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Evaluation of an education program for parents of children with chronic health problems or disabilities McLean, Ethel Lynda 1993

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EVALUATION OF AN EDUCATION PROGRAMFOR PARENTS OF CHILDRENWITH CHRONIC HEALTH PROBLEMS OR DISABILITIESbyETHEL LYNDA McLEANB.Sc.N., University of British Columbia, 1989A THESIS SUBMITTED IN PARTIAL FULFILLMENT OFTHE REQUIREMENTS FOR THE DEGREE OFMASTER OF SCIENCE IN NURSINGinTHE FACULTY OF GRADUATE STUDIES(The School of Nursing)We accept this thesis as conformingto the required standardTHE UNIVERSITY OF BRITISH COLUMBIAOctober 1993© Ethel Lynda McLean, 1993Department ofThe University of British ColumbiaVancouver, CanadaIn presenting this thesis in partial fulfilment of the requirements for an advanceddegree at the University of British Columbia, I agree that the Library shall make itfreely available for reference and study. I further agree that permission for extensivecopying of this thesis for scholarly purposes may be granted by the head of mydepartment or by his or her representatives. It is understood that copying orpublication of this thesis for financial gain shall not be allowed without my writtenpermission.(Signature)DateDE-6 (2/88)iiABSTRACTThis study used a quasi-experimental design to determinethe effectiveness of a Parent Education Program (PEP) (Canam,1990) in increasing parental coping, family functioning, andutilization of resources, for parents of children with chronichealth problems or disabilities. Twenty-eight parents (20mothers and 8 fathers) of children with a variety of chronicconditions participated in a 16 hour structured educationalprogram based on the common adaptive tasks facing parents whentheir child has a chronic condition. Quantitative data werecollected using the Coping Health Inventory for Parents (CHIP),the Family Environment Scale (FES), and the Family Inventory forResources Management (FIRM) questionnaires. These tools wereadministered to the 28 participants one week before and afterprogram completion. Data were analyzed by applying paired t-tests and an ANOVA to the subjects' pre/post-test mean scores.Results demonstrated that mothers' overall parental coping,family functioning, and utilization of resources increased, andfathers' parental coping and family functioning improved post-intervention. To augment the quantitative findings, nine follow-up interviews with randomly selected program participants wereconducted and content analyses were applied to these data.Results demonstrated a change in mothers' coping to one of "shar-ing the responsibility or burden of care" for their child withthe chronic condition, a more active family recreationaliiiorientation, and parent recommendations for future programs.These recommendations included: program participation commence 6months to one year post-diagnosis; marital dyads attend togetherwhen possible; and both general and specific diagnostic group PEPoptions be available on an ongoing basis.ivTABLE OF CONTENTSABSTRACT ^TABLE OF CONTENTS ^  ivLIST OF TABLES  viiACKNOWLEDGEMENTS ^  viiiCHAPTER 1: INTRODUCTION  ^1Background to the Problem  ^1Purpose of the Study  ^4Research Questions  ^4Conceptual Framework  ^5Significance of the Study  ^7Definition of Terms  ^8Assumptions  ^9Limitations  ^9Research Method  ^10CHAPTER 2: LITERATURE REVIEW  ^11Noncategorical Approach to ChronicConditions  ^11Parental Coping  ^14Impact of Child's Condition onFamily Function^ 17Parental Resource Needs  ^21Evaluative Studies of ParentEducation Programs  ^22CHAPTER THREE: METHODOLOGY ^  30Sampling Procedure  ^31Data Collection Procedures  ^32The Intervention  ^33VThe Variables  ^41Data Collection Tools  ^41Ethical Considerations  ^46Data Analysis  ^47Summary ^  50CHAPTER 4: FINDINGS  ^52Sample  ^52Quantitative and Qualitative Findings  ^57Parental Coping  ^60Family Functioning  ^71Parental Use of Resources  ^76Program Variables ^  85Summary ^  87CHAPTER FIVE: DISCUSSION  ^89Characteristics of the Sample  ^89Parental Coping  ^92Family Functioning  ^96Utilization of Resources  ^99Program Variables ^  105Conclusions ^  106Implications  107Nursing Theory ^  107Nursing Administration ^  109Nursing Practice ^  109Recommendations for Further Research ^ 110vi111113121121123124126128130132133134135Concluding Remarks ^REFERENCES ^APPENDICES ^AppendixAppendixAppendixAppendixAppendixAppendixAppendixAppendixAppendixAppendixA: Participant Information Letter ^B: Notice to Parents ^C: Participation Consent Form ^D: Demographic Questionnaire E: Interview Guide ^F: Interview Categorizing Scheme^G: Control Group's Mean Scores H: Experimental Groups' Mean Scores ^I: Mean Scores for ANOVA ^J: Questionnaires ^viiLIST OF TABLESTable^ PageI. Description of Experimental andControl Groups  ^55II. Control Group's Paired t-test Resultsfor CHIP, FES, and FIRM  ^59ANOVA on Differences Between GroupMean Scores for Female Subjects forCHIP, FES, and FIRM  ^60IV. Mothers' CHIP Paired t-test Results ^61V. Fathers' CHIP Paired t-test Results  ^63VI. Mothers' FES Paired t-test Results  ^72VII. Fathers' FES Paired t-test Results  ^73VIII. Mothers' FIRM Paired t-test Results  ^77IX. Fathers' FIRM Paired t-test Results  ^84ACKNOWLEDGEMENTSThis thesis is dedicated to my three wonderful daugh-ters Tracy, Patricia, and Michelle. With their patience,selflessness, and support, I was able to complete thislengthy endeavour.My special thank-you to my thesis chairperson, ConnieCanam, who played the simultaneous roles of mentor andfriend throughout this study. I extend this thank-you toinclude Tom Sork for his clarity and his expertise in bothquantitative and qualitative research methods, and SallyThorne for giving a critical and helpful third reading.I wish to acknowledge and thank the parents who par-ticipated in this study. Their willingness and commitment,to give of their time and share their experiences, areappreciated.Finally, a sincere and warm thanks to my family andfriends for their endless encouragement and support: Mom,Dad, Mike, Elizabeth, Jenni, Carol, Mary B., Rozina, Ted,Delores, Linda C., Mary I, Linda P., Frances, and Barbara.1CHAPTER ONEINTRODUCTIONBackground to the ProblemIn Canada, there are as many as 780,000 children andyouth aged 0-19 years with some form of long-term health orfunctional impairment (Rosenbaum, 1987). The family is thesocial context within which these conditions occur and aremanaged (Litman, 1974). From a family's point of view, achronic condition always threatens; it is an everpresentcompanion, "a constant shadow" (Massie, 1985). Because theultimate responsibility for managing a childhood chroniccondition lies with the family, the normal struggles ofparenting are compounded by additional care-giving demandsand stresses that tax parent's existing coping mechanismsand resources (Peterson & Cooper, 1989; Tritt & Esses,1986). Moreover, recent trends toward deinstitutiona-lization and home care management of children with complexhealth problems (Wegener & Aday, 1989) have compounded thepressing need for resources for parents of these children intheir communities (Aday & Wegener, 1988; Nelkin, 1987).To cope effectively with the demands of parenting achild with a chronic condition, researchers have identifieda number of adaptive tasks (Canam, 1986, 1987, 1993;Hymovich, 1976; Moos & Moos, 1977) that all parents mustcomplete regardless of their child's medical diagnosis(Stein & Jessop, 1989). While some parents successfully2negotiate these tasks on their own by utilizing availableresources, many parents have difficulty and require assist-ance in order to accept and manage the demands presented bytheir child's chronic condition (Drotar, Crawford, & Bush,1984; Feeman & Hagan, 1990; Tritt & Esses, 1986).Although health professionals are becoming increasinglyaware of the needs of parents of children with chronicconditions (Coffman, 1983; Horner, Rawlins, & Giles, 1987;Walker, Epstein, Taylor, Crocker, & Tuttle, 1989), resourcesfor this population have been slow to develop. In responseto a perceived need within Vancouver's health-care communityand previous research findings, Canam and Chung developedthe Parent Education Program (PEP), using a 'Common AdaptiveTask' framework (Canam, 1993) as its basis. This structurededucational program was designed to assist parents in devel-oping the specialized knowledge, skills, and support theyneed to successfully complete the identified adaptive tasksand, thus, enhance parents' ability to cope with theirchild's chronic condition (Canam, 1993).According to Hobbs, Dokecki, Hoover-Dempsey, Moroney,Shayne, and Weeks (1984), child care and parent educationare the two instruments most readily available "to increasea nation's capacity to achieve its human development aspir-ation and fulfil its human development needs" (p. 2). Assuch, Canam's program represents a health promotion strategyfor nurses caring for children with chronic conditions and3their families in the community. This strategy promotes thefamily's ability to cope with persistent stress of relative-ly high intensity (Stein, Jessop, & Ireys, 1985).In light of the present economic pressures on thehealth care system, the Royal Commission's report on health-care and costs deems "outcomes" a guideline for determininggovernment expenditures (Royal Commission, 1991). Thisguideline states:"The focus of the health-care system must be on provid-ing those services which improve health outcomes.These outcomes must be defined, measurable, subject toanalysis, and able to be independently evaluated.Services which cannot be shown to improve health shouldnot be funded by the health-care system" (p. A-6).The above guideline delineates the socio-political mandatefor a study of the effectiveness of the PEP for parents ofchildren with a chronic condition.The PEP has been implemented and evaluated with forty-eight parents of children with a variety of chronic condi-tions (Canam, 1990). The outcome measures the researchersused were Coping Health Inventory for Parents (CHIP)(McCubbin & Patterson, 1983) and Parenting Stress Index(PSI) (Abdin, 1983). While the CHIP results demonstrated asignificant increase in parental coping post PEP, there wasno significant change in stress levels, as measured by thePSI, post intervention. Follow up interviews with 15 of the448 participants showed that the program was not only effec-tive in enhancing parental coping but parents perceivedtheir family as functioning better and utilizing resourcesmore