s s a t i s f a c t i o n to other people who did not o f f e r the unhelpful actions. In some instances, p a r t i c u l a r l y among family members, the confidant may report back to providers that t h e i r actions were unappreciated. Therefore, awareness i s obtained through discussion with a t h i r d party, and not with the r e c i p i e n t d i r e c t l y (see Taylor, Aspinwall, Giuliano, & Dakof, 1993, for data on a related topic, " s t o r y t e l l i n g " ) . The negative i n t e r a c t i o n ( i . e . , "unhelpful actions") i t s e l f may o f f e r clues to providers about the unhelpfulness of behaviors. However, i f providers do not attend c l o s e l y to the responses to t h e i r actions, and engage i n a s u p e r f i c i a l analysis of exchanges, providers may not y i e l d any useful information 23 from them. These l a t t e r p o s s i b i l i t i e s suggest p r a c t i c a l implications; i n such situations i t may be important for professionals to inform providers and r e c i p i e n t s about the development of problematic exchanges, and about the implementation of more e f f e c t i v e strategies. Moderating Variables Thus far, discussion has emphasized variables that f i t into one of the three categories of antecedents, behaviors, or post-behavioral consequences. However, there are other variables that cut across these categories, and may moderate t h e i r r e l a t i o n s . Two variables, source of support and stressor c h a r a c t e r i s t i c s , are postulated to a f f e c t the r e l a t i o n s between the antecedent and behavioral components (see Figure 1). Relationship between provider and r e c i p i e n t . There i s evidence that source of support plays an important r o l e i n the support process. For instance, data suggest that type of r e l a t i o n s h i p between providers and r e c i p i e n t s i s associated with the l a t t e r ' s response to negative l i f e events (Coyne & DeLongis, 1986). Thus, spouses may protect one another from the deleterious e f f e c t s of s t r e s s f u l l i f e events, and the presence of other intimate relationships does not seem to be able to compensate for the absence of a close partner (Brown & Harris, 1978). Soc i a l support from family versus friends i s distinguishable, has d i f f e r e n t correlates, and i s worthwhile to measure separately (Procidano & Heller, 1983). Close relationships are often characterized by c o n f l i c t u a l a f f e c t i v e bonds. Thus, most anger that adults experience i n t h e i r d a i l y l i v e s i s with blood r e l a t i v e s , followed by t h e i r partners (Fitz & Gerstenzang, 1978). Argyle and Furnham (1982, 24 1983) investigated d i f f e r e n t r e l a t i o n s h i p types, and noted d i s t i n c t i v e patterns of s a t i s f a c t i o n and c o n f l i c t . Thus, the spouse was characterized by the highest l e v e l s of both c o n f l i c t and s a t i s f a c t i o n than more distant r e l a t i o n s h i p s . The r a t i o of c o n f l i c t to s a t i s f a c t i o n was greater i n less voluntary r e l a t i o n s h i p s , such as with r e l a t i v e s . The above research, despite documenting the importance of d i f f e r e n t types of relationships, f a i l s to examine the s p e c i f i c exchanges that occur between providers and r e c i p i e n t s , and how such behaviors are associated with a t t r i b u t i o n s for the unhelpful behavior. The l i t t l e research that i s availa b l e i s consistent with the notion that behaviors offered, and rec i p i e n t ' s perceptions of them, d i f f e r according to re l a t i o n s h i p between provider and re c i p i e n t . Thus, Dakof and Taylor (1990) and Martin et a l . (1994) noted that esteem/emotional support was most common in close relationships, whereas information and advice were more often offered by medical care experts. Among older adults, instrumental support was primarily offered by children, whereas emotional support was more t y p i c a l l y offered by spouses or friends (Rook, 1987). F i n a l l y , Primomo, Yates, and Woods (1990) studied women with chronic i l l n e s s e s , finding that they perceived more support from t h e i r partner than from any other source. Whereas family members provided more a f f e c t i v e support than friends or others, friends provided more affirmation than family or others. Lehman and Hemphill (1990) asked people with multiple s c l e r o s i s (MS) to indicate unhelpful actions that were offered to them and t h e i r a t t r i b u t i o n s for these actions. The researchers found that by far the most common a t t r i b u t i o n for 25 unhelpful support attempts was a class of benign a t t r i b u t i o n s , such as lack of knowledge or understanding of the i l l n e s s and attempts to be h e l p f u l . At a broad conceptual l e v e l , source of support provider (e.g., r e l a t i v e s , close others, or more distant others) may be an important variable to account for such benign interpretations. I t i s reasoned that r e c i p i e n t s may o f f e r benign interpretations for those who are generally supportive or emotionally close to them, while not extending such views to more distant others. Such a rationale i s an extension of findings among ma r i t a l l y distressed and nondistressed couples. For example, Bradbury and Fincham (1992) found that benign a t t r i b u t i o n s were offered by m a r i t a l l y nondistressed couples, whereas maladaptive a t t r i b u t i o n s were offered by distressed couples, and that pejorative a t t r i b u t i o n s were related to higher rates of negative behavior. The above findings w i l l be extended i n the present set of studies by examining d i f f e r e n t relationships i n order to obtain a range of closeness. Different types of r e l a t i o n s h i p s varying along the closeness dimension may be associated with discrepant views regarding why unhelpful actions were offered. Recipients may be unwilling to entertain negative thoughts about close others because of fear of r e j e c t i o n or a l i e n a t i o n (Wortman & Lehman, 1985); such issues are much less l i k e l y to be of concern in an emotionally distanced r e l a t i o n s h i p . Stressor c h a r a c t e r i s t i c s . Previous researchers have noted possible r e c i p r o c a l l i n k s between s o c i a l support and stressors (Thoits, 1982), and the interdependence of stress and support processes (Eckenrode & Gore, 1981). Many negative l i f e events disrupt or reduce the a v a i l a b i l i t y of support. For example, 26 bereavement often involves the loss of a p o t e n t i a l provider. Cessation of a romantic rel a t i o n s h i p may e n t a i l not only loss of a former source of support, but also disruption of the entire s o c i a l network (Shinn, Lehmann, & Wong, 1984) . Work stress, p a r t i c u l a r l y loss of a job, may undermine the presence of opportunities for support. In fact, a l l events on Holmes and Rahe's (1967) l i s t of s t r e s s f u l l i f e events have d i r e c t or i n d i r e c t implications for s o c i a l support. Events that are judged as highly s t r e s s f u l constitute a loss or threat of a loss (see Hobfoll, 1989, for a review). Moreover, negative l i f e events often involve sequences of events in which multiple losses occur (Wortman & S i l v e r , 1987). One d i s t i n c t i o n between minor and major stressors i s that the l a t t e r challenge the s t a b i l i t y of the individual's presumptive world (Janoff-Bulman & Timko, 1987). The present set of studies examines s i g n i f i c a n t stressors, as opposed to hassles or problems associated with everyday l i f e . S p e c i f i c i t y models propose that d i f f e r e n t l i f e experiences require d i f f e r e n t types of support because they pose d i f f e r e n t coping requirements (Cohen & McKay, 1983). Although well-intentioned, others' e f f o r t s may be seen as aversive to r e c i p i e n t s because of a lack of congruence between support offered and the individual's current needs (Lehman et a l . , 1986) . According to Cohen and McKay's (1983) stressor-support s p e c i f i c i t y model of the buffering hypothesis, negative l i f e events involving resource d e f i c i t s require tangible support such as money, transportation, or assistance with everyday tasks. In contrast, stressors i n which emotional d i f f i c u l t i e s are due to 27 interpretations of the s i t u a t i o n require appraisal support. Stressors associated with a t t r i b u t i o n s of f a i l u r e are o f f s e t by esteem support. The limited data that are available tend to support a s p e c i f i c i t y model. For example, Got t l i e b (1978) found that emotional support was perceived as most h e l p f u l for problems of an emotional nature, and instrumental support and active helping behaviors were most help f u l for f i n a n c i a l problems. S i m i l a r l y , p r a c t i c a l assistance was most he l p f u l for diabe t i c s (Dunkel-Schetter, Blasband, Feinstein, & Bennett Herbert, 1992), the c h r o n i c a l l y i l l (Lehman & Hemphill, 1990), and headache patients, but not i r r i t a b l e bowel syndrome patients (Martin et a l . , 1994). In contrast to the bereaved and cancer patients, few people with MS mentioned contact with s i m i l a r others as e s p e c i a l l y h e l p f u l , perhaps because they were exposed to others with more advanced cases of the i l l n e s s , thus providing a threatening view of the future (Lehman & Hemphill, 1990). In terms of unhelpful actions, minimization and t r i v i a l i z a t i o n appear to be important for people experiencing threats/losses such as cancer patients (Dakof & Taylor, 1990; Dunkel-Schetter, 1984), the bereaved (Lehman et a l . , 1986) and MS patients (Lehman & Hemphill, 1990), but not those facing challenges such as diabetics (Dunkel-Schetter et a l . , 1992). Diabetics were unique i n reporting that attempts to show love and concern through offerings of r e s t r i c t e d foods, and reprimands from deviating from diet, were unappreciated (Dunkel-Schetter et a l . , 1992). The bereaved's focus on others' encouragements of recovery and advice-giving may be s p e c i f i c to stressors i n which the perceived t r a j e c t o r y i s p o s i t i v e , which 28 would explain fewer endorsements among cancer and MS samples (Lehman & Hemphill, 1990). Cutrona and Russell (Cutrona, 1990; Cutrona & Russell, 1990) extended the s p e c i f i c i t y model by i d e n t i f y i n g four dimensions with which to categorize s t r e s s f u l l i f e events. These include d e s i r a b i l i t y , c o n t r o l l a b i l i t y , duration of consequences, and l i f e domain affected by the event. When an event i s cont r o l l a b l e , problem-focused coping (Lazarus & Folkman, 1984) i n the form of informational support may be b e n e f i c i a l because i t emphasizes instrumental action that i s needed i n order to r e c t i f y the s i t u a t i o n . In contrast to s p e c i f i c i t y models, t r a d i t i o n a l models assume that interpersonal relationships are generally h e l p f u l , and that t h e i r absence i s detrimental (Cohen & W i l l s , 1985). There i s also empirical support for t h i s viewpoint. In a review of behaviors perceived as help f u l and unhelpful across four groups, Goldsmith (1992) reported that a l l samples found d i r e c t expressions of love/concern to be h e l p f u l . This conclusion i s echoed by Wortman and Lehman (1985), who emphasize the importance of avoiding responses that close off further attempts at discussion, which t r i v i a l i z e or dismiss the victim's feelings, or which imply that the victim i s coping poorly. Esteem/emotional support i s p a r t i c u l a r l y important for serious events and li f e - t h r e a t e n i n g i l l n e s s e s (Martin et a l . , 1994). Not s u r p r i s i n g l y , research has found rude/insensitive remarks (Goldsmith, 1992) and various forms of minimization or t r i v i a l i z a t i o n (Lehman & Hemphill, 1990) to be generally unhelpful. The above review emphasizes that there i s evidence for both 29 s p e c i f i c i t y and t r a d i t i o n a l models of s o c i a l support processes. However, i t i s not known which types of s o c i a l support are consistent with s p e c i f i c i t y or t r a d i t i o n a l models when people are coping with a variety of negative l i f e circumstances. Therefore, one goal of the present set of studies i s to document consistencies and inconsistencies i n reports of supportive and unsupportive behaviors across a range of s t r e s s f u l l i f e events. Summary In sum, t h i s thesis seeks to advance research i n the area of supportive and unsupportive behaviors by examining not only the h e l p f u l and unhelpful actions that are exchanged from providers to re c i p i e n t s , but also the context within which they occur. The studies that comprise t h i s d i s s e r t a t i o n emphasize the c y c l i c a l , nonlinear nature of interpersonal processes. Antecedents are those cognitive, motivational, and emotional processes that precede supportive or unsupportive actions. Consequences, i n contrast, are post-behavioral processes of a cognitive and interpersonal nature. Two moderating variables of pot e n t i a l importance, source of support and stressor c h a r a c t e r i s t i c s , w i l l also be examined. A framework within which these variables may be understood, and the i n t e r -r e l a t i o n s h i p s between them, i s proposed. 30 Chapter 2 Study 1 Study 1 explores both the b e n e f i c i a l and detrimental functions of s o c i a l interactions as perceived by those who have experienced a s t r e s s f u l l i f e event. In previous investigations, respondents who have experienced events such as bereavement (Davidowitz & Myrick, 1984; Lehman et a l . , 1986; Rigdon, Clayton, & Dimond, 1987), cancer (Dakof & Taylor, 1990; Dunkel-Schetter & Wortman, 1982), i r r i t a b l e bowel syndrome or recurrent headache (Martin et a l . , 1994), and MS (Lehman & Hemphill, 1990) have been asked to indicate the things others have said or done that were e s p e c i a l l y h e l p f u l or unhelpful. Lehman and Hemphill (1990) and Goldsmith (1992) noted that some things were viewed as generally h e l p f u l or unhelpful across d i f f e r e n t samples while other things were s p e c i f i c to certain types of s t r e s s f u l circumstances. Nonetheless, the research area s t i l l lacks a taxonomy of h e l p f u l and unhelpful actions across a broad range of events. Thus, one goal of Study 1 was to sample respondents having experienced any of a wide spectrum of negative l i f e experiences. S p e c i f i c a l l y , a large group of people were asked to indicate the most s t r e s s f u l event that had occurred to them, thus enabling analyses of the perceptions of h e l p f u l and unhelpful actions by others both within and across l i f e event categories. In order to obtain a range of event types, pa r t i c i p a n t s were rec r u i t e d in two ways. F i r s t , members of the community who v i s i t e d the Department of Psychology at the University of B r i t i s h Columbia during an Open House were asked to complete a questionnaire on s o c i a l support. Additional respondents 3 1 included volunteers from an introductory s o c i a l psychology c l a s s . T r a d i t i o n a l approaches to s o c i a l support have assumed that interpersonal relationships are u n i v e r s a l l y b e n e f i c i a l (Cohen & W i l l s , 1985; House, 1981). For example, s o c i a l support i s thought to be central in protecting people from the negative e f f e c t s of stress (see Kessler et a l . , 1985, for a review). Furthermore, the absence of s i g n i f i c a n t r e l a t i o n s h i p s i s generally considered deleterious, leading to disease v u l n e r a b i l i t y , immune function d i f f i c u l t i e s , and enhanced mortality (House et a l . , 1988; Pennebaker, Kiecolt-Glaser, & Glaser, 1988). S p e c i f i c i t y models, i n contrast, propose that the effectiveness of supportive actions w i l l vary according to the s i t u a t i o n a l demands of the stressor (e.g., Cutrona, 1990). For example, someone whose physical functioning i s compromised w i l l benefit from tangible assistance to a greater extent than someone who i s well p h y s i c a l l y . In the present study, the p o s s i b i l i t y of combining t r a d i t i o n a l and s p e c i f i c i t y models was investigated. I t was reasoned that although some types of actions may be perceived by r e c i p i e n t s as h e l p f u l or unhelpful regardless of the type of stressor, the b e n e f i c i a l or detrimental e f f e c t s of other actions may depend upon the s t r e s s f u l l i f e event experienced. I t was anticipated that emotional support would be highly valued by r e c i p i e n t s , i r r e s p e c t i v e of the type of s t r e s s f u l event experienced. Two s p e c i f i c forms of emotional support, l i s t e n i n g to others and providing a nonjudgmental environment, would l i k e l y v alidate the concerns and b e l i e f s of the r e c i p i e n t . A d d i t i o n a l l y , t a l k i n g with others about traumatic experiences i s 32 usually regarded by both professionals and laypeople as generally important i n f a c i l i t a t i n g psychological adjustment i n coping with undesirable l i f e events (Pennebaker, 1989; Wortman & Lehman, 1985). In contrast, some actions were expected to be viewed as uniformly unhelpful or upsetting. For example, previous research has indicated that various forms of minimization (e.g., "Your s i t u a t i o n i s not as bad as i t could be") tend to be di s t r e s s i n g to re c i p i e n t s (Lehman et a l . , 1986). Likewise, r e c i p i e n t s t y p i c a l l y consider others' views that suggest that the r e c i p i e n t i s to blame for his or her v i c t i m i z a t i o n to be unhelpful. Although blaming statements are generally seen i n a negative way, people experiencing c e r t a i n types of s t r e s s f u l l i f e events may be p a r t i c u l a r l y prone to being exposed to such statements. For instance, people are l i k e l y to be held culpable for outcomes primarily when they are able to a l t e r them through e f f o r t f u l responses (Brickman et a l . , 1982). Therefore, others may say or do things that are regarded as e s p e c i a l l y unhelpful by r e c i p i e n t s because such actions i m p l i c i t l y or e x p l i c i t l y indicate that the person was responsible for his or her predicament (e.g., Dakof & Taylor, 1990; Jung, 1989). I t was anticipated that, because events such as r e l a t i o n s h i p problems and work or school stress are often regarded as being influenced by the person involved, reports of unhelpful actions that focus on the re c i p i e n t ' s contribution to the event may be most l i k e l y i n such cases. In contrast, events that are much less l i k e l y to be influenced by v o l i t i o n , such as bereavement, were expected to lead to fewer reports of unhelpful s o c i a l interactions i n the form of victim blaming. 33 Another set of actions was expected to be perceived as d i f f e r e n t i a l l y h e l p f u l or unhelpful depending upon the stressor. For example, although the provision of p r a c t i c a l assistance may be e s p e c i a l l y h e l p f u l to the p h y s i c a l l y - i l l (Dakof & Taylor, 1990; Lehman & Hemphill, 1990), these actions may be considered condescending to r e c i p i e n t s without such physical r e s t r i c t i o n s . S i m i l a r l y , respondents experiencing events that are perceived as c o n t r o l l a b l e or associated with a p o s i t i v e course are expected to perceive informational support as being h e l p f u l , whereas those experiencing events associated with a lack of control or an unfavorable course may view such assistance as unhelpful (Buunk, C o l l i n s , Taylor, VanYperen, & Dakof, 1990; Hemphill & Lehman, 1991). This i s because, in the case of events that are subject to personal control, information may provide the necessary prerequisite for e f f e c t i v e action or, with respect to s t r e s s f u l events that have a favorable tr a j e c t o r y , informational support may give r e c i p i e n t s hope of a p o s i t i v e outcome (Albert, 1977) . A t t r i b u t i o n s for Unhelpful Social Interactions In an attempt to discover how unhelpful support attempts are interpreted, Lehman and Hemphill (1990) examined MS r e c i p i e n t s ' a t t r i b u t i o n s by asking respondents why they thought support providers acted as they did. Results indicated that r e c i p i e n t s tended to make benign a t t r i b u t i o n s , even for support attempts that seemed es p e c i a l l y rude and inappropriate. For example, people with MS reported that others said or did unhelpful things because of a lack of knowledge or understanding about the i l l n e s s , i n an attempt to be h e l p f u l , or due to interpersonal discomfort. It was proposed that people 34 experiencing s t r e s s f u l l i f e events, such as MS, f e e l vulnerable within t h e i r s o c i a l network (owing to t h e i r victimization) and hence may be loath to c r i t i c i z e others' unhelpful actions. That i s , people coping with chronic i l l n e s s may be motivated to believe that support providers are b a s i c a l l y good people because holding such b e l i e f s may be less threatening to the s t a b i l i t y of the r e l a t i o n s h i p . Because the Lehman and Hemphill study was li m i t e d to those with MS, i t i s unclear whether people coping with other l i f e stressors would also make benign a t t r i b u t i o n s , or whether such responses are s p e c i f i c , for example, to chronic i l l n e s s e s , or to s t r e s s f u l l i f e events with which pote n t i a l providers have l i t t l e f a m i l i a r i t y . That i s , r e c i p i e n t s may be l i k e l y to o f f e r benign a t t r i b u t i o n s (e.g., others lack knowledge or experience) primarily i n situations that support providers are u n l i k e l y to encounter on a regular basis. The present study examines t h i s p o s s i b i l i t y with the inclusion of a wide range of l i f e events. Another possible explanation for the large number of benign a t t r i b u t i o n s offered i n the Lehman and Hemphill (1990) study involves the preamble to the unhelpful question. Prio r to i n d i c a t i n g the things others said or did that were unhelpful, pa r t i c i p a n t s read the following statement: "Sometimes, i n t r y i n g to help, people may say or do things that are not i n fact h e l p f u l . " Thus, respondents may have inadvertently been discouraged from reporting unhelpful actions by others that were not intended to be h e l p f u l , p r e c i s e l y those actions expected to be perceived by the r e c i p i e n t in the most negative and c r i t i c a l terms. In order to widen the scope of unhelpful behaviors that may be reported, t h i s study omitted the preamble, focusing not 35 only on "support attempts that f a i l " but also including negative or upsetting "exchanges" or "actions" that are not necessarily meant to be h e l p f u l . Responses to Unhelpful Social Interactions Unhelpful actions are r a r e l y discrete events. Rather, they are l i k e l y to occur within the context of a r e l a t i o n s h i p that unfolds over time (Coyne et a l . , 1988). The pattern of repeated exchanges that occurs between persons across time has large l y been ignored i n the stress and coping l i t e r a t u r e . Instead of viewing s o c i a l support as consisting of an interwoven sequence of behaviors, researchers have investigated actions at one s l i c e i n time (Coyne & Holroyd, 1982), an approach that f a i l s to examine the antecedents and consequences of behavior. This study examines the b i d i r e c t i o n a l exchange that occurs between r e c i p i e n t s and poten t i a l supporters by asking respondents how they reacted to others' unhelpful interactions. U t i l i z i n g t h i s approach allowed an examination of the following questions: What percentage of rec i p i e n t s respond at a l l to another's unhelpful actions? Are r e c i p i e n t s ' responses generally conducive to ameliorating unhelpful actions i n the future (e.g., r a t i o n a l discussion, request for a d i f f e r e n t type of support; see Barrera, 1981 and Dakof & Taylor, 1990, for discussions), or are they more l i k e l y to exacerbate communication d i f f i c u l t i e s and further unhelpful exchanges (e.g., screaming, avoiding; see Coyne et a l . , 1988, for a discussion)? 36 Issues to be Explored i n Study 1 1. ) Respondents coping with one of a number of s t r e s s f u l l i f e events w i l l report supportive and unsupportive behaviors that are at times consistent with the s p e c i f i c i t y model and at other times consistent with the t r a d i t i o n a l model. 2. ) Investigate whether benign a t t r i b u t i o n s for unhelpful actions are offered primarily for stressors with which providers have inadequate f a m i l i a r i t y , or whether such a t t r i b u t i o n s are more general across s t r e s s f u l l i f e events. 3. ) Examine i f r e c i p i e n t s ' responses to unhelpful actions are l i k e l y to ameliorate or exacerbate problems with providers. Method Sample Participants were obtained v i a two methods. One hundred and thirty-two respondents (7 0% of the t o t a l sample) were volunteers who attended the University of B r i t i s h Columbia's "Open House." This was a three-day event i n which people from the community v i s i t e d p a r t i c i p a t i n g u n i v e r s i t y departments. I t i s impossible to calculate the response rate for t h i s sample because v i s i t o r s were simply given the opportunity to p a r t i c i p a t e i n the study with a sign posted outside of a large room. F i f t y - s i x volunteer students in a s o c i a l psychology class (30% of the t o t a l sample) also participated i n the study for extra course c r e d i t . The t o t a l sample (188 people) comprised 73% females and 27% males. Participants ranged i n age from 13 to 78 years (M = 31 years). F i f t y - e i g h t percent of respondents were single, 23% married, 10% divorced, 5% separated, 4% common law, and 2% were widowed. 37 Procedure Participants were informed that the researchers were interested i n learning as much as possible about how people deal with s t r e s s f u l l i f e circumstances, with an emphasis upon interpersonal aspects of coping. Questionnaires were completed i n d i v i d u a l l y , and participants were assured of t h e i r anonymity. Subsequent to completing the questionnaire, each respondent was given a debriefing sheet describing the research i n d e t a i l and was thanked for t h e i r p a r t i c i p a t i o n . Measures The questionnaire contained several open-ended questions asking people to indicate t h e i r most s t r e s s f u l l i f e experience, other people's responses to them, and t h e i r reactions to others' responses. F i r s t , participants were asked: "Think about the one most s t r e s s f u l event that has occurred to you (for example, the death of a loved one, a personal injury or i l l n e s s , loss of a job). Please give a b r i e f account of t h i s event." Then, respondents were asked, "Thinking back, what did others say or do that you found e s p e c i a l l y h e l p f u l i n coping with t h i s s t r e s s f u l event?" Following t h i s question, part i c i p a n t s were asked, "What did others say or do that you found e s p e c i a l l y unhelpful or upsetting?" Attributions for the unhelpful actions were assessed by asking respondents, "For each of the unhelpful actions described above, why do you think the person did or said them?" Participants then answered the following question: "At the time, did you do or say something (to the person) i n response to the person's unhelpful or upsetting actions?" If respondents answered in the affirmative, they were asked to describe how they responded to each of the unhelpful or 38 upsetting actions. The questionnaire concluded with demographic questions (gender, age, and marital status). Category Codes Category codes for the open-ended questions were formed by: (1) a consideration of categories from previous research (Dakof & Taylor, 1990; Lehman & Hemphill, 1990; Lehman et a l . , 1986) and (2) an examination of a random sample of responses from the current p a r t i c i p a n t s . Response categories were rated by three or four independent raters. Inter-rater r e l i a b i l i t i e s were calculated as the percentage of answers agreed upon by at least two-thirds or three-fourths of the raters (in the case of the three and four person r a t i n g teams, r e s p e c t i v e l y ) . Agreements on the event, h e l p f u l , unhelpful, a t t r i b u t i o n , and response questions were 90%, 83%, 86%, 80%, and 86%, respectively. Categories are l i s t e d i n Tables 1 through 4. Results Event Categories Respondents reported s t r e s s f u l l i f e events that were c l a s s i f i e d into one of six categories: (1) bereavement (55 respondents, or 29.3% of the t o t a l sample); (2) divorce/relationship problems (49, or 26.1%); (3) work or school stress (39, or 20.7%); (4) close other's injury, i l l n e s s , or suicide attempt (19, or 10.1%); (5) one's own i l l n e s s or injury (13, or 6.9%); and (6) one's own psychological problems (13, or 6.9%) . Helpful Responses Ninety-four percent of participants reported at least one e s p e c i a l l y h e l p f u l action by others (see Table 1). Each response category was coded dichotomously as to whether or not 39 p a r t i c i p a n t s mentioned i t . Then, event types were treated as discrete categories, and the dichotomized responses were cross-tabulated within them. Chi-squares were then performed on each of the response codes across event types. This procedure was u t i l i z e d for the h e l p f u l , unhelpful, a t t r i b u t i o n s for unhelpful actions, and response questions. Such actions were c l a s s i f i e d Insert Table 1 About Here under one of three major headings. The majority of the sample reported- that some form of emotional support (75.5%) was considered to be es p e c i a l l y h e l p f u l , followed by some form of informational (29.3%) and some form of tangible (17.6%) support. Emotional support was not d i f f e r e n t i a l l y reported across event types, X 2(5) = 5.37, ns. Thus, emotional support appears to be uni v e r s a l l y b e n e f i c i a l regardless of the type of adversity with which one i s coping. In addition, various forms of informational support were reported d i f f e r e n t i a l l y across s t r e s s f u l l i f e events, X 2(5) = 22.94, p < .001; respondents who had experienced work or school stress (51.3%), i l l n e s s or injury (38.5%), or re l a t i o n s h i p problems (36.7%) reported a preponderance of he l p f u l actions that took the form of providing various types of information. In contrast, people experiencing bereavement (10.9%) reported informational support much less frequently. Such a finding makes sense given that the former types of stressors tend to be modifiable and under the respondent's control to a greater extent than the l a t t e r event. Thus, informational support i s regarded as h e l p f u l primarily when actions may be taken to modify one's s i t u a t i o n . Moreover, 40 informational support appears to be valued more often when events have a favorable tra j e c t o r y than when they do not. Various forms of tangible support were d i f f e r e n t i a l l y reported as h e l p f u l across event types, X 2(5) = 18.93, p < .005; such answers were provided primarily by r e c i p i e n t s s u f f e r i n g from psychological problems (46.2%), or those coping with a physical i l l n e s s or injury (46.2%). Tangible support sometimes took the form of f i n a n c i a l aid, for example, a f t e r experiencing job loss. When the s t r e s s f u l event was physically-based, such as hyperthyroidism, p r a c t i c a l assistance (e.g., helping with cleaning, cooking, and childcare) was regarded as e s p e c i a l l y h e l p f u l . Tangible support was ra r e l y reported as e s p e c i a l l y h e l p f u l in the case of bereavement (7.3%), work or school stress (15.4%), or others' injury, i l l n e s s , or suicide attempt (15.8%). Unhelpful Responses Ninety percent of participants reported at least one unhelpful or upsetting action by others (see Table 2). Unlike the h e l p f u l actions, there were no differences across event types for any of the major unhelpful categories. A sizable proportion of the t o t a l sample reported that others responded with general negative actions (41.0%), provided them with unwanted information (39.9%), or avoided them (30.3%). Minimization (23.9%) was also regarded as unhelpful by re c i p i e n t s , while maximization was mentioned by just 5.3% of respondents. Insert Table 2 About Here 41 One s p e c i f i c type of negative action, blame, was mentioned d i f f e r e n t i a l l y across event types, X 2(5) = 22.74, p < .001. S p e c i f i c a l l y , approximately one quarter of the respondents who had experienced divorce or r e l a t i o n s h i p problems (28.6%), or work or school stress (23.1%) reported that others' blaming was regarded as e s p e c i a l l y unhelpful or upsetting. Such a response was e s s e n t i a l l y non-existent for those who had suffered a personal injury or i l l n e s s (0%), psychological problems (0%), or bereavement (1.8%). A t t r i b u t i o n s for Unhelpful or Upsetting Actions Ninety-one percent of respondents reported at least one a t t r i b u t i o n for the negative s o c i a l interactions they had described (see Table 3). A substantial number of these were benign a t t r i b u t i o n s . For instance, 34.0 % of p a r t i c i p a n t s gave general h e l p f u l a t t r i b u t i o n s , such as "the provider was only t r y i n g to be h e l p f u l , " or "the provider was concerned and worried about me," and 31.4% of respondents reported that providers gave unhelpful responses because they lacked information or did not know what to do. An additional 31.4% of respondents attributed unhelpful actions to providers' emotional d i f f i c u l t i e s , such as feelings of denial, fear, or discomfort. No differences were found across event types for any of these a t t r i b u t i o n s . Only 21.3% of respondents offered c r i t i c a l a t t r i b u t i o n s for the unhelpful actions, such as reporting that others were blameworthy or inconsiderate. Such a t t r i b u t i o n s varied across event types, X 2(5) = 15.62, p < .01. Negative a t t r i b u t i o n s were most commonly reported by people experiencing work or school stress (41.0%), followed by bereavement (23.6%) and 42 psychological problems (23.1%),,and least l i k e l y for others' i l l n e s s or injury (10.5%), divorce or r e l a t i o n s h i p problems (10.2%) ,, and own injury or i l l n e s s (7.7%). F i n a l l y , 12.2% of respondents attributed others' unhelpful or upsetting actions to r e l i g i o u s or philosophical orientation (such as a minister's unhelpful statement "It ' s God's w i l l " being a t t r i b u t e d to r e l i g i o u s o r i e n t a t i o n ) . Such a t t r i b u t i o n s did not vary across event type, X 2(5) = 6.63, ns. Insert Table 3 About Here Responses to Unhelpful Actions F u l l y 47% of respondents (most of whom had reported multiple unhelpful actions) reported that they did not do or say anything i n response to the unhelpful actions by others. Thus, par t i c i p a n t s were roughly as l i k e l y as not to l e t t h e i r d i s s a t i s f a c t i o n be known. There were no differences across event types. Of those who indicated that they responded to others who had said or done unhelpful things (see Table 4), the most frequent response was discussing the issue r a t i o n a l l y with the provider (26.1%), followed by verbally abusing the provider (14.4%), downplaying the problem (11.2%) (such as denying what was said or done), blocking further communication (5.9%), and being submissive (4.8%). Insert Table 4 About Here 43 Discussion Findings from Study 1 extend the r e l a t i v e l y recent research on perceptions of support attempts. Respondents who had experienced one of a number of s t r e s s f u l l i f e events viewed various forms of emotional support as e s p e c i a l l y h e l p f u l , whereas informational and tangible support were mentioned as e s p e c i a l l y h e l p f u l i n p a r t i c u l a r circumstances. Informational support was mentioned as e s p e c i a l l y h e l p f u l for s t r e s s f u l l i f e events that are r e l a t i v e l y common and modifiable, suggesting that experience with a stressor and m a l l e a b i l i t y of the s i t u a t i o n may be important. Such events also tend to be more tr a n s i t o r y and less chronic than those for which informational support was r a r e l y mentioned as being e s p e c i a l l y h e l p f u l . Tangible support was appreciated for events i n which the r e c i p i e n t was unable to complete tasks because of physical d i s a b i l i t y (e.g., physical i l l n e s s or i n j u r y ) , or when provision of p r a c t i c a l assistance would a l l e v i a t e burden i n order to f a c i l i t a t e coping (e.g., psychological problems). General negative actions, avoidance by others, and minimization were consistently regarded as e s p e c i a l l y unhelpful across the range of l i f e events represented here. A subsample of respondents mentioned that providers' actions implying r e c i p i e n t s were to blame for t h e i r predicament were e s p e c i a l l y unhelpful or upsetting (cf. Dakof & Taylor, 1990; Jung, 1989). As expected, these were most often respondents who had experienced events that may be perceived by providers as being caused, at least in part, by r e c i p i e n t s ' own actions (such as divorce or r e l a t i o n s h i p problems and work or school s t r e s s ) ; respondents experiencing situations beyond t h e i r control (e.g., 44 bereavement or injury to another person) were less l i k e l y to report such blaming acts by others. This pattern i s consistent with the notion that others are l i k e l y to e l i c i t p i t y i f onset of v i c t i m i z a t i o n i s perceived as uncontrollable, whereas blame may r e s u l t when the person's s i t u a t i o n i s regarded as con t r o l l a b l e (Schwarzer & Weiner, 1991). Corroborating past research (Lehman & Hemphill, 1990), respondents i n the present study overwhelmingly at t r i b u t e d others' unhelpful actions to benign causes, and were u n l i k e l y to char a c t e r o l o g i c a l l y blame providers for the unhelpful things they said or did. Only a minority of parti c i p a n t s mentioned that providers were inconsiderate, thoughtless, or i n s e n s i t i v e . Instead, such actions were more commonly attributed to factors such as lack of knowledge about the s i t u a t i o n , or emotional d i f f i c u l t i e s inherent in the helping context (see Lehman et a l . , 1986, for a discussion of t h i s issue). These benign a t t r i b u t i o n s were offered by those experiencing problems that were both r e l a t i v e l y common and uncommon, and were not s p e c i f i c to s i t u a t i o n s in which providers might be unfamiliar with the problem. The preamble to the unhelpful question was eliminated. Therefore, the alt e r n a t i v e explanation, that benign a t t r i b u t i o n s were offered because participants r e s t r i c t e d t h e i r answers to behaviors that were intended to be h e l p f u l , was ruled out. In the present study, respondents were asked about others' unhelpful actions without any mention that such behaviors were meant to be supportive, and most respondents s t i l l offered benign a t t r i b u t i o n s . This study extends work on the negative aspects of s o c i a l 45 interactions by taking a preliminary step toward examining i t s b i d i r e c t i o n a l nature. Participants were asked whether they said or did anything i n response to others' unhelpful actions. Interestingly, almost half of the respondents reported that they did not respond at a l l . These r e s u l t s are consistent with Dunkel-Schetter (1984) and Meyerowitz, Watkins, and Sparks (1983), who found that cancer patients were sometimes reluctant to share t h e i r negative feelings with others. Perhaps re c i p i e n t s were reluctant to say or do something i n response to an unhelpful or upsetting i n t e r a c t i o n for fear of appearing ungrateful. Recipients may f e e l that giving feedback to providers regarding t h e i r unhelpful actions w i l l r e s u l t i n the caregiver's reluctance to be supportive i n the future. If so, informing would-be providers about t h e i r unhelpful actions would lead not only to fewer negative exchanges, but also to a reduction i n he l p f u l actions as well. A l t e r n a t i v e l y , r e c i p i e n t s ' lack of response may be due to t h e i r concern that others would not respond to the feedback i n a constructive manner, or that statements of d i s s a t i s f a c t i o n would accomplish nothing or make matters worse. In support of such a suggestion, of those who did say or do something, many of the actions seemed dysfunctional, or at least u n l i k e l y to reduce negative exchanges i n the future. For instance, respondents mentioned that they became verbally abusive, downplayed the problem, blocked communication, or acquiesced to what the provider said. Only a minority of respondents reported discussing the issue r a t i o n a l l y with the provider. This i s perhaps the most s o c i a l l y acceptable way of resolving these issues, i n that i t informs the provider that his or her actions 46 were unhelpful or upsett ing, and the reasons for such percept ions, while minimizing the l i k e l i h o o d of a l i e n a t i n g the prov ider . 47 Chapter 3 Study 2 One of the main goals of Study 1 was to provide a basic understanding of the types of exchanges that r e c i p i e n t s view as es p e c i a l l y h e l p f u l and unhelpful, and at t r i b u t i o n s for negative actions. To review, hel p f u l actions included emotional, informational, and tangible forms of support. In contrast, unsupportive behaviors comprised general negative actions, provision of unwanted information, avoidance, and various forms of minimization and maximization. The majority of a t t r i b u t i o n s for unhelpful actions were benign; few re c i p i e n t s made char a c t e r o l o g i c a l l y blaming statements. Nonetheless, the findings from Study 1 were somewhat limited because they were only based on answers from open-ended questions. Although data obtained from such a methodology are undoubtedly important i n helping e s t a b l i s h a knowledge base, only a lim i t e d number of responses of esp e c i a l l y h e l p f u l and unhelpful actions were offered by each respondent. On the closed-ended items that were employed i n Study 2, rec i p i e n t s reported, for example, whether or not someone had provided informational support or minimized t h e i r problem. By using such a methodology, i t i s possible to pursue whether respondents received a number of he l p f u l and unhelpful actions, allowing for a standardized set of response options. The use of Li k e r t scales also enables analyses to be made with respect to the amount that p a r t i c u l a r actions are received, as respondents indicate how frequently various types of exchanges have occurred. Lehman and Hemphill (1990) noted that the majority of upsetting exchanges experienced by MS patients were attributed 48 by them benignly, and t h i s finding was confirmed i n Study 1 across a range.of s t r e s s f u l l i f e events. Study 2 extends these findings by examining source of support provider (e.g., r e l a t i v e s , close others, or more distant others) as a p o t e n t i a l l y important variable to account for t h i s e f f e c t . Some recent data (e.g., Dakof & Taylor, 1990) suggest that the q u a l i t y of the r e l a t i o n s h i p between providers and r e c i p i e n t s may be an important factor i n determining whether a p a r t i c u l a r action i s perceived as h e l p f u l or unhelpful. The preponderance of benign a t t r i b u t i o n s that we have found, then, may r e f l e c t respondents' tendencies to think primarily about exchanges with people who are generally supportive or emotionally close to them. Recipients may be less w i l l i n g to entertain c r i t i c a l thoughts regarding the causes of others' unhelpful acts when the provider i s an important member of the support network. This may be due to a heightened dependence on them for assistance, or because of fear of r e j e c t i o n and a l i e n a t i o n (Lehman & Hemphill; 1990; Wortman & Lehman, 1985). Questioning, or being c r i t i c a l of, the motives of close friends or family members may threaten the re l a t i o n s h i p s , prompting r e c i p i e n t s to be concerned that future support w i l l not be forthcoming, and that other negative actions w i l l occur i n the future. There would be much less motivation to block, or o f f s e t , these concerns when considering the antecedents of unhelpful actions provided by mere acquaintances. Therefore, recipi e n t s may be more l i k e l y to a t t r i b u t e unhelpful or upsetting actions of strangers to, for example, t h e i r callousness or t h e i r negative feelings toward the r e c i p i e n t . 