effectively.Purpose of the StudySince utilization of resources and family functioningwere not measured quantitatively, a recommendation ofCanam's (1990) study was that the intervention be repeatedwith parental coping, family functioning, and utilization ofresources as outcomes to be measured. Therefore, the pur-pose of this study was to evaluate the effectiveness of PEPin increasing parental coping, functioning, and parents'utilization of resources. Thus, Canam's (1990) study wasreplicated utilizing one prior measure and two additionalmeasures to determine the scope of PEP's effectiveness.According to LoBiondo-Wood (1986), an independent repli-cation of a research study is "a valuable component ofbuilding the theory base for nursing practice" (p.14).Research Questions The study was designed to answer the following ques-tions about parents of children with chronic conditions whoparticipated in the PEP:1. Does program participation significantly increaseparental coping?2. Does program participation demonstrate a significantimprovement in family functioning?53. Does program participation significantly increaseparental use of resources?Conceptual FrameworkThe conceptual framework chosen for this study wasMcCubbin and Patterson's (1983) double ABCX model. Thismodel used Hill's (1949) ABCX family crisis model as a base.Hill's (1949) model conceptualized A, the stressor eventinteracting with B, the family's crisis meeting resourcesand C, the family's perception of the seriousness of theevent and how it will effect them based on their values andprevious experience. These three factors influence thedevelopment of X, or a crisis within the family (McCubbin,1984).Rather than focus on the crisis variable, the doubleABCX model added post-crisis variables which have an impacton family adaptation to stress over time. These include aA,the cumulative nature or "pile-up" of demands for changewithin the family unit as it is faced with normative andsituational events. In the family of a child with a chroniccondition, this "pile-up" could include the management ofthat child's home care regimen, normative transitions, theconsequences of family efforts to cope, and intrafamily andsocial role ambiguity. Another post crisis variable in thedouble ABCX model is the bB factor or existing and newresources. Existing resources are already part of thefamily's repertoire and can be individual, family, or com-6munity-based, whereas expanded family resources are newresources strengthened or developed in response to thecrisis. The cC factor, or the family's perception of thetotal situation, is a critical component of family coping.This factor includes the family's definition of the majorstressor event, the meaning of the associated hardships, andthe effort by the family to redefine the situation andrestore family balance. Finally, the xX factor, or theadaptation factor, is considered to be composed of threeelements. These elements are the individual family member,the family system, and the community in which the individualand family live. Family adaptation reflects family effortsto achieve a balance or fit between and among the demandsand capabilities of reciprocal relationships. In the doubleABCX model, coping denotes an interaction of resources,perceptions, and behavioral responses used by family membersto deal with stressor events. Moreover, the model presentscoping skills as the product of an interaction among thefactors previously listed and as a predictor of the adapta-bility of the family to a stressful experience.This conceptual framework was useful for understandingthe adaptation process of families confronted with an endur-ing stressful situation embodied in a chronic condition.This conceptualization acknowledges: the variability ininternal and external coping resources; the interpretationor perception of the stressful situation represents a power-7ful, though changeable, force in the family's ability tocope; and the importance of both external and internalresources to a family's vulnerability and regenerative power(Krauss, 1988).Significance of the StudyThe knowledge derived from this study has implicationsfor two aspects of professional nursing. First, an indepen-dently replicated study contributes to nursing theory. Innursing, the nature of client care research makes it diffi-cult to obtain large samples or to select them randomly andcontrol for variables that might confound the findings(Tournquist, 1986). Thus, a replication of Canam's (1990)study will help to establish the generalizability of thefindings. Second, by providing additional data throughoutcome measures, the study will document the effectivenessof a program that provides knowledge and skills for parentsof children with chronic conditions. In response to econ-omic pressures, the Royal Commission's report on health-careand costs deems "outcomes" (Royal Commission, 1991, p. A-6)a guideline for determining government expenditures. Giventhis socio-political climate and assuming that PEP efficacywill be supported, the study's findings will increase thelikelihood of the utilization of PEP for these parents on awider and more frequent basis throughout British Columbia.Therefore, the study has significance to nursing practice.8Definition of TermsChronic Condition Any anatomic or physiologic impairment that interfereswith the individual's ability to function fully in theenvironment. Chronic conditions are characterized by rela-tively stable periods that may be interrupted by acuteepisodes requiring hospitalization or medical attention.The individual's prognosis varies between a normal life spanand unpredictable early death. Chronic conditions arerarely cured, but they are managed through individual andfamily effort and diligence (Thomas, 1984).CopingThe cognitive and behavioral efforts used to masterconditions of harm, threat, or stress when a routine orautomatic response is neither readily available nor a natu-ral part of the individual's or family's repertoire asmeasured by the CHIP tool (Hill, 1949; Lazarus, 1966;McCubbin, Caubble, & Patterson, 1980).Family Function The level of adaptive functioning between interdepen-dent parts of the family as measured by the FES tool (Moos &Moos, 1986; Royal Commission, 1991).Parent Education ProgramA series of eight, two hour sessions based on thecommon adaptive task framework, and designed to provideparents with the knowledge and skills needed to cope with9their child's chronic condition.Program ParticipationTo be considered program participants, parents mustattend a minimum of five of the eight scheduled sessions.Resources Existing and new knowledge and skills that are a partof the family's capabilities for resisting crises asmeasured by the FIRM tool (McCubbin et al., 1983).Assumptions The study was based on the following assumptions:1. It was assumed that the Parent Education Programwould have similar effects on parents' coping, family func-tioning, and utilization of resources regardless of thespecific medical diagnosis of their child.2. It was assumed that the parents would understand andrespond honestly to the questionnaires and the semi-struc-tured interview.Limitations The depth and richness of the data for the study waslimited by time constraints and other issues surrounding aMaster's Thesis study. These constraints accounted for theabsence of a process evaluation of the PEP, and the limitednumber of participants in the control group and in thequalitative aspect of the study.10Research MethodThe methodological strategy for this study was a non-equivalent control group, quasi-experimental design(LoBiondo-Wood & Haber, 1990). Within this quantitativemethod, there were two components. The first componentinvolved the administration of three pre- and post-interven-tion questionnaires. The second component utilized semi-structured interviews, four to five months post interven-tion. These interviews augmented the interpretation of thefindings of the questionnaires and determined the mainten-ance of change to that point in time.11CHAPTER TWOLITERATURE REVIEWThis chapter reviews the theoretical and research basedliterature which is pertinent to assessing the influence ofthe PEP on parental coping, family functioning, and utiliz-ation of resources. Given that the references specific toeducation programs for parents of chronically ill childrenare limited, literature which is relevant to parenting achild with a chronic health condition and linked to thepurpose of the study are reviewed.This chapter is organized into five major sections.Since the PEP is based on a noncategorical approach tochildren's chronic health conditions, the initial sectiondiscusses this theoretical perspective. The second sectionfocuses on parental coping strategies used to manage theimpact of a child's chronic condition. The third sectionreviews literature regarding the impact of a child's chroniccondition on family functioning. The fourth sectionaddresses parental resource needs. The fifth sectionreviews evaluative studies of formal parent education pro-grams.Noncategorical Approach to Chronic Conditions In recent literature, researchers have attempted tofind common threads among chronic conditions. Rather thanconsidering individual problems unique to particular diseaseprocesses, the noncategorical approach views chronic condi-12tions as an entity (Phillips & Brostoff, 1989; Stein et al.,1989; Woods, Yates, & Primomo, 1989). Pless (1985) assertedthat "from the point of view of either service or research,a strong case can be made for viewing all chronic condi-tions, regardless of their individual characteristics, asone group having many problems in common ..." (in Hobbs &Perrin, 1985, p. 42). The focus of Walker et. al.'s (1989)questionnaire survey of 910 parents was whether parents ofchildren with different chronic conditions have differentperceived needs as opposed to similar ones. The results,from parents of children with 23 different chronic condi-tions, revealed that the perceived needs and rankings ofimportant services by these parents are more similar thandifferent. Despite the large sample, the researchers used apurposive study sample and respondents were representativeof a white, well-educated, and insured population. There-fore, the results have limited generalizability. The find-ings of Horner et al.'s (1987) study of 164 parents ofchildren with a variety of chronic conditions indicatedcommon areas of concern across conditions. Stein et al.