49 Recipients may also report d i f f e r e n t h e l p f u l and unhelpful actions for subtypes of s i g n i f i c a n t others (e.g., friends vs. family members). There i s l i k e l y to be greater freedom with respect to the degree and type of in t e r a c t i o n that takes place with friends than with family members. Although we have the option of spending varying amounts of time with friends, t h i s i s less true for family members. Thus, communications with r e l a t i v e s are more l i k e l y to be "forced" (Hanson, Sauer, St Seelbach, 1983; Stein, 1992), and f a m i l i a l t i e s t y p i c a l l y e n t a i l greater obligations (Lichtman, Taylor, & Wood, 1988). In addition, we are l i k e l y to choose friends who are s i m i l a r to ourselves on important dimensions (Festinger, 1954), and research has shown that s i m i l a r i t y i s an important determinant of l i k i n g (Byrne, 1971). Because of the se l e c t i o n that takes place regarding friendship development and maintenance that i s not possible with f a m i l i a l t i e s , we are l i k e l y to obtain a better "match" i n terms of personality compatibility with friends than with r e l a t i v e s . To the extent that t h i s i s true, we are more l i k e l y to have p o s i t i v e interactions with friends than with r e l a t i v e s , and are also l i k e l y to give friends the benefit of the doubt in more instances. Therefore, i t i s predicted that study participants w i l l (1) indicate more he l p f u l interactions, (2) o f f e r more benign and (3) o f f e r fewer blaming a t t r i b u t i o n s for close friends, followed by r e l a t i v e s and then more distant others. Because the present study i s exploratory, no predictions are offered with respect to the receipt of unhelpful actions by s i g n i f i c a n t others when compared to acquaintances. Nonetheless, several p o s s i b i l i t i e s suggest themselves. On the one hand, 50 strategies such as c o n f l i c t avoidance are used to maintain harmonious f a m i l i a l relationships (Stein, 1992), suggesting the receipt of few unhelpful actions from kin. On the other hand, because one i s more obligated to interact with family members compared with acquaintances, one might anticipate receipt of more unhelpful actions due to problems associated with forced communications. Consistent with t h i s l a t t e r notion, Lehman et a l . (1986) found that more than half of t h e i r bereaved respondents who spontaneously mentioned the source of unhelpful responses attributed them to r e l a t i v e s . In Study 1, half of the participants indicated that they did not say or do anything i n response to others' unhelpful actions. Study 2 extends t h i s research by examining whether the rate and type of responses reported by re c i p i e n t s vary as a function of the rel a t i o n s h i p type between provider and re c i p i e n t . On the one hand, recipie n t s may be more l i k e l y to respond to more distant others' unhelpful actions than those by close friends or r e l a t i v e s . To the extent that f a i l u r e to respond i s based, at least in part, on the recognition that dysfunctional responses may occur, i t may be less threatening to make such a response i n a more distant r e l a t i o n s h i p . Because of the more lim i t e d contact and emotional involvement with more distant others, the need for maintenance of good r e l a t i o n s i s less apparent. Ineffective responses may threaten the s t a b i l i t y of a long-term relationship, such as a close friendship or kinship. On the other hand, recipie n t s may experience greater commitment to maintenance of relationships with s i g n i f i c a n t others than with acquaintances (Dakof & Taylor, 1990). If so, then r e c i p i e n t s may recognize the value of discussing problems 51 with close providers. If unhelpful actions by others are not discussed, then t h e i r recurrence i s l i k e l y because providers may be unaware that such responses were problematic i n the f i r s t place. Issues to be Explored i n Study 2 1. ) I t i s predicted that r e c i p i e n t s w i l l report more supportive actions, more benign and fewer blaming a t t r i b u t i o n s for unhelpful behaviors by close friends, followed by r e l a t i v e s and then more distant others. 2. ) Are r e c i p i e n t s more or less l i k e l y to respond to providers' unhelpful actions as a function of r e l a t i o n s h i p type between providers and recipients? Method Participants Respondents were 153 students enrolled in a t h i r d year s o c i a l psychology class. Of those who completed questionnaires, 104 (68%) were female, and 49 (32%) were male. The average age was 22 years. Dependent Measures S t r e s s f u l l i f e event. Participants were asked to "Please take a moment to think about the most s t r e s s f u l event you have experienced (for example, the death of a loved one, a personal injury or i l l n e s s , loss of a job, r e l a t i o n s h i p break-up). Please give a b r i e f account of t h i s event." Category codes were developed based on responses from Study 1, and an examination of Study 2 p a r t i c i p a n t s ' responses. Open-ended responses were coded into one of the following ten categories: 1) r e l a t i o n s h i p problems (56 respondents; 37% of t o t a l sample); 2) work or school stress (25; 16%); 3) bereavement (21; 14%); 4) others' 52 injury, i l l n e s s , or suicide attempt (11; 7%); 5) own i l l n e s s or injury (10; 7%); 6) immigrating/moving away (7; 5%); 7) automobile accident (no injury mentioned (4; 3%); 8) l e g a l problems (4; 3%); 9) sexual assault or abuse (3; 2%); or 10) miscellaneous (6; 4%). R e l i a b i l i t y was calculated by having a second rater code a l l of the responses. Discrepancies were resolved through discussion between the raters. Cohen's kappa was .87. Relationship between provider and r e c i p i e n t . Participants were asked to "think about the one person (such as a r e l a t i v e , close fri e n d , acquaintance) who said or did the most unhelpful or upsetting things when you were coping with the s t r e s s f u l event." Respondents indicated t h e i r r e l a t i o n s h i p to t h i s person by checking one of several closed-ended options (e.g., s i s t e r , brother, mother, father, close friend, acquaintance, and stranger). Respondents were also given the opportunity to mention somebody who did not f i t into any of the above categories. Because of the small number of mentions i n each category, the o r i g i n a l 17 categories were collapsed into one of three major categories. Category one (33% of the t o t a l sample) comprised " r e l a t i v e s , " and included mother (12% of sample), father (11%), s i s t e r (3%), aunt (3%), brother (2%), grandmother (1%), and cousin (1%). Category two (36% of the t o t a l sample) comprised "close others" and included close f r i e n d (26%), g i r l f r i e n d (5%), and boyfriend (5%). Category three (18% of the t o t a l sample) comprised "more distant others" and included acquaintance (14%), stranger (3%), and doctor/nurse (1%). Because they could not r e l i a b l y be put into any of the above categories, roommate (1%), coworker (1%), employer (1%), and ex-53 wife (1%) were not included i n the analyses. Respondents were asked to indicate the sex of the person who responded i n an unhelpful or upsetting manner toward them. Of the 139 respondents who answered t h i s question, 72 (52%) reported that the provider was female and 67 (48%) said the provider was male. Helpful and unhelpful actions. The Social Support Behavior Questionnaire (SSBQ), a 14-item scale developed by Johnson, Hobfoll, and Zalcberg-Linetzy (1993) was used to tap h e l p f u l and unhelpful actions. The scale, which was based on findings of previous research (e.g., Truax & Carkhuff, 1967; Wortman & Lehman, 1985), evaluates the extent to which a provider engages i n c e r t a i n behaviors when the r e c i p i e n t i s i n d i s t r e s s and needs aid or support. Questions were presented on four-point scales, ranging from 1 "never" to 4 "often." The scale comprises six h e l p f u l (e.g., "How often has your close other provided you the chance to openly express your feelings? Examples: Listened. Asked questions that didn't close the topic or your expression of f e e l i n g s . Encouraged expression of feelings, even p a i n f u l feelings.") and nine unhelpful (e.g., "How often has your close other encouraged you to simply overcome what occurred to you? Example: Told you to "pick yourself up by your bootstraps."") items. Rather than scoring the scale as i t i s t r a d i t i o n a l l y scored (that i s , by subtracting unhelpful items from h e l p f u l ones to generate a single s o c i a l support behavior index), one score was calculated for the unhelpful actions by summing unhelpful and upsetting actions, and a separate score was generated for the h e l p f u l actions. This was done because previous research has 54 shown that h e l p f u l and unhelpful aspects of s o c i a l support are d i f f e r e n t i a l l y related to psychological well-being (Rook, 1984). Cronbach's alpha for the "unhelpful" scale was .67, and .92 for the " h e l p f u l " scale. Higher scores on the " h e l p f u l " scale indicate more he l p f u l actions by others, and higher scores on the "unhelpful" scale indicate more unhelpful actions. A t t r i b u t i o n s . Respondents were asked the following a t t r i b u t i o n question for others' unhelpful actions: "WHY do you think the person you indicated said or did these unhelpful things?" Twenty closed-ended options, developed on the basis of previous research (Lehman & Hemphill, 1990) and the r e s u l t s of Study 1, were presented on 4-point scales, ranging from 1 "Does not apply at a l l " to 4 "Applies a l o t . " F i f t e e n "benign" items comprised for g i v i n g a t t r i b u t i o n s by the r e c i p i e n t suggesting that the provider was not to blame for his or her actions (e.g., "He or she was concerned or worried about me" and "He or she was t r y i n g to do what was best for me. He or she had my best interests at heart"). Five "blame" items included a t t r i b u t i o n s suggesting the provider was responsible for his or her unhelpful actions (e.g., "He or she i s an inconsiderate person" and "He or she i s a thoughtless person"). A l l 20 items were subjected to a P r i n c i p a l Components Analysis with Varimax rotation. A scree p l o t indicated that a three factor solution f i t the data best. One item ("He or she i s a nosy person") was omitted because i t did not load strongly (<.30) on one factor, and loaded with roughly equal magnitude on a l l 3 factors. The f i r s t general factor included "Blame/Benign" items. The "blame" and "benign" a t t r i b u t i o n items were computed i n d i v i d u a l l y in subsequent analyses because of the t h e o r e t i c a l 55 s i g n i f i c a n c e of separating them. The second factor, labeled Ignorance, comprised items suggesting that the provider was uncertain about what to do to help the r e c i p i e n t . The t h i r d factor, labeled Emotional Distress, comprised items suggesting that the provider responded i n an unhelpful manner because he or she was somewhat psychologically distressed at the time (see Table 5). Subsequent analyses were conducted a f t e r computing means with items that comprise each of the factors. Insert Table 5 About Here Responses to other's unhelpful actions. Respondents were asked "At the time (of the negative i n t e r a c t i o n ) , did you say or do something to the person i n response to his or her unhelpful or upsetting action?" If participants answered a f f i r m a t i v e l y , they were asked to describe how they responded. Perusal of the responses led to the development of f i v e d i s c r e t e categories (discussed the issue r a t i o n a l l y , blocked communication, became emotional, verbally abusive, and miscellaneous), into which answers were coded by two raters. Cohen's kappas were computed for each of the categories, and ranged from .77 to .90. Results Analyses by Type of Relationship One-way ANOVA's were conducted with the three l e v e l s of r e l a t i o n s h i p ( r e l a t i v e s , close others, more distant others) as the between subjects factor. As predicted, others' h e l p f u l actions d i f f e r e d across re l a t i o n s h i p types, F (2, 133) = 6.17, p_ < .005. S p e c i f i c a l l y , more he l p f u l actions were offered by close others (M = 2.54) and r e l a t i v e s (M = 2.37) than by distant 56 others (M = 1.90), t(85) = 3.93, p_ < .001 and t(77) = 2.37, p_ < .05, respectively. The former two groups did not d i f f e r from one another, t(104) = 1.04, ns. Reports of others' unhelpful actions did not d i f f e r by r e l a t i o n s h i p type, F(2, 132) = 1.99, ns. Analyses were conducted to te s t whether or not a t t r i b u t i o n s offered by part i c i p a n t s would vary as a function of r e l a t i o n s h i p between provider and r e c i p i e n t . As anticipated, the e f f e c t for the "Benign" items was s i g n i f i c a n t , F (2, 133) = 9.40, p < .001. Follow-up analyses revealed that r e c i p i e n t s were less l i k e l y to o f f e r benign a t t r i b u t i o n s to distant others (M = 1.88) than to r e l a t i v e s (M = 2.63), t(78) = 4.32, p_ < .001, or close others (M = 2.64), t(79) = 5.08, p < .001. The l a t t e r two groups did not d i f f e r from one another, t(96) = .07, ns. P a r t i a l l y supporting expectations, the e f f e c t for "Blame" items was marginal, F (2, 132) = 2.27, p_ = .11. The analysis for Ignorance (Factor 2) was nonsignificant, F (2, 13 3) = .04, ns. The ANOVA for Emotional Distress (Factor 3) was s i g n i f i c a n t , F (2, 133) = 3.16, p < .05. Follow-up analyses revealed that close others (M = 2.05) were seen as more emotionally troubled than distant others (M -1.54), t(81) = 2.78, p < .01. There was no difference between either of these groups and r e l a t i v e s (M = 1.84). St r e s s f u l L i f e Event Analyses A series of analyses were conducted with s t r e s s f u l l i f e events as discrete categories. In order to reduce the number of events to an acceptable number, and to ensure greater robustness of findings, only categories with at least ten respondents represented within each group were retained. Thus, f i v e minor categories were dropped. One-way ANOVA's were conducted with 57 s t r e s s f u l l i f e events (relationship problems; work or school stress; bereavement; others' injury, i l l n e s s , or suicide attempt; own i l l n e s s or injury) as the between subjects factor for the closed-ended data. Helpful, F(4, 112) = .58, p_ = .68, and unhelpful, F(4, 109) = 1.67, p_ = .16, actions did not vary according to s t r e s s f u l l i f e events. In contrast, one of the a t t r i b u t i o n analyses was s i g n i f i c a n t . Thus, benign a t t r i b u t i o n s were reported to a d i f f e r e n t extent depending upon the s t r e s s f u l l i f e event experienced, F(4, 111) = 3.39, p_ < .01. Follow-up Scheffe analyses revealed that bereavement (M = 2.00) d i f f e r e d from r e l a t i o n s h i p problems (M = 2.76), such that more benign a t t r i b u t i o n s were offered by respondents i n the l a t t e r category. Although none of the other a t t r i b u t i o n factors were s i g n i f i c a n t (Emotional Distress and Blaming p_'s > .25), there was a tendency for "Ignorant" a t t r i b u t i o n s to vary across s t r e s s f u l l i f e events, F(4, 110) = 2.38, p. = .06. Five separate chi-square analyses were conducted to determine whether or not r e c i p i e n t s ' responses toward providers subsequent to receiving the unhelpful actions varied according to s t r e s s f u l l i f e event experienced. Presence or absence of each response was cross-tabulated with the f i v e s t r e s s f u l l i f e events categories. None of the analyses were s i g n i f i c a n t ( a l l p_'s > . 15) . Relation Between Helpful and Unhelpful Actions Recipients selected providers to report about on the basis of the most unhelpful things that one person i n t h e i r s o c i a l network had said or done. Therefore, i n the present study, respondents were biased in favor of reporting negative aspects 58 of s o c i a l exchanges. However, i t i s unclear whether such providers were viewed as primarily o f f e r i n g unhelpful actions, or whether they were also perceived as doing h e l p f u l things for r e c i p i e n t s . In order to address t h i s issue, a c o r r e l a t i o n a l analysis was conducted with the " h e l p f u l " and "unhelpful" subscales of the SSBQ. There was a s i g n i f i c a n t association between the " h e l p f u l " and "unhelpful" subscales, r(138) = .37, p. < .001, suggesting that r e c i p i e n t s tended to report on providers who not only did unhelpful things but also did h e l p f u l things. To examine further the r e l a t i o n between h e l p f u l and unhelpful actions, a paired t - t e s t was conducted with means of the h e l p f u l and unhelpful subscales of the SSBQ as the dependent variables. Participants reported that unhelpful actions (M = 2.08) were offered to a lesser extent than were h e l p f u l actions (M = 2.33), t(138) = 3.49, p. < .001. Thus, even though the methodology of the present study emphasized problematic exchanges, and included individuals who did things that were often considered to be extremely negative, r e c i p i e n t s believed that providers said or did more help f u l than unhelpful things. This finding suggests that even relationships punctuated with undesirable actions are also seen as having b e n e f i c i a l aspects to them. Responses to the Unhelpful Actions When asked how they responded to providers' unhelpful actions, approximately half of the r e c i p i e n t s (78 or 51% of t o t a l sample) indicated that they said or did nothing. Forty-one percent (62 respondents) indicated that they responded i n some manner, and 9% of the participants (13 respondents) l e f t the question blank. Open-ended responses were coded into one of 59 the following f i v e categories: 1) discussed the issue r a t i o n a l l y (23 respondents or 15% of t o t a l sample); 2) blocked communication (16; 10%); 3) became emotional (11; 7%); 4) verbally abusive (11; 7%); and 5) miscellaneous (8; 5%). A series of chi-square analyses were conducted to determine i f r e c i p i e n t s responded d i f f e r e n t i a l l y depending on t h e i r r e l a t i o n s h i p with providers. Each of the f i v e categories was analyzed separately, such that the presence and absence of each response (e.g., "discussed the issue r a t i o n a l l y " ) was cross-tabulated with the three l e v e l s of r e l a t i o n . None of the analyses achieved s i g n i f i c a n c e ( a l l p's > .10). Discussion The present study investigated the provision of h e l p f u l and unhelpful actions as a function of type of r e l a t i o n s h i p between rec i p i e n t s and providers. Results indicate that, although unhelpful or upsetting exchanges may be offered by v i r t u a l l y anybody, re c i p i e n t s spontaneously said that r e l a t i v e s (33% of providers) and close friends (26% of providers) offered the most unhelpful actions. These findings are consistent with those of past research (Dakof & Taylor; Lehman et a l . , 1986). In contrast, when the t o t a l number of unhelpful actions was obtained by summing closed-ended items from the SSBQ, there were no differences across groups of providers (e.g., r e l a t i v e s , close others, and more distant others). Thus, although close . others offered p a r t i c u l a r l y unhelpful or upsetting actions to re c i p i e n t s , the former were o v e r a l l no more l i k e l y to o f f e r unsupportive actions than were more distant others. Such a finding highlights the fact that those who are close to us are perceived as making a sim i l a r number of c r i t i c a l comments and 6 0 behaving i n the same annoying way as do mere acquaintances and strangers. This assertion may not be too surprising, however, i f one considers the fact that close others spend more time with us than more distant others and, therefore, have a greater opportunity to say or do things that are unappreciated. Despite the fact that respondents had l i t t l e d i f f i c u l t y reporting others' unhelpful actions, the preponderance of behaviors were perceived to be h e l p f u l . The t o t a l number of h e l p f u l actions varied across r e l a t i o n s h i p type such that close others were perceived as o f f e r i n g more h e l p f u l actions than were distant others. This difference in provision of h e l p f u l (as opposed to unhelpful) actions may be important i n accounting for the fact that respondents offered more benign a t t r i b u t i o n s for close others than for distant others. Results suggest that people involved i n relationships that are characterized by fewer p o s i t i v e behaviors w i l l be less l i k e l y to o f f e r benign a t t r i b u t i o n s , and more l i k e l y to o f f e r ones that emphasize blame. Moreover, i n relationships characterized by the absence of p o s i t i v e aspects, people may interpret ambiguous situations p e j o r a t i v e l y by emphasizing the negative aspects of s o c i a l exchanges when p o s i t i v e a t t r i b u t i o n s are also possible. This i s p r e c i s e l y what has been found i n the a t t r i b u t i o n l i t e r a t u r e with m a r i t a l l y distressed couples (Schmaling et a l . , 1989). Benign a t t r i b u t i o n s may be offered to close others because negative actions are interpreted against a backdrop of primarily p o s i t i v e exchanges. The prediction that close others d i f f e r from r e l a t i v e s i n terms of r e c i p i e n t s ' perceptions of h e l p f u l actions and a t t r i b u t i o n s for unhelpful actions received mixed support. 61 Although the mean differences were consistent with predictions, the two groups were not s t a t i s t i c a l l y distinguishable. Perhaps t h i s f i nding i s due to the fact that the "close others" group comprised a f a i r l y heterogeneous subset of in d i v i d u a l s . Thus, i t included partners and close friends, two groups that have been found to d i f f e r i n terms of the o v e r a l l amount of support provided (Primomo et a l . , 1990). A l t e r n a t i v e l y , many of the measures were developed s p e c i f i c a l l y for t h i s project, and may not have been sens i t i v e enough to detect such differences. Consistent with the re s u l t s of Study 1, few par t i c i p a n t s i n the present study indicated that they responded to the unhelpful actions. Thus, even when providers said or did things that were not appreciated by reci p i e n t s , r e c i p i e n t s t y p i c a l l y did not inform the provider that t h e i r action was unhelpful. Recipients might have thought that, by focusing on the negative, providers would f e e l that they were being overly c r i t i c a l , and did not recognize the p o s i t i v e things that the provider had done. It i s possible that, even though unhelpful actions are offered, r e c i p i e n t s do not believe that such interactions a f f e c t the long-term s t a b i l i t y of the rel a t i o n s h i p . Along t h i s same l i n e of reasoning, r e c i p i e n t s may perceive unhelpful actions to be f l e e t i n g and isolated , and not l i k e l y to occur i n the future. If the perceived costs of saying or doing something to the provider outweigh the perceived benefits, then r e c i p i e n t s may decide against having a discussion with providers (Hobfoll, 1989) . From t h i s point of view, i t i s neither necessary nor perhaps even desirable for recipien t s to indicate t h e i r discontent. In other instances, however, i t may be important for r e c i p i e n t s to respond d i r e c t l y to providers' unhelpful actions. This i s e s p e c i a l l y l i k e l y to be true when s i m i l a r sorts of negative exchanges occur repeatedly, and are expected to continue i f something i s not said or done. Recipients may also benefit from in d i c a t i n g t h e i r discontent i f the upsetting action i s s u f f i c i e n t l y troublesome to impede r e l a t i o n s h i p q u a l i t y . In Study 2, r e c i p i e n t s ' responses to the unhelpful actions did not vary according to the type of r e l a t i o n s h i p with providers. It i s plausible that these findings are due to the f a c t that few participants (41% of the sample) answered a f f i r m a t i v e l y to the response question. When the responses were coded into categories, there were too few c e l l s represented by enough observations for r e l i a b l e e f f e c t s to be found. Thus, i t was not possible i n t h i s study to t e s t adequately whether part i c i p a n t s said and did d i f f e r e n t things to providers as a function of type of r e l a t i o n s h i p with them. 63 Chapter 4 Study 3 The f i r s t two studies examined several issues related to he l p f u l and unhelpful actions directed toward a r e c i p i e n t who i s coping with one of a number of s t r e s s f u l l i f e events. Although some behaviors i n Studies 1 and 2 were perceived as h e l p f u l or unhelpful across a broad range of events, others were not. Nonetheless, the sample sizes i n many of the event categories were r e l a t i v e l y small. It i s extremely d i f f i c u l t , i n broad-based studies, to eliminate the problem of small sample sizes within event types without sampling a huge number of respondents. Therefore, Study 3 examines p o s i t i v e and negative exchanges among a sample of rec i p i e n t s experiencing the same l i f e event, namely Myalgic Encephalomyelitis (M.E.). The l i t e r a t u r e on supportive and unsupportive actions provides a useful framework within which to understand s o c i a l exchanges that occur among people with M.E. and those i n t h e i r s o c i a l network. A decision was made to focus on M.E. because i t i s a major health and economic threat (Hyde, 1990). Moreover, very l i t t l e has been written about interpersonal aspects of t h i s i l l n e s s . For example, the only comprehensive s c i e n t i f i c text on the subject includes chapters on immunology, in f e c t i o u s o r i g i n s (e.g., e n t e r o v i r a l and r e t r o v i r a l theories), neurological features, central and peripheral nervous systems, and neuromuscular and cardiac abnormalities (Hyde, Goldstein, & Levine, 1992). Social science researchers who have written about the i l l n e s s have tended to focus on p s y c h i a t r i c diagnoses (Abbey & Garfinkel, 1990; Dutton, 1992), psychopathology (Iger, 64 1992), or neuropsychological abnormalities (Bastien, 1992). To my knowledge, no research has systematically investigated supportive and unsupportive processes i n s o c i a l networks of people with M.E. Although there i s currently no r e l i a b l e method to determine incidence or prevalence rates of M.E., i t i s estimated that between 2 and 10 m i l l i o n North Americans are a f f l i c t e d with the i l l n e s s (Berne, 1992). Other researchers have estimated that there may be 30 to 40 cases of M.E. per every 100,000 indi v i d u a l s i n the general population (Lloyd, Hickie, Broughton, Spencer, & Wakefield, 1990). Many people with the i l l n e s s are undiagnosed or i n c o r r e c t l y diagnosed, i n part because M.E. was only recently given a working d e f i n i t i o n (Holmes et a l . , 1988) and because i t includes a heterogeneous c l u s t e r of symptoms that i s poorly understood by the medical community. Nonetheless, there i s a wide range of public i n t e r e s t in the disorder, exemplified by the large number of books and a r t i c l e s that have appeared i n recent years, and the fact that the Centers for Disease Control receive an estimated 1,000 to 2,000 M.E.-related c a l l s per month (Berne, 1992). M.E. provides a f e r t i l e t e s t i n g ground for the p o t e n t i a l influence of psychological variables associated with the i l l n e s s . Uncertainty exists at a l l stages from diagnosis to treatment. Also, people with M.E. tend not to know how they contracted the i l l n e s s , and may search for causes (Powell, Dolan, & Wessely, 1990). The skepticism about M.E. from professionals and the lay public a l i k e may be conveyed to people with the i l l n e s s , p o t e n t i a l l y leading to resentment or to the i n t e r n a l i z a t i o n of public stereotypes (Weinberg, Louw, & 65 Schomer, 1994). Most importantly perhaps, there i s substantial anecdotal evidence that many actions and statements by others toward the person with M.E. are unappreciated (e.g., Ba z e l l , 1987; Conant, 1990; Feiden, 1990). F i r s t , a description of M.E. and background information about the i l l n e s s w i l l be presented. Next, the f i r s t major class of variables ( i . e . , the types of h e l p f u l and unhelpful actions from s i g n i f i c a n t others) w i l l be outlined and j u s t i f i e d . Then, the second major class of variables ( i . e . , p o t e n t i a l l y important antecedents of supportive and unsupportive actions) w i l l be discussed. For example, personality dimensions of providers and t h e i r possible r e l a t i o n s with h e l p f u l and unhelpful actions w i l l be reviewed. Moreover, perceptions of need for assistance w i l l be outlined. Discrepancies between providers' and r e c i p i e n t s ' perceptions of physical and mental health, and perceived causes (and t h e i r p o t e n t i a l r e l a t i o n s to supportive and unsupportive actions), w i l l also be discussed. Then, factors that may prevent providers from responding i n more e f f e c t i v e ways w i l l be reviewed. F i n a l l y , the t h i r d major class of variables (consequences) w i l l be discussed. In p a r t i c u l a r , the issues of when and how providers became aware that t h e i r actions were unappreciated w i l l be outlined. Description of Myalgic Encephalomyelitis Myalgic Encephalomyelitis (M.E.) i s a term that has emerged i n recent years to describe a c o n s t e l l a t i o n of symptoms of unknown etiology. The syndrome has been variously referred to as Chronic Fatigue Syndrome, Chronic Epstein-Barr Virus Syndrome, Chronic Mononucleosis, Post-Viral Fatigue Syndrome, and Chronic Mononucleosis-like Syndrome. 66 The syndrome was not given a working case d e f i n i t i o n u n t i l 1988. The Centers for Disease Control (CDC), recognizing heterogeneity of the syndrome, proposed rather r e s t r i c t i v e research c r i t e r i a for M.E. diagnosis to ensure that f a l s e p o s i t i v e s were minimized (Holmes et a l . , 1988). In order to meet the CDC c r i t e r i a for M.E., two major c r i t e r i a must be s a t i s f i e d . F i r s t , the disorder must be characterized by "new onset of persistent or relapsing, d e b i l i t a t i n g fatigue or easy f a t i g a b i l i t y i n a person who has no previous h i s t o r y of s i m i l a r symptoms, that does not resolve with bedrest, and that i s severe enough to reduce or impair average d a i l y a c t i v i t y below 50% of the patient's premorbid a c t i v i t y l e v e l for a period of at least 6 months" (p. 388). Second, other conditions that include s i m i l a r symptoms must be ruled out as possible causes. In order to receive a diagnosis of M.E., one must also have 8 or more of the following 11 symptoms: 1) mild fever; 2) sore throat; 3) p a i n f u l lymph nodes; 4) unexplained generalized muscle weakness; 5) muscle discomfort or myalgia; 6) prolonged generalized fatigue a f t e r exercise; 7) generalized headaches; 8) migratory a r t h r a l g i a without j o i n t swelling or redness; 9) neuropsychologic complaints; 10) sleep disturbance, and 11) development of symptoms over a few hours to a few days. A l t e r n a t i v e l y , one may be diagnosed with M.E. i f both of the major c r i t e r i a are s a t i s f i e d , 6 or more of the 11 symptom c r i t e r i a l i s t e d above are evident, and 2 or more of the following 3 physical c r i t e r i a are met. The physical c r i t e r i a , which must be confirmed by a physician on at least two occasions at l e a s t one month apart, include: 1) low-grade fever; 2) nonexudative pharyngitis; and 3) palpable or tender anterior or 67 posterior c e r v i c a l or a x i l l a r y lymph nodes. Background Information About Myalgic Encephalomyelitis The onset of M.E. i s t y p i c a l l y sudden, and the symptoms may be mistaken for those of the f l u or a cold (Cowley, Hagar, & Joseph, 1990). However, unlike less serious i l l n e s s e s , the symptoms p e r s i s t across time. M.E. may begin a f t e r the patient has contracted an infectious i l l n e s s such as the f l u , h e p a t i t i s , bronchitis, mononucleosis, or the Epstein-Barr v i r u s . The modal patient i s a well-educated and r e l a t i v e l y high socio-economic status woman between the ages of 25 and 55 (Brody, 1988). Certain aspects of the i l l n e s s have prompted medical professionals and laypeople a l i k e to consider i t to be a psychological disorder, or nothing more than a somatic presentation of psychological problems. For example, although some patients evidence immunological abnormalities (Buchwald & Komaroff, 1991; Klimas, Salvato, Morgan, & Fletcher, 1990; Krupp, Mendelson, & Friedman, 1991), t h i s i s not always the case (Abbey & Garfinkel, 1990; Jones, 1991), and such deviations from normality do not t y p i c a l l y correlate with symptom severity (Straus, 1988). Si m i l a r l y , although many patients report muscle weakness, abnormal muscle strength and recovery a f t e r a c t i v i t y have not been found (Stokes, Cooper, & Edwards, 1989). Cognitive d i f f i c u l t i e s in the form of attention, concentration, and memory are t y p i c a l l y reported by patients. However, neuropsychological tests have often f a i l e d to substantiate cognitive impairments i n M.E. patients (Grafman, Johnson, J r . , & Scheffers, 1991), and some even indicate that patients do better than age matched controls on neuropsychological tests (Altay et a l . , 1990). 68 Supportive and Unsupportive Actions To my knowledge, there have been no systematic studies conducted on supportive and unsupportive exchanges among people coping with M.E. Therefore, the findings discussed here are based on research from other samples or anecdotal accounts i n the M.E. l i t e r a t u r e . Moreover, most studies on support attempts that succeed and f a i l have been conducted from r e c i p i e n t s ' points of view; few have looked at providers' perspectives. In one of the rare studies that has examined p o t e n t i a l providers' perceptions of supportive actions, Lehman et a l . (1986) f i r s t asked "control" participants how they would comfort and help a f r i e n d i f the close other had l o s t a spouse or c h i l d i n a motor vehicle accident. Then they compared these responses with the bereaved's responses of what they a c t u a l l y found to be h e l p f u l . Providers mentioned that they would engage i n support t a c t i c s that were also frequently mentioned by the bereaved as h e l p f u l . Control respondents reported that they would be there for the victim, that they would express concern, and that they would provide opportunities for discussion of f e e l i n g s . Moreover, po t e n t i a l providers did not indicate that they would engage i n actions considered to be unhelpful by the bereaved. Although Lehman et a l . ' s (1986) study has provided insight into perceptions of he l p f u l exchanges between providers and r e c i p i e n t s , there are some l i m i t a t i o n s . Their control respondents were not actual providers i n the bereaved's s o c i a l network. Thus, the control respondents did not indicate what they had done; they only mentioned what they believe they would do i f a c t u a l l y i n the hypothetical scenario. Some research indicates that what people say they w i l l do and what they 69 ac t u a l l y do may be quite discrepant (Wortman & Lehman, 1985). In order to avoid t h i s problem, providers i n the present study w i l l be close others of people experiencing M.E., a nat u r a l l y occurring s t r e s s f u l l i f e event. Moreover, providers and r e c i p i e n t s w i l l be asked to indicate supportive and unsupportive exchanges that have ac t u a l l y occurred between them. Lehman et a l . (1986) only examined hypothetical providers' views regarding he l p f u l aspects of s o c i a l exchanges. I t seems equally important to consider unhelpful aspects, given the r e l a t i o n s between these l a t t e r exchanges and poor mental functioning (Rook, 1984). Thus, i n the present study, providers w i l l be asked what they said or did that they think was perceived to be h e l p f u l and unhelpful by the r e c i p i e n t (see Antonucci & I s r a e l , 1986, for an example of t h i s methodology with respect to s o c i a l support processes). Persons with M.E. may very well experience p a r t i c u l a r kinds of unhelpful actions by support providers. Negative exchanges are reviewed, along with s p e c i f i c features of the i l l n e s s that render such actions understandable. This discussion i s followed by more detailed accounts of the possible reasons for such dysfunctional interactions. A paucity of research has focused on h e l p f u l and unhelpful actions offered to people with M.E. Nonetheless, anecdotal accounts and case studies are available to suggest some of the important negative exchanges that might occur. Because the l i t e r a t u r e includes few empirical studies, i t i s d i f f i c u l t to ascertain the extent to which experiences of some people with M.E. are shared by others. The present study investigates the unhelpful or upsetting interactions that a s i g n i f i c a n t 70 percentage of people with M.E. have had with providers. If support providers possess p a r t i c u l a r schemata for i l l n e s s or chronic fatigue, then they may compare the physical appearance of the a f f l i c t e d i n d i v i d u a l with t h e i r notion of how, i f they were r e a l l y s u f f e r i n g from a serious i l l n e s s , they should look and behave (Lehman & Hemphill, 1990). I f , as i s often the case with M.E., the r e c i p i e n t ' s physical appearance i s r e l a t i v e l y unaffected, then minimization or denial of i l l n e s s severity by the provider may occur (Lehman et a l . , 1986; Wortman & Lehman, 1985). In fact, people with M.E. have indicated that others often challenge the existence of t h e i r i l l n e s s (Conant, 1990). This may be e s p e c i a l l y l i k e l y i f medical tests are negative, or i f previous medical treatment has been i n e f f e c t i v e (Cowley et a l . , 1990). People with M.E. seem to have a p a r t i c u l a r aversion to p s y c h i a t r i s t s (Abbey & Garfinkel, 1990), and more generally appear i r r i t a t e d by those who suggest that there may be a psychological component to the disorder. Patients may be offended by being diagnosed with depression because they often assume that i t implies that t h e i r complaints are imaginary or " a l l i n the mind" (Kendell, 1991). T r i v i a l i z a t i o n of the i l l n e s s i s i m p l i c i t i n terms such as "affluenza" or "the yuppie plague" that have been used to describe M.E. (Bazell, 1987). The tendency of providers toward d i s b e l i e f and minimization may be exacerbated by the fact that symptoms fluctuate across time; one day the person with M.E. may f e e l quite well, while at other times they may f e e l p a r t i c u l a r l y i l l and unable to do much of anything (Hyde, Bastien, & Jain, 1992). Providers may assume that M.E. sufferers are not r e a l l y i l l because they see the 71 patient only at c e r t a i n times. Those with M.E. often f e e l e n t i r e l y drained of energy, unable to s o c i a l i z e with others. However, at other times they may f e e l well enough to go out with t h e i r friends. Potential support providers, then, are l i k e l y to have a biased sample, only seeing patients when they are f e e l i n g t h e i r best (Lehman & Hemphill, 1990). If providers assume that t h i s i s i n d i c a t i v e of how people with M.E. function on a d a i l y basis, they may assume that patients are exaggerating t h e i r symptoms or "acting i l l " for secondary gain (Fisher, 1989). One of the major themes of most of the s e l f - h e l p l i t e r a t u r e i s the lack of recognition of i l l n e s s by r e l a t i v e s , friends, and professionals (Maclntyre, 1989). Even p o t e n t i a l support providers who accept the severity of the i l l n e s s may nevertheless engage in unhelpful actions. Some indi v i d u a l s , for instance, may be f e a r f u l that the i l l n e s s i s contagious, and may avoid the M.E. sufferer (Wortman.& Lehman, 1985) . Such a b e l i e f may lead to reduced physical contact (including k i s s i n g , hugging, touching) and increased distance (Conant, 1990). The u n s o l i c i t e d giving of advice may also be seen as p a r t i c u l a r l y unhelpful by r e c i p i e n t s (Lehman et a l . , 1986) . For example, providers may suggest coping with the i l l n e s s through the use of various strategies such as ingesting vitamins, development of a p o s i t i v e mental attitude, stress reduction, and r e l i g i o u s guidance (Conant, 1990). Some providers may indicate that bedrest i s needed, whereas others may consider avoidance of physical a c t i v i t y to be counterproductive (Butler, Chalder, Ron, & Wessely, 1991). Because M.E. i s a chronic i l l n e s s , coping with i t e n t a i l s an a l t e r a t i o n in the way in which sufferers and families structure t h e i r l i v e s and the expectations they hold for the future. Many researchers believe that defining recovery as a return to premorbid levels of functioning i s u n r e a l i s t i c (Peel, 1991). Although those su f f e r i n g from M.E. may note improvement, i t i s often incomplete, and recovery comes slowly (Feiden, 1990). Even when a more l i b e r a l d e f i n i t i o n of recovery i s adopted, some people with M.E. remain i l l years a f t e r diagnosis (Komaroff & Buchwald, 1991). Unhelpful actions as perceived by the person with M.E. may focus on f a i l u r e of s i g n i f i c a n t others to accept the r e a l i t y that accommodations to the i l l n e s s often e n t a i l a permanent change in the way in which d a i l y routines are structured. If M.E. i s viewed as merely a temporary hassle, rather than a long-term d e b i l i t a t i n g i l l n e s s , providers may expect and encourage recovery (Wortman & Lehman, 1985) when the person with M.E. i s s t i l l unable to do much of what he or she formerly did. Antecedents Now that h e l p f u l and unhelpful exchanges have been reviewed, antecedents (or pre-behavioral support processes) w i l l be discussed (see Figure 1). These are factors that precede supportive and unsupportive actions, and that are hypothesized to be important in leading to t h e i r occurrence. Interpersonal t r a i t s and t h e i r potential r e l a t i o n s to supportive and unsupportive actions. The f i r s t antecedent that w i l l be examined i s personality, or the r e l a t i v e l y enduring aspects of indi v i d u a l s that may influence.supportive interactions (see e.g. Sarason, Sarason, & Shearin, 1986, for an exception). Few researchers have attempted to integrate the s o c i a l support l i t e r a t u r e with that concerning dimensions of personality as 73 predictors of s o c i a l behavior. Although l i t t l e comprehensive research of t h i s kind has been car r i e d out, i s o l a t e d personality dimensions have been associated with general measures of s o c i a l support. For example, investigators have noted that indiv i d u a l s who perceive themselves as a f f i l i a t i v e (e.g., high Extraversion) tend to be more s a t i s f i e d with t h e i r support networks than those low i n a f f i l i a t i o n (Henderson, Byrne, & Duncan-Jones, 1981). Si m i l a r l y , a f f i l i a t i v e tendencies are related to an exchange of supportive actions and large s o c i a l networks (Connell & D'Augelli, 1990). To date, the importance of i n d i v i d u a l differences has been considered primarily with respect to s p e c i f i c r e c i p i e n t c h a r a c t e r i s t i c s that have been posited to influence others' responses toward such individuals (e.g., S i l v e r et a l . , 1990; Trobst, C o l l i n s , & Embree, 1994). In the present study, key personality t r a i t s of providers and r e c i p i e n t s w i l l be associated with views regarding how supportive or unsupportive providers' actions are considered to be. Research examining the importance of personality i n various contexts has previously been d i f f i c u l t because of the lack of agreement regarding which dimensions to include, and the paucity of psychometrically acceptable measures. As a r e s u l t , past studies have been rather i d i o s y n c r a t i c . Recent research in personality psychology has provided strong evidence that f i v e robust personality dimensions explain differences i n the ways people behave (e.g., Digman & Inouye, 1986; McCrae & Costa, 1987; Norman, 1963). These dimensions comprise the f i v e - f a c t o r model and consist of Extraversion, Agreeableness, Conscientiousness, Neuroticism, and Openness to Experience (Digman & Takemoto-Chock, 1981). One of the goals of Study 3 i s to examine whether these personality dimensions of providers and r e c i p i e n t s are associated with s p e c i f i c h e l p f u l and unhelpful exchanges. Individuals with cert a i n dispositions have been shown to provide c e r t a i n forms of supportive and unsupportive actions. For example, extraverts attempt to r e l a t e with others (Thorne, 1987) and share t h e i r own experiences. Because of t h e i r tendency toward assertion, dominance, and self-confidence (Digman & Inouye, 1986), extraverts may be e s p e c i a l l y l i k e l y to provide active forms of support, such as getting r e c i p i e n t s to t a l k about t h e i r problems (Wiggins & Trobst, i n press). However, Extraversion i s also associated with unfavorable c h a r a c t e r i s t i c s , and interpersonal problems revolve around t h e i r dominance or intrusiveness (Alden et a l . , 1990). The second factor of personality, Agreeableness (Norman, 1963), i s also known as the Nurturance dimension on the interpersonal circumplex (Trapnell & Wiggins, 1990). Agreeable in d i v i d u a l s tend to be considerate, sympathetic, and caring (Digman & Inouye, 1986; Wiggins, 1995). More so than other personality dimensions, Agreeableness i s apt to be associated with various forms of emotional support. For example, agreeable providers may hug recipi e n t s (Wiggins & Trobst, i n press) and give them the opportunity to v e n t i l a t e (Lehman et a l . , 1986). Because of t h e i r h e l p f u l and supportive nature, agreeable indivi d u a l s are expected to o f f e r few unhelpful actions. The f i r s t two factors define the arena within which interpersonal transactions occur (Wiggins, 1979), and i t i s for t h i s reason that s o c i a l support, c l e a r l y interpersonal i n 75 nature, i s well captured by the circumplex model of personality. The other three factors of the f i v e - f a c t o r model (Conscientiousness, Neuroticism, and Openness to Experience), i n contrast, include a f f e c t i v e , e x p e r i e n t i a l and motivational t r a i t s i n addition to interpersonal ones (McCrae & Costa, 1989). As such, there has been less research conducted on the r e l a t i o n s between these other factors and interpersonal problems. Therefore, predictions regarding the remaining t r a i t s i n r e l a t i o n to supportive and unsupportive actions are offered more te n t a t i v e l y . The t h i r d factor of the f i v e - f a c t o r model, Conscientiousness, comprises planning, persistence, neatness, and carefulness (Digman & Inouye, 1986; Norman, 1963). To the extent that highly conscientious people are also more r e l i a b l e and industrious, they may o f f e r a variety of h e l p f u l actions, such as those revolving around the use of reason or verbal forms of support (Buss, 1992). In contrast, those low on Conscientiousness tend to be unreliable and disorganized, and may not provide he l p f u l support because they do not follow through with tasks. Thus, i t may be that providers low i n Conscientiousness are unsupportive not because of the unhelpful things that they do, but because of the h e l p f u l things that they f a i l to do. The fourth factor of personality, Emotional S t a b i l i t y or Neuroticism (Norman, 1963), involves a strong component of anxiety (Wiggins, 1968). Those low on emotional s t a b i l i t y are apt to be concerned about t h e i r own needs, and may be unable to provide e f f e c t i v e support to others. Accordingly, such indivi d u a l s may do things in order to maintain t h e i r own emotional equilibrium (Gottlieb & Wagner, 1991), and may be unable to help the r e c i p i e n t ,cope with his or her d i s t r e s s . I t has been found that those high on neuroticism tend to pout, sulk, or whine u n t i l t h e i r s i g n i f i c a n t other stops doing something they perceive as aversive (Buss, 1992; Buss, Gomes, Higgins, & Lauterbach, 1987). With respect to unhelpful actions, those high on neuroticism may appear self-centered and, because they wish to terminate t h e i r own emotional discomfort, may distance themselves from the problems of r e c i p i e n t s (Lehman et a l . , 1986; Lehman & Hemphill, 1990). Moreover, those high on Neuroticism may be c r i t i c a l toward providers i n need of t h e i r assistance (Wiggins & Trobst, in press). In contrast, emotional s t a b i l i t y enables providers to attend to the concerns of r e c i p i e n t s . Therefore, providers low on Neuroticism are hypothesized to be nurturant and provide adequate emotional support (Dakof & Taylor, 1990; Lehman et a l . , 1986). The f i f t h factor, Openness to Experience (Digman & Takemoto-Chock, 1981; McCrae & Costa, 1985), i s associated with knowledgeability, perceptiveness, and imaginativeness (Digman & Inouye, 1986). Providers high on Openness may help r e c i p i e n t s explore thoughts and feelings about t h e i r s t r e s s f u l s i t u a t i o n (Dakof & Taylor, 1990; Lazarus & Folkman, 1984). Although such an or i e n t a t i o n i s often appreciated, i t i s conceivable that those high on Openness to Experience may also o f f e r actions that are unappreciated by re c i p i e n t s , such as disseminating unwanted information or viewpoints (Lehman & Hemphill, 1990; Lehman et a l . , 1986). 77 Perceived need for assistance. The vast majority of data on h e l p f u l and unhelpful actions has been c o l l e c t e d from r e c i p i e n t s (e.g., Dakof & Taylor, 1990; Lehman & Hemphill, 1990). Few studies have examined providers' perceptions of the support process (House, 1981). Such research i s important, given that providers are l i k e l y to respond toward r e c i p i e n t s according to perception of need. For example, i f providers believe that r e c i p i e n t s want tangible assistance, then that i s what they are l i k e l y to provide. Moreover, exclusive r e l i a n c e on r e c i p i e n t s e l f - r e p o r t i s inadequate for a comprehensive understanding of support processes, given that s o c i a l interactions are a dyadic process involving both the provider and r e c i p i e n t (Dunkel-Schetter & Skokan, 1990). The following discussion of providers' perceptions emphasizes the importance of how providers become aware that re c i p i e n t s need assistance. The f i r s t step to engaging in supportive behaviors i s for the p o t e n t i a l provider to perceive the r e c i p i e n t ' s need (Latane & Darley, 1970). As discussed e a r l i e r , M.E. i s an i l l n e s s with few observable symptoms or obvious signs that the person requires assistance. This ambiguity may be an important determinant of a f a i l u r e to o f f e r assistance (Clark & Word, 1972). If the p o t e n t i a l provider does not believe the r e c i p i e n t requires help, then assistance i s u n l i k e l y to be forthcoming or may be inadequate. In t h i s study, respondents w i l l be asked to think back to the most important time that r e c i p i e n t s needed providers' help, and indicate what assistance the r e c i p i e n t needed at that time. It i s anticipated that many of the categories reported for the "most h e l p f u l actions" question w i l l be reported here, such as 78 various forms of emotional and tangible support. However, given that respondents w i l l be mentioning the most important assistance needed, more intr u s i v e forms of help due to physical l i m i t a t i o n s imposed by the disorder are also expected. For example, parti c i p a n t s may become immobilized to the extent that they need assistance revolving around basic issues of personal care, such as bathing and feeding (Barrows, 1995). Then, re c i p i e n t s w i l l be asked to report whether or not providers were aware that re c i p i e n t s needed help. Those who answer a f f i r m a t i v e l y w i l l be asked to indicate how they became aware that the person with M .E . needed assistance. There are several possible ways that people may determine i f another needs help. For example, providers may r e l y on verbal indicators, nonverbal signs of d i s t r e s s (such as crying), a l t e r a t i o n s i n behavior (such as the r e c i p i e n t withdrawing from a p a r t i c u l a r s i t u a t i o n ) , and so on. Congruence between providers' and r e c i p i e n t s ' ratings. In Study 3, both the person with M .E . and a s i g n i f i c a n t other (the provider) w i l l rate the M .E . sufferer's psychological and physical symptoms. People with M .E . w i l l be asked to rate how they are f e e l i n g , thinking, and behaving, and providers ( t y p i c a l l y a spouse or close friend) w i l l be asked to o f f e r s i m i l a r ratings for how they believe the r e c i p i e n t i s doing. Several studies have examined the r e l a t i o n s between s e l f and other ratings of a target individual's behavior (e.g., Achenbach, McConaughy, & Howell, 1987; Marsh, Barnes, & Hocevar, 1985; Piedmont, 1994). However, only a small subset of these studies has investigated such ratings among individ u a l s experiencing physical i l l n e s s . A notable exception i s Gray, 79 Brogan, and Kutner (1985), who studied i n d i v i d u a l s with end-stage renal disease (ESRD) and t h e i r spouses, and found congruence on 10 out of 13 measures of l i f e areas (e.g., s e l f -care, family r e l a t i o n s h i p , f i n a n c i a l s i t u a t i o n , work, l e i s u r e time). To my knowledge, no research has investigated the congruence of physical and psychological functioning, or ascertained how discrepancies between such perceptions are relat e d to unhelpful actions. Although some previous research has indicated that s i g n i f i c a n t others tend to believe that persons with cancer (e.g. Baider & S a r e l l , 1984) and adolescent ESRD (Wright, Brownbridge, Fi e l d i n g , & Stratton, 1990) are doing worse than the patients themselves report, discussions of maximization or catastrophizing are v i r t u a l l y absent i n the M.E. l i t e r a t u r e . Instead, there are a larger number of reports emphasizing minimization or t r i v i a l i z a t i o n of the i l l n e s s by professionals and laypeople a l i k e (Feiden, 1990; Shepherd, 1990). Therefore, i t i s anticipated that people with M.E. w i l l report more health problems than w i l l t h e i r s i g n i f i c a n t others. Many M.E. symptoms are largely unobservable by others (e.g., myalgia, v i s u a l disturbances, fatigue) and d i f f i c u l t to valida t e externally (Fisher, 1989; Lehman & Hemphill, 1990). Nonetheless, such symptoms are inner states that are e s p e c i a l l y s a l i e n t from the re c i p i e n t ' s own perspective (Funder, 1980; Funder & Colvin, 1988). Therefore, i t i s predicted that s i g n i f i c a n t others w i l l underestimate the type and number of physical concerns r e l a t i v e to people who have the i l l n e s s . The lack of observable signs of disease among people with M.E. may stand i n stark contrast to poten t i a l providers' b e l i e f s 80 about what i t i s l i k e to be i l l (Lehman & Hemphill, 1990). For example, providers may believe that i l l n e s s i s characterized by observable manifestations of pain (such as f a c i a l grimacing, impaired g a i t ) , the use of canes or other mobility aids, lack of muscle coordination (such as t i c s , tremors, or choreiform movements), gross impairments i n speech, loss of limbs, or disfigurement. Evidence of " r e a l " i l l n e s s may also be r e f l e c t e d i n outcomes of treatment. For example, patients who have received chemotherapy may lose t h e i r hair, and following operations people have scars. With M.E., however, most of the symptoms such as fatigue and generalized muscle weakness are unobservable and may hence seem rather benign; we a l l f e e l these ways at times. In a study in which the importance of various symptoms was rated, " f e e l i n g weak a l l over for much of the time" was considered to be "very serious" by only 6% of p s y c h i a t r i s t s and 9% of physicians (Dohrenwend & Crandell, 1970). Thus, for example, one of the main symptoms of M.E. was not considered to be p a r t i c u l a r l y problematic by many professionals. Because of the p o t e n t i a l importance of the d i s t i n c t i o n between d i f f e r e n t types of M.E. symptoms, observable and unobservable physical symptoms w i l l be examined separately. I t i s predicted that providers who believe that respondents with M.E. are experiencing observable and unobservable physical symptoms w i l l also report that they o f f e r more supportive behaviors and less unsupportive actions than close others who believe r e c i p i e n t s are experiencing fewer symptoms. Discrepancies between providers and r e c i p i e n t s w i l l be calculated, and symptoms w i l l be related to supportive and unsupportive behaviors. It i s expected that greater 81 discrepancies between providers and re c i p i e n t s ( i . e . , providers who believe t h e i r s i g n i f i c a n t others are doing much better than re c i p i e n t s themselves believe) w i l l be associated with more unsupportive actions and fewer supportive actions by providers from the r e c i p i e n t s ' points of view. By underestimating the physical symptoms that re c i p i e n t s experience, providers w i l l l i k e l y overestimate the things that people with M.E. are able to accomplish, and w i l l therefore be less l i k e l y to provide e f f e c t i v e assistance. Study 3 seeks to investigate congruence between providers' and r e c i p i e n t s ' perceptions regarding emotional as well as physical health. The importance of investigating psychological symptoms i s indicated by the fact that depression i s commonly experienced by people with M.E. (see Dutton, 1992, for a review). Two p o s s i b i l i t i e s may be offered with respect to perceived psychological symptoms as rated by those with M.E. and s i g n i f i c a n t others. On the one hand, others may overestimate the extent of psychological symptoms i f they believe that M.E. i s an emotionally-caused disorder (Powell et a l . , 1990; Wessely & Powell, 1989) that i s characterized by psychological complaints. Providers may f i l t e r out information inconsistent with t h e i r schemata and overemphasize psychological symptoms. On the other hand, providers may underestimate the extent of psychological symptomatology that people with M.E. experience i f they are r e l y i n g on observability of symptoms (Funder, 1980; Funder & Colvin, 1988; Lehman & Hemphill, 1990), because many of these symptoms (e.g., nervousness, f e e l i n g lonely, lack of in t e r e s t i n things, feelings of worthlessness) are not r e a d i l y apparent merely by looking at the respondents 82 Two p o s s i b i l i t i e s suggest themselves with respect to re l a t i o n s between psychological symptoms and h e l p f u l and unhelpful actions. On the one hand, providers may o f f e r more supportive actions and fewer unsupportive actions i f they believe that respondents with M.E. are experiencing psychological symptoms because of the perceived need for assistance due to stresses and l i m i t a t i o n s imposed by M.E. On the other hand, providers may indicate that they o f f e r fewer supportive actions and more unsupportive actions i f the presence of psychological symptoms i s thought to be due to lack of perceived e f f o r t on behalf of re c i p i e n t s or i s considered to be aversive by providers. Because of the d i f f e r e n t ways i n which psychological symptoms may be perceived by providers, no predictions are offered with respect to the r e l a t i o n s of discrepancies between providers' and r e c i p i e n t s ' ratings of psychological symptoms and supportive and unsupportive behaviors. Perceived causes of M.E. Although research has indicated that indiv i d u a l s with M.E. tend to at t r i b u t e t h e i r i l l n e s s to physical causes (e.g., Powell, Dolan, & Wessely, 1990; Wessely & Powell, 1989), very l i t t l e i s known about the views of support providers, and the re l a t i o n s between such views and reported behaviors. In the present study, providers w i l l be asked about t h e i r views regarding causes of M.E., including psychological, physical, environmental, and. b i o l o g i c a l factors. Then, the re l a t i o n s between these views and supportive and unsupportive behaviors w i l l be assessed. Previous research has indicated that providers' views of the cause of an i l l n e s s may a l t e r t h e i r behavior toward 83 indiv i d u a l s in need. When people believe that the cause of an i l l n e s s i s controllable, the r e s u l t may be anger and reluctance to help (Schmidt & Weiner, 1988; Weiner, 1985; Weiner et a l . , 1988). M.E. i s associated with psychological symptoms, most notably depression (Abbey & Garfinkel, 1990; Blakely et a l . , 1991; Grafman et a l . , 1991; Manu, Matthews, & Lane, 1988), which may largely be seen as c o n t r o l l a b l e . To the extent that t h i s i s true, providers may believe that the a f f l i c t e d person i s not t r y i n g hard enough to get better and may encourage recovery (Lehman et a l . , 1986). Furthermore, such providers may believe that the person with M.E. i s malingering i n order to obtain sympathy, or avoid unpleasant tasks (such as working or doing household chores), and may t r y to force them to do things that the r e c i p i e n t s do not f e e l well enough to do. A study conducted by Hooley, Richters, Weintraub, and Neale (1987) supports the notion that patients with symptoms believed by s i g n i f i c a n t others to be influenced by an unwillingness of the patient to engage in appropriate behaviors had lower l e v e l s of marital s a t i s f a c t i o n compared with patients with symptoms thought to be illness-caused. To put i t another way, r e l a t i o n s h i p q u a l i t y seems to be negatively affected when the r e c i p i e n t ' s symptoms are viewed as i n t e n t i o n a l and voluntary. According to t h i s view, i t i s only because s u f f i c i e n t psychological control i s not being exercised that amelioration of symptoms has not been achieved. Based on t h i s reasoning, i t i s anticipated that providers who believe M.E. i s primarily due to psychological causes w i l l o f f e r fewer supportive actions, and engage i n more unsupportive actions toward the person with M.E., than those who believe M.E. i s less s i g n i f i c a n t l y due to 84 psychological causes. Constraints. Given that unsupportive actions have been offered and received, one may ask: Why did the provider say or do the unhelpful things he or she did? At present, data are only ava i l a b l e from the r e c i p i e n t ' s point of view. For example, Lehman and Hemphill (1990) asked MS patients why they believe unhelpful actions were performed by t h e i r support network members. A substantial number gave responses that absolved the provider of blame for his or her actions. That i s , r e c i p i e n t s offered benign a t t r i b u t i o n s such as the b e l i e f that the provider lacked knowledge or understanding regarding the i l l n e s s . This finding was r e p l i c a t e d in Studies 1 and 2. Although r e c i p i e n t s in past research tended to believe that providers meant them no harm, i t i s not clear what providers think about t h i s issue. Do providers believe they did or said unhelpful things because they lacked an understanding of what to do? Or do they think that they responded i n e f f e c t i v e l y because of network stress (Eckenrode & Gore, 1981), interpersonal anxiety (Wortman & Lehman, 1985), expectancy of negative consequences (Fichten & Bourdon, 1986), additional stressors (Holmes & Rahe, 1967), or for other reasons? To address t h i s question, providers w i l l be asked to indicate why they said or did the things that they thought r e c i p i e n t s perceived as unhelpful. Their responses w i l l be compared with those of r e c i p i e n t s . In order to obtain a more d i r e c t assessment of impediments to e f f e c t i v e action, providers w i l l be asked what they think prevented them from responding in more e f f e c t i v e ways, a strategy that w i l l guide participants to think about factors 85 that may have contributed to the unhelpful i n t e r a c t i o n . I d e n t i f i c a t i o n of impediments i s important because providers may of f e r optimal support only when they are w i l l i n g and able to overcome d i f f i c u l t i e s to help r e c i p i e n t s . Potential impediments to e f f e c t i v e action include lack of perceived need, anxiety, and ignorance about i l l n e s s and i t s consequences (Lehman & Hemphill, 1990; Peters-Golden, 1982). Also, even i f providers think they know what i s wanted, they may f e e l unable to o f f e r i t because of a s k i l l s d e f i c i t . For example, providers may know that r e c i p i e n t s wish to ta l k about t h e i r i l l n e s s (Lehman et a l . , 1986), yet r e f r a i n from doing so because they f e e l poorly equipped to engage in such a discussion. Other impediments to e f f e c t i v e action include disagreement with r e c i p i e n t s regarding what i s act u a l l y h e l p f u l , lack of motivation to a s s i s t the person, lack of resources such as time or money (Darley & Batson, 1973; Hobfoll, 1989), and discrepant coping s t y l e s of providers and rec i p i e n t s (Lane & Hobfoll, 1992). For example, an i n d i v i d u a l ' s strategies to cope with a stressor may f a c i l i t a t e , c o n s t r i c t , or i n t e r f e r e with coping e f f o r t s of close others which, i n turn, may influence the ind i v i d u a l ' s appraisals and attempts to cope (DeLongis & O'Brien, 1990; O'Brien & DeLongis, i n press). Consequences The consequences of supportive and unsupportive actions, or those factors that follow h e l p f u l and unhelpful behaviors, w i l l be reviewed here. 86 Awareness that actions were unappreciated. Although much previous research has indicated that people coping with s t r e s s f u l l i f e events report that those in t h e i r support network may do or say things that are unhelpful (e.g., Dakof & Taylor, 1990; Davidowitz & Myrick, 1984; Davis, Brickman, & Baker, 1991; Lehman et a l . , 1986; Wortman & Lehman, 1985), i t i s unclear to what extent, i f at a l l , providers recognize that t h e i r actions are unappreciated. In order to gain a better understanding of the recognition of the unhelpfulness of providers' actions, respondents w i l l be asked when and how they became aware that the things providers said or did were viewed as unhelpful by the r e c i p i e n t . The former issue has not been addressed i n previous research, and i s important because i t may o f f e r some clues regarding ways in which unsupportive actions and t h e i r consequences unfold. For instance, do providers recognize immediately that t h e i r actions are unappreciated, or do they figure i t out only a f t e r r e f l e c t i n g on the exchange? More detailed information w i l l be gathered by asking how providers became aware that t h e i r actions were unhelpful. The ava i l a b l e data suggest that providers may not be aware that t h e i r actions have been unhelpful. For example, Studies 1 and 2 indicated that a preponderance of r e c i p i e n t s do not mention to providers that the l a t t e r ' s behaviors were unhelpful, perhaps contributing to a lack of awareness of the problems inherent i n the interactions. On the other hand, some r e c i p i e n t s do indicate t h e i r d i s s a t i s f a c t i o n through discussion or even verbal abuse directed toward the provider. Moreover, providers may r e l y on nonverbal cues (Siegman & Feldstein, 1987; Weiner et a l . , 1972) such as f a c i a l gestures or emotional d i f f i c u l t i e s 87 that are inherent i n unpleasant exchanges (Wortman & Lehman, 1985) to determine that t h e i r actions were not appreciated by the r e c i p i e n t . Issues to be Explored i n Study 3 1. ) People with M.E. w i l l report unhelpful actions that involve minimization, avoidance, and giving advice. 2. ) Investigate r e l a t i o n s between the Big Five personality dimensions and supportive and unsupportive actions. 3. ) Investigate how providers became aware that r e c i p i e n t s needed assistance. 4. ) Greater discrepancies between providers and r e c i p i e n t s with respect to assumptions about symptoms experienced by the person with M.E. w i l l be related to more unhelpful actions and fewer h e l p f u l actions by providers from the r e c i p i e n t s ' points of view. 5. ) Providers who emphasize psychological causes of M.E. w i l l o f f e r more unsupportive actions and fewer supportive actions than providers who emphasize organic causes. 6. ) Investigate constraints (impediments to e f f e c t i v e action) such as a t t r i b u t i o n s for unhelpful actions, and factors that prevented providers from responding i n more e f f e c t i v e ways. 7. ) Investigate how and when providers became aware that t h e i r actions were unappreciated. Method Inclusion i n Study/Assessment of M.E. M.E. i s an i l l n e s s with a heterogeneous group of symptoms. The cause i s unknown, and currently there i s no te s t which accurately ascertains whether or not a patient suffers from M.E. As a r e s u l t , one problem that must be addressed i n t h i s research 88 i s how to obtain a group of rec i p i e n t s who suffer from M.E. and not merely chronic fatigue (Dutton, 1992). This problem was addressed i n two ways. F i r s t , p o t e n t i a l respondents were asked i f they were diagnosed with M.E. by a medical professional, and i f so, who made the diagnosis. Because of c o n f i d e n t i a l i t y , no attempt was made to confirm the diagnosis. Second, i n order to obtain more deta i l e d information regarding symptomatology, respondents were given, i n lay language, c r i t e r i a of M.E. developed by the Centers for Disease Control (CDC; Holmes et a l . , 1988). A more r e s t r i c t i v e i n c l u s i o n of M.E. patients was obtained here than i s suggested by the CDC. This i s because only people who s a t i s f y the major c r i t e r i o n and at least eight symptom c r i t e r i a were included i n the present study. According to the CDC, inc l u s i o n i n research may be made as long as the patient s a t i s f i e s s i x of the symptom c r i t e r i a , i f at least two out of three of the physical c r i t e r i a are simultaneously met. However, the physical c r i t e r i a need to be obtained by a physician on two separate occasions. As most patients are l i k e l y unaware of whether these physical c r i t e r i a were assessed by t h e i r family physician or s p e c i a l i s t , only patients who met the former c r i t e r i a (major c r i t e r i o n and at least eight symptom c r i t e r i a ) were included. I t i s important to i d e n t i f y only those people whose symptoms occur as a r e s u l t of M.E. Therefore, p a r t i c i p a n t s were asked to indicate only those things that they have experienced since the onset of t h e i r i l l n e s s . In sum, respondents were included i n the study only i f they (1) were formally diagnosed by a health professional and (2) currently met the CDC c r i t e r i a for M.E. 89 Procedure This study was conducted i n cooperation with (1) an Infectious Diseases s p e c i a l i s t in Vancouver (Dr. Grant Stiver) and (2) the Myalgic Encephalomyelitis Society of B r i t i s h Columbia (MEBC). The s p e c i a l i s t (who provides diagnostic and treatment services) i n v i t e d his patients with M.E. to pa r t i c i p a t e i n the study. People with the i l l n e s s who indicated a willingness to take part i n the study were put onto a l i s t for the researchers. Greater Vancouver area residents with M.E. were chosen randomly from MEBC's pool of active members and were i n i t i a l l y contacted by l e t t e r describing the study (Appendix 1). The l e t t e r included enough information so that p o t e n t i a l p a r t i c i p a n t s were able to make informed decisions about whether or not to p a r t i c i p a t e . S p e c i f i c a l l y , the l e t t e r indicated how pa r t i c i p a n t s ' names were obtained, the purpose and goals of the study, and information regarding methodology. In addition, the l e t t e r covered issues of c o n f i d e n t i a l i t y , anonymity, and time required for p a r t i c i p a t i o n . The l e t t e r informed respondents that i f they did not contact MEBC's project o f f i c e d e clining an interview within two weeks, an MEBC representative would contact them. One of two MEBC representatives telephoned p o t e n t i a l p a r t i c i p a n t s to ask i f they (1) received the l e t t e r , (2) obtained a diagnosis from a medical professional, (3) and were w i l l i n g to p a r t i c i p a t e i n the study ( i f so, t h e i r names and telephone numbers were passed onto the researchers). Potential p a r t i c i p a n t s were encouraged to contact the researchers d i r e c t l y i f they wanted to t a l k about the study or i t s methodology before making a decision regarding p a r t i c i p a t i o n , or i f they wanted to 9 0 set up an appointment for an interview d i r e c t l y through the researchers. An MEBC representative gave the researchers a l i s t of names and telephone numbers of members who agreed ve r b a l l y to p a r t i c i p a t e . A second telephone c a l l was made, t h i s time by the researchers, to set up an interview date, place, and time (see Appendix 2 for an outline of information that was covered i n the telephone c a l l ) . Participants were asked at what time during the day they tend to f e e l t h e i r best, and interviews were scheduled for that time. Most interviews were scheduled i n the respondents' homes, to increase the chance that respondents would be able to complete the interview. Scripted r e p l i e s to common questions were supplied to interviewers for the phone c a l l (see Appendix 3 ) . If potential p a r t i c i p a n t s indicated that they were married, or in a common-law or other long-term intimate r e l a t i o n s h i p , they were asked i f they would be w i l l i n g to ask t h e i r partner to complete a b r i e f questionnaire as part of the study. If the participant was not involved in such a rel a t i o n s h i p , or did not f e e l comfortable asking t h e i r partner to complete a questionnaire, they were requested to think of someone else who knew them quite well that they would be w i l l i n g to ask. A follow-up telephone c a l l was made before the interview to remind part i c i p a n t s about the appointment, and to check whether or not they were f e e l i n g well enough to take part i n the study that day. When participants were doing poorly, an interview was scheduled for an alternate day. Prior to commencing the interview, each participant read and signed a consent form (see Appendix 4), and was given a second form to keep for t h e i r own records. Respondents were asked for permission to tape-record the interviews i n order to avoid any loss of information, and to ensure that the interviews did not take any longer than was necessary. Because M.E. i s sometimes associated with attention and concentration d i f f i c u l t i e s , p a r t i c i p a n t s were encouraged to ask interviewers to repeat questions i f necessary. Also, respondents were t o l d that they could ask for elaboration i f they were not sure what the question was t r y i n g to assess, and that they could skip any questions in the interview for any reason. Interviews were conducted by three graduate students and twelve undergraduate research assistants (see Appendix 5 for M.E. interview). At the conclusion of the interview, each p a r t i c i p a n t was given a package containing two questionnaires. One questionnaire was to be completed by the person with M.E. (see Appendix 6), and the second questionnaire was to be completed by a close other. Questionnaires included self-addressed stamped envelopes to be mailed to the project o f f i c e . Participants were given two UBC keychains (one for the person with M.E. and one for the close other) as tokens of appreciation for taking part in the study. Following the interview, a card was sent from the project o f f i c e thanking respondents for p a r t i c i p a t i n g i n the study. If either or both of the questionnaires were not received at the project o f f i c e within one month of the interview date, a reminder l e t t e r was sent to the person with M.E. (see Appendix 7), along with replacement questionnaires. Respondents were asked to pass the close other questionnaire onto someone else who knew them quite well i f the person that they had i n i t i a l l y 92 asked to take part in the study decided not to p a r t i c i p a t e . Participants Membership i n MEBC i s determined by payment of a nominal yearly fee. Because there i s limited information avai l a b l e i n the MEBC database regarding i t s members, i t was necessary to send a l l members a l e t t e r regarding the study, even though i t was recognized that some would not be suitable to p a r t i c i p a t e . One hundred and ninety l e t t e r s were sent out i n four groups of approximately 50 l e t t e r s i n each wave one month apart. Twenty-one p o t e n t i a l respondents (11% of people to whom l e t t e r s were sent) were dropped because they had not been formally diagnosed with M.E., six (3%) indicated that they were either recovered or s i g n i f i c a n t l y better, s i x (3%) f a i l e d to meet the CDC c r i t e r i a (less than eight minor c r i t e r i a ) , f i v e (3%) had already pa r t i c i p a t e d at some phase in the study, four (2%) were M.E. caregivers who were not themselves i l l , three (2%) reported that they had been born with the i l l n e s s , and one (1%) did not have a s i g n i f i c a n t other whom they would be w i l l i n g to ask to f i l l out a questionnaire. The response rate was determined on the basis of the remaining potential participants (144 people) who were e l i g i b l e to take part in the study. Thirty-three (23%) declined to p a r t i c i p a t e , and 28 (19%) were never contacted by telephone. Eighty-three respondents from MEBC (79% of the t o t a l sample) were interviewed, y i e l d i n g an interview response rate for the MEBC sample of 58%. An additional 13 people (12% of the t o t a l sample) were obtained through an Infectious Diseases s p e c i a l i s t , and nine (9% of the t o t a l sample) were included subsequent to hearing about the study from other study p a r t i c i p a n t s . Thus, a t o t a l of 105 individuals with M.E. l i v i n g i n the Greater 93 Vancouver area participated in the study. Dependent Measures A l l p articipants with M.E. were given an interview and a follow-up questionnaire, whereas close others received only an abbreviated questionnaire. The close other questionnaire contained many of the same questions as those i n the par t i c i p a n t interview/questionnaire, with appropriate wording changes (e.g., changing "My M.E..." to "My close other's M.E..."). Previously developed measures were u t i l i z e d when available and chosen i f , i n addition to t h e i r content, (1) information regarding the psychometric a c c e p t a b i l i t y of the instrument was available, and (2) the scale was reasonably easy to administer. When these conditions were not met, o r i g i n a l questions were constructed or adapted from other researchers. The interview that was administered to people with M.E. was developed to assess key constructs such as h e l p f u l and unhelpful actions, r e l a t i o n s h i p s a t i s f a c t i o n , confiding, contact with medical professionals, a t t r i b u t i o n s , meaning, counterfactual thinking, and perceptions of c o n t r o l l a b i l i t y and f o r e s e e a b i l i t y . Weekly focus groups were conducted for two months whereby four researchers met, discussed the interview, and revised i t . Subsequently, an advisory panel of seven people with M.E. was formed to t a l k about the methods and procedures, and review the instrument. Advisory panel members read through the materials (contact l e t t e r s , telephone s c r i p t s , consent forms, interview instruments, and questionnaires), and met with the researchers to discuss the s u i t a b i l i t y of questions. Ambiguous items were rewritten, inappropriate items were dropped, and additional constructs were added. The measures were p i l o t tested on eight 94 people with M.E. to determine t h e i r length, the s u i t a b i l i t y of questions, and the adequacy of the proposed methodology. The measures of p a r t i c u l a r interest for the present inves t i g a t i o n are included below. Demographics. The M.E. sample was predominantly white (96%); The remaining respondents were Asian (2%), Afro-Canadian (1%), and Indo-Canadian (1%). There was a somewhat higher proportion of females (88% of sample) who part i c i p a t e d than one would expect given national s t a t i s t i c s . Thus, women contract M.E. at a rate of two to f i v e times that of men (Feiden, 1990; Harvey, 1989; Komaroff & Buchwald, 1991). Nonetheless, these numbers do not appear to r e f l e c t a bias regarding the greater l i k e l i h o o d of females to pa r t i c i p a t e (Rosenthal & Rosnow, 1975), given that 6 men (22% of men to whom l e t t e r s were sent) and 27 women (17% of women to whom l e t t e r s were sent) declined to take part i n the study. Rather, the large number of women i n the present study i s an accurate representation of the gender composition of people who are members of MEBC. Thus, l e t t e r s were sent randomly to MEBC members, and the pool from which the present sample was drawn comprised 86% women (163 out of 190 l e t t e r s ) . Sixty percent of participants with M.E. were i n an intimate r e l a t i o n s h i p (married, common law, or other long-term r e l a t i o n s h i p ) , and 40% were not. Respondents with M.E. noticed onset of t h e i r symptoms an average of 8 years e a r l i e r (ranging from 1 to 22 years). The number of years since diagnosis ranged from 0 to 18, with the average being 5 years. The M.E. and close other samples had an average of 14.67 and 14.19 years of education, respectively. Respondents with M.E. had a mean age of 47, and t h e i r close others had a mean age 95 of 50. Respondents with M.E. had a mean (1994) personal income of $19,000. The corresponding figure for close others was $31,000. Helpful and unhelpful actions. Supportive and unsupportive behaviors were measured in 3 separate ways. F i r s t , r e c i p i e n t s were asked, on a scale from 1 "never" to 5 "almost always" "How often has your [close other] said or done things that were es p e c i a l l y h e l p f u l to you?" Sim i l a r l y , r e c i p i e n t s were asked, on a scale from 1 "never" to 5 "almost always" "How often has your [close other] said or done things that were unhelpful or that upset you?" If respondents indicated at least " r a r e l y " to either or these questions, they were asked "What were these things? Please t e l l me one or two of the most he l p f u l [unhelpful or upsetting] things that your [close other] has said or done." Providers were asked the same questions with respect to the he l p f u l and unhelpful actions that they offered to re c i p i e n t s . Second, a r e v i s i o n of the Supportive Actions Scale (SAS; Trobst et a l . , 1994), the SAS-Circumplex Version (SAS-C; Wiggins & Trobst, i n press) was used to measure a variety of s t y l i s t i c differences in the types of support that providers d e l i v e r . The SAS-C used i n the present study i s 61-items with ratings ranging from 1 "never" to 5 "almost always." The measure includes items that are placed within the interpersonal circumplex space. S p e c i f i c a l l y , the SAS-C includes Directive (e.g., "Give advice"), Arrogant (e.g., "Persuade them to change t h e i r behavior"), C r i t i c a l (e.g., "Remind them that people sometimes get what they deserve"), Distancing (e.g., "Try to keep them from leaning on me too much"), Avoidant (e.g., "Avoid being 96 d i r e c t i v e " ) , Deferential (e.g., "Not argue with them"), Nurturant (e.g., "Give them a hug") and Engaging (e.g., "Get them to t a l k more about t h e i r problem") items that map onto combinations of Dominant and Nurturant tendencies of the interpersonal circumplex. The SAS-C provides a conceptual and measurable basis for representing both h e l p f u l and unhelpful actions. P r o t o t y p i c a l l y h e l p f u l actions are those that f i t within the Nurturant (LM) octant, although the adjacent categories of Deferential (JK) and Engaging (NO) may be primarily h e l p f u l . Actions that are further away from the Nurturant (LM) octant are more apt to be unhelpful. Thus, p r o t o t y p i c a l l y unhelpful actions are located i n the C r i t i c a l (DE) octant, with adjacent octants Arrogant (BC) and Distancing (FG) also being primarily unhelpful. The scale was o r i g i n a l l y designed to assess support from the provider's perspective, and was altered appropriately so that r e c i p i e n t s were also able to complete the measure. Third, the Social Support Behavior Questionnaire (SSBQ; Johnson et a l . , 1993) comprises behaviors that support providers may perform toward r e c i p i e n t s . The scale includes nine unhelpful and six h e l p f u l items presented on f i v e - p o i n t scales, ranging from 1 "never" to 5 "almost always." The scale was scored i n the same way as for Study 2, that i s , separate scores were generated for the h e l p f u l and unhelpful composites. The Big Five Inventory-44. The Big Five Inventory - 44 item Version (BFI; John, Donahue, & Kentle, 1991) assesses the f i v e main personality dimensions of Extraversion (e.g., "Is t a l k a t i v e , " "Is f u l l of energy"), Agreeableness (e.g., "Has a f o r g i v i n g nature," "Is considerate and kind to almost 97 everyone"), Conscientiousness (e.g., "Does a thorough job," "Makes plans and follows through with them"), Neuroticism (e.g., "Worries a l o t , " "Can be moody"), and Openness to Experience (e.g., "Is o r i g i n a l , comes up with new ideas," "Values a r t i s t i c , aesthetic experiences"). Respondents were asked to rate the extent to which