(1989) examined 2 longitudinal data sets. First, the insti-tutional sample of 209 children from birth to 11 years ofage with a wide range of chronic conditions was urban, poor,and from minority groups. Second, the national (USA) prob-ability sample, from the Health Examination Survey, con-sisted of 329 parents of children with 6 categories of13illness. These researchers examined the following hypoth-esis: the diagnosis itself does not provide a great deal ofdescriptive information about psychological and socialparameters because the variability within each diagnosticcategory is as great or greater than variability betweenthese categories. The study results upheld this hypothesisand showed that diagnosis was related to differences only ontraditional medical variables. According to Stein et al.(1989), since local communities are more likely to havechildren with a range of conditions and have only a smallnumber within each disease category, a noncategoricalapproach facilitated the development and evaluation ofservice programs targeted to meet the diverse types ofspecial needs of parents dealing with the impact of theirchild's chronic condition.In contrast to the noncategorical approach to chronicconditions, Holroyd and Guthrie (1986) demonstrated, in aquantitative questionnaire study, that across the clinicalgroups of neuromuscular disease, cystic fibrosis, and renaldisease, different patterns of stressful responses werenoted for each of the physical disorders. Similarly, in anearlier study, Holroyd and McArthur (1976) investigatedparents' responses to three different types of mental retar-dation using the QRS. The study results supported thehypothesis that the mothers of autistic children reportedmore problems for themselves and their families than mothers14of Downe's Syndrome or general psychiatric clinic children.Bouma and Schweitzer (1990) asserted that each disease hasgreat variability in its clinical expression, chronicity,severity, and the associated hardships imposed on individualfamilies. Bouma et al.'s (1990) study compared the differ-ent patterns of stress reported by 24 mothers with childrenwith either a chronic physical illness (cystic fibrosis), achronic psychological disorder (autism), and children with-out a physical or psychological disorder. The resultsprovided empirical support for the suggestion that chronicmental disorders in children contribute more to familystress than chronic physical illness. Therefore, Bouma etal. (1990) stated that the results "highlight the need forfamily-based intervention programs specifically tailored tosuit the psychological or physical nature of the child'sdisorder" (p. 729).Clearly, the literature is ambiguous in its con-clusions with regards to the question of whether a non-categorical approach to chronic conditions is an appropriateone.Parental Coping in Response to a Child's Chronic ConditionWhile there are a number of studies available on par-ental coping few of these focus on the identification ofparental coping strategies to manage the impact of a child'schronic condition on the family.Schulman (1983), in a study of parents of children with15leukemia, noted that approximately 85% of families copedwell. These families shared the following common character-istics: a history of prior good coping, good quality ofmarital and familial relationships, good support system,religious faith, and trusting relationships with healthprofessionals. These findings were further supported by thestudies of Rodebush (1986), Athreya and McCormick (1987),and Scharer and Dixon (1989). In McCubbin, Nevin, Cauble,Larsen, Comeau, and Patterson's (1982) study of how familiescope with and adapt to their child's chronic condition, theresearchers studied 217 families who had a child with cer-ebral palsy using four quantitative measures. The studyidentified three major coping patterns which were the samefor both mothers and fathers. The data indicated that theparental coping to keep the family together, to gain friend-ships and extended family social supports, and to consultwith the medical team were all-important. The researchersconcluded that it is as important to care for family membersand the family itself as it is to attend to the specializedneeds of the child with cerebral palsy.Frey, Greenberg, and Fewell's (1989) quantitativestudy, of 48 mothers and fathers of handicapped children,determined the relations of (a) child characteristics, (b)family social network, (c) parent belief systems, and (d)coping styles to parental stress and coping outcomes. Whileparental beliefs were the single most powerful correlate of16parent outcomes, parents differed dramatically in the degreeto which they viewed their child's disability as a negativeand stressful occurrence.Venter's (1981) study of 100 families with cysticfibrosis children identified two major coping strategieswhich promoted a higher level of family functioning: (a)when parents share the burden of illness, both with familymembers and with someone outside the family; and (b) thefamily's ability to endow the child's illness with meaning(either philosophical or religious). Both strategies helpedfamilies manage the hardships of the child's illness overtime. Moreover, Van Cleve's (1989) study explored how 100parents coped with their child's spina bifida. From theresults of the mailed study instrument, significant positiverelationships were found between coping and (a) maritalsatisfaction, (b) quality of the relationship between hus-band and wife, and (c) attending a spina bifida supportgroup.An additional aspect of parental coping with a child'schronic condition, parenting skills, was described in theliterature. Haladay (1978) reported on problems in parent-ing a child with a chronic condition faced by 11 pairs ofinterviewed parents. From the study results, the researcherasserted that for the parents of these children the appro-priateness of the old rules and approaches to child rearingwere called into question. The results of this study,17although non-generalizable beyond the small study popula-tion, illustrated the need for added appropriate parentingskills.^According to Klein and Simmons (1979), parentsoften reported the loss of confidence in their parentingskills and discipline patterns because they are unclearabout how to raise their child with a chronic condition.Moreover, they are confused by the sick role. Similarly,Austin (1990), in an opinion article, asserted that parent-ing a child with a chronic condition required specializedparental knowledge. McCubbin (1984), in her mailed ques-tionnaire study of 100 families of children with cysticfibrosis, assessed parental coping. Based on the study'sresults, McCubbin (1984) asserted that participation insupport groups with parents in similar situations providesparents with much needed parental support.Although coping strategies are individualized andmothers and fathers differ in their adjustment to and abil-ity to cope with their child's chronic condition, thestudies indicated that parents require knowledge and skillsthat will enhance their ability to cope.Impact of a Child's Chronic Condition on Family FunctioningVarious researchers have studied the impact of achild's chronic condition on family functioning (Sabbeth,1984; Strauss & Munton, 1985; Venters, 1981). Economicburdens, family communications, and marital adjustments werethe recurring themes throughout these studies. According to18Stein and Reissman's (1980) definition, impact is the effectof a child's illness on the family system. Early studies onthe emotional and familial impact of a chronic condition onthe family focused on the psychopathology and dysfunctionaleffects on the child and family (Lawlor, Nakielny, & Wright,1966; Troupauer, Franz, & Dilgard, 1970). Turk's (1964)study of 25 families documented increased family stresslevels as a result of communication problems. Parentsavoided discussing the child's illness with each other,friends, and relatives. The results from Meyerowitz andKaplan's (1967) study of 111 families of children withcystic fibrosis revealed a parental sense of social isola-tion due to perceived negative attitudes from the communityand their lack of time for community involvement. McCollumand Gibson (1970), from their study of 56 families, assertedthat parent's adaptation to cystic fibrosis progressedthrough four major stages: prediagnostic, confrontational,long-term adaptive, and terminal. Severe psychologicalreactions of the parents during these stages includeddenial, anxiety, guilt, hostility, anger, and depression.In addition to these emotions, parents experienced confusionwith regard to childhood developmental phases. According toLewis and Rachelefsky (1984), mothers assume the majorresponsibility of caring for the chronically ill child. In asurvey conducted by Damrosch and Perry (1989), it was re-ported that mothers of children with Down's syndrome had a19higher frequency of behaviors such as expression of negativeaffect and self-blame, as well as chronic sorrow. Theseresearchers found that 83% of fathers described adjustmentin terms of gradual steady recovery and 68 % of the mothersreported periodic peak- and -valley crisis patterns.Bregman (1980) studied six families whose children hadDuchenne muscular dystrophy and Wednig-Hoffmann disease.The investigator lived with each family to learn the mainconcerns of parents and the ways in which they managed theseconcerns. Even though six families was a small sample andthe results are not generalizable, the research showedpositive behaviors performed by families, with parents asthe primary managers. Bregman suggested that this positivefocus is useful for the subsequent design of education thatbuilds on family strengths and enables parents to share,with each other, behaviors that work.Athreya et al. (1987) studied the impact of 3 differentchildhood chronic conditions on families. In this study,researchers interviewed 483 families and the results showedthat limitations of activities of the child add to parentalstrain which has a greater impact than the actual medicaldiagnosis. Families most vulnerable to these stresses werethose with a child requiring care disproportionate to theresources (physical and financial) available to the par-ent(s).