they believe that each of 4 4 statements describes them on 5-point scales, ranging from 1 "strongly disagree" to 5 "strongly agree." The BFI contains scales that are i n t e r n a l l y consistent, with good convergent and discriminant v a l i d i t y (John et a l . , 1991). Perceived need for assistance. Two questions were developed to determine, from both the providers' and r e c i p i e n t s ' perspectives, how providers became aware, i f at a l l , that assistance was needed. In order to get p a r t i c i p a n t s with M.E. and t h e i r close others to r e c a l l s i g n i f i c a n t exchanges, both groups were asked to "Think back to the most important time that you [your close other] needed your close other's [your] help." This request was followed by a statement encouraging par t i c i p a n t s to mention what assistance was needed at the time. Then, r e c i p i e n t s were asked, "Do you think that your close other was aware that you needed his(her) help?" Affirmative responses were followed with: "How do you think he(she) became aware that you needed his(her) help?" Providers were asked t h i s l a t t e r question, with appropriate wording changes ("How did you become aware that he(she) needed your help?"). M.E. symptoms. As has been noted by previous authors (e.g., Mechanic, 1980), the d i s t i n c t i o n between psychological and physical symptoms may be somewhat ar b i t r a r y ; there i s often overlap between the two. A fine d i s t i n c t i o n between symptom 98 types i s therefore not possible. Nonetheless, common physical complaints of people with M.E. were generated from two sources. The Goldstein (1992) M.E. Symptom Checklist includes a var i e t y of symptoms, including nervous system problems (e.g., "seizures," " d i f f i c u l t y with balance," "blackouts," "twitching muscles"), and other physical complaints (e.g., "recurrent f l u -l i k e i l l n e s s e s , " nasal and other a l l e r g i c reactions," "weight change"). Two items ("rash of shingles" and "painful urination") were dropped because fewer than 3 0% of people with M.E. were reported to experience such symptoms. Items were also included from Komaroff and Buchwald (1991; e.g., "fatigue," "dizziness," "muscle weakness"), who estimated symptom frequencies of patients from experience and reports i n the l i t e r a t u r e . The r e s u l t i n g scale comprised 42 items on f i v e -point scales ranging from 1 "never" to 5 "almost always." Psychological symptoms. A subset of the 53-item B r i e f Symptom Inventory (BSI; Derogatis, 1975; Derogatis & Melisaratos, 1983) was employed to assess psychological state. The BSI i s a b r i e f form of the 90 item Symptom Checklist - Revised (SCL-90-R; Derogatis, 1977), and includes nine primary symptom constructs. For the present study, the Anxiety (e.g., "Feeling tense or keyed up," "Nervousness or shakiness") and Depression ("Feeling lonely," "Feeling blue") subscales were included, y i e l d i n g a t o t a l of 13 items. The items were rated on 5-point scales ranging from 1 "not at a l l " to 5 "extremely" depending upon how much i t bothered or distressed the respondent i n the past month. Causal explanations. I n i t i a l l y , r e c i p i e n t s were given the following open-ended question: "There i s l i t t l e agreement among the public and even among medical professionals regarding how 99 M.E. develops. Nevertheless, some people with M.E. have one or more hunches or theories about the cause of t h e i r i l l n e s s . Do you have any hunches or theories about what caused your M.E. to develop?" Respondents who answered a f f i r m a t i v e l y were asked, "What are they?" Then, a l l respondents with M.E. were given a series of closed-ended questions to obtain more s p e c i f i c information regarding perceptions of the development of M.E. They indicated on five-point scales, ranging from 1 "not at a l l " to 5 "extremely," how important they thought the following eleven factors were i n causing t h e i r M.E.: 1) a v i r a l i n f e c t i o n ; 2) a genetic predisposition; 3) working in an environment with no fresh a i r ; 4) toxins; 5) working too hard; 6) worrying; 7) God or some other s p i r i t u a l force; 8) depression; 9) not doing enough exercise; 10) stress; and 11) chance or pure coincidence. Providers were also asked about t h e i r views regarding the cause of t h e i r close others' M.E., but were only asked the closed-ended questions. Constraints. In order to obtain a measure of impediments to e f f e c t i v e action, rec i p i e n t s were asked "Why do you think your close other said or did these unhelpful things?" A more d i r e c t assessment of constraints was obtained by asking r e c i p i e n t s "What do you think prevented your close other from acting i n a way that you would have preferred? Close others were also asked these questions, which were reworded to r e f l e c t the fact that providers experienced the impediments. Awareness that actions were unappreciated. Post-behavioral awareness was measured in two ways. F i r s t , with respect to when awareness was obtained, recipients were asked to "Think back to the most upsetting time that your close other said or did 100 unhelpful things. Do you think your close other r e a l i z e d that his(her) actions were unhelpful at the time, did he (she) become aware of them l a t e r , or i s he(she) s t i l l unaware that his(her) action was unhelpful?" If r e c i p i e n t s indicated that providers became aware at some point, the former were asked "How do you think your close other became aware that his(her) action was unhelpful or upset you?" These questions were also asked of providers. Of course, because limited awareness would preclude a sensible answer, providers were not given the option of s t i l l being unaware that t h e i r actions were unappreciated. Coding; Open-ended questions from respondents with M.E. were transcribed from the tape recordings. Then, a series of codes were developed according to the following method. F i r s t , a random sample of responses from providers and r e c i p i e n t s was examined i n order to develop an i n i t i a l set of codes. Rules for i n c l u s i o n and exclusion were made. When possible, categories from previous research were u t i l i z e d (Dakof & Taylor, 1990; Dunkel-Schetter, 1984; Lehman et a l . , 1986; Lehman & Hemphill, 1990). Answers that were unique to t h i s sample were also added to the l i s t of codes. The majority of open-ended questions had not been asked by previous researchers, and a new coding scheme needed to be developed through consideration of responses and theorizing. The author developed categories, coded a l l of the responses, and modified categories when appropriate. Once a complete set of categories was developed, the author discussed them with a second rater, who then coded a l l of the responses again. A l l discrepancies were resolved by deciding which 101 rater's category r e f l e c t e d best the essence of the answer. Categories were either dropped or collapsed with other categories i f responses could not be r e l i a b l y coded within them (kappa less than .60), or i f less than 4% of par t i c i p a n t s endorsed them. Up to three answers were coded for each of the questions (except for the "causal explanation" question, for which up to seven responses were coded). For example, when requested to indicate the most he l p f u l actions that were offered to them by providers, participants may have given detailed answers that f i t into multiple categories (e.g., " l i s t e n i n g / t a l k i n g , " " a s s i s t i n g with d a i l y a c t i v i t i e s , " and "suggestions/coping strategies/information"). If a respondent said more than one thing that was coded within a single category (e.g., "helped me clean the house," "did the dishes," and "cooked dinner," a l l of which were coded into the " a s s i s t i n g with d a i l y a c t i v i t i e s " category), the code was used only once. However, the d i f f e r e n t responses were coded into as many as three categories. Because of multiple mentions per question, t o t a l s may exceed 100%. Cohen's kappas (J. Cohen, 1960) were computed for each category. Because i t was of interest only whether or not a par t i c i p a n t said something that f i t into a ce r t a i n category, and not the order that such a response was offered, answers were collapsed across mentions. Thus, an answer that f i t into a category was coded as a "yes" response, and an answer that did not f i t into the category was coded as a "no" response. Agreement occurred when both raters placed responses into the same category, or agreed that such a category did not apply. Lack of agreement occurred when one rater placed the response 102 into a category, but the other rater did not. Cohen's kappa ranged between .61 to 1.0, and averaged .87 across the dependent measures. Comparisons Between Providers and Recipients on the Open-Ended Data In order to test whether or not differences existed between r e c i p i e n t s ' and providers' responses for the open-ended data, a series of chi-squares of differences for proportions (Glass & Hopkins, 1984) were conducted for each category separately. Thus, parti c i p a n t s who mentioned a response that was coded into a category were distinguished from those who did not report such an answer, and proportions of the sample who reported the response were calculated. This procedure was done for both the M.E. and provider samples, y i e l d i n g 2 ("yes" or "no") X 2 ("recipient" or "provider") contingency tables. Number of Participants Included i n Analyses The t o t a l sample of participants with M.E. was 105, and a l l of these respondents were included i n analyses for questions only asked of them. The percentage of respondents with M.E. who answered such questions was calculated by using a denominator of 105; r e s u l t s are reported i n the tables i n t h i s manner. When questions were asked of both groups, then the matched pairs were compared. That i s , even though 105 people with M.E. answered such questions, those who did not have close others who completed questionnaires were dropped from these analyses (leaving a t o t a l of 87 pairs of respondents). This decision was made to ensure that discrepancies between groups that emerged were not due to differences between close others who answered the questionnaires and those who did not. It i s conceivable, 103 for example, that close others who did not send questionnaires back to the project o f f i c e were less h e l p f u l or offered p a r t i c u l a r l y unhelpful actions. The percentage of matched pairs who answered the open-ended questions was calculated by using a denominator of 87; re s u l t s are reported i n the tables i n t h i s manner. Eighty-five pairs of respondents (close others and partici p a n t s with M.E.) completed both questionnaires, which comprised primarily closed-ended questions. When comparisons were made between providers and rec i p i e n t s for closed-ended questions, a l l 85 pairs were used. Results Descriptive S t a t i s t i c s for Scales Table 6 includes scale score means, standard deviations, number of items per scale, and Cronbach alpha r e l i a b i l i t i e s for part i c i p a n t s with M.E. (re c i p i e n t s ) . Table 7 includes the same information for scales given to close others (providers). Insert Tables 6 and 7 About Here Helpful Responses On average, participants with M.E. (M = 4.00) said that providers offered h e l p f u l actions "often," whereas close others (M = 3.74) said that they helped between "sometimes" and "often." The independent t - t e s t for differences between groups was s i g n i f i c a n t , t(184) = 2.08, p < .05, such that r e c i p i e n t s indicated that close others provided h e l p f u l actions more frequently than providers did. Of the respondents who indicated that providers offered h e l p f u l actions at least " r a r e l y , " 99% of partic i p a n t s with M.E. 104 and 95% of close others reported at least one e s p e c i a l l y h e l p f u l action by providers that was coded into one of 9 categories (see Table 8). A substantial number of respondents reported that Insert Table 8 About Here some type of emotional support (63% of r e c i p i e n t s and 68% of providers) was h e l p f u l , followed by tangible (54% of r e c i p i e n t s and 40% of providers), and informational (17% of r e c i p i e n t s and 18% of providers) support. As i s evident i n Table 8, there was substantial agreement between providers and r e c i p i e n t s regarding what they believed was h e l p f u l . Thus, each group mentioned things that were codable into s i m i l a r categories, and such answers were offered in roughly equal proportions. Interestingly, both groups mentioned that a p a r t i c u l a r form of tangible support, a s s i s t i n g with d a i l y a c t i v i t i e s , was appreciated more often than other forms of support (47% of r e c i p i e n t s and 37% of providers). Expressing love, concern, or understanding was seen to be h e l p f u l by both providers and r e c i p i e n t s , and was the category mentioned second i n frequency for both groups (24% of r e c i p i e n t s and 29% of providers). Suggestions/coping strategies/information (17% of r e c i p i e n t s and 18% of providers), accepting or acknowledging the i l l n e s s or i t s severity (17% of r e c i p i e n t s and 14% of providers), and l i s t e n i n g / t a l k i n g (17% of r e c i p i e n t s and 26% of providers) were considered to be h e l p f u l in each group to a s i m i l a r extent. A substantial minority also indicated that they considered the absence of negative actions to be h e l p f u l (14% of r e c i p i e n t s and 7% of providers). Thus, recipie n t s appreciated, and providers 105 recognized, not only h e l p f u l things that providers said and did, but also the fact that they did not say or do unhelpful things. F i n a l l y , providing accommodations/making decisions/acting on behalf of p a r t i c i p a n t s with M.E. (13% of r e c i p i e n t s and 6% of providers), providing encouragement or reassurance (12% of r e c i p i e n t s and 17% of providers), and physical presence/being there/including i n s o c i a l a c t i v i t i e s (10% of r e c i p i e n t s and 9% of providers) were valued by both providers and r e c i p i e n t s . Unhelpful Responses On average, participants with M.E. (M = 2.41) and close others (M = 2.38) said that providers offered unhelpful actions between "rar e l y " and "sometimes," t(186) = .29, p_= .77. Of the respondents who indicated that providers offered unhelpful actions at least " r a r e l y , " 91% of p a r t i c i p a n t s with M.E. and 81% of close others reported at least one e s p e c i a l l y unhelpful or upsetting action by providers that was coded into one of eight categories (see Table 9). As with the " h e l p f u l " question, there was substantial agreement between providers and r e c i p i e n t s regarding what they believed was unhelpful. Insert Table 9 About Here As anticipated, a substantial proportion of p a r t i c i p a n t s with M.E. (33%) reported negative exchanges that focused around denial or minimization of the i l l n e s s , or statements or actions on the part of providers which suggested that the person with M.E. had a greater capacity to accomplish various tasks than was a c t u a l l y the case. Three M.E. respondents said: 106 Denial that I can't do something. Refusal to accept i t when I say I can't do i t , or expectation for me to carry on as i f I was normal. H e ' l l wonder why things aren't done. He doesn't r e a l i z e the day-to-day dealing with the two kids and being sick. He asked me i f I was phoning the bank once a week to check on the intere s t rates. H e ' l l ask "Well, how come you didn't do t h i s , " and I ' l l get r e a l l y offended by i t . At the very beginning, he said "Sometimes you can do t h i s , and sometimes you can't do the other, so I think that you use the i l l n e s s as an excuse to get out of things." Close others also mentioned unhelpful or upsetting actions that they offered to recipien t s that focused on challenging the i l l n e s s or pushing r e c i p i e n t s too much (28%). Providers' statements tended to be less harsh than those of r e c i p i e n t s , but nevertheless c l e a r l y r e f l e c t e d the essence of t h i s category (sometimes the statement included a sense of g u i l t ) : Expected too much. She said that she was "up" for an a c t i v i t y , but wasn't. I took her beyond her l i m i t s . She "crashed and burned" for a week. I f e l t g u i l t y . I at one time remarked that she should not f e e l so t i r e d . This hurt her very much and remains with her to t h i s day. I have since r e a l i z e d that t h i s person was completely overloaded emotionally, p h y s i c a l l y , and s p i r i t u a l l y and I f e l t very badly about my careless remark made four or f i v e years ago. My lack of a constant, v i g i l a n t , awareness as to the extent of the devastation t h i s condition/disease brings to a person's l i f e . Twelve percent of recipien t s and 14% of providers reported that close others experienced negative emotional reactions, and expressed them toward the person with M.E. These reactions ranged from anger, f r u s t r a t i o n , and impatience. Respondents indicated that close others often f a i l e d to o f f e r assistance that was wanted or needed (10% of rec i p i e n t s and 13% of 107 providers). As predicted, respondents indicated that providers may avoid the M.E. sufferer through f a i l u r e to communicate with them (8% for re c i p i e n t s and 9% for providers), or decreased contact (e.g., not v i s i t i n g or including i n s o c i a l a c t i v i t i e s ; 5% of rec i p i e n t s and 9% of providers). To i l l u s t r a t e t h i s point, the responses of four people are provided below. There have been times when I've f e l t worse a f t e r t a l k i n g to her, almost l i k e I shouldn't have had that conversation. Sometimes you're just looking for somebody, for a shoulder to lean on or an ear to l i s t e n , and sometimes you don't get that. [Participant with M.E.] If I was complaining, she would say, "Enough of that. I want to t e l l you about something else." I f e l t l i k e I couldn't t a l k about that because she wanted to t a l k about her i l l n e s s . [Participant with M.E.] I l e f t her alone when she was having d i f f i c u l t y f u n c t i o n i n g — p a r t l y due to the distance involved. [Provider] I did not make myself available to discuss his worries about his feelings of worthlessness and possible loss of job...I tend to ignore what i s going on and get on with things as we have a very busy household. [Provider] As anticipated, some participants said that others' unhelpful actions revolved around giving advice (7% of rec i p i e n t s and 8% of providers). Participants said that i t was unappreciated when close others gave advice r e l a t i n g to treatment, and things that respondents with M.E. should be doing d i f f e r e n t l y i n t h e i r l i v e s . For example: 108 The most unhelpful thing he's done i s accusing me of not wanting to get better because I didn't want to go see another naturopath. He always wants me to t r y d i f f e r e n t things to get better. [Participant with M.E. ] T e l l i n g me to get r i d of my boyfriend because he was making me worse. It was upsetting. [Participant with M.E. ] I have offered explanations for her i l l n e s s and advice on how to get better. This often offended her as her previous e f f o r t s seemed i n v a l i d . Quick-fix ideas r e a l l y upset and frustrated her. [Provider] Encouraged her to exercise or pushed d i f f e r e n t vitamin or herb compounds. [Provider] Not s u r p r i s i n g l y , some people focused on rude remarks or c r i t i c i s m s that were made (5% of r e c i p i e n t s and 5% of providers). And, f i n a l l y , participants with M.E. found i t unhelpful when close others were being overly protective/patronizing (5%), but providers did not mention t h i s category at a l l (0%). The difference between groups for t h i s l a s t category was s i g n i f i c a n t , X 2 ( l ) = 4.09, p < .05. Nonetheless, because of few endorsements i n a l l categories, the r e s u l t s need to be interpreted cautiously. Interpersonal T r a i t s and Their Relations to Supportive and Unsupportive Actions In addition to the open-ended reports, people with M.E. and t h e i r close others were also asked closed-ended questions about the d i f f e r e n t types of supportive and unsupportive actions that providers offered. Octant scores from the SAS-C were computed, and correlations along the diagonal were calculated i n order to determine the l e v e l of agreement between respondents with M.E. and t h e i r close others (see Table 10). As anticipated, 109 Insert Table 10 About Here s t a t i s t i c a l l y s i g n i f i c a n t r e l a t i o n s were found between providers' and r e c i p i e n t s ' ratings for 7 of the 8 c o r r e l a t i o n s . Not s u r p r i s i n g l y , the strength of associations was generally higher for those octants that contain s o c i a l l y desirable actions and lower for those octants that contain s o c i a l l y undesirable actions. The only nonsignificant c o r r e l a t i o n was for providers' and r e c i p i e n t s ' reports of close others' actions that f i t i n the BC (Arrogant) octant. In contrast, the strongest association was for behaviors that f i t into the LM (Nurturant) octant. To investigate the r e l a t i o n s between personality and supportive and unsupportive actions, correlations were computed between SAS-C, SSBQ, and BFI subscales. Providers and re c i p i e n t s gave ratings for t h e i r own personality dimensions, and also reported on helpful and unhelpful actions offered to par t i c i p a n t s with M.E. by close others. I t was of i n t e r e s t to investigate the r e l a t i o n s between (1) r e c i p i e n t s ' ratings for dimensions and t h e i r ratings for supportive and unsupportive actions, and (2) providers' ratings for dimensions and t h e i r ratings for supportive and unsupportive actions. Table 11 indicates that there were few r e l a t i o n s between r e c i p i e n t s ' personality scores and t h e i r reports of providers' Insert Table 11 About Here actions. One inte r p r e t a t i o n of these r e s u l t s i s that people with M.E. do not tend to " p u l l " certain actions from providers. 110 There were two exceptions to t h i s trend. There was an association between r e c i p i e n t s ' Agreeableness scores and t h e i r views of providers' DE ( C r i t i c a l ) scores, r (94) = -.22, p < .05, such that agreeable individuals tended to report receiving fewer c r i t i c a l actions from providers. S i m i l a r l y , the negative r e l a t i o n between Agreeableness and FG (Distancing), r (94) = -.22, p_ < .05, i s consistent with the idea that people with M.E. who are agreeable tend to receive fewer distancing actions from close others than do those low on agreeableness. An a l t e r n a t i v e explanation i s that people who are agreeable tend to d i f f e r from t h e i r counterparts who are low on t h i s dimension not i n terms of negative behaviors offered to them, but rather t h e i r perceptions regarding those behaviors. Table 12 includes r e l a t i o n s between providers' s e l f -reported personality dimensions and t h e i r reports of supportive and unsupportive actions that they offered t h e i r close other with M.E. There were no s i g n i f i c a n t associations between Insert Table 12 About Here PA (Directive) or BC (Arrogant) behaviors and the BFI subscales, that i s , supportive and unsupportive actions that map onto dominant and cold octants of the circumplex are unrelated to providers' reports of t h e i r personality dimensions. In contrast, the other six octants were a l l related, to a greater or lesser extent, with personality dimensions. The strongest associations were evident in the LM (Nurturant) octant, such that a l l personality dimensions were associated with nurturance i n the expected d i r e c t i o n s . Thus, Extraversion, Agreeableness, I l l Conscientiousness, and Openness were p o s i t i v e l y related, and Neuroticism was negatively related to the LM (Nurturant) octant. Correlations ranged from -.28 to .52. The NO (Engaging) octant included three out of f i v e s i g n i f i c a n t associations, such that Extraversion, Agreeableness, and Openness were a l l p o s i t i v e l y related to NO (Engaging). Correlations ranged from -.06 to .34. JK (Deferential) was correlated with Agreeableness, such that people who indicated that they were high on t h i s dimension also said that they offered d e f e r e n t i a l behaviors. The remaining octants of the SAS-C (DE, C r i t i c a l ; FG, Distancing; and HI, Avoidant) tended to be related to the dimensions of personality in the opposite d i r e c t i o n of those mentioned thus far, and there were fewer s i g n i f i c a n t associations. For example, DE ( C r i t i c a l ) , FG (Distancing), and HI (Avoidant) were associated with Neuroticism, such that high scores on the dimension was related to more actions considered to be cold and submissive. F i n a l l y , DE ( C r i t i c a l ) was correlated with Agreeableness, such that those who reported being low on the dimension also reported more c r i t i c a l behaviors. The SAS-C has a factor structure comprising three factors, such that behaviors f a l l into clusters of Nurturant/Extraverted, Dominant/Hostile, and Avoidant items (Trobst, 1991; Trobst et a l . , 1994; Wiggins & Trobst, in press). When the three factors are computed from providers' s e l f - r e p o r t s , and correlated with t h e i r personality dimensions of the BFI, i t becomes apparent that the Nurturant/Extraverted factor i s more strongly associated with scores on the BFI than the other two factors (see Table 13). In fact, the Nurturance/Extraversion factor 112 Insert Table 13 About Here was p o s i t i v e l y related to Extraversion, Agreeableness, Conscientiousness, and Openness, and negatively re l a t e d to Neuroticism. In contrast, neither of the other factors were correlated with any of these personality dimensions. Another way to investigate the r e l a t i o n s between supportive and unsupportive actions and personality i s to compute h e l p f u l and unhelpful subscales for the SSBQ separately, and correlate them with dimensions from the BFI (see Table 14). Using Insert Table 14 About Here providers' s e l f - r e p o r t s from both of these measures, there are s i g n i f i c a n t associations between the he l p f u l subscale and a l l of the dimensions of personality. Thus, the SSBQ h e l p f u l composite was p o s i t i v e l y related to Extraversion, Agreeableness, Conscientiousness, and Openness, and negatively re l a t e d to Neuroticism. Interestingly, Openness was also p o s i t i v e l y related to the unhelpful composite of the SSBQ. None of the other dimensions were s i g n i f i c a n t l y correlated with the unhelpful composite. Perceived Need for Assistance Participants were asked three questions about perceived need for assistance. The f i r s t question was designed to orient p a r t i c i p a n t s toward interactions that were important. The second question was designed to assess j j : pre-support awareness was obtained, and the t h i r d question focused on how awareness 113 was obtained. Most important assistance needed. In order to get providers and r e c i p i e n t s to think about meaningful exchanges, pa r t i c i p a n t s were asked to mention the most important time that r e c i p i e n t s needed assistance. Eighty-four percent of p a r t i c i p a n t s with M.E. and 83% of providers gave responses to the "most important assistance needed" question that were coded into 1 of 9 categories (see Table 15). Emotional (49% of r e c i p i e n t s and Insert Table 15 About Here 45% of providers) and tangible (33% of r e c i p i e n t s and 30% of providers) support categories were reported by a substantial number of respondents. Various forms of emotional support were considered to be p a r t i c u l a r l y important. Thus, r e c i p i e n t s mentioned expressions of love, concern, or understanding (21% of r e c i p i e n t s and 17% of providers), l i s t e n i n g / t a l k i n g (15% of r e c i p i e n t s and 16% of providers), physical presence (10% of r e c i p i e n t s and 8% of providers), provisions of encouragement or reassurance (9% of r e c i p i e n t s and 12% of providers), and accepting or acknowledging i l l n e s s or i t s severity (6% of r e c i p i e n t s and 6% of providers). As anticipated, several p a r t i c i p a n t s mentioned incidents i n d i c a t i n g severe d i s a b i l i t y and physical l i m i t a t i o n s . Thus, 16% of r e c i p i e n t s and 10% of providers indicated help that emphasized basic personal care. Four pa r t i c i p a n t s said: 114 My back goes i n spasms sometimes. One time when i t went into spasms, I couldn't get off the f l o o r . I had to c a l l him home from work to move me. I was i n t e r r i b l e pain. [Participant with M.E.] When I went off work, I was bedridden for about two months. I didn't eat, I couldn't make my bed, I could barely bend my legs. At that time, there was nobody to help me. After being bedridden for two months, I went to my s i s t e r ' s . She said "come here and I ' l l look af t e r you." She helped me into the tub, she made my bed, changed my sheets, cooked. [Participant with M.E. ] She developed a very painf u l muscle/nerve disorder which kept her bedridden for three weeks. I had to nurse her i n every way possible. [Provider] When she f i r s t got sick, she needed to be bathed and have her hair washed. She needed me to make a l l of the meals, grocery shop, clean house, etc. [Provider] In the most extreme cases, participants said that immediate medical assistance or an ambulance was needed. There was a trend for providers (10%) to mention assistance revolving around an ambulance, physician, or hospital more often than t h e i r counterparts with M.E. (3%; X 2 ( l ) = 3.22, p = .07). To high l i g h t the seriousness of t h e i r symptoms, reports from four pa r t i c i p a n t s are l i s t e d below: I had about three or four t r i p s to emergency, and one time there was something quite wrong. It was f i r s t thing i n the morning, the ambulance was here, the kids had to be taken to school, and i t was very traumatic for me. [My s i g n i f i c a n t other] dealt with the ambulance, stayed with me, and then at lunch time he looked aft e r the kids. [Participant with M.E.] I was lyi n g in the corner in my bedroom crying, and wanting to k i l l myself, and she and a g i r l f r i e n d took me to the hos p i t a l . [Participant with M.E.] She had gone to emergency. They did not want to admit her, but she could not care for herself or her children. I met her at the hospita l , took her home, and stayed u n t i l a homecare worker could a r r i v e . [Provider] 115 She had constricted breathing from a food reaction while we were d r i v i n g i n the car on holidays. We turned around to go to the nearest h o s p i t a l . [Provider] Although not a l l participants mentioned as dramatic si t u a t i o n s as those reported above, several respondents said that help was needed with other basic tasks. In fact, the single category i d e n t i f i e d most often was a s s i s t i n g with d a i l y a c t i v i t i e s (24% of r e c i p i e n t s and 26% of providers), such as cooking, cleaning, and d r i v i n g to scheduled appointments. Twelve percent of respondents with M.E. said that the most important help they received revolved around others making accommodations for them or acting on t h e i r behalf. For example, three respondents with M.E. said: I found i t r e a l l y h e l p f u l when [my close other] went to the doctor and t o l d his side of things because at one point I was incapable of expressing how bad my l i f e was, so he was able to put an objective, credible story. When I was dealing with the law s u i t , he was the one who read over the reports that I received because I wouldn't read the negative ones, and he viewed the video tape. He offered to t e s t i f y and write an a f f i d a v i t . He was very supportive, and helped me not get into the insurance company way of looking at i t . The assistance I needed the most was somebody to take over completely, to make a l l the decisions, to do a l l the housework, to make a l l the decisions i n regards to my youngest c h i l d . Close others r a r e l y reported that providing accommodations/making decisions/or acting on behalf of the respondents with M.E. (3%) was the most important help that was needed, X 2 ( l ) = 4.07, p_ < .05. 116 How did providers become aware that M.E. r e c i p i e n t s needed help? After r e c a l l i n g the most important assistance needed by r e c i p i e n t s , a l l participants with M.E. were asked whether or not they believe that t h e i r s i g n i f i c a n t other was aware that such assistance was needed. Ninety-one percent of respondents with M.E. answered a f f i r m a t i v e l y , which i s not s u r p r i s i n g given that par t i c i p a n t s r e s t r i c t e d t h e i r answers to p r e c i s e l y that subset of s i t u a t i o n s i n which providers would most l i k e l y be aware that help was needed. When asked how pre-support awareness was obtained, 92% of r e c i p i e n t s and 87% of providers gave open-ended answers that were coded into 1 of 8 categories (see Table 16). For both samples, the most commonly reported way was discussing the Insert Table 16 About Here issue or t a l k i n g with the provider (43% of r e c i p i e n t s and 48% of providers). For example, four participants said: I was always in touch with her, so I've always reached out to her, and we're very close. [Participant with M.E. ] I c a l l e d him and said, "Come home, I can't move." [Participant with M.E.] I asked her for her thoughts and she t o l d me. [Provider] I became aware that she was more bored and frustrated as she seemed to need more time v i s i t i n g on the phone seeking my opinion on relationships within her family or to t a l k about fr u s t r a t i o n s of M.E. [Provider] For r e c i p i e n t s , the next most commonly reported method was observation or looking (14%). Providers reported answers that 117 were coded into t h i s category 10% of the time. Overall, respondents did not mention s p e c i f i c a l l y what i t was about the re c i p i e n t s ' appearance that alerted providers to the fact that assistance was needed. Rather, b r i e f statements regarding looking at the person with M.E. were t y p i c a l l y reported. Some examples are included below: To see me from what I once was and to what I had turned into. She said my eyes looked dead and d u l l . They used to be sparkly and happy. [Participant with M.E. ] Sometimes when he saw me being shut out of everything, he'd notice that I get r e a l l y depressed. [Participant with M.E.] Sometimes I can see her not f e e l i n g well so I t r y and do my utmost to make her comfortable. I can see i t i n her eyes. [Provider] In person she didn't look well, and needed support when s i t t i n g . [Provider] The t h i r d most frequent method that r e c i p i e n t s (10%) indicated, and the second most frequent method for providers (20%), was expression of emotional d i f f i c u l t i e s or d i s t r e s s . This category included methods that may have been determined on the basis of observation, and may therefore be considered a subset of the observation or looking category. Nonetheless, the present category was distinguished from observation or looking i n that i t contained e x p l i c i t statements pertaining to emotional d i s t r e s s . Moreover, the emotional d i f f i c u l t i e s category included statements of di s t r e s s that were not necessarily observable, but that were conveyed through discussion (e.g., "She spoke openly about her di s t r e s s at having to do i t " ) or were infer r e d by the provider (e.g., "I f e l t that her s p i r i t was suf f e r i n g due to the intense pressure placed upon her as such a 1 1 8 young person"). Six out of the 9 statements by r e c i p i e n t s and 13 out of 17 statements by providers belonging to t h i s category involved respondents with M.E. crying or becoming upset. There was a tendency for providers to mention t h i s category more often than r e c i p i e n t s , X 2 (1).= 2.89, p = .09. Four respondents said: Lying i n a heap on .the bed, t o r r e n t i a l tears. I was a mess. [Participant with M.E.] He saw me crying on the s t a i r s . [Participant with M. E. ] [She] was bursting into tears every 3 0-4 0 minutes while studying. We were very close then, as now, and she was hurting too much to bother t r y i n g to hide her feelings and needs. [Provider] She could barely move without crying out. She r a r e l y c r i e s , and i s generally extremely s t o i c . I knew she was i n extreme pain and d i s t r e s s . [Provider] Empathy, understanding, or perceptiveness was reported by 9% of rec i p i e n t s and 3% of providers. Such responses emphasized the psychological connection between providers and r e c i p i e n t s , or a b i l i t y of close others to consider the perspectives of part i c i p a n t s with M.E. Five respondents said: He could sense i t . I met him when I was 18. We had dates every night u n t i l we got married, and we have been together every day. You get to know a person. [Participant with M.E.] Through her s e n s i t i v i t y to me. [Participant with M.E.] She knows me better than I know myself. [Participant with M.E.] I understand her needs. [Provider] It's i n t u i t i v e . [Provider] Eighteen percent of providers said that they became aware that t h e i r close other with M.E. needed help because of 119 incapacitation or poor physical health. Fewer people with M.E. (7%) said the same thing, X 2 (1) = 5.20, p_ < .05. For example, four respondents said: I couldn't get out of bed. I t ' s just t o t a l incapacitation on my part. I know, even now, when we're t a l k i n g about things when my brain just doesn't function. I t ' s l i k e your brain has a complete shut down. [Participant with M.E.] I couldn't stand up. I couldn't do anything. [Participant with M.E.] Her legs went blue, her complexion white and pasty, sweaty, and she was moving i n and out of consciousness. [Provider] He l e f t simple chores that used to be no problem, and lay down pale, exhausted, aching, barely able to p h y s i c a l l y move. He f e l t overwhelmed. [Provider] The next most frequently reported categories for r e c i p i e n t s were obvious/common sense (7% of r e c i p i e n t s and 5% of providers), and voice tone or body language (5% of r e c i p i e n t s and 2% of providers). Confusion/being l o s t was never mentioned by r e c i p i e n t s , but 7% of providers did, X 2 ( l ) = 6.21, p. < .01. For example, two providers said: She became so confused at times that she couldn't remember what she had just been doing moments e a r l i e r or what to do n e x t — i f she had the energy to do anything next at a l l . She didn't return on time. I spent hours looking for her and found her s t i l l walking on the roadside. Providers' and Recipients' Views of Symptoms, and Their Relations to Supportive and Unsupportive Actions Two raters divided the M.E. physical symptoms into three categories: 1) symptoms that are c l e a r l y observable; 2) symptoms that are c l e a r l y unobservable; and 3) symptoms that are 120 sometimes observable and sometimes unobservable. Because t h i s section emphasizes ratings of symptoms for observable and unobservable symptoms, and t h e i r r e l a t i o n s to supportive and unsupportive actions, items placed in category three were omitted from subsequent analyses. There was reasonable agreement between raters, as emphasized by kappa c o e f f i c i e n t s for observable (.69 for rec i p i e n t s and .77 for providers) and unobservable (.76 for rec i p i e n t s and .83 for providers) symptoms, respectively. A series of t- t e s t s were conducted i n order to determine i f providers or rec i p i e n t s view physical and psychological symptoms of those with M.E. as occurring more frequently. As anticipated, people with M.E. (M = 2.71) said that they experienced more physical symptoms than t h e i r close others reported (M = 2.36), t (180) = 4.82, p < .001. The same pattern was found for unobservable symptoms (M = 3.10 for re c i p i e n t s and M = 2.75 for providers; t (180) = 4.26, p < .001). As expected, r e s u l t s were less clear for psychological symptoms. Thus, providers (M = 2.14) said that those with M.E. were marginally more depressed than did respondents with M.E. (M = 1.99), t(179) = 1.34, p = .18, but t h i s trend was reversed for anxiety (M = 2.09 for re c i p i e n t s ; M = 1.92 for providers), t(179) = 1.57, p = .12. These findings may be due, in part, to the opposing p o s s i b i l i t i e s discussed e a r l i e r . It was suggested that emotional symptoms may be emphasized by providers i f they believe that M.E. i s an emotionally caused disorder. In order to t e s t such a notion d i r e c t l y , providers' causal notions were correlated with t h e i r views of r e c i p i e n t s ' psychological symptoms. As anticipated, there were s i g n i f i c a n t r e l a t i o n s 121 between the Psychological factor and depression, r(85) = .45, p, < .001, and anxiety, r(85) = .28, p. < .01. Working against t h i s f i nding i s the p o s s i b i l i t y that providers may underestimate psychological symptoms i f they r e l y on obs e r v a b i l i t y of symptoms as an in d i c a t i o n of how the re c i p i e n t i s doing. As with the personality data, a decision was made to focus on same rater pairs with respect to symptom reporting and he l p f u l and unhelpful actions (that i s , providers' reports of both measures). In order to determine i f perceptions of symptoms are associated with actions, providers' views of physical and psychological symptoms were correlated with t h e i r views of supportive and unsupportive behaviors that they offered (see Table 17). Because of the p o t e n t i a l l y large number of Insert Table 17 About Here correlations that could be computed, only composite scores were examined. As anticipated, the Helpful Actions subscale of the SSBQ was s i g n i f i c a n t l y related to observable and unobservable physical symptoms. The Helpful Actions subscale was also associated with Anxiety. Providers indicated that they were more l i k e l y to o f f e r supportive behaviors to r e c i p i e n t s i f the former also believed that participants with M.E. were experiencing physical or psychological symptoms. Contrary to expectations, the Unhelpful Actions subscale of the SSBQ was unrelated to physical symptoms. Nonetheless, the Unhelpful Actions subscale was associated with psychological d i s t r e s s , such that anxiety and depression were p o s i t i v e l y associated with unsupportive behaviors. 122 The Nurturance factor of the SAS-C was correlated with unobservable symptoms and marginally correlated with observable symptoms (p = .06). Thus, providers who believed that t h e i r s i g n i f i c a n t others with M.E. had a large number of physical symptoms, regardless of whether or not they could be seen, were also l i k e l y to report that they engaged i n nurturant behaviors. The Avoidance factor was marginally associated with unobservable symptoms (p = .06), such that providers who indicated that t h e i r s i g n i f i c a n t others with M.E. were experiencing symptoms that could not be seen also said that they tended to avoid that person. F i n a l l y , the Dominance factor was s i g n i f i c a n t l y related to anxiety, and marginally related to depression (p = .10). One goal of the present study was to investigate discrepant ratings of symptoms by providers and r e c i p i e n t s , and the associations between such discrepancies and supportive and unsupportive behaviors. Researchers have often calculated congruence scores between d i f f e r e n t raters by taking the simple difference between the two, and using the difference scores i n subsequent analyses (John & Robins, 1994). However, such a procedure has been c r i t i c i z e d by psychometricians because the r e l i a b i l i t i e s of difference scores are low, and they tend to be confounded with variables that comprise the index (Cohen & Cohen, 198 3). To provide unconfounded measures of congruence for psychological and physical symptoms, residual scores were computed by regressing the close other ratings onto the ratings by the person with M.E. and retaining the standardized residuals. For physical symptoms, observable and unobservable residuals were computed separately. For psychological symptoms, depression and anxiety residuals were computed separately. 123 These r e s i d u a l s c o r e s r e p r e s e n t the v a r i a n c e t h a t remains i n r e c i p i e n t s ' r a t i n g s of symptoms a f t e r the v a r i a n c e p r e d i c t a b l e from c l o s e o t h e r s has been removed. P o s i t i v e v a l u e s on these r e s i d u a l i z e d indexes r e f l e c t h i g h e r r a t i n g s by p a r t i c i p a n t s with M.E. r e l a t i v e t o t h e i r c l o s e o t h e r s . In order t o m a i n t a i n r a t e r c o n s i s t e n c y , c o r r e l a t i o n s were then computed between the r e s i d u a l i z e d r a t i n g s f o r (1) o b s e r v a b l e and unobservable p h y s i c a l symptoms and s u p p o r t i v e and u n s u p p o r t i v e a c t i o n s from r e c i p i e n t s ' p o i n t s of view, and (2) p s y c h o l o g i c a l symptoms and s u p p o r t i v e and u n s u p p o r t i v e a c t i o n s from r e c i p i e n t s ' p o i n t s of view. R e l a t i o n s between the r e s i d u a l i z e d r a t i n g s and SSBQ composite s c o r e s and SAS-C f a c t o r s c o r e s were i n v e s t i g a t e d (see Table 18). I n s e r t Table 18 About Here P a r t i a l support was found f o r the hypotheses t h a t g r e a t e r d i s c r e p a n c i e s between p r o v i d e r s ' and r e c i p i e n t s ' r a t i n g s of p h y s i c a l symptoms are r e l a t e d t o p r o v i s i o n of h e l p f u l and u n h e l p f u l a c t i o n s . Thus, although s t a n d a r d i z e d r e s i d u a l s of observable symptoms were u n r e l a t e d to the h e l p f u l s u b s c a l e of the SSBQ, they were s i g n i f i c a n t l y c o r r e l a t e d with the u n h e l p f u l s u b s c a l e , r (84) = .22, p < .05. A g r e a t e r d i s c r e p a n c y between p r o v i d e r s ' and r e c i p i e n t s ' r a t i n g s was a s s o c i a t e d w i t h r e c i p i e n t s e l f r e p o r t s of u n h e l p f u l a c t i o n s by p r o v i d e r s . T h i s same p a t t e r n of r e s u l t s was found f o r unobservable symptoms; onl y the u n h e l p f u l composite of the SSBQ was s i g n i f i c a n t l y r e l a t e d t o the s t a n d a r d i z e d r e s i d u a l , r (84) - .23, p < .05. Observable and unobservable symptom r e s i d u a l s were u n r e l a t e d t o the t h r e e SAS-C 124 factors. The standardized residuals from the psychological subscales (depression and anxiety) were then correlated with supportive and unsupportive actions. Although depression scores were uncorrelated with the h e l p f u l and unhelpful composites of the SSBQ, anxiety was s i g n i f i c a n t l y associated with the unhelpful subscale, r (83) = .23, p. < .05. Standardized depression residuals were unrelated to the Nurturance and Dominance factors of the SAS-C, but p o s i t i v e l y correlated with Avoidance, r (83) = .23, p_ < .05. S i m i l a r l y , standardized anxiety residuals were unrelated to the Nurturance and Dominance factors, but marginally related to Avoidance, r (82) = .20, p. = .07. Thus, higher ratings of psychological symptoms by r e c i p i e n t s r e l a t i v e to providers was associated with reports of avoidance. Perceived Causes of M.E. Ninety-two percent of participants with M.E. reported that they had thought about causes of t h e i r M.E., and t h e i r answers were coded into 1 of 8 categories (see Table 19). Insert Table 19 About Here Participants with M.E. gave more responses to t h i s question than any of the other open-ended questions and, consequently, up to 7 mentions were coded. In fact, f u l l y 75% of the sample gave multiple responses. Participants often indicated that an in t e r l o c k i n g set or chain of causal factors were implicated i n the development of t h e i r i l l n e s s . Responses varied i n terms of the connection between each of the causal factors, but the acknowledgment of several influencing agents was nonetheless 125 apparent. For example, three answers from pa r t i c i p a n t s with M.E. were: I saw a l i t t l e picture i n a book one time, and i t was of a camel and he had a l l these bales of hay on h i s back, and they were c a l l e d a l l e r g i e s , pollutants, and a n t i b i o t i c s . Then he's f l a t on the ground l i k e he's broken his back--it's l i k e one bale too many was put on his back. It's just a combination and everybody's combination i s d i f f e r e n t , and that's why i t ' s so hard to cure i t . That breaks down your immune system and you can't cope. Pollutants in the home, chemicals, p h y s i c a l l y exhausted for a long time. Either delayed reaction from the po l i o vaccine (because of headaches, muscle pain, j o i n t pain, and weakness), a v i r a l i n f e c t i o n that I caught ( l i k e germ warfare), or a genetic thing triggered by a vir u s , bacteria from drinking water or food poisoning, or working in an a i r t i g h t building. Enteroviral o r i g i n ; genetic predisposition; a dysfunction in the b r a i n — t h i s i s an organic brain disease and i t a f f e c t s the limbic system (there's a dysfunction in the hypothalamus) and i t a f f e c t s a l l the systems i n the body. Maybe a r e t r o v i r a l factor. I think i t ' s a multicausal i l l n e s s , that socio-environmental stresses going on at the same time could cause that non-recoverable relapse. The foregoing highlights that i t i s unreasonable to pursue the issue of perceived causes as though they are independent. Nonetheless, in the present sample there were variati o n s across in d i v i d u a l s , and respondents' p a r t i c u l a r views were often quite i d i o s y n c r a t i c . Therefore, participants t y p i c a l l y had complex theories regarding the manner i n which various causes were combined, but a l l of the s p e c i f i c causes could be c l a s s i f i e d into 1 of the 8 factors i d e n t i f i e d in Table 19. The majority of participants with M.E. said that t h e i r i l l n e s s was due to a virus, f l u , bacteria, or i n f e c t i o n (60%). The f l u was i d e n t i f i e d most often, but other causes such as pol i o , mononucleosis, and he p a t i t i s were also i d e n t i f i e d . Three 126 respondents said: I r e a l l y believe that i t ' s some kind of a v i r a l i n f e c t i o n getting to you when your immune system i s low. I t was after'a f l u - l i k e v i r a l i l l n e s s that gave me a p o s t - v i r a l peripheral neuropathy that very much affected my central nervous system, and my brain. When I was 19, I had a strange v i r u s . My parents were very secretive and never t o l d me what i t was. My mother t o l d me i t was a thyroid i n f e c t i o n . I had a l o t of symptoms si m i l a r to M.E. It took me six months to recover from i t . I often wonder i f there's a co r r e l a t i o n between the two. Stress, overwork, and ov e r a c t i v i t y were viewed as the second most common factor influencing development of M.E., and was mentioned by s l i g h t l y less than half of the sample (44%). Three t y p i c a l responses were: Partly stress. I've been under stress a l l my l i f e , t hrived on i t . High goals, high expectations... I've come i n contact with at least 400 people with M.E.— and i n the discussions we've had, the only common thread we have i s that we're a l l "Type A" pe r s o n a l i t i e s . I'd changed jobs, we'd bought a house and had a huge mortgage, my new job wasn't working out, my children were i n a daycare center and I was t o l d by the p o l i c e that there was an alleged sex offender there, and they wanted to investigate i t — t h i s was a l l happening at the same time. My husband went through two open-heart surgeries for an aneurysm, and I dealt with a double load of patients at the o f f i c e , plus dealing with the children, plus running back and forth to the h o s p i t a l . Rather than giving answers consistent with a mind-body dualism, pa r t i c i p a n t s with M.E. reported intimate connections between the two. Thus, monocausal theories were ra r e l y reported and, instead, explanations for development of M.E. often revolved around the r e l a t i o n between physical and psychological factors. 127 Thus: I think i t was mononucleosis. I got mono when I was about 19, and although I didn't r e a l i z e i t at the time, I went through a personality change, l i f e s t y l e change, and then everything went downhill from there. I became very p h y s i c a l l y run down, mentally run down and aggravated. I developed what I f e l t was a f l u -type thing which never went away. I think l i f e s t y l e . I think your head controls your body. What you think i s what you are. Interestingly, a substantial minority of pa r t i c i p a n t s with M.E. (14%) said that they believe that emotional factors were important i n the etiology of t h e i r i l l n e s s . Thus, two respondents said: I do think i t ' s very psychosomatic. I think i t s t a r t s with f r u s t r a t i o n , stress and unhappiness which somehow disturbs the immune system, and I think the rest follows from there: your sleep disorder and the sickness i n the brain. I think there are a number of factors. One of them was chronic emotional stress from a dysfunctional family r e l a t i o n s h i p . If "psychological" factors are interpreted broadly to include stress and emotional factors, then roughly half of the M.E. sample (48%) acknowledged contribution of psychological factors i n development of t h e i r i l l n e s s . Stress and emotional factors were often mentioned together. Thus, 11 out of the 15 times that emotional factors were reported, stress/overwork/overactivity was also mentioned. However, i t i s important to note that t h i s does not mean that people with M.E. believe that the i l l n e s s i s " a l l in t h e i r head." That i s , part i c i p a n t s indicated that they had a "legitimate" physical i l l n e s s , but nonetheless acknowledged the contribution of 128 psychological factors. For example, one pa r t i c i p a n t said: "I am of the firm b e l i e f that i t ' s not psychological, although I believe there i s a great influence of the psyche." People who mentioned the psyche or stress were sometimes reluctant to c a l l such agents "causative," but preferred to ta l k about them as influencing, t r i g g e r i n g , or contributing factors. Thus, a respondent said: "I think i t [stress] i s not the cause but a tr i g g e r i n g agent." Forty-one percent of participants with M.E. indicated that an immune system disturbance was implicated in the development of the i l l n e s s . Respondents viewed immune system problems as preceding and following other causative factors: I r e a l l y believe that i t ' s some kind of v i r a l i n f e c t i o n getting to you when your immune system i s low. Studies have shown that severe, repeated stressors can lead to a depressed immune system, so I think i n my case, that happened--stressors both physical and emotional. I probably go along with the theories put out by the Centers for Disease Control, and that i t looks l i k e i t ' s probably some sort of infectious process that does something to the immune system, and the symptoms r e s u l t from that. Thirty-one percent of respondents with M.E. i d e n t i f i e d a number of physical problems, such as i n j u r i e s , operations, i l l n e s s e s , diseases, a l l e r g i e s , and brain abnormalities that were important in the etiology of t h e i r M.E. Moreover, a host of environmental factors, such as toxins in the water, a i r , or food, were implicated (25%). These categories were followed by genetic or other predisposing factors (15%), and vaccines, a n t i b i o t i c s , or anesthesia (14%). 129 The open-ended causal question was supplemented by various closed-ended causal factors for both parti c i p a n t s with M.E. and t h e i r close others. A l l 11 items for each sample separately were subjected to a P r i n c i p a l Components Analysis with Varimax rot a t i o n . Using a scree plot as the basis for i n c l u s i o n , two factors were extracted for both parti c i p a n t s with M.E. and close others. Any items that loaded on one of the factors for one sample, but not the other sample, were dropped (see Table 20). Factor 1 for both samples (Psychological) included the items worrying, stress, working too hard, depression, and not doing Insert Table 2 0 About Here enough exercise. The second factor for both samples (Environmental/Genetic) included the items working in an environment with no fresh a i r , toxins, and genetic predisposition. The item virus did not load on either factor for p a r t i c i p a n t s with M.E., but was included in subsequent analyses because of t h e o r e t i c a l s i g n i f i c a n c e ("physical" cause) and high endorsement as a causal factor by p a r t i c i p a n t s . Cronbach's alphas were computed for the two factors, and were .78 and .69 for Psychological and Environmental/Genetic, respectively, for participants with M.E. The corresponding alphas for close others were .81 and .59. Three t - t e s t s were conducted to determine i f participants with M.E. and t h e i r close others view the causal factors as d i f f e r e n t i a l l y important in causing M.E. Participants with M.E. (M = 2.72) viewed Psychological factors as marginally more important than did close others (M = 2.50), t(189) = 1.56, p_ = .12. The former (M 130 = 3.07) also considered Environmental/Genetic factors to be more important than did the l a t t e r (M = 2.41), t(189) = 4.30, p < .001. S i m i l a r l y , participants with M.E. (M = 4.15) considered a virus to be more important than did close others (M = 3.64) i n development of the i l l n e s s , t(160) = 2.79, p < .01. Items that comprise the two factors were summed to make composite scores which were then correlated with supportive and unsupportive actions to investigate i f d i f f e r e n t causal views are related to the receipt of d i f f e r e n t behaviors. Virus was correlated with such actions separately (see Table 21). I t was of in t e r e s t to assess providers' views regarding the cause of i l l n e s s (rather than r e c i p i e n t s ' perceptions of providers' views). In addition, i t was of intere s t to r e l a t e such views to re c i p i e n t s ' assessments of providers' actions (rather than providers' assessments of t h e i r actions) because the former are l i k e l y to be affected by such actions to a greater extent, and respond according to t h e i r perceptions. In other words, there are apt to be more psychologically meaningful r e l a t i o n s between r e c i p i e n t s ' perceptions of providers' unhelpful actions and measures of, for instance, r e c i p i e n t s ' d i s t r e s s , than there are between providers' views of t h e i r behaviors and r e c i p i e n t s ' psychological functioning. Such a suggestion i s supported by the data, X 2 ( l ) = 4.13, p < .05. Insert Table 21 About Here Providers' views regarding causes of the r e c i p i e n t s ' M.E. were d i f f e r e n t i a l l y related to supportive and unsupportive actions as reported by re c i p i e n t s . As anticipated, there were 131 s i g n i f i c a n t r e l a t i o n s between the Psychological factor and provision of supportive and unsupportive behaviors. In fact, the majority of associations included the Psychological factor. Providers who believed that r e c i p i e n t s ' i l l n e s s was due to psychological factors engaged in more DE ( C r i t i c a l ) , FG (Distancing), and HI (Avoidant) actions, and fewer NO (Engaging) behaviors from the r e c i p i e n t s ' points of view. Moreover, Psychological factors were p o s i t i v e l y associated with the Avoidance factor of the SAS-C, and negatively related to the Nurturance factor. The FG (Distancing) octant was the only s i g n i f i c a n t association with the Environmental/Genetic factor. Providers who said that they believed t h e i r r e c i p i e n t s ' i l l n e s s was due to v i r a l factors had r e c i p i e n t s who said that t h e i r close others offered more LM (Nurturant) actions. The three factors were a l l unrelated to the Helpful and Unhelpful subscales of the SSBQ. Constraints An i n d i r e c t assessment of impediments to e f f e c t i v e action was obtained by asking providers and r e c i p i e n t s why providers said or did the unhelpful things they did. A more d i r e c t assessment was made by asking what prevented providers from acting i n more preferred ways. Attr i b u t i o n s for unhelpful actions. Ninety-six percent of par t i c i p a n t s with M.E. and 83% of close others offered at least one a t t r i b u t i o n for unhelpful actions (see Table 22). Providers and r e c i p i e n t s gave very s i m i l a r answers to t h i s question and there were no s i g n i f i c a n t differences between groups. The most 132 Insert Table 2 2 About Here common answer for respondents with M.E. (26%) and the second most frequent one for close others (21%) was ignorance/lack of understanding or knowledge. Recipients often included statements that muted the impact of the unhelpful actions, such as mentioning the nonintentional aspect of the behaviors. Providers r a r e l y added statements regarding t h e i r intentions. Examples given by respondents are included below: She probably just either wasn't thinking or didn't understand what I was getting at. I could have not been getting things across properly. I c e r t a i n l y don't think she would do anything i n t e n t i o n a l l y . [Participant with M.E.] She was just operating out of ignorance. She doesn't recognize the l i m i t a t i o n s of the i l l n e s s . She's never read anything about i t . She keeps saying she w i l l but she hasn't. [Participant with M.E.] Maybe she was having d i f f i c u l t y understanding what I was saying, so her lack of response was because she was t r y i n g to work i t out. She c e r t a i n l y didn't do i t d e l i b e r a t e l y . She never does anything d e l i b e r a t e l y to hurt me—never. [Participant with M.E.] I did not r e a l i z e she was as stressed about i t as she ac t u a l l y was. [Provider] I was doing my best but my s c i e n t i f i c understanding of M.E. does not equal hers. [Provider] Seventeen percent of respondents with M.E. and 13% of providers mentioned power s t r u g g l e / c o n f l i c t i n g views or needs/longstanding pattern. The essence of t h i s category i s that providers and r e c i p i e n t s want or need things that are incompatible with one another, have c o n f l i c t i n g viewpoints, or that one of the parties possesses cert a i n c h a r a c t e r i s t i c s that are not amenable to 133 change (e.g., gender, personality), and an interpersonal c o n f l i c t occurs. For example: He had a father who d r i l l e d i t into him that he didn't have to do anything that women t o l d him to do, to do anything that I said. Even though he's a smart fellow and knows better, i t ' s so ingrained i n him that he s t i l l f a l l s into that pattern. [Participant with M.E.] We had a long discussion about t h i s at one time. Partl y i t was his whole frame of thought. I would c l a s s i f y as important things that to him simply were not important. [Participant with M.E.] In some cases to firmly e s t a b l i s h my boundaries. For example, some cases triggered a defensive reaction with regard to management of my time. [Provider] She needed rest, p h y s i c a l l y and emotionally. I f e l t that such rest was overwhelmingly more urgent than the l i s t of things to do. She f e l t that these things must be done. [Provider] Sixteen percent of respondents with M.E. and 22% of close others gave a t t r i b u t i o n s for unhelpful actions that focused on emotional d i f f i c u l t i e s . Respondents mentioned emotions such as fr u s t r a t i o n , resentment, fear, helplessness, hurt, discouragement, annoyance, impatience, confusion, and anger. For example, four participants said: From his perspective, I'm giving my time and energy to people and causes that he doesn't see as being as important as home and family. And so perhaps he f e e l s somewhat resentful of my time being spent. [Participant with M.E.] The bottom l i n e i s that sometimes I can be r e a l l y abusive emotionally, and unfortunately my family gets i t the worst. Most of the time she's compassionate, and understands, but she can't help but get angry. So I think there's a b i t of h o s t i l i t y b u i l t up. [Participant with M.E.] 134 Because a f t e r three years of f r u s t r a t i o n with doctors and medical people being so unsupportive, numerous t r i p s to emergency rooms, negative responses from ho s p i t a l s t a f f , sometimes these things become too much to put up with and one should blow o f f a l i t t l e pressure or you become t h i s b a l l of repressed feel i n g s . [Provider] Sometimes the stress of a l l t h i s causes me to just emotionally shut down u n t i l I can deal with i t again. I have a hard time dealing with c o n f l i c t or problems I can't control. [Provider] Both respondents with M.E. (13%) and t h e i r close others (17%) indicated that stress was a s i g n i f i c a n t factor that preceded the unhelpful actions. Because she's t i r e d too, having to work, ra i s e four kids, keep the house clean, and having me with a sick body. [Participant with M.E.] It's h i s way of dealing with his stress. He a l l of a sudden has a partner that i s n ' t the same for a l l the years that we were married. Now he has not three dependents but four. And he's not enthusiastic about his job either, so he f e e l s trapped and stressed out. And a l l his dreams of what he would l i k e to.do have gone down the tubes. [Participant with M.E.] I was i l l i n c r i s i s and my mother was i l l and I was sole caretaker of my mother and f e e l i n g r e s e n t f u l that my older brothers and s i s t e r s provided very l i t t l e assistance. [Provider] Sometimes I get t i r e d and i t seems I have so much to do and he can't help out. Feeling overburdened at times. Not getting enough sleep and f e e l i n g at my wits' end. [Provider] Participants with M.E. (8%) and close others (8%) reported t r y i n g to be helpful/overprotectiveness with equal frequency. The f i n a l three categories were denial of problem/forgetfulness (5% of r e c i p i e n t s and 3% of providers), going through a new t r a n s i t i o n (5% of recipi e n t s and 2% of providers), and wanting problems to go away (5% of recipi e n t s and 1% of providers). 135 What prevented close others from acting i n ways that r e c i p i e n t s would have preferred? Providers and r e c i p i e n t s were asked what they thought prevented providers from acting i n a way that p a r t i c i p a n t s with M.E. would have preferred. Eighty-six percent of r e c i p i e n t s and 71% of close others mentioned at least one impediment to e f f e c t i v e action (see Table 23). The most common was ignorance or lack of understanding/knowledge Insert Table 2 3 About Here (28% of r e c i p i e n t s and 25% of providers). Four t y p i c a l statements from respondents were: Ignorance of the i l l n e s s . Also, she didn't know me as well either, because we were just getting to know each other, so she didn't understand that I f e l t insecure at times about my i l l n e s s . [Participant with M.E.] She's not someone who i n t e n t i o n a l l y hurts, she just doesn't understand M.E. Lack of awareness, not knowing enough about the i l l n e s s , not having experience with i t . [Participant with M.E.] Not having a f u l l understanding of what she was/is going through. [Provider] Not r e a l l y knowing what to do. I did respond on what she asked me to do, but i t s t i l l didn't make any difference. The bottom l i n e i s that I need some education on how to cope with her and my own needs. [Provider] The second most commonly reported category was power s t r u g g l e / c o n f l i c t i n g views or needs/longstanding pattern (21% of r e c i p i e n t s and 18% of providers), which was followed by emotional d i f f i c u l t i e s (18% of r e c i p i e n t s and 14% of providers). The varied type of emotional reactions i s apparent by the responses of some participants:. 1 3 6 I see both i n his personalized case and at one support group meeting where we had the caregivers there of people with t h i s i l l n e s s , that they f e e l v ictimized because of our i l l n e s s , and he figures something bad has happened to him. As a r e s u l t , there's a resentment there. [Participant with M.E.] She was a f r a i d — s h e was losing the strong mom that she had always had, and I think i t h i t my daughter that some day she could be where I was. She was a f r a i d to lose me, and I was going through a l o t of pain. When you're going through a l o t of pain, and you're t r y i n g to t e l l someone, I think the other person experiences a l i t t l e b i t of that pain themselves. I wondered sometimes that she might have been a f r a i d that she would have had to look a f t e r me a l l the time, and she had a l i f e to l i v e too. [Participant with M.E.] An i n a b i l i t y to discuss problems when angry or emotionally upset. [Provider] My impatience with the i l l n e s s . [Provider] In some instances, respondents framed the reaction i n dynamic, rather than blaming, terms. That i s , part i c i p a n t s recognized the inherent d i f f i c u l t i e s in dealing with M.E., and did not view the close other as being s o l e l y responsible for the negative exchange that occurred. Instead, respondents r e a l i z e d the influence of one person upon the other and vice versa. For example, one re c i p i e n t said: "Our j o i n t f r u s t r a t i o n s with my i n a b i l i t i e s to do normal things. We were on a holiday and I was too t i r e d and exhausted to do the things we wanted to do. We were both angry and frustrated." Fourteen percent of recipients and 13% of providers said that stress or exhaustion were the main reasons why close others did not respond i n ways they would have preferred. When the type of stress was specif i e d , i t was generally framed i n terms of dealing with the person with M.E. or the burdens i t imposes, or additional stressors (such as work or other interpersonal problems). Awareness That Providers' Actions Were Unappreciated Two questions were asked i n order to gather information regarding post-behavioral awareness. The f i r s t question emphasized timing; of awareness, and the second question focused on how such awareness was obtained. Respondents with M.E. were asked to think back to the most upsetting thing that t h e i r s i g n i f i c a n t other said or did. Within t h i s context, 24% of respondents with M.E. reported that t h e i r s i g n i f i c a n t other r e a l i z e d t h e i r actions were unhelpful at the time, 65% said that they thought the provider became aware l a t e r , and 12% thought that the provider was s t i l l unaware. T h i r t y - f i v e percent of providers said that they r e a l i z e d that t h e i r actions were unhelpful at the time, and 65% said that they became aware l a t e r . Thus, across both samples, the majority said that close others became aware that t h e i r actions were unhelpful a f t e r the f a c t . In terms of how awareness was obtained, 78% of participants with M.E. and 81% of providers said that the l a t t e r became aware that t h e i r actions were unhelpful or upsetting through 1 of 5 ways (see Table 24). These categories are i d e n t i c a l to ones regarding the determination that help was needed i n the f i r s t place. Insert Table 24 About Here By far the most common route to awareness was discussing the issue or t a l k i n g about i t with the close other. A somewhat higher proportion of recip i e n t s (52%) than providers (38%) 138 mentioned t h i s category, X 2 (1) = 3.35, p_ = .07. The second most common route to awareness was through the expression of emotions such as anger or sadness (13% of r e c i p i e n t s and 18% of providers). A t h i r d category, empathy/understanding/perceptiveness, captures the f a c t that the provider figured i t on his or her own due to previous experience with the r e c i p i e n t , or through an a b i l i t y to pick up on cues (7% of r e c i p i e n t s and 7% of providers). Eight percent of providers and 2% of r e c i p i e n t s ascertained that close others' actions were unhelpful or upsetting by observing or looking at r e c i p i e n t s ' reactions. F i n a l l y , respondents indicated that voice tone or body language were sometimes used as cues (2% of r e c i p i e n t s and 5% of providers). 139 Discussion Helpful Actions Consistent with a l l other research investigating supportive and unsupportive actions of people coping with s t r e s s f u l l i f e events (e.g., Dakof & Taylor, 1990; Lehman et a l . , 1986; Lehman & Hemphill, 1990; Martin et a l . , 1994), emotional support was considered to be e s p e c i a l l y h e l p f u l . Clearly, emotional support i s a p a r t i c u l a r l y valued aspect of interactions between people that cuts across types of s t r e s s f u l l i f e events. Different types of p r a c t i c a l assistance, such as helping with d a i l y a c t i v i t i e s and providing accommodations were valued by people coping with M.E. This finding adds to our sense that M.E. i s a disorder that presents many s i g n i f i c a n t physical challenges to those who cope with i t . Such r e s u l t s are consistent with research by Barrows (1995), who found severe d e f i c i t s i n a sample of people with M.E. i n a c t i v i t i e s of d a i l y l i v i n g , such as performing housework, shopping, exercise, and recr e a t i o n a l or s o c i a l a c t i v i t i e s . Such a c t i v i t i e s may be even more d i f f i c u l t to accomplish i f accompanied by fibromyalgia, which i s often a concomitant of M.E. (Buchwald & Komaroff, 1991) . Providers were somewhat less l i k e l y than r e c i p i e n t s to report that tangible support was p a r t i c u l a r l y h e l p f u l for people coping with M.E. I t i s plausible that providers underestimate the importance of tangible assistance because they assumed that other forms of support, such as emotional assistance, are valued more highly than the seemingly mundane a c t i v i t i e s associated with day-to-day l i v i n g . Although t h i s may be true in a number of circumstances, the strong endorsement of tangible support 140 indicates, that such assistance i s also considered to be very h e l p f u l for people coping with M.E. People with M.E. may be least l i k e l y to afford cleaning and repair services when they become i l l because they are unable to work and earn an adequate income to pay for them, yet t h i s i s p r e c i s e l y when the services are most needed. These findings suggest that a l l e v i a t i o n of burden associated with i n a b i l i t y of people with M.E. to accomplish d a i l y a c t i v i t i e s w i l l be s i g n i f i c a n t l y appreciated. Thus, help from family, friends, or government or volunteer agencies where available may reduce stressors and possibly enhance r e c i p i e n t s ' moods. Unhelpful Actions As hypothesized, a large proportion of unhelpful or upsetting actions focused upon minimization of the i l l n e s s , or an overestimation of what recipien t s are able to accomplish. Perhaps t h i s i s due to providers comparing the physical appearance of the person with M.E. with t h e i r schemata of what someone who i s i l l should look l i k e (Lehman & Hemphill, 1990). Because many M.E. symptoms are i n t e r n a l , people with the i l l n e s s are l i k e l y to look r e l a t i v e l y well, and close others may overestimate what rec i p i e n t s are able to accomplish, and consequently engage in unhelpful actions. Also as expected, unhelpful actions included avoidance of the person with M.E. (Conant, 1990), both i n behavioral and emotional terms. Thus, respondents indicated that providers avoided contact or did not include r e c i p i e n t s i n s o c i a l a c t i v i t i e s with them (behavioral avoidance) and closed off communication (emotional avoidance). Avoidance may stem from providers' desires to control t h e i r anxiety in situations that 141 are highly s t r e s s f u l (Dunkel-Schetter & Wortman, 1982), or feelings of ineptitude r e s u l t i n g from t r y i n g unsuccessfully to improve the r e c i p i e n t s ' mood (Coyne et a l . , 1988; Notarius & Herrick, 1988). Unfortunately, behavioral and emotional avoidance w i l l l i k e l y lead providers to have a decreased sense of r e c i p i e n t s ' problems, and exacerbate unhelpful actions i n the form of further communication breakdown, minimization of the i l l n e s s , and f a i l u r e to provide wanted or needed assistance. Consistent with predictions, respondents indicated that giving advice was not appreciated. Uncertainty about how to behave i n interactions with people experiencing l i f e c r i s e s may lead providers to f a l l back on scripted or automatic support attempts such as giving advice (Lehman et a l . , 1986). To the extent that providers are experiencing additional stressors due to t h e i r close others' i l l n e s s (Gottlieb & Wagner, 1991), they may want "quick-fix" solutions, and o f f e r i n g advice i s one way to t r y to improve the r e c i p i e n t s ' s i t u a t i o n . Offering advice i s advantageous to providers because i t t y p i c a l l y involves expenditure of very l i t t l e energy for them, and because i t provides a problem-focused strategy (Lazarus & Folkman, 1984). However, re c i p i e n t s may not appreciate such an approach because i t implies that t h e i r problems are e a s i l y solved, and that they are not t r y i n g hard enough to get better. Interpersonal T r a i t s Dunkel-Schetter and Skokan (1990) i d e n t i f i e d provider and r e c i p i e n t factors as being p o t e n t i a l l y important in r e l a t i o n to support attempts. In the present study, r e c i p i e n t s ' personality dimensions were associated with supportive and unsupportive behaviors to a lesser extent than were corresponding dimensions 142 for providers. These findings w i l l be discussed in turn. The paucity of associations between r e c i p i e n t s ' t r a i t s and t h e i r views of providers' supportive and unsupportive behaviors i s i n l i n e with the notion that r e c i p i e n t s ' personality c h a r a c t e r i s t i c s do not tend to " p u l l " p a r t i c u l a r h e l p f u l and unhelpful actions from providers. Nonetheless, an exception was noted for Agreeableness. M.E. respondents high on Agreeableness reported fewer C r i t i c a l and Distancing actions by close others than those low on t h i s dimension. It i s possible that highly Agreeable r e c i p i e n t s do a better job of muting providers' unfavorable behaviors than those low on Agreeableness. That i s , people with M.E. who are i n c l i n e d toward interpersonal t r u s t and consideration of others may be able to accept what has happened to them with less anger (Gottman, 1993) and report fewer complaints (Buss, 1991). Moreover, they may be more l i k e l y to use reason and emphasize the p o s i t i v e aspects of a s i t u a t i o n than t h e i r low Agreeableness counterparts (Buss, 1992) . These responses, i n turn, may lead to fewer aversive behaviors by providers. Providers' p e r s o n a l i t i e s were correlated with t h e i r s e l f -reported supportive and unsupportive behaviors. Extraversion, Agreeableness, Conscientiousness, and Openness subscales of the BFI were p o s i t i v e l y related to the Nurturance factor of the SAS-C. This factor was negatively related to Neuroticism. These findings are consistent with previous research which suggests that the provision of Nurturant actions i s extremely important (Dakof & Taylor, 1990; Davidowitz & Myrick, 1984; Martin et a l . , 1994; Wortman & Lehman, 1985). The present study extends past findings by in d i c a t i n g that such behaviors cut across 143 personality dimensions, that i s , are related to many d i f f e r e n t robust t r a i t s . Extraversion from the BFI was associated with providers' ratings of t h e i r LM (Nurturant) and NO (Engaging) actions on the SAS-C. This i s perhaps not surprising, given that the LM (Nurturant) and NO (Engaging) octants are highly correlated (Wiggins & Trobst, i n press). Connell and D'Augelli (1990) found that a f f i l i a t i v e individuals receive supportive behaviors. Results of the present study extend those of Connell and D'Augelli (1990) by obtaining data from providers (rather than r e c i p i e n t s ) , and by examining the s p e c i f i c types of supportive and unsupportive behaviors that are associated with extraversion. Thus, i t i s p a r t i c u l a r l y those supportive actions that involve the provision of love and status (Foa, 1965) to r e c i p i e n t s with M.E. that are associated with providers' Extraversion. Agreeableness was also related to providers' reports of t h e i r supportive and unsupportive behaviors. Thus, agreeable ind i v i d u a l s reported fewer DE ( C r i t i c a l ) actions, and more J K (Deferential), LM (Nurturant), and NO (Engaging) behaviors. Previous research has found that low agreeableness predicts marital d i s s a t i s f a c t i o n (Kelly & Conley, 1987). In s o c i a l support terms, low agreeableness may be related to fewer hel p f u l and more unhelpful actions. Neuroticism was related to providers' reports of more DE ( C r i t i c a l ) , FG (Distancing) and HI (Avoidant) actions, and fewer LM (Nurturant) actions. These r e s u l t s are consistent with previous research that has found that neuroticism or emotional i n s t a b i l i t y i s the most consistent personality predictor of 144 r e l a t i o n s h i p i n s t a b i l i t y (Buss, 1991). Neuroticism i s strongly related to r e a c t i v i t y to stressors (Bolger & S c h i l l i n g , 1991), suggesting that providers may not deal e f f e c t i v e l y with r e c i p i e n t s ' M.E. status. In turn, neurotic i n d i v i d u a l s are l i k e l y to engage i n fewer supportive behaviors and more unsupportive ones. Conscientiousness and Openness were associated primarily with supportive actions i n the present study. Thus, Conscientiousness and Openness were both p o s i t i v e l y related to LM (Nurturant) actions of the SAS-C. In addition, Openness was associated with NO (Engaging) actions. Future research should be directed toward an examination of the s p e c i f i c ways i n which these dimensions play a role in the support process. For instance, are the actions that Conscientious and Open indi v i d u a l s perform h e l p f u l by themselves? Or are they b e n e f i c i a l largely because they e l i c i t actions from t h e i r r e c i p i e n t s that i n turn make providers f e e l better? Helpful and Unhelpful subscales of the SSBQ were calculated for close others, and then correlated with providers' personality dimensions of the BFI. The SSBQ Helpful composite was related to a l l of the BFI scales. This suggests that, even though only two of the factors (Extraversion and Agreeableness) are primarily interpersonal in nature (Wiggins, 1979), there are interpersonal correlates of the other ones. For example, a neurotic person may experience d i s t r e s s i n t e r n a l l y , but i t may also be manifested interpersonally (Kelly & Conley, 1987) . The Unhelpful composite was associated only with Openness. Open indivi d u a l s are receptive toward varied experiences and ideas (Costa & McCrae, 1985), and t h e i r suggestions and actions 145 may have been unappreciated because they were considered to be too unconventional or unusual. The findings from the SSBQ are generally consistent with those from the SAS-C. Thus, for both sets of measures, the majority of s i g n i f i c a n t associations were found for s o c i a l l y desirable actions (Helpful subscale of the SSBQ; LM and NO octants of the SAS-C). There were far fewer r e l a t i o n s for s o c i a l l y undesirable actions (Unhelpful subscale of the SSBQ; PA and BC of the SAS-C). Nonetheless, there were a greater number of r e l a t i o n s between the dimensions of personality and the SAS-C than the SSBQ subscales. Thus, Agreeableness was associated with DE ( C r i t i c a l ) actions, but not the SSBQ Unhelpful composite. S i m i l a r l y , Neuroticism was related to a number of undesirable SAS-C octants (DE, FG, and HI), but not the Unhelpful subscale of the SSBQ. These differences may be due to differences i n the scales themselves. The SAS-C i s considered to be a better measure of h e l p f u l and unhelpful actions than the SSBQ because of the former's established t h e o r e t i c a l t r a d i t i o n , rigorous scale construction, and superior psychometric q u a l i t i e s , and because i t affords a more fine-grained analysis of the r e l a t i o n s between personality and supportive and unsupportive behaviors. Respondents' Understanding of the Support Process Most important assistance. Consistent with data from the most hel p f u l assistance question, providers and r e c i p i e n t s indicated that the most important assistance primarily revolved around emotional (49% of r e c i p i e n t s and 45% of providers; see also Dakof & Taylor, 1990; Davidowitz & Myrick, 1984; Goldsmith, 1992; Lehman et a l . , 1986) and tangible (33% of r e c i p i e n t s and 146 30% of providers; see also Lehman & Hemphill, 1990; Martin et a l . , 1994) support. Data from the present study are i n l i n e with the notion that M.E. i s a serious i l l n e s s that sometimes a f f e c t s those a f f l i c t e d with i t i n devastating ways. Thus, pa r t i c i p a n t s with M.E. indicated that, at the time when they most needed assistance, help focused on tangible aspects (cooking, cleaning) and personal care (such as showering and dressing; see also Barrows, 1995). Previous research has shown that people coping with s t r e s s f u l l i f e events that pose physical challenges ask for tangible assistance, whereas those that are coping with primarily cognitive or emotional challenges r a r e l y request such assistance (see Lehman & Hemphill, 1990, for a review). An extreme form of assistance, needing an ambulance or someone to bring the re c i p i e n t to the hospit a l , was mentioned somewhat more often by close others than respondents with M.E. Perhaps t h i s i s because such situations are more memorable for providers than r e c i p i e n t s . People with M.E. t y p i c a l l y experience substantial challenges that they may not share with others (Conant, 1990; S i l v e r et a l . , 1990). Thus, going to the hosp i t a l may be considered to be merely an extension of discomfort and fatigue that are experienced every day by persons with M.E. Providers may be unaware of much of the r e c i p i e n t s ' suffering, and r e g i s t e r going to the hospital as an indicator of how poorly the person with M.E. i s r e a l l y doing. In other words, the backdrop of unpleasant experiences i s more pronounced for the r e c i p i e n t than i t i s for the provider, and therefore such negative situations may serve as markers for the need for assistance to a greater extent for close others. 