^The impact of a child's chronic condition on themarital relationship was identified as a significant factor20that affected parents' stress levels. Gath (1977) compared26 parents of children with Downe's Syndrome with 26 matchedcontrol parents using a semistructured interview and ratingscales. Study findings showed that parents of chronicallyill children had significantly poorer marital relationshipsthan the matched control parents. In Tew, Payne, andLaurence's (1974) longitudinal study, which assessed themarital harmony of 59 parents of children with spina bifidaand 58 control couples, findings revealed that maritalharmony increased over a period of time in control couplesand decreased in couples with spina bifida children.^Incontrast to the findings of the previous two studies,Koocher and O'Malley (1981) presented evidence that illnessbrings parents closer. Of the 176 parents whose childrenwere survivors of childhood cancer, 74% reported the illnessbrought them closer as a couple and 92% reported that theillness brought them closer as parents. In support of thesefindings, Finley, Putherbough, and Netley (1977) comparedthe number of divorces in 40 families of children who hadsurgical correction of tetralogy of Fallot with matchedfamilies of children who had undergone an appendectomy. Thedivorce rates in the two groups were not significantlydifferent. These results refuted the findings of Tew etal., Payne, and Laurence (1974) and Gath's (1977) studies.From the reviewed studies, the literature on theeffects of a child's chronic condition on marital relation-21ships is contradictory. While marital function is chal-lenged by a child's chronic condition, there is no differ-ence in divorce rates. Because an intact family is the mostappropriate caregiver and the most important influence onthe child (Royal Commission, 1991; Shelton, Jeppson, &Johnson, 1987), actual and potential distress requiresamelioration by increasing parental coping strategies (RoyalCommission, 1991).Parental Resource Needs Horner et al. (1987) conducted a survey of parents of164 children with a variety of conditions to discover theirperceived needs. Appropriate educational opportunities fortheir child, help with medical bills, and recreation fortheir child were the three major needs identified by par-ents. Moreover, Walker et al.'s study (1989) revealed thatparents need: parent education on rights and entitlements(74%), help in getting needed services (72%), information oncommunity resources (61%), parent support groups (49%), andparent training for child health needs (49%). In Diehl's(1991) qualitative study, focus group interviews with 80caregiving parents were used to obtain in-depth informationof the needs of parents with medically complex children.Even though a selection bias towards a population thatenjoys group activities existed in this study, supportgroups were lauded for the invaluable services provided tothe care-giving parents.22From the results of the above studies, the commonthreads of parent education and support groups as importantresources were evident.Evaluative Studies of Parent Education Programs Although there is a paucity of nursing literature onthe evaluation of group, structured education programs forparents of children with chronic conditions, this segment ofthe literature review includes articles that discuss theeffects of parent education groups for parents of childrenwith chronic conditions.In 1981, Rudolph, Pendergrass, Clarke, Kjosness, andHartmann developed and pilot tested a structured educationprogram for parents of children with cancer. By educatingparents of children with cancer in group situations,researchers believed they could reach more parents, provideemotional support, disseminate information, possibly reducestress, and build coping skills. Eighteen families partici-pated in this study, with a total of 28 participants dividedinto two education programs. Several forms were used toassess the impact of the program and these included: (a)knowledge tests, consisting of 44 multiple choice andtrue/false questions, assessed knowledge gain in pre-,immediate post-, and 3 month post-test situations; (b) 'myresponse to my child's disease' questionnaire addressesparental stress levels and perceived coping abilities; (c)individual evaluation forms for each session gather opinions23about the speakers, reading materials, self-instructionalexercises, program format, and the session in general; and(d) 'The State Trait Anxiety Index' evaluates levels ofdistress before and after the program. Results showed thatparents learned new information as a result of programparticipation. However, the analyses of the effects of theprogram on coping abilities and stress levels were incon-clusive, even though researchers state that "positiveeffects on coping and stress are suggested" (p. 53). Thechange in coping abilities and stress levels were limited tosubjective reports rather than quantitative measures. Inthese reports, fathers described their appreciation of theopportunity to learn about the medical aspects of cancer andall subjects felt they had gained from the opportunity tomeet with others to share feelings and experiences. More-over, changes in the communication patterns between husbandsand wives occurred in some families and several wivesdescribed their husbands as "opening-up" for the first time.Since the terms "some and several" have no numerical value,it was difficult to determine the significance of thischange and the reliability and validity of the study'smeasures was not addressed. Furthermore, the study lacked acontrol group, and demographic details of the study popula-tion, such as age, ethnic origin, socioeconomic variables,and education levels of participants were missing. Whilethe applicability of the study's findings is limited to its24population, the positive knowledge outcome, the sharing offeelings and experiences, and the change in communicationpatterns indicated that the participants had benefited fromthe program.Hornby and Murray (1983) studied four large (22-52)group programs for parents of children of school-aged,physically handicapped, hearing impaired, and mildly andmoderately mentally handicapped children. Between six andeight weekly 2 hour semi-structured group sessions wereheld. During these sessions, various condition-specific andundisclosed issues, concerns, and communication strategieswere presented and discussed. Each parent program wasevaluated using an attendance record, a self-report post-program questionnaire concerning the benefits and limita-tions of the program, and the clinical impressions of thegroup leaders. The researchers reported that: the vastmajority of parents felt more confident in their ability toparent their handicapped child, most parents commented thatthey appreciated the opportunity of sharing problems andfeelings with other parents who understood them, and manyparents commented on the increased knowledge which they hadgained. With the exception of the attendance records, themeasures were subjective and, while the results cannot begeneralized, it is interesting to note that parents per-ceived themselves as having increased knowledge and confi-dence.25Gaudet and Powers (1989) evaluated the effects ofparent participation to determine the impact of their'parent group program'. This program consisted of 13 2-hoursessions led by the program developer. Three groups of 5parents', of children with a variety of chronic physical,mental, or emotional conditions, attitudes were measured inpre- and post-test situations using 'The New BeginningsSurvey'. This survey tool consisted of 10 items to be ratedusing a Likert scale. Evidence of face and consensus valid-ation for this survey was absent and reliability was notaddressed. Although the researchers determined that achange in parental attitude occurs, they extrapolated thischange in attitude to conclude that the "results indicatethat parents' knowledge about coping with pediatric chronicillness and their coping skills did change from the begin-ning of the program" (Gaudet et al., 1989, p.97). Becausethe validity and reliability of the tool were not addressed,the small sample, and the erroneous conclusions, the studyresults were not useful.Duffy and Halloran (1987) studied the effect of a 4week, lecture and discussion focused, community-based educa-tion and support program on knowledge and perceptions of 35parents who have children with asthma. Pre-and post-programtools were administered to measure changes from baselineparameters. Knowledge specific to anatomical structures,precipitating conditions, and medications significantly26improved during the period of the study. While perceptionsabout their understanding of asthma had changed, this under-standing varied by sex. Female ratings increased and maleratings had dropped. Meanwhile, parental perceptions ofconfidence in dealing with and attitudes towards their childwith asthma showed significant changes but this change wasat differing rates across gender. Due to the absence ofexplicit details about the study's community setting andrecruitment, the lack of a control group, and few details onwhich to determine the validity and reliability of theAsthma Knowledge and the Asthma Perceptual tools, the gener-alizability of results to the population was limited and,adding further to these limitations, the maintenance ofchanged knowledge and attitudes was not addressed.Lewis, Hatton, Salas, Leake, and Chiofalo (1991) con-ducted a large cross-national randomized control trial of afamily-focused educational program, for parents of seizuredisordered children, which was based on a helping andcounselling model. The questionnaires were administeredpre- and 5 months post-intervention. The experimental(n=185) and control (n=180) groups attended four-1&1/2 hourdifferently designed sessions. Whereas the control group'sparents and children together attended a program on chronicconditions that was specifically designed for theirchildren, the experimental group's children and parentsattended age specific separate sessions. While both experi-27mental and control groups increased their knowledge aboutseizures and seizure care, only the experimental groupdemonstrated a significant decrease in anxiety. The inves-tigators noted that in both pre- and post-testing, thefathers rated lower anxiety levels than the mothers. Thiswas a well planned and executed study in two nations. Whilean established tool was used to measure parental anxiety,the instrument used to examine knowledge was designed by theresearchers and evidence of their reliability and validitywas not included in the report. However, the strengths ofthis study included: the large and randomized experimentaland control groups, the cross-national samples, the groupsfrom Chile were 98 to 100% of low socio-economic status, 1/3of each group was male, and the 