147 In the present sample, 12% of respondents with M.E. said that the most important support they received revolved around others making decisions for them or acting on t h e i r behalf. Although previous research with individuals with MS has found that r e c i p i e n t s appreciate i t when s i g n i f i c a n t others make he l p f u l accommodations (Lehman & Hemphill, 1990), some researchers have suggested that others taking charge of care i s unappreciated (Coyne et a l . , 1988), i n part because i t may be viewed as f o i s t i n g incapacitation on the r e c i p i e n t (Peters-Golden, 1982). It i s suggested that a subset of people with M.E. i n the present sample did not have problems with others doing things for them because they were quite i l l and could not do them for themselves. If anything, close others probably erred i n the d i r e c t i o n of not providing enough support rather than providing too much. This interpretation i s bolstered by findings from the "most unhelpful" question. Even though a small percentage of part i c i p a n t s with M.E. found others' e f f o r t s to a s s i s t them to be unhelpful because they were viewed as overly protective or patronizing (5%), i t was much more common for respondents with M.E. to say that others' unappreciated e f f o r t s involved minimizing seriousness of the i l l n e s s , not providing enough accommodations (33%), or f a i l u r e to provide assistance (10%). How awareness of the support process was obtained. Respondents used the same methods to assess that support was needed (pre-behavioral awareness) as they used to gauge that providers' actions were unhelpful or upsetting (post-behavioral awareness). Therefore, both of these questions w i l l be discussed here. For both questions, providers and re c i p i e n t s said that the 148 most common way that close others became aware that support was needed was through discussion or t a l k i n g . This suggests that, even though the communication process may be adversely affected by experiencing s t r e s s f u l l i f e events (Coyne et a l . , 1988; Meyerowitz et a l . , 1983; S i l v e r & Wortman, 1980), i n many cases communication i s c l e a r l y a s i g n i f i c a n t factor i n enhancing awareness. These r e s u l t s are consistent with those of Study 1, i n which a substantial minority of r e c i p i e n t s reported that they discussed the issue r a t i o n a l l y with providers when confronted with unhelpful actions from them. For the post-behavioral awareness question, a somewhat larger proportion of r e c i p i e n t s (52%) than providers (38%) mentioned discussing the issue/talking as an i n f l u e n t i a l method. This may have been because respondents with M.E. were unaware of additional methods used by close others due to a lack of information regarding the l a t t e r ' s i n t e r n a l states. To put i t another way, providers who were asked to r e c a l l how awareness was obtained were able to r e l y on t h e i r thoughts, feelings, and behaviors about negative exchanges, whereas r e c i p i e n t s could not r e l y on such factors. If t h i s reasoning i s correct, then a variable that may enhance awareness i s communication/relationship q u a l i t y (Fincham, Beach, & Baucom, 1987). Thus, as people with M.E. and t h e i r close others discuss d i f f e r e n t issues, r e c i p i e n t s may gain a greater understanding of providers' in t e r n a l states. An additional advantage i s that intimacy i s related to greater s a t i s f a c t i o n with s o c i a l support (Hobfoll, Nadler, & Lieberman, 1986; Hobfoll et a l . , 1991). When there was a difference (or a trend) between providers and r e c i p i e n t s , providers used more emotionally charged cues and 149 i l l n e s s - r e l a t e d signs than recipi e n t s r e a l i z e d to assess that support was needed. For example, providers were more l i k e l y to r e l y on physical incapacitation or poor physical health, and there was a trend for emotional d i f f i c u l t i e s / d i s t r e s s . Part of t h i s may have to do with the d i f f e r e n t i a l focus of attention for providers and r e c i p i e n t s . That i s , M.E. p a r t i c i p a n t s ' attention i s focused outward and away from themselves, whereas providers look at the target i n d i v i d u a l (Jones & Nisbett, 1971; Storms, 1973). As a r e s u l t , providers may be able to r e c a l l factors that are associated with the r e c i p i e n t s ' emotional and physical state to a greater extent. Mere attention may not be enough to account for a l l of the e f f e c t s , however, as observing/looking did not d i f f e r across groups for the question assessing that support was needed and observation/looking only approached s i g n i f i c a n c e for awareness regarding unhelpfulness of actions. Taken together, there was mixed support for the notions that increased salience and perceptually prominent factors may explain provider/recipient differences. More close others than participants with M.E. mentioned that r e c i p i e n t s needed support because of confusion or becoming l o s t . These r e s u l t s support Barrow's (1995) findings that almost a l l of her c l i e n t s reported that they got l o s t while dr i v i n g , and many had d i f f i c u l t i e s with attention, learning new material, word finding, and c a l c u l a t i o n a b i l i t i e s . S i m i l a r l y , Sandman, Barron, Nackoul, Goldstein, and F i d l e r (1993) report that people with M.E. overestimate t h e i r a b i l i t y , and have s i g n i f i c a n t memory d e f i c i t s . These r e s u l t s suggest that r e c i p i e n t s may report confusion or becoming l o s t less often than providers because the former do not recognize that they have 150 such problems, or do not f u l l y appreciate t h e i r impact. Congruence Ratings Consistent with anecdotal accounts, s e l f - h e l p l i t e r a t u r e , and case studies (e.g., Conant, 1990; Maclntyre, 1989), people with M.E. reported that they experienced more physical symptoms (regardless of whether or not they were observable) than t h e i r close others mentioned. The findings were less c l e a r for psychological symptoms. There was a trend for providers to indicate that r e c i p i e n t s were experiencing more depressive symptoms than recipi e n t s actually reported. This may be due to the emphasis on depression in the s c i e n t i f i c l i t e r a t u r e (see Dutton, 1992, for a review). Thus, providers may have assumed that t h e i r close others with M.E. were experiencing depression because such symptoms are often mentioned in a r t i c l e s and the media as being an in t e g r a l part of the i l l n e s s . In support of such a notion, providers' views of psychological etiology were also related with t h e i r reports of psychological symptoms. M.E. rec i p i e n t s , on the other hand, may have r e l i e d less on what they have read or heard about the i l l n e s s , and instead concentrated on t h e i r own symptoms. Interestingly, not a l l psychological symptoms were reported more often by providers than r e c i p i e n t s , as the l a t t e r said that anxiety was somewhat more common than the former. As anticipated, providers' supportive actions (as measured by t h e i r Helpful actions subscale of the SSBQ) were related to observable and unobservable physical symptoms. S i m i l a r l y , the Nurturant factor of the SAS-C was s i g n i f i c a n t l y associated with unobservable and marginally associated with observable physical symptoms. These findings suggest that providers w i l l o f f e r 151 assistance when there are physical problems (Dakof & Taylor, 1990; Lehman & Hemphill, 1990). Moreover, i t i s not necessary for providers to be able to observe physical symptoms for help to be offered. Rather, close others only need to believe that physical problems are being experienced by people coping with M.E. Although the unhelpful actions composite was unrelated to physical symptoms, the Avoidance factor of the SAS-C was marginally associated with unobservable physical symptoms. If Avoidance can be considered to be a form of unhelpful actions, a suggestion supported by previous research (Lehman & Hemphill, 1990), then p a r t i a l evidence for the association between unhelpful actions and physical symptoms was found. Discrepancies between r e c i p i e n t s ' and providers' symptom ratings, and the associations between such ratings and supportive and unsupportive behaviors were calculated. As predicted, higher ratings of observable and unobservable symptoms by rec i p i e n t s r e l a t i v e to providers were s i g n i f i c a n t l y associated with the unhelpful subscale. That i s , providers tended to of f e r actions that were unappreciated by r e c i p i e n t s when the l a t t e r indicated that they were more impaired than did the former. Contrary to predictions, observable and unobservable physical symptom residuals were unrelated to the h e l p f u l subscale. In other words, recipie n t s were not more l i k e l y to report that providers offered actions that were appreciated when rec i p i e n t s and providers held s i m i l a r views regarding impairment of people with M.E. This r e s u l t may have been due to the large percentage of he l p f u l actions. That i s , r e c i p i e n t s indicated that providers offered a substantial number of he l p f u l actions 152 (M = 4.00, SD = .85). Unfortunately, the present study r e l i e s on the reports of close others who are w i l l i n g to complete t h e i r own questionnaires. As a r e s u l t , there may have been a bias toward providers who are p a r t i c u l a r l y supportive. In future studies, r e c i p i e n t s might be asked to report on a range of close others (e.g., Dakof & Taylor, 1990; Martin et a l . , 1994) who vary i n terms of supportiveness, to determine i f discrepancies of ratings are associated with he l p f u l and unhelpful actions. The same set of analyses were conducted for psychological symptoms. Providers' views of he l p f u l actions were p o s i t i v e l y related to anxiety, and unhelpful actions (on the SSBQ) were p o s i t i v e l y related to anxiety and depression. Only the Dominance factor from the SAS-C was s i g n i f i c a n t l y related to anxiety, and marginally related to depression. Thus, i t appears that psychological symptoms may be associated with both the presence of supportive and unsupportive behaviors, depending upon the measures used. The findings regarding r e l a t i o n s between unsupportive actions and psychological symptoms are consistent with Coyne's (1976) i n t e r a c t i o n a l theory of the s o c i a l environment's r o l e i n maintaining depression. B r i e f l y , the theory posits that stress (in t h i s case, development of the M.E.) produces depressed a f f e c t i n the person experiencing i t , signaling the need for support and reassurance. Previous research i s i n l i n e with the notion that there are elevated rates of depression among people with M.E. (Abbey & Garfinkel, 1991; Dutton, 1992; Katon, Kleinman, & Rosen, 1991; Kruesi, Dale, & Straus, 1989). According to Coyne's (1976) model, expression of negative a f f e c t by the a f f l i c t e d i n d i v i d u a l creates depressed mood in close 153 others across time, which leads to aversive interactions which are perpetuated in a vicious cycle. If the s i t u a t i o n does not resolve i t s e l f , as i n the case of M.E. which i s , by d e f i n i t i o n , chronic, providers may simultaneously experience annoyance and g u i l t . Unsupportive behaviors, such as nongenuine reassurance and avoidance, may r e s u l t . Discrepancies between raters for anxiety were associated with unhelpful actions (on the SSBQ), such that r e c i p i e n t s who believed they experienced more d i s t r e s s than providers reported also said that close others offered more unhelpful actions. S i m i l a r l y , standardized residuals for depression were also related to Avoidance (on the SAS-C), and marginally associated with anxiety. Providers who reported fewer psychological symptoms than r e c i p i e n t s tended to avoid the l a t t e r . These findings are i n l i n e with previous research that highlights r e l a t i o n s between di s t r e s s and avoidance (Coyne, 1976; Wortman & Lehman, 1985), but extends these r e s u l t s by also examining discrepancies between providers' and r e c i p i e n t s ' reports. Thus, supportive and unsupportive behaviors are related not only to the absolute number of psychological symptoms, but also to the lack of correspondence between raters. Discrepancy scores may be considered to be estimates of accuracy (John & Robins, 1994). If r e c i p i e n t s are considered to be more accurate than providers due to the former's greater access to i n t e r n a l states (Funder, 1980) and understanding across a range of si t u a t i o n s , then minimization of symptoms (Lehman & Hemphill, 1990) by providers i s associated with unhelpful actions. 154 Perceived Causes of M.E. Powell and colleagues (Powell et a l . , 1990; Wessely & Powell, 1989), i n one of the few studies to date that has attempted to examine the perceived causes of M.E., found that 80% of people with M.E. attributed t h e i r i l l n e s s to a physical cause; only one patient wrote "depression." Such views were co l l e c t e d by using a 5-point scale ranging from "My i l l n e s s i s a physical one" to "My i l l n e s s i s psychological i n nature." In contrast, the present study included f i n e r d i s t i n c t i o n s between causal factors. Thus, respondents gave answers on multiple 5-point scales (e.g.., a v i r a l i n f e c t i o n , toxins, worrying, stress, e t c . ) , and were not required to c l a s s i f y such views according to the mind-body d i s t i n c t i o n . Moreover, i n the present study open-ended answers from people with M.E. were coded according to content. The data captured the greater complexity of views by respondents than that gathered by Powell et a l . (1990), h i g h l i g h t i n g the need to obtain d e t a i l e d assessments of perceived causation. Consistent with Powell et a l . (1990), the majority of par t i c i p a n t s indicated that the i l l n e s s was due to physical causes (such as v i r u s / f l u / b a c t e r i a / i n f e c t i o n ; immune system disturbance; other physical problem; genetic factors/predisposition; vaccine/antibiotics/anesthesia). Contrary to Powell et a l . (1990), however, a substantial proportion of partic i p a n t s (48%) also endorsed "psychological" causes such as stress/overwork/overactivity and emotional factors. Thus, when part i c i p a n t s were able to spontaneously report perceived causal factors, and were given multiple scales that emphasized various antecedents, the complexity of t h e i r views became apparent. 155 However, when respondents were asked merely to make a d i s t i n c t i o n between physical and psychological causes, as was the case i n Powell et a l . ' s (1990) study, p a r t i c i p a n t s tended to emphasize physical ones. Results of the present study are consistent with the seemingly contradictory findings that a substantial number of people with M.E. experience depression (see Dutton, 1992, for a review) yet view t h e i r i l l n e s s as caused by an i n i t i a l , presumably v i r a l , i l l n e s s (see Hotopf & Wessely, 1994, for a review). This v i s because the methodology used in the present study enabled respondents to describe lengthy causal chains with multiple causes. Although people with M.E. recognized the existence of psychological symptoms, and even viewed them as marginally more important than close others did i n terms of etiology, they also emphasized the contribution of physical factors. These findings are consistent with Kelley's (1972) assertion that people often generate multiple causes for an event. This tendency may even be exacerbated as seriousness of a s i t u a t i o n increases. I t was not a goal of the present study to determine whether psychological or physical causes more accurately r e f l e c t the etiology of M.E. In fact, the medical profession i s divided on t h i s issue, and there are proponents of both perspectives. Consistent with Wessely and Powell (1989), i t i s suggested that such d i s t i n c t i o n s are e s s e n t i a l l y meaningless because of the influence of b i o l o g i c a l factors in p s y c h i a t r i c i l l n e s s e s and vice versa. It i s proposed here that, rather than perpetuate t h i s f a l s e dichotomy, i t i s perhaps more f r u i t f u l from a pragmatic perspective to expand professionals' and the public's 156 view to include multidimensional causal factors. Moreover, given the r e l a t i o n s between providers' perceived psychological causes and r e c i p i e n t ' s reports of fewer supportive and more unsupportive behaviors i n the present study, i t may not be p a r t i c u l a r l y therapeutic, and may well be counter-therapeutic, to t e l l people that the i l l n e s s i s " a l l in the mind" (Kendall, 1991). Instead, personal r e s p o n s i b i l i t y , and factors that are within an i n d i v i d u a l with M.E.'s personal control, may be taught in an empathic way in order to a s s i s t i n a l l e v i a t i n g M.E. symptoms through problem-focused coping e f f o r t s (Lazarus & Folkman, 1984). It i s equally important to emphasize physical causes because such an etiology has the advantage of reduced g u i l t and self-esteem preservation (Powell et a l . , 1990). The disadvantages of emphasizing only physical causes include helplessness due to the b e l i e f that the i l l n e s s i s untreatable, increased fatigue, lack of s e l f - e f f i c a c y , and diminished r e s p o n s i b i l i t y for one's health (Powell et a l . , 1990). In sum, i t i s perhaps most worthwhile for r e c i p i e n t s ' well-being to emphasize p o s i t i v e aspects of psychological and physical causative factors that are consistent with p r e v a i l i n g medical opinions regarding etiology. Emphasizing one at expense of the other may be detrimental by undermining self-esteem or diminishing views of personal r e s p o n s i b i l i t y . The present study extended previous research by investigating the r e l a t i o n s between perceived causes and h e l p f u l and unhelpful actions. There were a larger number of s i g n i f i c a n t r e l a t i o n s between the Psychological factor and supportive and unsupportive behaviors than between the Environmental/Genetic factor or Virus and such behaviors. A 157 stringent t e s t of the r e l a t i o n s between causal factors and behaviors was used in the present study. This i s because causal factors were reported by providers and s o c i a l support measures were c o l l e c t e d from r e c i p i e n t s . Problems of response s t y l e s , such as acquiescence, s o c i a l d e s i r a b i l i t y , or extremity (Wiggins, 1973) by single raters were avoided i n the present study because of the use of multiple raters (Johnson et a l . , 1993). Nonetheless, i t must be acknowledged that the Psychological factor, with which most of the s i g n i f i c a n t associations were found, contained f i v e items, and had the highest Cronbach's alpha (.78). In contrast, the Environmental/Genetic factor comprised only three items, and had a lower alpha (.69). Virus comprised a single item. Therefore, an a l t e r n a t i v e explanation i s that there were a larger number of s i g n i f i c a n t r e l a t i o n s between Factor 1 than Factor 2 or Virus with supportive and unsupportive behaviors because the former set of items tapped into the construct more r e l i a b l y than the l a t t e r two. In order to test these p o s s i b i l i t i e s i n greater d e t a i l , future researchers w i l l benefit from gathering information regarding causal factors that are comparable i n terms of psychometric q u a l i t i e s . Thus, more rigorous scale construction needs to be attempted now that important causal factors have been i d e n t i f i e d . Constraints Two classes of constraints, a t t r i b u t i o n s for unhelpful actions and factors that prevented providers from acting in more preferred ways, w i l l be discussed below. 158 A t t r i b u t i o n s . Results from Lehman and Hemphill (1990) and Studies 1 and 2 converge on the notion that r e c i p i e n t s overwhelmingly a t t r i b u t e others' unhelpful actions to benign causes. The present study extends t h i s work by investigating perceived causes of unhelpful actions by close others. Providers and r e c i p i e n t s gave s i m i l a r a t t r i b u t i o n s across a l l categories. Thus, providers reported that they engaged i n unsupportive behaviors for si m i l a r reasons as those mentioned by r e c i p i e n t s . Previous researchers have asked whether or not supportive and unsupportive behaviors are due to lack of understanding or knowledge on behalf of providers. Evidence that i s both consistent (Johnson et a l . , 1993; Lehman & Hemphill, 1990; Peters-Golden, 1982) and inconsistent (Lehman et a l . , 1986) with such a claim has been gathered. Data from the present study support the ignorance/lack of understanding perspective. Nonetheless, such an interpretation cannot account f u l l y for the presence of unhelpful actions. Thus, parti c i p a n t s indicated other factors such as power struggles or c o n f l i c t i n g views of providers and recipi e n t s (Goldsmith, 1992), emotional d i f f i c u l t i e s (Gottlieb, 1991; Wortman & Lehman, 1985), and additional stressors (Holmes & Rahe, 1967) that may involve accurate understanding from providers' perspectives. Perhaps a more comprehensive way to address t h i s issue i s to suggest that the presence of understanding/knowledge i s important to prevent unsupportive behaviors from being offered, but that unhelpful actions may s t i l l occur i f other unfavorable conditions e x i s t . 159 Impediments to e f f e c t i v e actions. Providers and r e c i p i e n t s gave si m i l a r answers when asked what prevented providers from acting i n a more preferred way. Moreover, the categories mentioned by respondents were the same ones that were reported for the previous ("attribution") question. Thus, the primary reason given was ignorance/lack of understanding or knowledge (Lehman & Hemphill, 1990; Peters-Golden, 1982). Assuming that such views are an accurate r e f l e c t i o n of r e a l i t y , then enhanced provider education about the i l l n e s s i s suggested. Thus, informational resources such as books, a r t i c l e s , and consultation with s p e c i a l i s t s may be b e n e f i c i a l . Furthermore, enhanced communication between providers and r e c i p i e n t s may reduce problems that are due to providers' ignorance about what to do. However, i t i s clear that enhanced knowledge about the i l l n e s s i s only one important factor, and that there are other impediments to e f f e c t i v e action for providers and r e c i p i e n t s that may be more d i f f i c u l t to combat. For instance, stressors (Conant, 1990; Feiden, 1990) and emotional d i f f i c u l t i e s (Dutton, 1992) may be natural concomitants of the disorder. Stressors, such as s t r a i n of household duties, f i n a n c i a l burden, time pressures and demands of providers at work, may be p a r t i c u l a r l y d i f f i c u l t to deal with. Although psychotherapeutic techniques such as implementation of coping strategies designed to f a c i l i t a t e constructive responses to stressors, and cognitive therapy for depression, may improve the s i t u a t i o n , such problems may be chronic, e s p e c i a l l y given the chronic nature of M.E. Moreover, providers' coping e f f o r t s may c o n s t r i c t or i n t e r f e r e with the coping e f f o r t s of r e c i p i e n t s (Lane & Hobfoll, 1992). This problem was evident in the present study, i n which 160 respondents mentioned power struggles and c o n f l i c t i n g views between parti c i p a n t s with M.E. and close others. Previous research has supported the notion that coping strategies that improve an individual's well-being may be detrimental to close others (Coyne & Smith, 1991), and that successful management of chronic stress may depend heavily upon how e f f e c t i v e l y providers and r e c i p i e n t s coordinate t h e i r coping e f f o r t s (O'Brien & DeLongis, i n press). Method of Data C o l l e c t i o n Because of p r a c t i c a l considerations, unlike with p a r t i c i p a n t s with M.E., i t was not possible to interview providers. Therefore, t h e i r data are based on questionnaire, rather than interview, responses. I t i s possible that differences between groups, or lack thereof, may be due to the d i f f e r e n t methodologies used for each group. However, there are several points that argue against such a suggestion. F i r s t , providers gave responses that were codable into the same categories mentioned by recipients, even though there was less d e t a i l provided from the questionnaire data. Second, previous researchers in the area of stress and coping have found useful open-ended data from questionnaires (Pennebaker, 1989). For instance, Lehman and Hemphill's (1990) findings with p a r t i c i p a n t s with MS were based upon questionnaires, and responses from participants followed consistent patterns, and were c l e a r l y codable. Third, many comparisons between providers and r e c i p i e n t s were made on questionnaire data, that i s , the two groups were equated at times in terms of methodology. Thus, the SAS-C measure for supportive and unsupportive behaviors and the subscales of the BFI were administered i n questionnaire format, 161 and there were s i g n i f i c a n t r e l a t i o n s between measures for providers and r e c i p i e n t s . Fourth, presentation of questions v i a questionnaire may have resulted i n even more accurate data than presentation v i a interview because providers may have been more w i l l i n g to disclose s e n s i t i v e information about themselves under conditions of anonymity. For example, when asked about impediments to e f f e c t i v e action, one provider answered: " I f she thinks vacuuming i s more important than resting, even when she r e a l l y i s very sick, then to h e l l with her s t u p i d i t y . " I t i s quite possible that such candid responses would not have been as forthcoming from providers i f they were required to t a l k about t h e i r experiences with interviewers, p a r t i c u l a r l y those that pertained to unsupportive behaviors. 162 Chapter 5 Summary of Results and General Discussion The three studies that comprise t h i s d i s s e r t a t i o n have examined supportive and unsupportive behaviors within an interpersonal context. The studies were an i n i t i a l attempt to investigate antecedents and consequences as contextual factors of h e l p f u l and unhelpful actions. The primary aims have been to document p o s i t i v e and negative exchanges between providers and r e c i p i e n t s , map out the t e r r a i n in which h e l p f u l and unhelpful behaviors occur, and develop a framework within which to better understand these findings in the future. The research reported in t h i s d i s s e r t a t i o n w i l l be integrated according to the organizational framework presented e a r l i e r (see Figure 1). In the following sections, an emphasis w i l l be placed upon the supportive and unsupportive exchanges between providers and re c i p i e n t s , pre- and post-behavioral processes, and moderating variables. Behaviors: Helpful and Unhelpful Exchanges A l l three studies investigated supportive and unsupportive behaviors through the use of open- and closed-ended data. Interestingly, there was a substantial amount of consistency of responses from people coping with d i f f e r e n t types of s t r e s s f u l l i f e events. Such findings are in l i n e with t r a d i t i o n a l approaches, which emphasize that interpersonal re l a t i o n s h i p s are u n i v e r s a l l y h e l p f u l (Cohen & W i l l s , 1985). Thus, d i f f e r e n t forms of emotional support figured prominently in the answers provided by respondents for the he l p f u l question. For example, people coping with one of a number of s t r e s s f u l l i f e events mentioned that i t was helpful when providers list e n e d to or 163 talked with them; expressed love, concern, or understanding; were present p h y s i c a l l y ; included them i n s o c i a l a c t i v i t i e s , praised the r e c i p i e n t ; provided encouragement; or removed blame. Such responses are consistent with the growing l i t e r a t u r e that emphasizes the importance of emotional support (e.g., Dakof & Taylor, 1990; Lehman et a l . , 1986; Lehman & Hemphill, 1990; Martin et a l . , 1994). Unhelpful actions reported across event types include avoidance, cl o s i n g off communication, giving advice, and various forms of minimization and maximization. Respondents generally had l i t t l e d i f f i c u l t y generating answers to the unhelpful question, emphasizing the frequent occurrence of negative interactions (Davidowitz & Myrick, 1984; Rook, 1984). However, there was also support for s p e c i f i c i t y models, that i s , the notion that the effectiveness of supportive actions w i l l depend upon c h a r a c t e r i s t i c s of the stressor (e.g., Cohen & McKay, 1983). For instance, tangible support, such as provision of p r a c t i c a l assistance, was mentioned as e s p e c i a l l y h e l p f u l p rimarily by participants who were ph y s i c a l l y i l l . Thus, people coping with M.E. or other i l l n e s s e s or i n j u r i e s reported that provision of p r a c t i c a l assistance was p a r t i c u l a r l y valued, while few responses of t h i s type were mentioned by people coping with the loss of a loved one. Sim i l a r l y , informational support was reported primarily by respondents coping with events associated with greater control or a favorable course (Buunk et a l . , 1990; Hemphill & Lehman, 1991). Blaming actions were reported to be unhelpful primarily by respondents coping with events that were considered to be mutable or influenced by r e c i p i e n t s ' actions (Schwarzer & Weiner, 1991). 164 Unhelpful actions that were unique to par t i c i p a n t s with M.E. included providers challenging, denying, or not recognizing the seriousness of the i l l n e s s . Such responses were r a r e l y mentioned by people coping with a host of other s t r e s s f u l l i f e events, and may be offered primarily to rec i p i e n t s with M.E. because of skepticism about the i l l n e s s by professionals and laypeople a l i k e . Moreover, many symptoms such as weakness are unobservable (Fisher, 1989) and may be considered to be t r i v i a l to many providers (Dohrenwend & Crandell, 1970). Antecedents Although there i s a clear need to examine antecedents such as providers' b e l i e f s and intentions p r i o r to interactions with r e c i p i e n t s (Lehman et a l . , 1986), l i t t l e research has been conducted on these issues to date. One goal of the present set of studies was to f i l l t h i s void by examining f i v e d i s t i n c t antecedents to he l p f u l and unhelpful actions. F i r s t , d i s p o s i t i o n a l c h a r a c t e r i s t i c s were s i g n i f i c a n t l y associated with s o c i a l support. Personality of providers was more consistently related to supportive and unsupportive behaviors than enduring c h a r a c t e r i s t i c s of r e c i p i e n t s . Thus, a l l f i v e personality dimensions of providers were related to supportive actions, and providers' agreeableness, neuroticism, and openness scores were related to certa i n types of unhelpful actions. However, agreeableness of re c i p i e n t s was only associated with unsupportive behaviors (in an inverse way). Second, need for assistance (Latane & Darley, 1970) was examined from the providers' and r e c i p i e n t s ' points of view, and si m i l a r answers were given from these two groups for most of the dependent variables. Despite the fact that communication issues 165 are often mentioned as being problematic for people coping with s t r e s s f u l l i f e events (Sil v e r et a l . , 1990), both r e c i p i e n t s and providers said that awareness of the need for assistance was obtained most often through discussion/talking. As anticipated, other less d i r e c t indicators of need, such as observation/looking, emotional d i s t r e s s , and voice tone/body language, were also reported. As a whole, respondents tended to report f a i r l y simple methods of perceiving need, and did not mention complex strategies such as movement of f a c i a l muscles, i d e n t i f i c a t i o n of subtle body postures, or disclosure by a mutual f r i e n d . In addition, there were few reports involving introspection, such as b e l i e f s about the coping process (Wortman & S i l v e r , 1989). Third, r e l a t i o n s between reports of physical and psychological symptoms and supportive and unsupportive behaviors were examined. Although recipi e n t s said that they experienced more physical symptoms than providers reported (Conant, 1990; Maclntyre, 1989), the findings were less clear for psychological symptoms. As expected, providers tended to o f f e r unhelpful actions to r e c i p i e n t s when the l a t t e r indicated that they were more p h y s i c a l l y impaired. However, congruence ratings for physical symptoms were unrelated to h e l p f u l actions. Discrepancies between providers and r e c i p i e n t s for psychological symptoms were associated with unhelpful actions, p a r t i c u l a r l y avoidance (Coyne, 1976). Thus, congruence between providers and r e c i p i e n t s with respect to reports of physical and psychological symptoms were pred i c t i v e of s o c i a l support. Fourth, views regarding the cause of M.E. were examined from providers' and r e c i p i e n t s ' points of view. Guided by the 166 work of Weiner and his colleagues (Schmidt & Weiner, 1988; Weiner, 1985), i t was hypothesized that the perceived cause of a s t r e s s f u l l i f e event may a f f e c t subsequent behavior. Consistent with t h i s view, there were several s i g n i f i c a n t r e l a t i o n s between perceived psychological causation and supportive and unsupportive behaviors. It i s quite possible that providers believe that psychological factors are more mutable than physical ones (Hemphill & Lehman, 1991), and that the former views of causation e l i c i t l i t t l e p i t y , much anger, and lack of assistance (Weiner et a l . , 1988). In contrast, providers' views of environmental/genetic and v i r a l causes were largely unrelated to r e c i p i e n t s ' reports of h e l p f u l and unhelpful behaviors. F i f t h , constraints on helpful actions were examined. Interestingly, both providers and r e c i p i e n t s indicated the same factors. Across the three studies, respondents mentioned constraints that emphasized benign factors. In l i n e with previous work (Johnson et a l . , 1993; Lehman & Hemphill, 1990; Peters-Golden, 1982), respondents said that unsupportive behaviors were primarily due to ignorance/lack of understanding or knowledge. Other categories that were mentioned include c o n f l i c t i n g needs or views (Goldsmith, 1992; Lane & Hobfoll, 1992), emotional d i f f i c u l t i e s (Wortman & Lehman, 1985), additional stressors (Holmes & Rahe, 1967), and overprotectiveness (Lehman et a l . , 1986). Consequences Post-support processes of interpersonal, perceptual, and behavioral natures need to be investigated in order to obtain a more comprehensive understanding of human interactions and the c y c l i c a l pattern of communication (Gottman et a l . , 1976). 167 Approximately half of the participants in Studies 1 and 2 reported that they did not say or do anything in response to unwanted actions by providers. Such findings are consistent with the idea that many people coping with s t r e s s f u l l i f e events are reluctant to share t h e i r negative feelings with others (Dunkel-Schetter, 1984; Lehman & Hemphill, 1990; S i l v e r et a l . , 1990). The lack of response may be an attempt to withdraw and avoid confrontation ( B u r c h i l l & S t i l e s , 1988). Nonetheless, not a l l participants were r e t i c e n t . In fact, the main category reported by respondents in Studies 1 and 2 included discussing the issue r a t i o n a l l y with the provider, a strategy that i s often e f f e c t i v e at ameliorating problems i n the future (Coyne et a l . , 1988; Schmaling et a l . , 1989). Other responses included verbal abusiveness, downplaying the problem, blocking communication, acquiescing, and becoming emotional, a l l of which may serve to exacerbate d i f f i c u l t i e s , or at least not contribute to t h e i r resolution. Next, three t h e o r e t i c a l perspectives (equity, reactance, and threat to self-esteem) that can be employed to think about these r e s u l t s w i l l be reviewed. Equity theories are based on the assumption that r e c i p i e n t s attempt to maintain a s i m i l a r r a t i o of outcomes to inputs as those of providers (e.g., Walster et a l . , 1978). Furthermore, skewed d i s t r i b u t i o n s are posited to lead to psychological discomfort and e f f o r t s to achieve equity. Equity theories tend to emphasize assistance that i s appreciated, and have focused less attention on assistance that i s unappreciated. Perhaps t h i s i s because recipie n t s who view the actions of others as p a r t i c u l a r l y unhelpful may terminate such re l a t i o n s h i p s , or 1 6 8 reduce the opportunity to experience such exchanges i n the future. Nonetheless, i t i s possible to interpret negative actions within the model. Thus, i f the provider a l t e r s inputs so that unsupportive actions are offered, then the r e c i p i e n t may respond i n turn to achieve p a r i t y (termed "negative r e c i p r o c i t y " by Jacobson et a l . , 1994). That i s , matching providers' unhelpful actions by r e c i p i e n t s w i l l prevent the l a t t e r from being underbenefited and the former from being overbenefited. Using such a c r i t e r i o n , then there i s some support for equity theory i n t h i s d i s s e r t a t i o n . For instance, r e c i p i e n t s coping with one of a number of s t r e s s f u l l i f e events admitted to becoming verbally abusive (Coyne et a l . , 1988). Nonetheless, only a small minority of r e c i p i e n t s (14% from Study 1 and 7% from Study 2) said that they responded in such a manner. I t i s quite possible that assumptions which apply i n general provision of aid situations where providers and r e c i p i e n t s are both able-bodied individuals w i l l no longer apply, or w i l l apply to a lesser extent, when re c i p i e n t s who are in need of assistance are compromised p h y s i c a l l y . That i s , i n the case of chronic i l l n e s s such as M.E., u n i d i r e c t i o n a l assistance flowing from providers to r e c i p i e n t s may be considered acceptable and may not give r i s e to as many feelings of g u i l t and need to restore, equity by r e c i p i e n t s or feelings or resentment by providers. In fact, successful coping with chronic s i t u a t i o n s involving d i s a b i l i t y may largely depend upon such a shared conception. A l t e r n a t i v e l y , h e l p f u l assistance that i s considered appropriate to restore equity may be d i f f e r e n t for those suffering from a d e b i l i t a t i n g i l l n e s s or d i s a b i l i t y , and restoration of equity in such cases may involve 169 d i f f e r e n t forms of assistance, such as emotional or informational support, given the amount of time and e f f o r t that some forms of aid (e.g., tangible assistance) would involve. In any case, future research needs to be conducted i n order to c l a r i f y these issues, and determine r e c i p i e n t s ' reactions to wanted assistance. There was limited support for reactance theory, which posits that perceived reduction in freedom of choice leads to an unpleasant psychological reaction, and accompanying e f f o r t s to restore such freedom (Brehm, 1966). Perhaps the most extreme methods for r e c i p i e n t s to achieve freedom and autonomy are for them to scream or act in a h o s t i l e manner toward providers; however, only a minority of participants said that they acted t h i s way. In contrast, most of the other classes of responses were more consistent with maintenance of harmony or f r i c t i o n reduction (Stein, 1992). These categories include blocking further communication, being submissive, and downplaying the problem. The need to avoid c o n f l i c t in interactions may be quite strong, given the ideal of positiveness i n communication (Montgomery, 1988). A substantial number of par t i c i p a n t s indicated that they did not say or do anything i n response to the unhelpful actions, which may r e f l e c t t h e i r desire to avoid c o n f l i c t , further unpleasant interactions, and severing of important relationships (Allan, 1979). The categories discussing the issue r a t i o n a l l y with the provider and becoming emotional could r e f l e c t either attempts to restore l o s t freedoms or c o n f l i c t reduction, depending upon the reason that r e c i p i e n t s acted in such a manner, and the manner in which the sequence of events unfolded. Future research may benefit from gathering 170 more detailed information in order to t e s t these notions i n a more fine-grained way. Threat to self-esteem models (e.g., Fisher et a l . , 1982) assume that support provision may comprise negative and p o s i t i v e features, and that reactions to support are determined by t h e i r threatening or supportive aspects. This theory, more so than equity or reactance, i s based on perceptions, and i n t e r n a l thoughts and f e e l i n g s . In terms of the framework being considered i n t h i s d i s s e r t a t i o n , antecedents are intimately connected with consequences. Threat to self-esteem approaches assume that help that i s seen as threatening w i l l lead to negative reactions, whereas help that i s seen as supportive w i l l lead to p o s i t i v e reactions. Although Fisher et a l . (1982) have formulated a w e l l - a r t i c u l a t e d self-esteem model, the model does not include statements regarding h e l p f u l and unhelpful actions, and i t i s therefore d i f f i c u l t to test such predictions. Moreover, reactions to supportive interactions were not investigated i n the present study, so i t i s only possible to t e s t part of the model (responses to unhelpful actions). Nonetheless, there are findings in the present set of studies that are consistent with such a t r a d i t i o n . In terms of antecedents, the two main categories that map onto threat to self-esteem models include benign and blaming causes, issues that have been discussed in d e t a i l previously. In terms of consequences, recipie n t s could s i m i l a r l y reply benignly (e.g., downplaying problem, discussing the issue r a t i o n a l l y ) or harshly (e.g., becoming verbally abusive). Thus, even when unsupportive actions are offered, r e c i p i e n t s need not necessarily view them in a threatening way, and p o s i t i v e ways of looking at the * 171 behaviors may mute bad feelings and influence subsequent responses i n a p o s i t i v e way. Despite the h e u r i s t i c value of threat to self-esteem models, conditions under which interactions may be perceived as threatening or supportive need to be elucidated. Future studies would benefit from examining d i r e c t l y how self-esteem i s affected by the support process, and how perceptions of threatening/supportive components are associated with reactions. Other consequences examined in the studies that comprise t h i s d i s s e r t a t i o n include whether or not providers developed awareness of unhelpfulness of t h e i r actions, the point at which i t was obtained, and how awareness was obtained. With respect to the f i r s t issue, i t i s possible that providers may be unaware that t h e i r actions were unhelpful in the f i r s t place (Melamed & Brenner, 1990; Peters-Golden, 1982). Despite t h i s p o s s i b i l i t y , few respondents endorsed such an option. Thus, only 12% of r e c i p i e n t s said that providers were s t i l l unaware that t h e i r actions were unappreciated. In contrast, 24% of r e c i p i e n t s and 35% of providers said that providers became aware at the time. F i n a l l y , 65% of r e c i p i e n t s and the same percentage of providers believe that providers became aware of the unhelpfulness of t h e i r actions subsequent to performing them. If there i s an intervening period of time between engaging i n negative interactions and development of an understanding that such actions were unappreciated, how i s awareness obtained? The most prevalent strategy reported by providers and r e c i p i e n t s was through discussions with one another. This suggests that, despite the deleterious e f f e c t s that may occur when rec i p i e n t s t a l k about t h e i r problems (Costanza et a l . , 1988), re c i p i e n t s 172 may f i n d that i t i s necessary and even b e n e f i