5-month post-test.Canam (1990) designed, implemented, and evaluated aneducation program (PEP), with 48 parents of children with avariety of chronic conditions. The researcher used twoquantitative tools, in this quasi-experimental repeatedmeasures study, to determine the changes in parental copingand stress from before and after participation in the pro-gram and when compared to a control group. Results demon-strated a significant increase in parental coping and adecrease in parental stress levels. In addition, follow-upguided interviews were conducted with 15 of the 48 subjectsand the results showed that the program was effective inenhancing parental coping, family function, and use of28resources. Recommendations from that study were that it berepeated using measures of family coping, family function-ing, and family utilization of resources. In addition, itwas recommended that both parents attend the program to-gether and that the program be opened to parents of childrenwith mental disabilities.Similar to the literature reviews of Tramontana,Sherrets, and Authier (1980); Fine (1989); and Dembo,Sweitzer, and Lauritzen (1983), which critically reviewedevaluative studies of healthy-child parent education pro-grams, the results from the preceding reviewed studiesindicated changes in knowledge, parental involvement, andattitude as a result of various parent education programs.In accordance with Tramontana et al. (1980) observations,research has been limited in scope and the methodologicaldeficiencies in many of these studies render positiveresults subject to alternative interpretations. In additionto the methodological deficiencies, only Lewis et al. (1991)and Canam (1990) addressed the issue of maintenance ofchanged knowledge, beliefs, or behaviors. Moreover, withthe exception of Gaudet et al (1989) and Canam's (1990)studies, these studies considered diagnosis specificsamples.This quasi-experimental study was designed to provideempirical evidence that either supported or refuted thehypothesized effects of Canam's (1990) study. Using three29quantitative tools to test the single control and fourexperimental groups and nine randomly selected subjects fora four to five month post-intervention interview, the studyexplored the effectiveness of the PEP in increasing parentalcoping, family functioning and utilization of resources forparents of children with a wide variety of chronic condi-tions and determined the stability of those effects to thispoint in time.The application of the quasi-experimental methodologyused in this study is described in the following chapter.30CHAPTER THREEMETHODOLOGYThis study used a quasi-experimental, pretest/posttest,non-equivalent control group design to determine if the PEPintervention increased parental coping, family functioning,and utilization of resources. In addition to this quanti-tative design, a qualitative component, which consisted offollow-up interviews with selected program participants, wasimplemented to augment the quantitative findings. In thischapter, the sampling procedure, data collection procedures,the intervention, the variables, data collection tools,ethical considerations, and data analysis procedures areconsidered.The research questions were as follows:1. Does program participation significantly increaseparental coping?2. Do program participants demonstrate a significantimprovement in family functioning?3. Does program participation significantly increaseparental use of resources?Statistical null hypotheses were used to test these researchquestions and it was hypothesized that:1. There would be no significant difference in parentalcoping after program participation.2. There would be no significant difference in familyfunctioning after program participation.313. There would be no significant difference in parentaluse of resources after program participation.Given that coping, family functioning, and utilization ofresources have 20 patterns/subscales, the above statisticalhypotheses for each variable was extended to each of thesepatterns/subscales.Sampling Procedure In order to be included in this study, subjects musthave had a child with a chronic condition and that child'sdiagnosis must have been made a minimum of 6 months prior toprogram commencement. In addition, subjects had a verbalcommand of English, a grade 9 reading and comprehensionlevel, and consented to participate in the study.The sample for this study was a convenience sample of28 volunteer parents who attended four separate group pres-entations of the PEP. While each group size varied, thefour groups of parents originated from three differentsources. First, two groups of parents were recruited fromthe neurological clinic of an urban pediatric hospital.These parents had children who are mentally, physically, andsocially challenged due to difficult epilepsy. Second,parents were selected on a first come, first serve basisfrom an in-patient and out-patient pediatic hospital popula-tion. Third, the parents were drawn from an in-schoolplacement program within a community health department.These parents had children who are from Greater Vancouver's32mainstreamed school population. A nurse who worked in eachof these settings sent or gave out a participant informationletter to all eligible participants (Appendix A & B). Inturn, interested parents contacted the group leaders byphone and if they met the selection criteria, they wereinvited to join the program. The non-equivalent controlgroup was obtained from the neurologic clinic's Spring PEPwait list.For the interview segment of this quasi-experimentalstudy, a sample of nine subjects was selected. This samplewas selected using a random number table (Wilson & Bright,1952). According to LoBiondo-Wood et al. (1990), the advan-tages of this simple random sampling method include: thesample selection is not subject to the conscious biases ofthe researcher; the representativeness of the sample inrelation to the population characteristics is maximized; andthe differences in the characteristics of the sample and thepopulation are purely a function of chance. The interviewparticipants were selected from the subjects who had com-pleted the three initial winter PEP sessions. Further, 3subjects were selected from each of these three groups.This sub-sample of 9 parents was interviewed by theresearcher, using a semi-structured interview format.Data Collection Procedures The pretest data collection took place one week beforeeach of the four programs began. At this time, subjects33signed consent forms (Appendix C) and filled out the threequestionnaires (Appendix G) and the demographic form (Appen-dix D). The second data collection took place one weekafter completion of the program and the procedure was thesame. Moreover, the control group was tested during thesame pre-test and one week post-test times. The interviewswere conducted four to five months after program completion.While the researcher administered the tools and the semi-structured interviews, she was not involved in the presenta-tion of the program.The InterventionThe details of the intervention are presented in fivesegments. These segments include the program description,the program facilitators, the length, frequency, and time ofthe sessions, the attendance requisites, and the venue.The Parent Education ProgramThe intervention that was evaluated in this study wasan education program (PEP) for parents of children with anychronic condition. The program was based on the commonadaptive task framework delineated by Canam (1993). Theeight common adaptive tasks identified by Canam include:accepting the child's condition; managing the child's condi-tion on a daily basis; managing ongoing stress and periodiccrises; meeting the child's developmental needs; meeting theneeds of other family members; assisting family members tomanage their feelings; educating others about the child's34condition; and developing and utilizing resources.According to Canam (in press), PEP presents familieswith a competency-based coping model which is base on thepremise that"there are a number of psychosocial tasks to be com-pleted when a family has a child with a chronic condi-tion. If parents develop the knowledge and skills theyneed to complete these tasks, they will cope effective-ly with their situation (p.3)".The rationale for this conceptualization is based on theindividual's need for mastery. According to Canam (inpress), presenting the issues as tasks to be completed givesparents the idea that they can manage the situation and havecontrol over it. Therefore, the purpose of the program isto enhance parental coping with their child's chronic condi-tion and decrease their stress by teaching them the knowl-edge and skills they need to complete the adaptive tasksfacing them (Canam, in press).The program consists of eight two-hour sessions heldonce a week for eight weeks with each session focusing onone of the adaptive tasks (Canam, in press). The program isstructured to offer a minimum of lecturing and a maximum ofparental involvement. In order to facilitate this parentalinvolvement and consistency within the program, Canam hasdeveloped both a teacher and a parent manual that includesdetailed information and exercises for each of the eight35sessions. Each parent is given a copy of the upcomingsession and asked to read it before they come so they arefamiliar with the topic. By the end of the program, theyhave a completed copy of the manual to use as a futurereference source. To evaluate the program content, Canamsent the completed manuals to six experts in the field ofchildhood chronic health problems and child and familyeducation. These individuals included a prominent nurseeducator and researcher, a pediatrician, a social worker, apsychologist, and two parents of children with chronicconditions. They were asked to respond to the relevancy andinclusiveness of the content and the process of implementingthe program. Based on the feedback received, Canam mademinor changes and the program was implemented.The outline of the program is as follows: (Canam, inpress)Session 1: Introduction and exploring personal meaning.This session includes an overview of the program andbegins the process of developing group cohesion. This isaccomplished by parents introducing themselves and theirfamily, including the child with the chronic condition andtalking about what they hope to get out of the program.This session also focuses on helping parents to explore thepersonal meaning that their child's condition has for them.To