c i a l to t a l k about providers' unhelpful actions with them. That i s , i n the absence of an informed discussion about the matter, respondents may believe that awareness w i l l not be forthcoming. Not a l l participants, however, thought that discussions were necessary for providers to become aware that t h e i r actions were unappreciated, as emphasized by the ;fact that respondents mentioned that awareness was obtained through perceptiveness on behalf of providers. Nonverbal strategies such as observation, voice tone, or body language (Siegman & Feldstein, 1987) were also reported. Interestingly, complex strategies such as learning about ones' actions through a t h i r d party, or focusing on subtle forms of nonverbal communication, such as eye contact, were not mentioned. Taken as a whole, these findings suggest that there are a variety of methods that providers used to become aware that t h e i r actions were unhelpful, and that most strategies involved communication between the affected parties, s e l f - r e f l e c t i o n , or the use of nonverbal strategies. Moderating Variables Two variables, source of support, and stressor c h a r a c t e r i s t i c s , were investigated in the present set of studies as variables that may p o t e n t i a l l y moderate r e l a t i o n s between antecedents, behaviors, and post-behavioral consequences. Relationship factors. Previous researchers have noted that source of support i s an important variable a f f e c t i n g emotional reactions (Fitz & Gerstenzang, 1978), s a t i s f a c t i o n and c o n f l i c t (Argyle & Furnham, 1982, 1983), and type of support offered to people coping with negative l i f e events (Dakof & Taylor, 1990; Martin et a l . , 1994; Primomo et a l . , 1990). In the present set 173 of studies, r e l a t i o n s h i p factors were associated with p r o f f e r i n g of h e l p f u l actions, a t t r i b u t i o n s for unhelpful actions, and reports of emotional d i s t r e s s . S p e c i f i c a l l y , supportive behaviors were reported by r e c i p i e n t s as being offered more often by close others, followed by r e l a t i v e s and distant others. The f i r s t two groups did not d i f f e r from one another, but both d i f f e r e d from the t h i r d . Source of support was not associated with unhelpful actions. These findings highl i g h t the importance of h e l p f u l , as opposed to unhelpful, actions i n close re l a t i o n s h i p s compared to more distant ones. In terms of benign a t t r i b u t i o n s , close others and r e l a t i v e s were more l i k e l y to be given benefit of the doubt than more distant others. Results were consistent with the notion that benign a t t r i b u t i o n s are offered primarily to those who are emotionally close to r e c i p i e n t s (Bradbury & Fincham, 1992; Lehman & Hemphill, 1990). The pattern was reversed for emotional d i s t r e s s , such that close others were more troubled than distant others. These findings support the idea that close others are stressed by v i r t u e of t h e i r intimate connection with recipi e n t s (Eckenrode & Gore, 1981). Using open-ended data, there were no differences across re l a t i o n s h i p s for consequences. However, i t i s premature to conclude that source of support i s i r r e l e v a n t in terms of i t s contribution to consequences. Future studies need to examine such r e l a t i o n s i n more d e t a i l using standardized scales instead of open-ended questions. The above r e s u l t s suggest that associations between antecedents and supportive and unsupportive behaviors may vary according to r e l a t i o n s h i p between provider and r e c i p i e n t . Taken as a whole, findings from t h i s d i s s e r t a t i o n are consistent with 174 the idea that research needs to be generalized across samples with caution, and that p a r t i c u l a r attention must be paid to source of support provision. Stressor c h a r a c t e r i s t i c s . The present set of studies examined consistencies and inconsistencies in reports of h e l p f u l and unhelpful actions across a range of s t r e s s f u l l i f e events. In p a r t i c u l a r , i t was of inte r e s t to determine which d i f f e r e n t types of stressors are associated with d i f f e r e n t types of support receipt ( s p e c i f i c i t y models; Cohen & McKay, 1983), and which behaviors are considered to be he l p f u l or unhelpful regardless of the negative l i f e experience ( t r a d i t i o n a l models; Cohen & W i l l s , 1985). Consistent with previous research (Goldsmith, 1992), emotional support was considered to be u n i v e r s a l l y h e l p f u l . More generally, h e l p f u l behaviors did not vary across event type. In terms of supportive actions, informational and tangible support were more consistent with s p e c i f i c i t y than t r a d i t i o n a l models (also see Dakof & Taylor, 1990; Dunkel-Schetter et a l . , 1992; Lehman & Hemphill, 1990; Martin et a l . , 1994). Moreover, in Study 1, blaming unhelpful actions and c r i t i c a l a t t r i b u t i o n s varied according to event type, and were mentioned for stressors that might be considered to be within r e c i p i e n t s ' control (Schwarzer & Weiner, 1991). In Study 2, benign a t t r i b u t i o n s were offered more often for those experiencing bereavement than r e l a t i o n s h i p problems, and there was a tendency for ignorant a t t r i b u t i o n s to vary according to type of stressor. There were no s i g n i f i c a n t r e l a t i o n s between response to unhelpful actions by r e c i p i e n t s and type of negative l i f e event. However, response categories comprised few mentions. Future research would benefit from developing scales 175 based upon the information gathered from the present set of studies, and having a l l participants answer questions regarding the extent to which they responded i n each of the pertinent ways. Taken as a whole, the present research suggests that s t r e s s f u l l i f e events moderate antecedents, but that t h e i r r e l a t i o n s with consequences remains to be tested adequately. Limitations and Areas for Future Research Information about supportive and unsupportive behaviors c u l l e d from the present studies came from p a r t i c i p a n t s ' retrospective accounts of interactions that took place. It i s worthwhile to consider i f such accounts were an accurate r e f l e c t i o n of r e a l i t y , or i f they were biased in any systematic ways. On the one hand, i t i s possible that respondents' assessments were incorrect. Thus, i n some circumstances, people coping with s t r e s s f u l l i f e events may be motivated to a l t e r t h e i r experiences to others (Silver et a l . , 1990). For example, because of the desire to appear normal (Lehman & Hemphill, 1990), people coping with s t r e s s f u l l i f e events may present a facade of composure and downplay t h e i r symptoms. Individuals who are distressed may also hide t h e i r needs and negative feelings so as not to burden, upset, or scare o f f members of t h e i r s o c i a l network (Lehman & Hemphill, 1990; S i l v e r et a l . , 1990; Wortman & Lehman, 1985). Previous research has indicated that r e c i p i e n t s may f a i l to convey to others how they are doing. For example, the majority of cancer patients admitted that they sometimes kept t h e i r thoughts and feelings to themselves, primarily due to fears with respect to providers' negative reactions (Dunkel-Schetter, 1984). The drawbacks of u t i l i z i n g 176 such a strategy may be serious. For example, i f successful at deceiving providers, patients may convey the message that they do not r e a l l y need much help, and providers may act (or not act as the case may be) accordingly (Conant, 1990). Recipients may a l t e r t h e i r presentation of symptoms for providers i n yet another way. If r e c i p i e n t s believe that providers are skeptical about existence of the former's i l l n e s s or disease (Shepherd, 1990), or i f r e c i p i e n t s haven't been getting the assistance they would l i k e , they may exaggerate the symptoms they are experiencing. Expressions of d i s t r e s s by r e c i p i e n t s may cause providers to f e e l helpless and vulnerable, and lead to r e j e c t i o n (S i l v e r et a l . , 1990). Providers who believe that t h e i r s i g n i f i c a n t others are overstating things may consider them to be hypersensitive or hypochondriacal, and f a i l to o f f e r the needed assistance. There are other reasons why re c i p i e n t s may be inaccurate about b e l i e f s regarding t h e i r stressors and related experiences. Previous research has noted that not only are subjects often unaware of higher order cognitive processes, but they may also even be unaware of t h e i r responses to c e r t a i n s i t u a t i o n s (Nisbett & Wilson, 1977). This tendency may be exacerbated by the fact that a substantial amount of time may have elapsed since the interactions took place. On the other hand, the intervening period of time may have provided p a r t i c i p a n t s with the opportunity of i d e n t i f y i n g responses that were hel p f u l and unhelpful in the long run (Lehman et a l . , 1986). For example, re c i p i e n t s may have blamed support providers for t h e i r unhelpful actions i n i t i a l l y but, over time, the remarks or behaviors may have " l o s t t h e i r s t i n g " 177 or been refrained (Lehman & Hemphill, 1990). Moreover, previous research has shown that there are t y p i c a l l y stronger associations between perceptions of r e a l i t y and, for example, mental health, than between actual behaviors and psychological functioning (Sarason, Shearin, Pierce, & Sarason, 1987). This suggests that, in the present context, views regarding supportive and unsupportive exchanges may be better determinants of important psychological variables than those based on observation of behavior. Nonetheless, i t would be worthwhile to obtain more objective data v i a observation to determine i f there are any consistent ways in which providers and r e c i p i e n t s are biased i n t h e i r interpretation of events, and how such biases are related to subsequent perceptions and behaviors and reports of them. Data from the present studies are c o r r e l a t i o n a l and, therefore, causal determinations are not possible. Although some of the r e l a t i o n s are suggestive of causal processes, more sophisticated designs, such as longitudinal ones, are needed to te s t predictions more rigorously. Thus, Coyne's (1976) i n t e r a c t i o n a l theory of depression, which suggests that exchanges between providers and recipi e n t s change across time, cannot be tested adequately with the current design. This d i s s e r t a t i o n was not intended to be exhaustive, and could therefore only focus on a subset of antecedents, consequences, and moderating variables of he l p f u l and unhelpful exchanges. Therefore, future research would p r o f i t by examining other variables that may influence r e l a t i o n s with supportive and unsupportive exchanges. Two p a r t i c u l a r l y f r u i t f u l research p o s s i b i l i t i e s include sex and age, both of which have been 178 associated with s o c i a l support. For instance, research has found that women have higher perceived support from roommates and friends, and less c o n f l i c t with roommates than men (Lepore, 1992). In addition, females are perceived as more considerate and f r i e n d l y than males (Sarason et a l . , 1986), and may provide more emotional support (Antonucci, 1985). There i s evidence that women may be more affected by interpersonal interactions than men. For instance, perceptions of s o c i a l support i n married couples are more strongly related to marital s a t i s f a c t i o n and general well-being of wives than husbands ( A c i t e l l i & Antonucci, 1994). Moreover, women have been found to have higher lev e l s of need for a f f i l i a t i o n and s e n s i t i v i t y to re j e c t i o n than husbands (Moffitt, Spence, & Goldney, 1986). In terms of physiological consequences, s o c i a l support was found to be an independent predictor of d a i l y s y s t o l i c pressure for women but not men (Linden, Chambers, Maurice, & Lenz, 1993). These findings suggest that there may be some in t e r e s t i n g r e l a t i o n s between gender and various aspects of the support process which warrant further investigation. Despite previous e f f o r t s , there have been few attempts to integrate such findings into a comprehensive framework such as that outlined in t h i s d i s s e r t a t i o n . Therefore, future work would benefit from greater t h e o r e t i c a l integration and comprehensive understanding of re l a t i o n s between gender and s o c i a l support. Age has also been under-researched, and i s intimately connected with disruptions i n the s o c i a l environment. For instance, stressors such as widowhood, retirement, relocation, or the death of r e l a t i v e s and friends t y p i c a l l y include the loss of s i g n i f i c a n t s o c i a l contacts, and may enhance feelings of 179 i s o l a t i o n and loneliness. Investigators have suggested some in t r i g u i n g p o s s i b i l i t i e s of the impact of age upon s o c i a l support. For instance, Olsen, Iversen, and Sabroe (1991) note that s o c i a l support from family and friends was most prevalent among the youngest participants, but i t had a p o s i t i v e impact on health both among the young and the old. S i m i l a r l y , l ongitudinal research has found declines in beyond-family contacts for individuals aged 85 and older but not people between 75 and 84; despite these changes i n the amount of support received, there was an increase in feelings of closeness of the e l d e r l y with t h e i r children ( F i e l d & Minkler, 1988). These findings suggests that i t i s important to measure not only s o c i a l support receipt, but also degree of s a t i s f a c t i o n with one's s o c i a l network. It i s possible that age may be associated with changes in the types of support that are offered such as, for instance, tangible support, as mobility decreases and health-related problems increase. Future research would further our understanding of the support process by examining changes i n the q u a l i t y and quantity of support across time, and the manner in which such support i s embedded in a larger s o c i a l context. This d i s s e r t a t i o n has been useful primarily in mapping out the t e r r a i n of the support process with respect to h e l p f u l and unhelpful aspects of interaction. Because the present set of studies was, by necessity, exploratory, only a basic understanding of how the support process unfolds could be developed here. 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L O L O to NO ID \ ° Cd "1 CD CD 3 CD 3 4^ N O ' to O N 3 O cn cr 3* 3 CD 5« CD 5 13 £ £ | © > S -o cn 9- o 1—1 \P 2 O cn C 3" P ^ 3 g ; y § q ^ cn cn O N N O a- * o 3 oo J3 H o 50 CD cn ' O O 3 cn CD cn o O 3* CD c 3 3* ' 5 * > o o° 3 cn 3 3 *> '2 CD' 3 O 5' cn O CD 3 CD" 4^  205 Table 5 Principal Components Analysis Factor Loadings for Attribution Items Factor 1 Factor 2 Factor 3 He or she is an inconsiderate person. .8410 .1686 -.0437 He or she was trying to do what was best for me. He or she -.7795 .0789 -.1083 had my best interests at heart. He or she is a thoughtless person. .7740 .1206 -.0650 He or she was concerned or worried about me. -.7050 .1809 -.1050 He or she is an idiot. .6672 .1620 -.0934 He or she was trying to be mean to me. .5362 .1417 -.0069 He or she wanted my problems to go away. -.5067 .3409 .0608 He or she didn't want to hurt me. -.4480 .3206 .1512 He or she was not comfortable interacting with me. .4286 .2468 .2748 He or she didn't want to get involved with me or my .3805 .2431 .0075 problems. He or she didn't know what to do to help me. -.1220 .6252 .1488 He or she was unaware of what I needed at the time. .0434 .6199 .2451 He or she views the world in a different way than I view it. .2150 .5675 .0365 He or she lacked knowledge and/or understanding of what I .2015 .5500 -.0107 was going through. He or she was only trying to be helpful, but his or her -.2926 .4794 -.0891 actions were unhelpful nonetheless. He or she was trying to deny the problem existed, or .2052 .4030 .2907 downplayed its importance. He or she was afraid for him or herself. .0668 .0665 .7389 He or she was anxious, depressed, or otherwise emotionally .0399 .0436 .6891 troubled. He or she was caught up in my distress and, as a result, was -.1586 .2592 .4993 unable to be effective in helping me deal with mine. 206 Table 6 Means, Standard Deviations, and Cronbach's Alpha Reliabilities for Scales and Subscales for Participants with Myalgic Encephalomyelitis Number Scales (Participants with M.E.) X SD of Items Alphas Big Five Inventory Extraversion 3.08 .73 8 .79 Agreeableness 3.98 .54 9 .68 Conscientiousness 3.95 .61 9 .70 Neuroticism 2.98 .82 8 .82 Openness 4.06 .68 9 .84 Brief Symptom Inventory Depression 1.99 .81 7 .88 Anxiety 2.09 .78 6 .84 Social Support Behavior Questionnaire Helpful 3.83 .80 5 .72 Unhelpful 2.07 .52 9 .69 Supportive Actions Scale - Circumplex Version Directive (PA) 2.40 .78 8 .83 Arrogant (BC) 1.82 .55 8 .74 Critical (DE) 1.48 .50 8 .79 Distancing (FG) 2.11 .55 8 .69 Avoidant (HI) 2.89 .71 8 .76 Deferential (JK) 3.50 .72 5 .66 Nurturant (LM) 3.69 .86 8 .88 Engaging (NO) '3.09 .77 8 .86 207 Table 7 Means, Standard Deviations, and Cronbach's Alpha Reliabilities for Scales and Subscales for Close Others Scales (Close Others) X Number SD of Items Alphas Big Five Inventory Extraversion 3.11 Agreeableness 4.00 Conscientiousness 3.87 Neuroticism 2.66 Openness 3.84 Brief Symptom Inventory Depression 2.14 Anxiety 1.92 Social Support Behavior Questionnaire Helpful 3.85 Unhelpful 2.07 Supportive Actions Scale - Circumplex Version Directive (PA) 2.46 Arrogant (BC) 1.72 Critical (DE) 1.30 Distancing (FG) 1.91 Avoidant (HI) 2.89 Deferential (JK) 3.55 Nurturant (LM) 3.88 Engaging (NO) 3.16 .80 .59 .66 .67 .69 .77 .64 .65 .52 .80 .51 .28 .54 .72 .62 .65 .67 8 9 9 8 9 7 6 5 9 5 8 8 .82 .76 .82 .74 .83 .87 .78 .72 .69 .82 .68 .52 .74 .75 .60 .79 .78 208 Table 8 Participants' Views Regarding the Most Helpful Actions Received Respondents with M.E. n (%) Close Others n (%) E Emotional Support 55(63.2) 59(67.8) .52 Expressing love, concern, or understanding 21(24.1) 25 (28.7) .49 Accepting or acknowledging illness or its severity 15(17.2) 12(13.8) .53 Listening/talking 15(17.2) 23(26.4) .14 Providing encouragement or reassurance 10(11.5) 15(17.2) .28 Physical presence/being there/including in social activities 9(10.3) 8(9.2) .80 Tangible Support 47(54.0) 35(40.2) .07 Assisting with daily activities 41(47.1) 32 (36.8) .17 Providing accommodations/making decisions/ acting on my behalf 11(12.6) 5(5.7) .12 Informational Support 15(17.2) 16(18.4) .84 Suggestions/coping strategies/information 15(17.2) 16(18.4) .84 Absence of negative 12(13.8) 6(6.9) .14 209 Table 9 Respondents' Views Regarding the Most Unhelpful or Upsetting Actions Received Respondents Close with M.E . Others P n(%) n(%) Challenging, denying, or not recognizing seriousness of illness/pushing to do more than able/encouraging recovery/not making accommodations 29(33.3) 24(27.6) .41 Negative emotional reactions 10(11.5) 12(13.8) .65 Not providing wanted or needed assistance 9(10.3) 11(12.6) .64 Closing off communication 7(8.0) 8(9.2) .79 Giving advice 6(6.9) 7(8.0) .77 Rude remark/criticism 4(4.6) 4(4.6) 1.00 Avoiding contact/not including in social activities 4(4.6) 8(9.2) .23 Being overly protective/patronizing 4(4.6) 0(0) .04 210 Table 10 Intercorrelations Between Subscales for Providers and Recipients Subscale 1 2 3 4 5 6 7 8 SAS-C Octants 1. Directive (PA) .38*** 2. Arrogant (BC) .20 3. Critical (DE) .30** 4. Distancing (FG) 43*** 5. Avoidant (HI) 47*** 6. Deferential (JK) .24* 7. Nurturant (LM) 49*** 8. Engaging (NO) 39*** *P< .05 **p< .01 ***p < .001 211 Table 11 Correlations Between Recipients' Personality Dimensions and Their Reports of Supportive and Unsupportive Behaviors Subscale Extraversion Agreeableness Conscientiousness Neuroticism Openness SAS-C Octants Directive (PA) .08 .00 -.12 .10 .11 Arrogant (BC) .01 -.09 -.13 .15 -.03 Critical (DE) -.01 -.22* -.05 .17 -.09 Distancing (FG) .oo -.22* -.04 -.03 -.05 Avoidant (HI) -.06 -.10 .02 .11 -.08 Deferential (JK) -.05 -.04 -.03 .08 .04 Nurturant (LM) .06 .15 -.06 -.05 .10 Engaging (NO) .04 .09 -.05 .00 .11 SSBQ Helpful .05 .11 -.10 .08 .09 Unhelpful -.11 -.08 -.12 .18 .00 *p<.05 **p<.01 ***p<.001 212 Table 12 Correlations Between Providers' Personality Dimensions and Their Reports of Supportive and Unsupportive Behaviors Offered Subscale Extraversion Agreeableness Conscientiousness Neuroticism Openness Directive (PA) .02 .11 .03 -.05 .10 Arrogant (BC) -.10 -.11 -.04 .08 .02 Critical (DE) -.12 -.28** -.18 33 ** -.12 Distancing (FG) -.17 -.19 -.09 .21* -.02 Avoidant (HI) -.14 .01 .06 .25* .01 Deferential (JK) .00 35*** .17 -.17 -.07 Nurturant (LM) 32** 52*** 37*** -.28** .31** Engaging (NO) 32** .23* .14 -.06 34*** *P<.05 **p<.01 ***p<.001 213 Table 13 Correlations Between Providers' Personality Dimensions and Their Factors of SAS-C Subscale Nurturance Dominance Avoidance Extraversion .32** -.01 -.15 Agreeableness 42*** -.01 .09 Conscientiousness .26** -.01 .10 Neuroticism -.22* .05 .17 Openness .33** .08 -.02 *P<.05 **p<.01 ***p < .001 214 Table 14 Correlations Between Providers' Self-Reported Supportive and Unsupportive Actions and Their Personality Dimensions Subscale Helpful Actions Unhelpful Actions Extraversion .36*** .11 Agreeableness 53*** .10 Conscientiousness .31** -.05 Neuroticism - 35*** .01 Openness 3g*** .22* *P<.05 **p<.01 ***p<.001 Table 15 Participants' Views Regarding the Most Important Help Needed Respondents with M.E. n(%) Close Others n(%) £ Emotional Support 43(49.4) 39(44.8) .54 Expressing love, concern, or understanding 18(20.7) 15(17.2) •56 Listening/talking 13(14.9) 14(16.1) .83 Physical presence/being there/including in social activities 9(10.3) 7(8.0) .60 Providing encouragement or reassurance 8(9.2) 10(11.5) .62 Accepting or acknowledging illness or its severity 5(5.7) 5(5.7) 1.00 Tangible Support 29(33.3) 26(29.9) .62 Assisting with daily activities 21(24.1) 23(26.4) .73 Physical assistance/personal care 14(16.1) 9(10.3) .26 Providing accommodations/making decisions/acting on my behalf 10(11.5) 3(3.4) .04 Called ambulance or doctor/took to hospital 3(3.4) 9(10.3) .07 216 Table 16 How Respondents Believe that Providers Became Aware that Support was Needed Respondents with M.E . n(%) Close Others n(%) U Discussing the issue/talking 37(42.5) 42(48.3) .45 Observing/looking 12(13.8) 9(10.3) .49 Emotional difficulties/distress 9(10.3) 17(19.5) .09 Empathy/understanding/perceptiveness 8(9.2) 3(3.4) .12 Incapacitation/poor physical health 6(6.9) 16(18.4) .02 It was obvious/common sense 6(6.9) 4(4.6) .51 Voice tone/body language 4(4.6) 2(2.3) .41 Confused/lost 0(0) 6(6.9) .01 217 Table 17 Correlations Between Providers' Views of Symptoms and Their Reports of Supportive and Unsupportive Behaviors Physical Symptoms Psychological Symptoms Supportive and Unsupportive Behaviors Observable Unobservable Depression Anxiety SSBQ Helpful .26** .31** .14 .23* Unhelpful .08 ,10 33** 44*** SAS-C Nurturance .20 27** .07 .16 Dominance .08 .14 .18 .33** Avoidance .17 .21 .10 -.04 *p<.05 **p<.01 ***p_< .001 218 Table 18 Correlations Between Symptom Residuals and Recipients' Reports of Supportive and Unsupportive Behaviors Physical Symptoms Psychological Symptoms Supportive and Unsupportive Behaviors Observable Unobservable Depression Anxiety SSBQ Helpful Unhelpful -.07 .22* .09 .23* -.10 15 .09 .23* SAS-C Nurturance -.15 .03 -.14 .06 Dominance .08 .06 -.01 .14 Avoidance .01 .01 .23' .20 *P<.05 **p<.01 ***p<.001 Table 19 Views Regarding the Cause of Their Illness by Respondents with M . E n (%) Virus/flu/bacteria/infection 63 (60.0) Stress/overwork/overactivity 46 (43.8) Immune system disturbance 43 (41.0) Physical problem 33 (31.4) Toxins/environmental factors/no fresh air 26 (24.8) Genetic factors/predisposition 16 (15.2) Vaccine/antibiotic/anesthetic 15 (14.3) Emotional factors 15 (14.3) 220 Table 20 Factor Loadings of Causal Items for Respondents Item Respondents with M.E. Close Others Factor 1 Factor 2 Factor 1 Factor 2 Psychological Environmental/ Psychological Environmental/ Worrying Stress Working too hard Depression Not doing enough exercise .87 .85 .81 .60 .49 Genetic .10 .01 .13 .05 .15 .85 .86 .59 .74 .64 Genetic .08 .13 .27 -.13 .06 Working in an environment with no fresh air Toxins A genetic predisposition .22 -.05 .79 .78 .60 .24 .03 -.09 .77 .76 .62 221 Table 21 Correlations Between Providers' Views of Causal Factors and Recipients' Reports of Supportive and Unsupportive Behaviors Subscale Factor 1 Psychological Factor 2 Environmental/ Genetic Viral SAS-C Octants 1. Directive (PA) 2. Arrogant (BC) 3. Critical (DE) 4. Distancing (FG) 5. Avoidant (HI) 6. Deferential (JK) 7. Nurturant (LM) 8. Engaging (NO) SAS-C Factors 9. Nurturance 10. Dominance 11. Avoidance SSBQ 12. Helpful 13. Unhelpful -.11 .06 .28** .31** 22** .18 -.18 -.24* -.26* .05 3g*** -.06 .07 .09 .08 .11 .31** .10 -.01 -.15 -.07 -.15 .08 .14 -.04 -.05 .14 .11 -.09 -.05 -.05 .05 .22* .08 .16 .09 -.05 .09 -.15 *P<.05 **p<.01 ***p<,001 222 Table 22 Respondents' Perceptions: Why Providers Said or Did the Unhelpful Things They Did Respondents Close with M.E. Others p n(%) n£%) Ignorance/lack of understanding or knowledge 23(26.4) 18(20.7) .37 Power struggle/conflicting views or needs/ longstanding pattern 15(17.2) 11(12.6) .40 Emotional difficulties 14(16.1) 19(21.8) .33 Stress/own problems to deal with 11(12.6) 15(17.2) .40 Trying to be helpful/overprotective 7(8.0) 7(8.0) 1.00 Denial of problem/forgetfulness 4(4.6) 3(3.4) .70 Going through a new transition 4(4.6) 2(2.3) .41 Want problems to go away 4(4.6) 1(1.1) .17 223 Table 23 Respondents' Perceptions: What Prevented Providers From Acting in More Preferred Ways Respondents Close with M.E. Others n(%) n(%) Ignorance/lack of understanding or 24(27.6) 22(25.3) .73 knowledge Power struggle/conflicting views or needs/ 18(20.7) 16(18.4) .70 longstanding pattern Emotional difficulties 16(18.4) 12(13.8) .41 Stress/own problems to deal with 12(13.8) 11(12.6) .82 224 Table 24 How Respondents Believe that Providers Became Aware that Their Actions Were Unhelpful or Upsetting Respondents with M.E. n(%) Close Others n(%) E Discussing the issue/talking 45(51.7) 33(37.9) .07 Emotional difficulties/distress 11(12.6) 16(18.4) .30 Empathy/understanding/perceptiveness 6(6.9) 6(6.9) 1.00 Observing/looking 2(2.3) 7(8.0) .09 Voice tone/body language 2(2.3) 4(4.6) .41 on JN. OJ to — is i -co XS -1 < a. 3 , >< CD OJ A -' 3 o •-i CD T3 —1 CD •"+> CD a. 3 oo c OO <-*• c a-CD' O ""3 TI o q q o o CD CD T) CD —• a., o _ 3 P o CO •-< o 3 O co O 2. § PI, CD Ci. £S a. 3,' W s a Si a. 3 s-^ CD OO 3 32 O = 3 CO CD O CO / — s ^ <*> OO p c a. a. v; "< O J O J V — ' 00 c a. OJ to — © L W C ffi K 2. » < •a £ . S > a £ B 5" P. 3 O to 3 ^ N co OO ^ £. r-t- t i -& - CO CD * to i _^  OJ 4-• a" p 3 r + 3 3 3 w CD — I > ^ CO 3 £2 3" CD a. OJ K) CD 3 O CD >-f> oo < a -C 3^ ^ a- o' O J •< 3- w O J p w P i CD 3 CD P 00 J» iL to C o 3 3 3* 2. •a oo CD ~ c > £• 2 CD' P. oo O _^ 3 i to K) w o 3 W 5 S 6 Q CD W ^ oo o 3 oo CD oo 'oo C a. 226 Appendix 1 Initial Contact Letter P.O. Box 4 6 2 . 9 1 6 WE.ST BROADWAY VANCOUVER B.C. V 5 Z IKT ( 6 0 4 ) 5 2 - 6 - 3 9 9 3 June 15, 1995 Dear M E B C Member: With the support of the Myalgic Encephalomyelitis Society of British Columbia (MEBC), a University of British Columbia (UBC) research team will be conducting a study of people in the Lower Mainland who have Myalgic Encephalomyelitis (M.E.). This study, under the direction of Dr. Darrin Lehman, is aimed at increasing our understanding of how people cope with M.E. , something that can only be achieved by obtaining information from those who have had experience with the illness. The researchers will cover topics that people with M.E. have mentioned are important to them, such as life changes as a result of the illness, symptoms, social support, thoughts about the illness, and so on. The investigators are not interested in labeling you, but rather in learning as much as they can about the impact of M.E. on people's lives. You are in a unique position to inform them about your personal experiences. The U B C researchers are a completely independent group and have no formal connection with M E B C and absolutely no association with any other private or government organization. We are assisting Dr. Lehman and his colleagues by sending this letter directly to you, and inviting you to take part in this important study. The researchers have not been given your name, telephone number, or address, but will be given this information only if you agree to participate. An M E B C Representative will telephone you to discuss the possibility of participating in this study if you do not contact M E B C before June 28, 1995. If you would prefer not to participate in the study, please do not hesitate to call M E B C at (604)526-3993. You may also telephone the researchers at their UBC Project Office (822-2613) if you would like 227 more information about the study, or would like to be recruited directly through them. Participation in this project is completely voluntary, and would involve about 1-2 hours of your time to complete an interview with one of the trained project staff. The research interview was developed in consultation with members of MEBC, and has been approved by Board members. The researchers realize that you are likely to have good days and bad days. As a result, interviews may be conducted in more than one sitting. The UBC staff wi l l work out whatever situation is best for you. Although the researchers have found that most people prefer to have interviews conducted in their own homes, i f you would prefer to be interviewed elsewhere, they can easily arrange the interview at UBC or at a place of your choosing. In addition to your interview and a brief questionnaire that they ask all participants to complete in the days following the interview, there is a short questionnaire that they hope a close other wil l be willing to complete. AH of the information that both you and your close other provide will be held in the strictest confidence, and anonymity wi l l be assured. Once again, it is only by talking with people such as yourself that researchers can better understand this extremely significant illness. Thank you very much for your consideration of this request. Sincerely, Cassandra Neilson MEBC Officer of the Board 228 Appendix 2 Script for Telephone Contact "Hi, my name is [name] and I'm calling from the University of British Columbia M.E . Project. I'm phoning to check whether or not you received the letter that was sent to you a week ago by M E B C outlining our project on coping with M.E . " [If it was received, say] "If you have a few minutes and are willing, I would like to tell you a bit more about the study." [If not willing to participate in the study, say] "I appreciate the time you have given me to talk with you." If you decide at a later date that you would like to be in the study, please don't hesitate to contact a member of our research team at (604)822-2613. Thank you very much. Bye." [If potentially willing to participate in the study, but they don't have the time to talk right now, say] "When is a better time for me to get ahold of you?" [confirm time and date] [If willing to talk now, say] "We are interviewing people in British Columbia who have been diagnosed with M.E. The purpose of this study is to increase our understanding of how people cope with this serious illness. As you know, M E B C is assisting us with the study by initially contacting its members, and this how we got your name and phone number." "To ensure that the findings of our study accurately reflect the experiences of people with M.E. , we are focusing only on those individuals who have been formally diagnosed with illness. [Make sure to ask this] Have you been diagnosed with M.E.?" • YES • N O [If NO, say] "I want to thank you for taking a moment to talk with me, even though we are unable to include you in the study." [ANSWER ANY QUESTIONS ABOUT THE STUDY THAT THEY HAVE]. [If YES, say] "In that case, we would like to invite you to take part in our study. As the letter indicated, participation would involve approximately 1 - 2 hours of your time to complete an interview with our project staff and 20 minutes to complete a questionnaire in the days following the interview. We will cover topics that people with M.E. have told us are important to them, such as views regarding causes of the illness, symptoms, various thoughts about the illness, and so on. We recognize that M.E. can be a difficult illness to cope with, and that it poses unique challenges. We would like to learn as much as possible about this illness, and our aim is to make this as valuable an experience as we can for each respondent." 229 "Do you have any questions about the study or what your participation would involve?" [Answer any questions that are posed] "Would you be willing to be part of this study?" [If NO, say] "I appreciate the time you have given me to talk about the study. If you decide at a later date that you would like to be in the study, please don't hesitate to contact a member of our research team at (604)822-2613. Thank you very much. Bye." [If YES, say] "That's great. We will do the interview wherever you are most comfortable. The only thing that we need is a quiet location where we will not be disturbed by others. Most people say that they prefer to talk at their home because it saves them the time of traveling to another location, such as UBC. What would be best for you?" "What day would you be free to talk?" [confirm a date; Saturday and Sunday are OK if it's better for them and OK for you] "What time of day would you like to meet? We can set up an interview whenever you tend to feel your best." [confirm a time] "We have slightly different interviews for different people taking part in the study. To make sure that we bring the right interview, we need to get just a few answers to some quick questions. Are you married or in a common law or other long-term relationship?" [check the appropriate space] • YES • NO [If YES, ask] "We are also hoping to get some information via questionnaire from a close other. Would you be willing to ask your partner if s/he would be willing to complete a questionnaire?" • YES • NO [If NO to either of the preceding two questions, ask] "Would you be willing to ask someone who knows you quite well to complete a questionnaire?" • YES • NO 230 [If Y E S to preceding question, ask] "Is this person male or female?" • M A L E • F E M A L E [If the interview is being conducted in the respondent's home, ask] "What is your address?" [Get closest major intersecting streets] "What is the best way to get to your place? I am coming from UBC." [or other location] "Thank you very much. I look forward to meeting you in person on [date] at [location] at [time]" 231 Appendix 3 Replies to Common Questions How we got their name "With the assistance of M E B C , your name was chosen from their membership list. We randomly selected people in the Greater Vancouver area who have M.E. Your name was among those individuals." Estimated time for participation "We expect that it will take you approximately 1 - 2 hours to complete the interview and 30 minutes to complete a questionnaire. These estimates are based on pilot testing that we have done with other people who have M.E. The interview will vary in length depending on how interested you are in talking about these things and the overall pace of the interview." The means by which anonymity and confidentiality will be achieved "We will ensure your anonymity by identifying you by code number only on all documents that include information that you give to us. You will never be identified by name in any reports that are prepared from the study. Only researchers directly involved with the project will have access to the data, which will be located in a locked room. The tapes from the interview will be transcribed, and then erased." Taping the interviews "We would like to tape each interview because we want to avoid any loss of information. It is difficult to write down everything that you say as you speak, and we don't want to miss anything. We also don't want the interviews to take any longer than is necessary." Name and telephone number of person who can verify authenticity of research project. "Dr. Anthony Phillips, Head of Psychology at the University of British Columbia, can verify that we are conducting this project of "Coping with M.E . " He may be contacted through the UBC Psychology Department at 822-3244." 232 Appendix 4 CONSENT FORM I understand that members of the Department of Psychology at the University of British Columbia (UBC) are conducting a study of Coping with Myalgic Encephalomyelitis (M.E.) under the direction of Dr. Darrin Lehman, principal investigator. The purpose of this research is to better understand how this illness affects people's lives. I have been asked to participate in this study by being interviewed by a member of the UBC M.E. study team and by completing a brief questionnaire at my leisure. I also understand that, with my permission, the interviews wil l be tape-recorded, transcribed without any identifying information, and then erased. To preserve my anonymity, no identifying information will be recorded on the interview or any transcribed version of it. Confidentiality will be maintained through use of a code number that wil l be used to identify me at all times. My responses wi l l be placed in a locked room, to which only researchers directly involved with the project wi l l have access. I understand that I have been randomly selected from the Myalgic Encephalomyelitis Society of British Columbia's (MEBC) membership list. I understand that my participation is completely voluntary and that I may decide not to participate in the study without jeopardizing my relationship with MEBC. I understand that all information will be kept confidential. My name wil l never be used or disclosed in any of the reports that are prepared from the study. Absolutely no information that I provide will be shared with my partner or other family members by the researchers. I understand that some of the questions may be difficult to discuss, and that whether I choose to discuss such questions is completely up to me. I f we come to any questions that I do not want to answer, I understand that I can simply inform the interviewer, and we will go on to the next question. I can also decide to break off the interview or questionnaire at any time. Participation will take about 1-2 hours of my time to complete the interview and 20 minutes to complete a questionnaire. I understand that there is also a brief questionnaire for me to ask a close other to complete. 233 I have signed this consent form, and received a copy of it, before beginning the interview. I f I have any questions about the study, I may telephone Dr . D a m n Lehman (Project Director) or M r . Kenneth Hemphi l l (Project Coordinator) at the project office (822-2613). I have read the above information and consent to participate in this study. Signed Date Interviewer 234 Appendix 5 Code# Interviewer Date Day / Month / Year Interview Start Time M.E. PARTICIPANT INTERVIEW We greatly appreciate the time that you have set aside to be a part of our study on Myalgic Encephalomyelitis, or M . E . As mentioned in the letter, our research team at U . B . C . is interested in how people cope with this significant illness. It's the first project of its kind that we are aware of, and your participation will help us learn a great deal. The questions that I am going to ask you do not have right or wrong answers; we are simply interested in your honest opinions. Please stop me if you're not sure what any particular question is asking, and I will clarify it for you. If you need any breaks during the interview, please let me know and we can wait until you are ready to begin again. Tell me, if at any point, you are feeling particularly poorly and unable to continue. If this happens, we can stop the interview and reschedule the remainder of it for another day i f you would like. Only by asking people direct questions can we understand better the ways in which people with M . E . are affected by the illness. Consequently, if you would rather not answer a particular question, it is perfectly reasonable to say so. You may also break off the interview at any point i f you no longer wish to participate. The interview should take anywhere from one to two hours, depending on the length of your responses. Before we get started, I would like to ask you to please read over this consent form [HAND IT TO RESPONDENT], sign it, and return it to me. I have a copy that you may keep for your records. With your permission, I'd like to tape record the interview just to be sure that I don't miss anything. This will also speed up the interview considerably. But, let me assure you that no one other than the project's transcribers will ever hear the tape, none of your answers will ever be attached to your name, and the tapes will be erased after they have been transcribed. Is it OK for me to tape the interview? [START TAPE NOW] 235 SECTION A DIAGNOSIS A l ) When was the onset of your M.E .? What month and year was it? [IF THEY CAN'T REMEMBER, ASK FOR THEIR BEST GUESS] (month) (year) A2) Have you been diagnosed with M.E .? (a) When were you first diagnosed? What month and year was it? [IF THEY CAN'T REMEMBER, ASK FOR THEIR BEST GUESS] (month) (year) (b) Who diagnosed you? 1 G E N E R A L PRACTITIONER [SAY "FAMILY DOCTOR" IF THEY DON'T KNOW WHAT A G.P. IS] 2 OTHER SPECIFY TYPE OF SPECIALIST: (c) How many traditional medical professionals did you see for your M . E . before you were given the diagnosis? (d) Have you been to any alternative medical specialists, such as herbalists, naturopaths, homeopaths, etc.? 2 YES [SPECIFY HOW MANY AND WHICH ONES] 236 (e) (f) Approximately how many different types of medical tests were you given before you were actually diagnosed with M.E .? Was it 1-5, 6-10, 11-15, 16-20, or more than 20? 1(1) 1-5 | (2) 6 - 10 | (3) 11 - 15" (4) 16-20 (5) 21 + Approximately how many different types of medications were you given for your M . E . symptoms before being diagnosed with the illness? A3) Do you have any other major illnesses, injuries, or diseases? 1 N O [SKIP T O A4] 2 YES [SPECIFY] (a) When was its onset? (month) _ (year) (b) Are you still being treated for it (any of them)? 1 YES 2 NO (c) [IF P A R T I C I P A N T M E N T I O N S M O R E T H A N O N E , ASK] Which one(s)? 237 M.E. CRITERIA A4) Now, I am going to read you a list of things that you may have experienced since you first noticed your M.E. symptoms. Please tell me which of these symptoms you've experienced. a) Extreme fatigue that doesn't go away completely, even after adequate sleep or rest. b) Fatigue that is severe enough to reduce your average daily activity level to less than 50% of what it was before the illness. c) Fatigue that has lasted for a period of at least 6 months. d) Fever or mild fever. e) Sore throat. f) Painful lymph nodes, especially on sides of your neck and under your arms. g) Muscle weakness. h) Muscle discomfort or pain. i) Fatigue after exercise that lasts a day or longer that you would have easily tolerated before getting M . E . j) Headaches of a type, severity, or pattern that is different from headaches that you may have had before getting M . E . k) Joint pain. 1) Sleep disturbance. m) [READ ONE AT A TIME: ONCE RESPONDENT SAYS "YES" TO ANY ONE OF THE FOLLOWING SYMPTOMS, SKIP THE REMAINING SYMPTOMS AND GO ON TO A5] Intolerance of light / blind spots in your visual field / forgetfulness / excessive irritability / confusion / difficulty thinking / inability to concentrate / depression. A5) OK, now I am going to ask you a few more questions about your illness. Did your illness begin abruptly or gradually? By abruptly, I mean over a few hours to a few days. 1 ABRUPTLY G R A D U A L L Y A6) Compared to other people with M . E . , do you think that, in general, your symptoms are "much better than most others," "somewhat better," "about average," "somewhat worse," or "much worse than most others?" 