do this, parents are asked to form groups of three andtell each other what it is like to be the parent of a child36with a chronic condition. They then reconvene and discusswhat it was like for them to talk about the effect of theirchild's illness on themselves and their family. The skilltaught in this session is that of refraining, to help parentswho have a negative outlook of their situation to thinkabout other ways of looking at it.Session 2: Managing your child's condition on a dailybasis.To manage their child's health condition effectively,parents need complete and accurate information about thedisease and its treatment. This session focuses on the kindof information parents need and when it is needed, factorsthat affect communication of information, and how to requestand remember information. The skills taught in this sessionare communication and memory skills.Session 3: Managing ongoing stress and periodic crisis.This session examines the common stressors affectingfamilies of children with chronic conditions, helps parentsto examine the stressors and responses to stress in theirown families, and explores effective and ineffective ways ofcoping with stress including techniques for coping with achild's hospitalization. It also presents the tasks thatparents need to complete in order to cope effectively withtheir child's chronic condition. Skills taught in thissession are those related to stress management such asrelaxation techniques and thought-stopping techniques.37Session 4: Meeting your child's developmental needs.This session discusses the normal developmental needsof children at different ages, how a chronic condition caninterfere with those needs, and ways in which parents canhelp their child to meet his or her needs within the contextof a chronic condition. One of the skills focused on inthis session is learning how to discipline effectively whichincludes parents' attitudes toward discipline as well astechniques such as natural and logical consequences andteaching the child how to problem solve.Session 5: Meeting the needs of other family members.When a child has a chronic condition, the parents'time, energy, and attention can be focused on the child tothe detriment of other relationships within the family.This session focuses on the needs of all family membersincluding the siblings of the child with the chronic condi-tion, the parents' needs as individuals, and their needs asa couple. Ways of meeting these needs are explored. Par-ents are also asked to assess the strengths of their familyto help them focus on their positive qualities. Communica-tion and problem-solving skills are taught in this session.38Session 6: Assisting family members to manage theirfeelings.Families of children with chronic conditions share manycommon experiences and feelings. One of the most importantfactors in helping their family cope is for parents to dealopenly with their own feelings and to help their children todeal with theirs. Learning to express feelings honestly andappropriately and communicating with children about theirfeelings requires skills. This session focuses on helpingparents to identify, accept, and express their feelingsappropriately. The point that is emphasized is thatchildren take their cues from parents and if parents com-municate openly and honestly the children are more likely todo so also. The skills taught during this session arecommunication skills, particularly active listening andempathy.Session 7: Educating others about the child's condi-tion.Once parents have a good understanding of their child'scondition, they often need to explain it to others includingthe child if he or she is old enough, siblings, relatives,friends, neighbours, teachers, and other people in thecommunity with whom the child has ongoing contact. Inessence, parents become the educators about their child'schronic condition. To take on this role, parents not onlyneed a good understanding of the condition but also skill in39communicating with others. This session focuses on communi-cation skills and provides information on age appropriateexplanations to help parents explain the child's conditionto the child and siblings of different ages.Session 8: Developing and utilizing resources.Having a viable support network can buffer or reducestressors that the family experiences. Yet, parents areoften unable to make the best use of the potential supportavailable to them because of a reluctance to ask others forhelp and because of a lack of experience in dealing withbureaucracies and health care agencies. This sessionfocuses on helping parents to know their rights as well astheir responsibilities and teaches them how to mobilize andutilize their support systems. The skills taught in thissession are assertiveness and negotiation skills.The Program Facilitators According to Sternlicht & Sullivan (1974), group pro-cedures are most effective when two leaders are used. Twocoleaders were present for each program session and assumedfacilitator roles. The qualifications of these facilitatorsvaried. The two neurology clinic group facilitators wereexpert pediatric nurses with experience in group techniques.The facilitators of the general pediatric hospital group haddiverse background qualifications. While one person had amasters of nursing preparation and was an expert pediatricnurse clinician, the other person was an experienced teacher40of handicapped children at a pediatric long-term care facil-ity, a mother of a child with a chronic condition, and aformer PEP participant from Canam's (1990) initial programpresentation. Of the two community in-school program groupfacilitators, one person was the administrator of the in-school program and the other person was one of three commun-ity health nurses responsible for the integration of thesechildren into the school system. With the exception of thecommunity health facilitators, these coleaders donated theirexpertise to promote the program. In order to provideconsistent instruction, Canam conducted a three-hour pre-program review of the course content, teaching and learningstrategies, and group processes.Frequency, Length, and Time The program consisted of eight consecutive sessionsthat were two hours in length. These sessions were pres-ented during the evening from 7:30 to 9:30. While three ofthe programs were offered in the Fall of 1992, the fourthwas given in the Spring of 1993.The Attendance Requisites In order to be considered a study subject, programparticipants had to attend five of the eight sessions.Moreover, these parents attended the two additional sessionsthat were required for the evaluation of the PEP.The Venue The two neurology clinic groups and the general pediat-41ric hospital group presentations of PEP were held in ahospital board room donated by this institution's adminis-trators. The fourth program site was the lunch room of anurban community health unit.The Variables The independent variable for this study was PEP. Thedependent variables were coping behaviors, family function-ing, and utilization of resources. The effects of theindependent variable on these three dependent variables wereinitially tested quantitatively with the quasi-experimentalpre-test/posttest design. The data were collected pre- andpost-intervention and differences in the dependent variableswere evaluated (Roberts, 1989).According to Goodwin and Goodwin (1984), adding aqualitative component to a quantitative design increases themeaning of the obtained data. Within the double ABCX frame-work, the family's perception (cC) of the total situation isa critical component of family coping (McCubbin et al.,1983). Therefore, the qualitative constituent of this studygenerated vital and enriching data pertaining to meaning ofthe changes in parental coping, use of resources, and familyfunction for parents. In addition, because the interviewsfollowed 4 to 5 months post intervention, they supported themaintenance of change to that point in time.Data Collection Tools The questionnaire and interview data collection tools42utilized in this study are presented separately and inorder. Three instruments were employed in the quantitativecomponent of this study.The Coping Health Inventory for Parents First, "The Coping Health Inventory for Parents (CHIP)"(McCubbin, McCubbin, Nevin & Cauble, 1979) was utilized tomeasure subjects' coping behaviors (Appendix J). Thismeasure was a 45-item self-report questionnaire checklistthat provided information on how parents perceive theiroverall responses to the management of family life when achild has a chronic health problem.The 45 items are divided into three coping patterns.Coping Pattern 1 consists of 19 behavioral items which focuson family dynamics and the parents' outlook on life and theillness. Coping Pattern 2 consists of 18 behavioral itemswhich focus on parents' coping efforts to maintain a senseof their own well being through social relationships,involvement in activities which enhance their self-esteem,and management of psychological tensions. Coping Pattern 3consists of eight behavioral items which focus on parents'coping efforts to understand the medical situation andmaster the information needed to care for their child athome through communication with other parents and consulta-tion with medical staff.These three coping patterns were derived from factoranalysis representing 71.1% of the variance of the original43correlation matrix. Chronbach's alpha, computed for theitems on each coping pattern, indicated reliabilities of.79, .79, and .71, respectively (McCubbin et al., 1983).Family Environment Scale The second instrument was the "Family EnvironmentScale" (FES) (Moos & Moos, 1986) (Appendix J). The FES wasdesigned to measure three broad content dimensions of socialclimate in both normal and distressed families. First, therelationship dimension was measured by the Cohesion, Expres-siveness, and Conflict subscales, which assess the degree ofcommitment, openness, and disagreement, respectively, amongfamily members. Second, the growth dimension was describedby five subscales (Independence, Achievement Orientation,Intellectual-Cultural Orientation, Active RecreationalOrientation, and Moral Religious Emphasis) that measure thefamily's concern with aspects of personality and socialdevelopment. Finally, the third dimension, termed systemmaintenance, was assessed by the subscales of Organizationand Control, which measure the extent of formality andhierarchy, respectively, in the family structure. The 10subscales are scored as the sum of endorsed items; higherscores indicate greater degrees of the characteristics.These subscales have an internal consistency ranging from.64 to .79, and show average subscale intercorrelationsaround .20, indicating that they measure distinct, thoughsomewhat related aspects of family social environments (Moos44& Moos, 1976). In addition, the test-retest reliabilitiesare acceptable, ranging from a low of .68 for independenceto a high of .86 for cohesion (Moos et al., 1986).The Family Inventory of Resources for Management The third instrument, the "Family Inventory ofResources for Management (FIRM)" (McCubbin, Comeau, &Harkins, 1981), was a 69 item self-report questionnairechecklist which assessed the family's social-psychological,community and financial resources, the family system andsocial support dimensions (Appendix J). The 69 items aredivided into the following four sub-scales.Family Strengths 1: The "Esteem and CommunicationScale" assesses parents' social-psychological resources insix areas. These areas include: (a) family esteem (reportfrom friends, relatives, co-workers, and among family mem-bers); (b) communication (sharing feelings, discussingdecisions); (c) mutual assistance (helping each other andrelatives); (d) optimism; (e) problem-solving ability; and(f) encouragement of autonomy of family members. Thereliability (Chronbach's alpha) is .85.Family Strengths 2: The "Mastery and Health Scale"assesses social-psychological resources among three dimen-sions. These dimensions include (a) a sense of mastery overfamily events and outcomes (fate control, flexibility,managerial abilities); (b) family mutuality (emotionalsupport, togetherness, cooperation); and (c) physical and45emotional health. The reliability (Chronbach's alpha) is.85.The "Extended Family Social Support Scale" containsitems which show giving and receiving help from relatives interms of physical and material help as well as throughsupportive communication (esteem, respect, appreciation).The reliability of this scale (Chronbach's alpha) is .62.While this alpha is relatively low, the authors of the FIRMhave not provided a rationale.The "Financial Well-Being Scale" assesses the family'ssense of well-being surrounding finances covering six areas:(a) ability to meet financial commitments; (b) adequacy offinancial reserves; (c) ability to help others financially;(d) optimism about the family's financial future (adequacyof insurance, financial benefits from employment, retirementincome, earning power, financial progress); and (e) effec-tive financial management practices. The reliability ofthis scale (Chronbach's alpha) is .85.InterviewBetween 4 and 5 months after program completion, thesemi-structured interviews were administered and a set oftrigger questions guided the interviews (Appendix E). Inorder to elicit the subjects' perceptions of changes inparental coping, family functioning and utilization ofresources since taking PEP, the interviews were as non-directive as possible. These interviews were conducted in46the subject's home or in a comfortable environment selectedby her or him. Each interview was 60 minutes in length andwas tape recorded. Following each interview, the audio taperecording was transcribed verbatim.Since the researcher was the data collection and inter-pretive instrument in this component of the study, thefindings were filtered through her perceptions and perspec-tives (LoBiondo-Woods et al., 1990). Therefore, instead ofusing "a priori" or preconceived ideas, about the outcomesof participating in the PEP, the practice of "bracketing"was employed (Munhall & Oiler, 1986) and the truth value ofthe proposed study was subject-oriented rather thanresearcher-defined (Sandelowski, 1986). Data was collectedand analyzed in the natural language of the subjects (Duffy,1985).Ethical Considerations This researcher ensured protection of the rights ofsubjects by:1. Obtaining approval from and adhering to the stan-dards set by the ethical screening committees of the Univer-sity of British Columbia, Children's Hospital, and theVancouver Public Health Department.2. Explaining to subjects the study's purpose, dur-ation, and expectations of informants.3. Advising subjects that participation was voluntaryand that they could withdraw from the study at any time and47that should they decided to withdraw, it would not jeopard-ize the present or future medical care of their child.4. Assuring subjects that confidentiality was ensured.These measures included: an assigned code to each subject'squestionnaire and interview transcript, data were onlyreviewed by the researcher and the thesis committee members;and audio-tapes were erased following transcription.5. Obtaining subjects written consent (Appendix C) andgiving them a copy.6. Explaining who to contact for answers to pertinentquestions about the research and subjects' rights.Data Analysis After the questionnaires were administered, responseswere compiled, coded, and placed on a computer file. Fol-lowing this, the study subjects' raw scores on parentalcoping, family functioning, and utilization of resourceswere compared to the normative range graphs for each tool.This comparison established the subjects' baseline levels oneach dependent variable.Descriptive statistics, including means, standarddeviations, and standard errors were calculated from theentered data using the Statistical Package for SocialSciences which is a data analysis and statistics package.Threats to the study's internal validity include his-tory, maturation, and repeat testing. In order to allay theconcerns about these threats, dependent t-tests were con-48ducted on the control group's (n=5) data.Six wife and husband pairs attended the PEP. In orderto avoid the confounds that could result from the attendingmarital dyads' influence and dependence on each other,rather from the intervention itself (Glass & Hopkins, 1984),statistics have been separately calculated for both female(n=20) and male (n=8) subjects. These statistics includedthe means, standard deviations, standard errors. Paired t-tests were done using these measures to determine the degreeof probability that the null hypotheses were supported(Knapp, 1985; Kaye, Bray, Gracely, & Levison, 1989; Roberts& Burke, 1989). The degree of risk of a type-I error wasset at alpha=<.05 and any result below this level was con-sidered significant and the statistical null hypothesis wasnot tenable.Since each experimental group contained only a smallnumber of fathers who attended with their wives, it was notpossible to conduct an ANOVA on these subjects (Glass andHopkins, 1984). Therefore, an ANOVA was conducted only onthe female subjects to determine whether the differencesamong the four experimental group means on each of the 3measured variables and, subsequently 20 patterns and sub-scales, were greater than would be expected from samplingerror alone.The transcripts of the audio tapes and their corres-ponding field notes were analyzed using deductive and in-49ductive content analysis (Field and Morse, 1985). Accordingto Waltz, Strickland, and Lenz (1991), the advantage of awell-delineated coding scheme is that it enhances the like-lihood that interpretive reliability will be achieved. Inorder to deductively develop the scheme for categorizing theinterview content, the researcher derived the categoriesfrom the conceptual framework and the three questionnaires(Waltz et al, 1991). Two experts, a pediatric nursingprofessor and a family physician, reviewed this scheme priorto its use and determined that it was valid. The scheme forcategorizing the interview content is depicted in AppendixF. Initially, during the analytic process, each transcriptwas read in its entirety in order to acquire a feeling forsubjects descriptions. Using the established scheme forcategorizing the data, the researcher surveyed the tran-scripts for words, phrases, descriptors, and terms centralto evaluating the program's outcomes from the subjects' per-spective. In addition to the deductive analytic procedure,a continuous inductive content analysis was performed on thedata. According to Waltz et al. (1991), inductive cat-egories are derived from the data themselves by identifyingclusters of similar data through a data-shuffling-and-sort-ing procedure. Following both the deductive and inductivedata categorizations, the two experts independently, andboth deductively and inductively, examined two of the ana-lyzed transcripts. During seperate sessions, each expert50compared and discussed their results with the researcheruntil consensus was reached. This process ensured facevalidity and intra-rater reliability of the researcher'sresults.According to Guba and Lincoln (1981), auditability isthe criterion of consistency or reliability in qualitativeresearch and is achieved when the researcher leaves a clearand appropriate "decision trail" from the study's beginningto its end (Sandelowski, 1986). An explicit decision trailsupports the method of data analysis and, therefore, thevalidity of the findings (Field et al., 1985). This audit-ability was initially determined by the thesis chairpersonand, then, by other readers of the study.According to Guba et al. (1981), the criterion of con-firmability is the freedom from bias in the research pro-cess. While the researcher was known to the author of thePEP, the researcher was not involved in the presentation ofthe program and was known to the program participants as theresearcher responsible for the program evaluation. Further-more, this confirmability was ensured by the establishmentof credibility, fittingness, and auditability (Younge &Stewin, 1988).SummaryThis chapter outlined the research design used in thisstudy. The sampling and data collection procedures, theintervention and variables, data collection tools, ethical51considerations, and the data analysis procedures were des-cribed. The following chapter presents a detailed dis-cussion of the study findings.52CHAPTER FOURFINDINGSFrom the quantitative analysis of the data, parentalcoping, family functioning, and utilization of resourcesincreased after taking the eight session PEP. The variablesin which change was ascertained differed for mothers andfathers. Moreover, the deductive content analysis of theinterview data demonstrated changes in coping and familyfunctioning that were not evident in the quantitative analy-sis. Further to these ancillary findings, the inductivecontent analysis identified parents perceptions of programvariables.The results of the analyses of the demographic