1 M U C H BETTER S O M E W H A T BETTER 3 ABOUT A V E R A G E S O M E W H A T WORSE 5 M U C H WORSE 238 A7) Compared to how you've generally felt since you were diagnosed with M . E . , has your energy level in the past month or so been "much higher than average," "somewhat higher than average," "about average," "somewhat lower than average," or "much lower than average?" 1 M U C H HIGHER T H A N A V E R A G E S O M E W H A T HIGHER T H A N A V E R A G E 3 ABOUT A V E R A G E S O M E W H A T LOWER T H A N A V E R A G E M U C H LOWER T H A N A V E R A G E A8) In general, would you say that you are coping with your M . E . "extremely well," "quite well," "OK," "poorly," or "very poorly?" 1 E X T R E M E L Y W E L L 2 QUITE W E L L 3 OK P O O R L Y 5 V E R Y P O O R L Y S E C T I O N B R U M I N A T I V E T H O U G H T S Now I am going to read you five statements regarding tendencies some people have [SHOW R E D S C A L E " A " " S T R O N G L Y D I S A G R E E " TO " S T R O N G L Y A G R E E " ] . Using this scale, for each of the statements, please tell me the extent to which you disagree or agree that the statement describes you. BI) I always seem to be "re-hashing" in my mind recent things I've said or done. 1 S T R O N G L Y DISAGREE SLIGHTLY DISAGREE N E U T R A L SLIGHTLY A G R E E STRONGLY A G R E E B2) I don't waste time re-thinking things that are over and done with. 1 S T R O N G L Y DISAGREE 2 SLIGHTLY DISAGREE 3 N E U T R A L 4 S L I G H T L Y A G R E E 5 S T R O N G L Y A G R E E B3) Long after an argument or disagreement is over, my thoughts keep going back to what happened. 1 S T R O N G L Y DISAGREE 2 SLIGHTLY DISAGREE 3 N E U T R A L 4 SLIGHTLY A G R E E 5 STRONGLY A G R E E 239 B4) I tend to "ruminate" or dwell on things that happen to me for a really long time afterward. 1 S T R O N G L Y DISAGREE SLIGHTLY DISAGREE N E U T R A L SLIGHTLY A G R E E S T R O N G L Y A G R E E B5) Often I'm playing back in my mind how I acted in a past situation. 1 S T R O N G L Y DISAGREE S L I G H T L Y DISAGREE N E U T R A L S L I G H T L Y A G R E E S T R O N G L Y A G R E E S E C T I O N C L I F E C H A N G E S Now I'm going to ask you some questions about how M . E . has affected your life. Some people with M . E . report that the illness has changed many aspects of their life; sometimes for the better, sometimes for the worse, and sometimes for both the better and the worse. C l ) Has M . E . changed the way you think about yourself as a person? (a) Has the way you think about yourself changed for the better, for the worse, or for both the better and the worse? BETTER 2 WORSE BETTER A N D WORSE (b) How has the way you think about yourself changed? 240 C2) Has M . E . changed the way you see the world, or life in general? 1 N O [SKIP TO C3] (a) Has the way you see the world, or life in general, changed for the better, for the worse, or for both the better and the worse? 1 BETTER 2 WORSE BETTER A N D WORSE (b) How has your view of the world changed? C3) Has M . E . changed your priorities in life? 1 N O [SKIP TO C4] (a) Have your priorities in life changed for the better, for the worse, or for both the better and the worse? 1 BETTER 2 WORSE BETTER A N D WORSE (b) How have your priorities in life changed? 241 I C4) Has M . E . changed your plans for the future? 1 N O [SKIP TO C5] (a) Have your plans for the future changed for the better, for the worse, or for both the better and the worse? 1 BETTER 2 WORSE BETTER A N D WORSE (b) How have your plans for the future changed? C5) Were you in an intimate relationship when you first developed M.E .? 1 N O [SKIP TO C6] (a) Are you still in this relationship? 1 2 NO YES 242 (b) How has your relationship with this person changed as a result of M.E .? C6) Has M . E . changed your relationships with friends? 1 N O [SKIP TO C7] (a) Have your relationships with friends changed for the better, for the worse, or for both the better and the worse? 1 BETTER 2 WORSE BETTER A N D WORSE (b) How have your relationships with friends changed? Cl) Has M . E . changed your relationships with family members? 1 N O [SKIP TO Dl ] (a) Have your relationships with family members changed for the better, for the worse, or for both the better and the worse? 1 BETTER 2 WORSE BETTER A N D WORSE 243 (b) How have your relationships with family members changed? SECTION D MEANING D l ) OK, now I'm going to ask you some questions about thoughts you may or may not have had with respect to your M . E . . Have you ever found yourself going over in your mind the events that led up to your illness? 1 NO [SKIP TO D2] (a) What kinds of thoughts have you had? D2) How difficult has it been for you to accept, or come to terms with, your illness? Has it been "not at all difficult," "a little difficult," "somewhat difficult," "quite difficult," or "very difficult"? 1 NOT AT ALL [SKIP TO SECTION E] A L I T T L E SOMEWHAT 4 QUITE 5 V E R Y 244 (a) What would you say has been the most difficult part for you to come to terms with? S E C T I O N E C O U N T E R F A C T U A L S E l ) People with M . E . sometimes think about how things might have turned out differently. In some instances, they may think of how things might have turned out better. For example, they might think, "If only something had been different, I might not have become i l l , or things might not have been so bad." Over the past month or so, have you ever had thoughts of how things might have turned out better? 1 NO [SKIP T O E2] How often have you had such thoughts? Would you say, "rarely," "sometimes," "often," or "almost always"? R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S [SKIP TO E3] 245 1 E2) Since getting M.E., have you ever had thoughts about how things might have turned out better? 1 2 N O YES [SKIP TO E7, PAGE #14] E3) Please tell me what thoughts you've had about how things might have turned out better. E4) Are there specific times or instances that trigger thoughts of how things might have turned out better? (a) What are these things? 246 E5) [DON'T ASK THESE QUESTIONS IF RESPONDENT IS NOT IN AN INTIMATE RELATIONSHIP] Now, back to your thoughts of how things might have been better — have you ever discussed them with your partner? 1 NO [SKIP TO E6] (a) What was your partner's reaction? (b) How did your partner's reaction make you feel? E6) [DON'T ASK THESE QUESTIONS IF RESPONDENT IS NOT IN AN INTIMATE RELATIONSHIP] With respect to your M . E . , has your partner ever said anything to you that suggested that things might have turned out better? 1 NO [SKIP TO E7] (a) What did your partner say? (b) How did your partner's statements make you feel? 247 E7) People with M . E . may also have thoughts about how things might have turned out worse. For example, some people might think, "At least such and such didn't happen to me" or "Even though I have M . E . , it would have been worse if such and such had been different." Over the past month or so, have you ever had thoughts of how things might have turned out worse? 1 NO [SKIP TO E8] How often have you had such thoughts? Would you say, "rarely," "sometimes," "often," or "almost always"? R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S [SKIP TO E9] E8) Since getting M.E., have you ever had thoughts about how things might have turned out worse? 1 2 NO YES [SKIP TO F l , PAGE #16] E9) Please tell me what thoughts you've had about how things might have turned out worse. E10) Are there specific times or instances that trigger thoughts of how things might have turned out worse? 1 N O [SKIP T O Ell] (a) What are these things? E l 1) [DON'T A S K T H E S E QUESTIONS IF R E S P O N D E N T IS N O T I N A N I N T I M A T E R E L A T I O N S H I P ] Now, back to your thoughts of how things might have been worse — have you ever discussed them with your partner? 1 N O [SKIP T O E12] (a) What was your partner's reaction? (b) How did your partner's reaction make you feel? 249 E12) [DON'T ASK THESE QUESTIONS IF RESPONDENT IS NOT IN AN INTIMATE RELATIONSHIP] With respect to your M . E . , has your partner ever said anything to you that suggested that things might have turned out worse? 1 N O [SKIP TO Fl] (a) What did your partner say? (b) How did your partner's statements make you feel? SECTION F PERSONAL THEORIES F l ) There is little agreement among the public and even medical professionals regarding how M . E . develops. Nevertheless, some people with M . E . have one or more hunches or theories about the cause of their illness. Do you have any hunches or theories about what caused your M . E . to develop? 1 NO [SKIP TO F2] (a) What are they? (b) On a scale from 0 to 100 with 0 being "not at all confident" and 100 being "completely confident," how confident are you that your hunches are correct? % 250 1 F2) [SHOW Y E L L O W S C A L E " B " "NOT A T A L L I M P O R T A N T " T O " E X T R E M E L Y I M P O R T A N T " ] Now I'm going to read to you some possible causes of M . E . Please look at this scale that ranges from "not at all important" to "extremely important, " and tell me how important you think each of these things was in causing your M.E .? (a) A viral infection. 1 NOT A T A L L 2 SLIGHTLY 3 M O D E R A T E L Y 4 QUITE 5 E X T R E M E L Y (b) A genetic predisposition. 1 NOT A T A L L 2 SLIGHTLY 3 M O D E R A T E L Y 4 QUITE 5 E X T R E M E L Y (c) Working in an environment with no fresh air. 1 NOT A T A L L 2 S L I G H T L Y 3 M O D E R A T E L Y 4 QUITE 5 E X T R E M E L Y (d) Toxins. 1 NOT A T A L L 2 SLIGHTLY .3 M O D E R A T E L Y 4 QUITE 5 E X T R E M E L Y (e) Working too hard. 1 NOT A T A L L 2 SLIGHTLY 3 M O D E R A T E L Y 4 QUITE 5 E X T R E M E L Y (f) Worrying. 1 NOT A T A L L 2 SLIGHTLY 3 M O D E R A T E L Y 4 QUITE 5 E X T R E M E L Y (g) God or some other spiritual force. 1 NOT A T A L L 2 SLIGHTLY 3 M O D E R A T E L Y 4 QUITE 5 E X T R E M E L Y 251 (g) Depression. 1 NOT A T A L L SLIGHTLY M O D E R A T E L Y 4 QUITE E X T R E M E L Y (i) Not doing enough exercise. 1 NOT A T A L L SLIGHTLY M O D E R A T E L Y 4 QUITE E X T R E M E L Y (j) Stress. 1 NOT A T A L L SLIGHTLY M O D E R A T E L Y 4 QUITE E X T R E M E L Y (k) Chance or pure coincidence. 1 NOT A T A L L SLIGHTLY M O D E R A T E L Y 4 QUITE E X T R E M E L Y F3) Some people with M . E . have one or more hunches or theories about how their M . E . might have been prevented. Do you have any hunches or theories about how your M . E . might have been prevented? 1 N O [SKIP T O F3b] (a) What are they? 252 (b) How often do you think about how your M . E . might have been prevented? Would you say that you "never think about it," "rarely think about it," "sometimes think about it," "often think about it," or "very often think about how it could have been prevented?" 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N V E R Y O F T E N (c) How often do you think about how your M . E . might have been caused? Would you say that you "never think about it," "rarely think about it," "sometimes think about it," "often think about it," or "very often think about how it might have been caused?" 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N V E R Y O F T E N F4) Some people with M . E . have said that, on a philosophical or spiritual level, they find themselves searching to make sense of, or find meaning in, their M . E . Have you done this in the past month or so? 1 NO [SKIP TO F5] Have you done this "rarely," "sometimes," "often," or "almost always?" R A R E L Y SOMETIMES F5) Since getting M.E., have you ever done this? A L M O S T A L W A Y S [SKIP TO F6] 1 2 NO YES [SKIP TO FT] 253 F6) Have you been able to make any sense of, or find some meaning in, your M.E .? 1 N O [SKIP T O F7] (a) How have you done so? (b) How comforted are you by the meaning you've found? Are you "not at all comforted," "somewhat comforted," "quite comforted," or "very comforted?" 1 NOT A T A L L S O M E W H A T 1 [SKIP TO F8] F7) How difficult has this been for you? Has it been "not at all difficult," "somewhat difficult," "quite difficult," or "very difficult?" 1 NOT A T A L L l S O M E W H A T 3 QUITE 4 V E R Y 254 I M P R O V E M E N T O R R E C O V E R Y F8) There is little agreement among medical professionals regarding how people recover from M . E . or whether or not they show improvement. Nevertheless, some people with M . E . have one or more hunches or theories. Do you have any hunches or theories about how your own improvement or recovery can be facilitated? 1 N O [SKIP T O S E C T I O N G] (a) What are they? S E C T I O N G C O N T R O L L A B I L I T Y [SHOW R E D S C A L E " A " " S T R O N G L Y D I S A G R E E " T O " S T R O N G L Y A G R E E " ] Now please look at this scale that ranges from "strongly disagree" to "strongly agree," and tell me how much you disagree or agree with each of these statements. GI) When your symptoms worsen, it is your own behavior which determines how soon you will get better. 1 S T R O N G L Y DISAGREE SLIGHTLY DISAGREE N E U T R A L SLIGHTLY A G R E E S T R O N G L Y A G R E E G2) If your symptoms are going to worsen, they will worsen, no matter what you do. 1 S T R O N G L Y DISAGREE SLIGHTLY DISAGREE N E U T R A L SLIGHTLY A G R E E S T R O N G L Y A G R E E 255 G3) Whenever your symptoms worsen, you consult a medically trained professional. 1 S T R O N G L Y DISAGREE 2 SLIGHTLY DISAGREE 3 N E U T R A L 4 S L I G H T L Y A G R E E 5 STRONGLY A G R E E G4) You are in control of your symptoms. 1 S T R O N G L Y DISAGREE 2 SLIGHTLY DISAGREE 3 N E U T R A L 4 SLIGHTLY A G R E E 5 S T R O N G L Y A G R E E G5) Your family has a lot to do with the number of symptoms that you experience. 1 S T R O N G L Y DISAGREE 2 SLIGHTLY DISAGREE 3 N E U T R A L 4 S L I G H T L Y A G R E E 5 STRONGLY A G R E E G6) Luck plays a big part in determining when your symptoms improve. 1 S T R O N G L Y DISAGREE 2 SLIGHTLY DISAGREE 3 N E U T R A L 4 S L I G H T L Y A G R E E 5 STRONGLY A G R E E The main thing which affects your symptoms is what you yourself do. 1 S T R O N G L Y DISAGREE 2 SLIGHTLY DISAGREE 3 N E U T R A L 4 SLIGHTLY A G R E E 5 STRONGLY A G R E E G8) When your symptoms improve, it's usually because other people, such as doctors, nurses, family, or friends, have been taking good care of you. 1 S T R O N G L Y DISAGREE SLIGHTLY DISAGREE N E U T R A L S L I G H T L Y A G R E E STRONGLY A G R E E 256 G9) You have control over your daily symptoms, such as the amount of pain, fatigue, discomfort, and immobility you experience from day to day. 1 S T R O N G L Y DISAGREE SLIGHTLY DISAGREE N E U T R A L SLIGHTLY A G R E E S T R O N G L Y A G R E E G10) You have control over how well you cope psychologically with your illness. 1 S T R O N G L Y DISAGREE 2 S L I G H T L Y DISAGREE 3 N E U T R A L 4 S L I G H T L Y A G R E E 5 STRONGLY A G R E E G i l ) You had control over whether or not you contracted M . E . 1 S T R O N G L Y DISAGREE SLIGHTLY DISAGREE N E U T R A L SLIGHTLY A G R E E STRONGLY A G R E E G12) When your symptoms worsen, it is your own attitude which determines how soon you will get better. 1 S T R O N G L Y DISAGREE 2 SLIGHTLY DISAGREE 3 N E U T R A L 4 S L I G H T L Y A G R E E 5 STRONGLY A G R E E 257 S E C T I O N H F O R E S E E A B I L I T Y HI) Looking back now, do you think that you could have anticipated or predicted that you would contract M.E .? That is, do you think getting M . E . was "not at all predictable," "slightly predictable," "moderately predictable," "quite predictable," or "extremely predictable"? 1 NOT A T A L L [SKIP T O H l b ] SLIGHTLY M O D E R A T E L Y 4 QUITE E X T R E M E L Y (a) Why do you believe that you could have anticipated getting M.E .? [SKIP T O H2 ] Hlb) Why do you believe that you could not have anticipated getting M.E .? H2) Was contracting M . E . inevitable in your particular case? That is, do you think it had to happen? 1 NO 2 YES 258 SECTION J MEDICAL PROFESSION Now I'm going to ask you a few questions about traditional medical professionals, that is, general practitioners or specialists. JI) What is the most helpful thing that a medical professional has said or done to you? J2) What is the most unhelpful or upsetting thing that a medical professional has said or done to you? J3) Is there anything that medical professionals could do to help you that they haven't done? 1 NO [SKIP TO J4] (a) What sorts of things could they do? J4) In general, how much do you think the medical professionals whom you have seen know about M.E .? "Very little," "a moderate amount," "quite a bit," or "a large amount?" 1 V E R Y L I T T L E A M O D E R A T E A M O U N T QUITE A BIT A L A R G E A M O U N T 259 J5) Thinking about all of the medical professionals that you've seen since you've been sick, to what extent do you think they behave as though you are responsible for your illness? "Not at a l l , " "slightly," "moderately," "quite," or "extremely?" 1 NOT A T A L L SLIGHTLY M O D E R A T E L Y 4 QUITE E X T R E M E L Y SECTION K SUPPORT PROCESSES For the rest of the questions in this interview, I would like you to please think about one person who knows you quite well. If you are married or in a relationship, please answer the questions with your partner in mind. Otherwise, please answer the questions with a "close other" in mind. K l ) Have you got a specific person in mind yet? [PAUSE FOR AFFIRMATIVE RESPONSE] Is this person male or female? 1 M A L E F E M A L E Kla ) What relationship is this person to you? That person is your. 1 SPOUSE PARTNER R E L A T I V E [SPECIFY RELATIONSHIP] 4 FRIEND 5 OTHER [SPECIFY] K1 b) Does this person have M . E . ? 1 NO 2 YES K l c ) [DON'T ASK IF THE PERSON IS A SPOUSE] How often do you see this person or talk with them? times per month Now please answer the rest of the questions in the interview with your in mind. 260 HELPFUL AND UNHELPFUL ACTIONS AND THEIR PRECIPITANTS [SHOW BLACK SCALE " C " "NEVER" TO "ALMOST ALWAYS"] On this scale, with respect to your M.E., how often has your said or done things that were especially helpful to you? 1 NEVER [SKIP TO K 3 ] R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S (a) What were these things? Please tell me one or two of the most helpful things that your has said or done. (b) Think back to the most important time that you needed help from your . Please tell me what assistance you needed at that time. [PLEASE NOTE THAT IN ANSWERING THIS QUESTION, RESPONDENTS MAY ANSWER ONE OR BOTH OF THE NEXT TWO QUESTIONS. IF THEY DO, DON'T GET THEM TO ANSWER THE QUESTION(S) AGAIN.] (c) Do you think that your needed his (her) help? was aware that you 1 NO [SKIP TO K 3 ] (d) How do you think he(she) became aware that you needed his (her) help? 261 (e) Did your give you the help or support you needed? 1 2 NO YES [SHOW B L A C K S C A L E " C " " N E V E R " TO " A L M O S T A L W A Y S " ] On this scale, with respect to your M . E . , how often has your said or done things that were unhelpful or that upset you? 1 N E V E R [SKIP T O K4] R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S (a) What were these things? Please tell me one or two of the most unhelpful or upsetting things that your has said or done. (b) Why do you think your _ unhelpful things? said or did these (c) Think back to the most upsetting time that your said or did unhelpful things. Do you think your realized that his(her) actions were unhelpful at the time, did he(she) become aware of them later, or is he(she) still unaware that his(her) action was unhelpful? 1 A W A R E AT T H E TIME 2 A W A R E L A T E R 3 STILL U N A W A R E (d) How do you think your became aware that his(her) action was unhelpful or upset you? 262 (e) What do you think prevented your from acting in a way that you would have preferred? S O C I A L SUPPORT Now I am going to read you a list of things that your said to you. [SHOW B L A C K S C A L E " C " " N E V E R " TO " A L M O S T A L W A Y S " ] Using this rating scale, please tell me how often, in the past six months or so, he(she) has done or said each of the following things. may have done or (a) How often has your you should do? given you advice; for example, told you what 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S (b) How often has your interest or warmth? showed concern; for example, expressed 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S (c) How often has your told you that he(she) knew exactly how you felt or that he(she) knew exactly what you were going through? 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S 263 (d) How often has your encouraged you to simply overcome the symptoms you were experiencing; for example, told you to "pick yourself up by your bootstraps" or "try harder?" 1 N E V E R 2 R A R E L Y 3 SOMETIMES 4 O F T E N 5 A L M O S T A L W A Y S (e) How often has your given you the chance to openly express your feelings; for example, listened or encouraged you to show your feelings? 1 N E V E R 2 R A R E L Y 3 SOMETIMES 4 O F T E N 5 A L M O S T A L W A Y S (f) How often has your or displays of affection and caring? supported you by his(her) physical closeness 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S (g) How often has your tried to minimize problems for you; for example said things like "It's not so bad" or "It could be a lot worse"? 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S (h) How often has your example, smiled or acted in a cheerful manner? tried to be cheerful about the situation; for 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S (i) How often has your stayed with you when you needed it; for example, spent extra time and paid more attention to you or made it clear that h e ( s h e ) was willing to do so? 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S 264 (j) How often has your offered you a philosophical reason for your M . E . ; for example, said things like "There is a reason for everything that happens" or "It was just fate that this should happen"? 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S (k) How often has your offered you a religious reason for your M . E . ; for example, said things like "It's God's wil l" or "God has a reason for everything?" 1 N E V E R 2 R A R E L Y 3 SOMETIMES 4 O F T E N 5 A L M O S T A L W A Y S (1) How often has your talked about himself (herself) in an effort to steer attention away from your difficulties? 1 N E V E R 2 R A R E L Y 3 SOMETIMES 4 O F T E N 5 A L M O S T A L W A Y S (m) How often has your example, helped you with housework or errands? helped you with day-to-day tasks; for 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S (n) How often has your acted as if your illness was much worse than you believed it was; for example, said things like "This is absolutely terrible?" 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S F A I L U R E TO P R O V I D E E F F E C T I V E A C T I O N S K5) In general, how often do you indicate to your that you need his(her) help? Do you do this "never," "rarely," "sometimes," "often," or "very often?" 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N 5 V E R Y O F T E N K 6 ) Are there things that your 265 could do to help you that he (she) hasn't done? 1 N O [SKIP T O S E C T I O N L] (a) What are these things? (b) Why do you think your things? hasn't done these S E C T I O N L E F F E C T I V E N E S S LI ) How effective do you think your has been in helping to reduce your level of distress? Do you think he(she) has been "not at all effective," "slightly effective," "moderately effective," "very effective," or "extremely effective?" 1 NOT A T A L L SLIGHTLY M O D E R A T E L Y 4 V E R Y E X T R E M E L Y L2) [SHOW B L A C K S C A L E " C " " N E V E R " TO " A L M O S T A L W A Y S " ] Now I am going to ask you several questions that I would like you to answer on this scale, ranging from "never" to "almost always." How often do you think that your believes he(she) is helpless to reduce your distress? 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S 266 L3) How often do you think your has been so worried about responding inappropriately that he(she) has been ineffective in providing help? 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S S E C T I O N M CONFIDING M l ) M2) How often have you felt that you could not share negative feelings such as sadness or anger with your ? 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S After developing M . E . , different people react in different ways. For example, some people want to talk about what has happened to them, whereas others do not. [SHOW B L A C K S C A L E " C " " N E V E R " TO " A L M O S T A L W A Y S " ] . Please use this rating scale, and answer according to how you have felt or thought in the past month or so. (a) How often have you wanted to talk with your about your coping with it? 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N about your illness or A L M O S T A L W A Y S (b) How often have you felt that you could discuss your feelings about your M . E . with your i f you wanted to? 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S (c) How often have you felt as though you had to keep your feelings about your M . E . to yourself because they made your uncomfortable? 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S 267 (d) How often have you actually talked to your about your M.E .? 1 N E V E R 2 R A R E L Y 3 SOMETIMES 4 O F T E N 5 A L M O S T A L W A Y S (e) How often has your to M.E .? discouraged you from discussing issues related 1 N E V E R 2 R A R E L Y 3 SOMETIMES 4 O F T E N 5 A L M O S T A L W A Y S (f) When you talked about your M . E . , how often did your the idea that he(she) didn't want to hear about it? jive you 1 N E V E R 2 R A R E L Y 3 SOMETIMES 4 O F T E N 5 A L M O S T A L W A Y S (g) When you talked about your M . E . , how often did your with support and understanding? respond 1 N E V E R 2 R A R E L Y 3 SOMETIMES 4 O F T E N 5 A L M O S T A L W A Y S S E C T I O N N R E L A T I O N S H I P S A T I S F A C T I O N N l ) How often do you think that things between you and your are going well? 1 N E V E R 2 R A R E L Y 3 SOMETIMES 4 O F T E N 5 A L M O S T A L W A Y S How often do you and your quarrel? 1 N E V E R 2 R A R E L Y 3 SOMETIMES 4 O F T E N 5 A L M O S T A L W A Y S 268 N3) [DON'T A S K THIS Q U E S T I O N IF R E S P O N D E N T IS N O T IN A N I N T I M A T E R E L A T I O N S H I P ] How often do you discuss or consider divorce, separation, or break-up? 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S S E C T I O N P A L T E R I N G P R E S E N T A T I O N O F S Y M P T O M S [SHOW B L A C K S C A L E " C " " N E V E R " T O " A L M O S T A L W A Y S " F O R PI TO P3] PI) Some people with M . E . have told us that at times they say or do things that indicate to others that they are doing better or worse than they actually are. For example, they may minimize symptoms they have been experiencing so as not to overwhelm others or scare them away. Using this scale, how often have you tried to hide your symptoms, or "put on a happy face" for your ? 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S P2) Some people with M . E . have told us that others often underestimate what they are going through or don't seem to accept the fact that they are having difficulties due to the illness. Then, the person with M . E . finds that they need to overstate things in order to be taken seriously by others. Using this scale, how often have you made your symptoms appear worse than they really were for your ? 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S P3) And finally, some people with M . E . have told us that, regardless of the response from others, they tell people what is on their mind. This may include mentioning every symptom they are experiencing or saying that they are reeling well when that is the case. Using this scale, how often have you tried simply to present your symptoms accurately to your ? 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S 269 S E C T I O N Q A D V I C E Ql ) And my final question is, i f you were to give some advice to someone coping with M . E . , what would it be? OK, that's the last interview question that I have. Is there anything else related to your M . E . that you would like to discuss? Is there anything about the study that I could answer for you now? [IF YES, ANSWER THEM—ANSWER IN AS M U C H DETAIL AS POSSIBLE WITHOUT GIVING T H E M A N Y I N F O R M A T I O N T H A T M A Y C O N T A M I N A T E THEIR RESPONSES TO F U T U R E QUESTIONS. T E L L T H E M T H A T W E W O U L D BE H A P P Y TO DISCUSS A N Y T H I N G I N D E T A I L WITH T H E M O N C E THEIR PARTICIPATION IS C O M P L E T E D . IF THERE A R E A N Y QUESTIONS T H A T Y O U A R E U N A B L E TO ANSWER, R E M I N D T H E M T H A T T H E Y M A Y C O N T A C T T H E PROJECT OFFICE FOR F U R T H E R INFORMATION] F U R T H E R INSTRUCTIONS FOLLOWING INTERVIEW: Here is the brief questionnaire that we would like you to complete at your leisure in the next couple of days. It is extremely important for us to get your responses to these questions as well. Without them, we will be missing much important information that is necessary for us to make sense of what you have told us in the interview. After you have completed the 270 questionnaire, which should take about 20 minutes or so, please mail it in this self-addressed stamped envelope. Here is a second questionnaire [ " C L O S E O T H E R Q U E S T I O N N A I R E " ] for you to give to your [ C L O S E O T H E R ] . This is the same person that you had in mind when you answered the questions at the end of the interview. Please ask this person to read the information that is included in the package and to feel free to call us if there are any questions before completing the questionnaire. Their package also includes a self-addressed stamped envelope. If this person would prefer not to participate in the study, we would be grateful if you would give the package to someone else who knows you quite well who would be willing to complete the questionnaire instead. We can't tell you how much we appreciate the time that you have taken to be a part of this study. If, at any point in the future, you have any questions, please feel free to call us. Thank you very much for participating. INTERVIEWER: INTERVIEW E N D TIME: R l ) RESPONDENT'S GENDER: 1 M A L E F E M A L E R2) INTERVIEWEE A P P E A R E D V E R Y TIRED: 1 N E V E R R A R E L Y SOMETIMES 4 O F T E N A L M O S T A L W A Y S 271 R3) INTERVIEW H A D TO BE INTERRUPTED AT RESPONDENT'S REQUEST: R4) 1 N E V E R 2 R A R E L Y 3 SOMETIMES 4 O F T E N 5 A L M O S T A L W A Y S INTERVIEWEE CRIED DURING T H E INTERVIEW: 1 N E V E R 2 R A R E L Y 3 SOMETIMES 4 O F T E N 5 A L M O S T A L W A Y S R5) INTERVIEWEE L A U G H E D DURING T H E INTERVIEW: R6) 1 N E V E R 2 R A R E L Y 3 SOMETIMES 4 O F T E N 5 A L M O S T A L W A Y S RESPONDENT'S R A C I A L OR ETHNIC GROUP IS: 1 C A U C A S I A N 2 A S I A N 3 N A T I V E 4 A F R O -C A N A D I A N 5 OTHER: [SPECIFY] R7) OTHER PERSONS PRESENT A T INTERVIEW: 1 N O N E C H I L D R E N SPOUSE 4 OTHER RELATIVES 5 OTHER A D U L T S 272 Appendix 6 VERSION M Code#: Date: r _ ^ T _ _ _ _ _ Day / Month / Year PARTICIPANT WITH M . E . QUESTIONNAIRE We greatly appreciate your time and the important information that you have provided concerning your experiences with Myalgic Encephalomyelitis (M.E.). We have a few more questions regarding symptoms that you may experience and the ways in which you view yourself. Because these questions will go much faster by you answering them on your own, rather than in the interview, we have put them together in this brief booklet. * These questions are crucial because they allow us to get a more complete sense of your experience with M.E. Without your responses to these questions, we will be missing much important information that is necessary for us to make sense of what you have told us in the interview. Please note that the questionnaire is printed on both sides of the pages. When you are finished, please put the completed questionnaire in the self-addressed stamped envelope that is provided, and place the package to be sent to our project office in a mailbox. It is our hope that this study will benefit people with M.E. , their close others, and health care providers. We thank you in advance for your continued cooperation and time. Your contribution to our understanding of this significant illness cannot be overestimated. 273 M . E . S Y M P T O M C H E C K L I S T Below is a list of symptoms that you may experience. Using the following scale, please answer each question according to how frequently you have experienced the symptom in the past month. Put the number (for example, " 1 " for never, "2" for rarely, and so on) that best fits your situation in the space to the left of the statement. For example, consider the symptom Headaches. If you have not experienced any headaches in the past month, you would write the number " 1 " beside the item. If, on the other hand, you have often experienced headaches, you would write "4" next to the symptom, and so on. Please fill in each space with only one number. 1 2 NEVER RARELY 3 4 5 SOMETIMES OFTEN ALMOST ALWAYS 1) "2) "3) "4) "5) "6) V "8) ~9) "101 "11 "12 "13 "14 16) "17 "18 "19 "20 "21 "22 "23 "24 "25 "26 "27 "28 "29 "30 "31 Fatigue Reduced clarity or clearness of vision Seizures Numb or tingling fingers Difficulty with balance Lightheadedness - feeling "spaced out" Unusual nightmares Difficulty moving tongue to speak Ringing m ears Paralysis Blackouts Intolerance of light Intolerance of alcohol Alteration of taste, smell, or hearing Not feeling rested even after sleep that would have been adequate before you got M.E. Decreased sex drive Twitching muscles Recurrent flu-like illnesses Nasal and other allergic reactions Weight change Abdominal pain, diarrhea, or intestinal gas Night sweats Rapid or irregular heart beat Stiffness Excessive urination at night Exaggerated sensations (such as burning, pricking, etc.) Loss of appetite Finger swelling Dizziness Nausea Dry eyes 274 1 NEVER RARELY SOMETIMES 4 OFTEN ALMOST ALWAYS 32} Dry mouth 33) Cough 34) Word finding problems 35) Sore, aching muscles 36) Muscle weakness 37) Sore joints 38) Eye pain 39) Weak bladder 40) Food allergies 41) Digestive problems 42) Worsening of premenstrual symptoms BSI Please put a number to the left of each item that best describes how much that problem has bothered or distressed you i n the pas t m o n t h . Please mark only one number for each problem. 1 2 NOT AT ALL SLIGHTLY 3 MODERATELY QUITE A BIT EXTREMELY 1) Nervousness or shakiness. 2) Faintness or dizziness. Pains in heart or chest. Thoughts of ending your life. Suddenly scared for no reason. Feeling lonely. Feeling blue. Feeling no interest in things. Feeling fearful. 10) Your feelings being easily hurt. 11) Nausea or upset in stomach. 12) Trouble getting your breath. 13) Hot or cold spells. 14) Numbness or tingling in parts of your body. 15) Feeling hopeless about the future. 16) Feeling weak in parts of your body. 17) Feeling tense or keyed up. 18) Spells of terror or panic. 19) Feeling so restless you could not sit still. 20) Feelings of worthlessness. 275 B F I - 4 4 Use the spaces to the left to describe yourself as accurately and honestly as possible using the following descriptions. Answer according to how you view yourself right now. Consider the first example: I see myself as someone who... "is talkative." If you strongly agree, you would put a "5" next to Item #1. If you strongly disagree, you would put a " 1 " next to Item #1. If you disagree a little, you would put a "2," etc. STRONGLY DISAGREE SLIGHTLY DISAGREE NEUTRAL I see myself as someone who. 1) is talkative 2) tends to find fault with others 3) does a thorough job 4) has a wide range of interests 5) is depressed, blue _ 6) is original, comes up with new ideas 7) is reserved 8) is helpful and unselfish with others 9) can be somewhat careless 10) is relaxed, handles stress well 11) is curious about many different things 12) is full of energy 13) starts quarrels with others 14) is a reliable worker 15) can be tense 16) tends to be quiet 17) values artistic, aesthetic experiences 18) tends to be disorganized 19) is emotionally stable, not easily upset 20) has an active imagination 21) perseveres until the task is finished 22) is sometimes rude to others SLIGHTLY AGREE STRONGLY AGREE 23 24 _25 _26 _27; 28 _29 30 J I _32 33 34 35 36 37 38 39 _40 _41 42 _43 44 is inventive is generally trusting tends to be lazy worries a lot is sometimes shy, inhibited has a forgiving nature does things efficiently can be moody is ingenious, a deep thinker generates a lot of enthusiasm can be cold and aloof makes plans and follows through with them remains calm in tense situations likes to reflect, play with ideas is considerate and kind to almost everyone gets nervous easily is sophisticated in art, music, or literature has an assertive personality likes to cooperate with others is easily distracted is outgoing, sociable has few artistic interests 276 S A S - C People respond in various ways when a close other is in need of help or support. In answering the questions that follow please try to be as accurate as possible in assessing how your close other has responded to you. Please think about the types of things your close other has said or done since the onset of your illness. For each of the items listed please indicate how often your close other has performed these particular behaviors and write the number that best corresponds to your answer in the space next to that item. 1 2 NEVER RARELY 3 4 5 SOMETIMES OFTEN ALMOST ALWAYS My close other... 1) told me how much he felt for my situation. 2) told me to let him deal with things. 3) helped in a way that didn't get him personally involved. 4) made decisions for me. 5) encouraged me to consider his insights. 6) told me how much he has admired my ability to cope in the past. 7) told me that nobody likes a "cry-baby". 8) silently listened to me for as long as I wanted him to. 9) persuaded me to change my behavior. 10) told me I came to the right person. 11) didn't make himself too available. 12) didn't argue with me. 13) enthusiastically helped out. 14) suggested that others had more serious problems than I did. 15) tried to keep me from leaning on him too much. 16) refrained from any criticism. 17) if necessary, argued for a better course of action. 18) reminded me that he has successfully overcome worse problems. 19) just listened quietly. 20) gave me a hug. 21) asked questions to help me find answers. 22) remained detached while listening to my problem. 23) did his best to protect me. 24) told me to let him help with my problem. 25) questioned how serious my problem really was. 26) felt that any help he could offer would probably make things worse. 27) told me that he was in a good position to help me. 277 1 2 NEVER RARELY 3 4 5 SOMETIMES OFTEN ALMOST ALWAYS My close other... 28 29 30 31 32 33 34 35 "36 37 38 39 40 41 42 .43 44 "45 "46 47 48 "49 .50' "51 52 53 .54 "55 .56 57 58 59 60 6 1 told me explicitly what to do, step-by-step. got me to talk more about my problem. told me that his advice is usually not that good. just tried to be there. took control of the situation. didn't intrude on my problem. reminded me that people sometimes get what they deserve. avoided influencing my course of action. avoided challenging my point of view. told me that I had to learn to live with it. was afraid to express Ins point of view on the problem. told me that he didn't want to get involved. told me that he wasn't surprised that I had these problems. tried to stop me from talking about my problem. checked up on me frequently. avoided suggesting a course of action for fear of giving the wrong advice. was an attentive listener. took over any matters he felt I couldn't deal with. told me that I needed to discuss my problem openly. let me know that he believed I would make the right decisions. reassured me that he would stick with me through all of this. helped in ways that did not take up too much of his time. avoided giving any advice. avoided being directive. kept me company. was careful not to pressure me. avoided intruding on my problem. told me that he was worried about me. told me that he had his own problems to deal with. told me the best way to deal with things. told me I had to cope on my own. advised me to take advantage of the resources he could provide, emphasized how well qualified he was to help, avoided trying to change my view of the situation. BPS Fill in the blank before each statement with the number that best describes how you thought most of the time before you got M . E . 1 STRONGLY DISAGREE 2 SLIGHTLY DISAGREE 3 NEUTRAL 4 SLIGHTLY AGREE 5 STRONGLY AGREE 1) If I didn't set the highest standards for myself, I felt I was likely to end up a second-rate person. 2) People would probably think less of me if I made a mistake. 3) If I could not do something really well, there was little point in doing it at all. 4) I would be upset if I made a mistake. 5) If I tried hard enough, I felt I should be able to excel at anything I attempted. 6) It was shameful for me to display weaknesses or foolish behaviour. 7) I felt I shouldn't have to repeat the same mistake many times. 8) An average performance was bound to be unsatisfying to me. 9) Failing at something important meant I was less of a person. 10) If I scolded myself for failing to live up to my expectations, I thought it would help me to do better in the future. DEMOGRAPHICS These last four questions are being asked for statistical purposes only. 1) When were you bom? (day/month/year) 2) Please circle the highest grade of school or year of post-secondary education that you nave completed? GRADES OF SCHOOL POST-SECONDARY 00 01 02 03 04 05 06 07 08 09 10 11 12 13 14 15 16 17+ 279 3) Taking into consideration all sources of money, approximately what was your personal income in 1994? (1) LESS THAN $10,000 I 1(5) $40,000 - $49,999 (2) $10,000-$19,999 I 1(6) $50,000 - $59,999 (3) $20,000 - $29,999 I 1(7) M O R E THAN $60,000 (4) $30,000 - $39,999 4) Taking into consideration all sources of money, approximately what was your personal income just before onset of your M.E.? (1) LESS THAN $10,000 I 1(5) $40,000 - $49,999 (2) $10,000 -$19,999 I 1(6) $50,000 - $59,999 (3) $20,000 - $29,999 I 1(7) M O R E THAN $60,000 (4) $30,000 - $39,999 We can't tell you how much we appreciate the time that you have taken to be a part of this study. If you have any questions about the project, please feel free to call us. Thank you very much for participating. 2 8 0 Appendix 7 Reminder Letter September 11, 1995 N A M E ADDRESS Vancouver, B C POSTAL CODE Dear Participant: Thank you, once again, for taking part in our study on coping with Myalgic Encephalomyelitis (ME.) . We recently completed all of our interviews; over 100 individuals with this important illness took part. Your participation has been invaluable, and will enable people to leant more about M.E. Full participation in the study involves completion of an interview and two short questionnaires (one by yourself, and one by a close other). The information collected from these questionnaires is as important as that collected from the interview. Without it, we will have difficulty making sense of your interview responses. According to our records, we do not have a complete package from you. This means that either the M.E. questionnaire, the close other questionnaire, or both, have not been received at our project office. In case the materials were misplaced, we have enclosed additional copies of the questionnaire(s), which may be sent back to the project office in the self-addressed envelope that is enclosed. If you and your close other have already completed these materials, they have probably been delayed in the mail, and should come to our project office shortly. It is important for us to get information from someone who knows you quite well so that we may compare responses of people who have M.E. with those provided by their close others. If, for whatever reason, the close other you chose to fill in the questionnaire has decided not to participate in the study, please pass their questionnaire on to someone else who knows you quite well, and who would be willing to complete the questionnaire. We expect to complete our coding and statistical analyses within a short time, and compile our findings into summary form within six months to one year, at which 281 time we will send you an overview of our findings. We will also inform the scientific community of our results by publishing them in journals. Thank you for your consideration of this request. If you have any questions, or require additional information, feel free to call Dr. Darrin Lehman (Project Director) or Mr. Kenneth Hemphill (Project Coordinator) at our project office: (604) 822-2613. Best wishes, Kenneth Hemphill, M.A. Doctoral Candidate ends. 

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