ques-tionnaire, the pre and post tests, and the semi-structuredinterviews are presented in this chapter in two sections.First, the characteristics of the sample are delineated.Following this delineation, the findings that resulted fromthe analysis of the three pre/post questionnaires are out-lined and the information obtained from the semi-structuredinterviews is described.Characteristics of the Sample The characteristics of the sample are described underthree headings. These headings include: description ofexperimental and control groups; demographic, social, andeconomic characteristics; and description of interview sub-jects.53Description of Experimental and Control Groups The four experimental groups were comprised of 20mothers and 8 fathers of children with chronic conditions,who participated in four separate group presentations of thePEP.Two of the four experimental groups of parents wererecruited from the neurological clinic of an urban pediatrichospital. The first of the neuro-focus groups consisted of7 parents of 5 children, aged 2 1/2 to 4 1/2. The child-rens' diagnoses included: infantile spasms (2), hypertonicspasticity and multiple seizures, hypotonic cerebral palsywith multiple seizures, and an intractable seizure disorder.The parents of these children were from 25 to 38 years ofage. The second neurology clinic group of 6 parents had 6children, aged 2 to 18. These children had the followingdiagnoses: uncontrolled seizure disorder with developmentaldelays; Lennox Gastalt Syndrome; a head injury with diffi-cult epilepsy; an intractable seizure disorder; Down'ssyndrome with seizures, and a severe epilepsy. The parentsages ranged from 24 to 52.The third experimental group of 7 parents was selectedon a first come, first serve basis from an in-patient andout-patient pediatic hospital population. The 5 children,aged 3 1/2 to 18, of these parents had diagnoses that rangedfrom cerebral palsy and Duchene's muscular dystrophy, toepilepsy and phetylketonurea. These parents' ages ranged54from 26 to 60.The fourth experimental group of 8 parents was drawnfrom an in-school placement program within a communityhealth department. These parents had 7 children, aged 7 to20, whose diagnoses included autism, retinitis pigmatosawith an unknown muscle degenerative disease, spinal chordinjury (2), spina bifida, hemophilia and Down's syndrome,and a learning disability. The parents' age range was 32 to50.Of the 28 subjects in the experimental group, 12 con-sisted of wife and husband pairs and included three couplesin group 1, none in group 2, two in group 3, and one ingroup 4. Due to the small numbers in each group, the planto treat a couple as one parent and therefore, independent,in data gathering and analysis was aborted. As a result,each parent filled out a set of 3 pre and post programquestionnaires and adjustments were made to the statisticalanalysis of the data.The control group was drawn from the second neurologyclinic group who awaited the spring program presentation.While the anticipated number of controls was 10, the actualnumber who completed the pre- and post-program question-naires was 5. The control group attrition was due toparent's spring scheduling which did not allow them toparticipate as they had planned.The inclusion criteria delineated that subjects must55have experienced the diagnosis of their child's chroniccondition 6 months prior to taking the course. Therefore,the duration of the subjects' child's chronic conditionvaried from 8 months to 20 years.Given that subjects were required to attend five of theeight sessions, the attendance rates were high (80 to 100%).Moreover, the majority of parents attended all of thesessions. Absences were attributed to overcommittment andillness. The program attrition consisted of one neurologyclinic marital dyad who ceased coming after two sessions andthe reason for this withdrawal was unknown to thefacilitators.^Table I summarizes the description of theexperimental and control groups.Table I: Description of Control and Experimental GroupsGroup Sample Number of Childrens' AttendedNumber Size Childrenwith CCAge Range withSpouse1 7 5 2 1/2 to 34 1/22 6 6 2 to 18 03 7 5 3 1/2to 1824 8 7 7 to 20 1Control Sample Number of Childrens'Group Size Childrenwith CCAge Range2^5^5^2 1/2to 756Demographic, Social, and Economic Characteristics Demographic, social, and economic data were collectedfrom the subjects during the initial testing of each group.This data included their ethnic background, marital status,education, employment status, and income level.Most of the subjects were Caucasian (20). The remain-ing participant's ethnic background included Japanese (3),Italian (3), Brazilian (1), and Chinese (1).The majority (26) of subjects were married for periodsranging from 5 1/2 to 26 years. The 2 remaining parentswere separated from their spouses.All but one of the subjects had at least a high schooleducation. While over two thirds had grade 12 or some col-lege or university, less than one quarter of subjects werecollege or university graduates.Employment characteristics revealed that nearly twothirds of the subjects (64%) were employed. Only 2 sub-jects had combined incomes of under 20 thousand dollars.The remaining subjects combined incomes included: 20 - 40thousand (34%), 41 - 60 thousand (48%), and above 60 thou-sand (11%).Description of the Interview Subjects The qualitative portion of this study consisted of 9semi-structured interviews. Three members from each of theexperimental groups 1, 3, and 4 were selected using a randomnumber table. All selected participants consented to a one57hour interview.Quantitative and Qualitative Findings The results obtained from the quantitative data analy-sis are reported under the three research questions. First,did program participation significantly increase parentalcoping? The second question asked: do program participantsdemonstrate a significant improvement in family functioning?Finally, did program participation signifi-cantly increaseparental use of resources? From the continuous inductivecontent analysis of the interview data, a fourth category,program variables evolved from within the interview con-tent.When compared to the normative range graphs for eachtool, the subjects' baseline scores showed that the subjectswere at or above the mid-range for each of the 3 dependentvariables.During statistical analysis and the presentation ofthe results abbreviations were used for the tools and theirpatterns/subscales. These abbreviations and their corres-ponding terms include: CHIP, Coping Health Inventory forParents; FAM, Family; SUPP, Support; MED, Medicine; FES,Family Environment Scale; C, Cohesion; EX, Expressiveness;CON, Conflict; IND, Independence; AO, Achievement Orien-tation; ICO, Intellectual Cultural Orientation; ARO, ActiveRecreational Orientation; MRE, Moral-Religious Empasis; ORG,Organization; CTL, Control; FIRM, Family Inventory of58Resources for Management; FS, Family Strengths 1 (Esteem andCommunication); RS, Family Strengths 2 (Mastery and Health);SS, Extended Family Social Support; SFS, Sources of Finan-cial Support; and FIRM, Total Score (FS + RS + SS + SFS).In addition, the corresponding values of the means for eachtest are found in Appendices G, H, and I.The paired t-tests, conducted on the control group'sdata, showed a level of significance of p =>.05 (see TableII). Therefore, any change in perceptions on each of the 3dependent variables was likely due to chance. Although thisnon-significant result allayed concerns about threats to thestudy's internal validity, the small number of control sub-jects lessened the power of the statistical test to showsignificant change.59Table II: Control Group's Paired t-test Results for CHIP,FES, and FIRMTool Pattern/SubscaleSD SE T-valueCHIP FAM 5.495 2.458 .73 .275SUPP 5.050 2.258 1.33 .127MED 1.949 .872 .46 .335FES C .707 .316 .00 .500EX 1.140 .510 .78 .238CON 1.095 .490 -.41 .352IO 1.000 .447 .00 .500AO -.400 .548 -1.63 .089ICO .000 .640 .00 .500ARO 1.304 .583 .34 .374MRE 2.000 .894 .00 .500ORG 1.304 .583 1.37 .121CTL -.837 .545 -1.45 .098FIRM SFS 1.414 .632 .00 .500RS 3.209 1.435 1.81 .072FS 3.507 1.568 .38 .361SS 2.793 1.249 .32 .382FIRM 8.899 3.980 .95 .197The null hypothesis for each ANOVA was that the meansof dependent variables of the 4 groups of mothers were notdifferent. The results supported the null hypothesis sincep=>.05 (see Table III). Since this result indicated thatthe experimental groups were similar on the 3 variables,the concern of confounds within the groups are diminished.60Table III: ANOVA on Differences Between Group Means forCHIP, FES, and FIRM ScoresTool Pattern/ F dfSubscaleCHIP FAM .841 3,16 .491SUPP .546 3,16 .658MED .052 3,16 .984FES C .723 3,16 .553EX 2.835 3,16 .071IND 1.347 3,16 .294AO 1.496 3,16 .253ICO 1.483 3,16 .257ARO 1.404 3,16 .278MRE .203 3,16 .893CTL .686 3,16 .574ORG .197 3,16 .897CON .075 3,16 .973FIRM SFS .607 3,16 .620FS .531 3,16 .667RS .995 3,16 .420SS .409 3,16 .749FIRM .354 3,16 .787For each research question, the quantitative findingswill precede the qualitative data and the results for allfemale subjects will be presented first, followed by theresults for male subjects. Further, when the qualitativedata is presented, the subject's code number and the quote'sline number will be placed in brackets following each quote.Research Question I: Did program participation significantlyincrease parental coping? Parental coping was evaluated using the CHIP inventoryquestionnaire and the semistructured interviews. The CHIP61questionnaire assessed the parents' perceptions of theirresponse to the management of family life when they have achild member who has a chronic condition. Three copingpatterns were measured using these assessment methods.These coping patterns included: behaviors that focus onstrengthening family life and relationships and the parentsoutlook on life with the child who has the chronic condition(FAM); social support, self esteem, and psychological stab-ility (SUPP); and understanding of the medical situationthrough communication with other parents and consultationwith medical staff (MED).Coping Pattern 1 The null hypothesis concerned with the mothers' per-ceptions of the first coping pattern, FAM, was supported ata level of p = >.05 (see Table IV). As a result, the dif-ferences in their perceptions on FAM were not significantand are likely due to chance.Table IV: Mothers' CHIP Paired t-test ResultsTool^Pattern^SD^SE^T valueCHIP^FAM^4.837^1.082^-1.06^.150SUPP 7.015 1.569 -2.26 .018*MED^3.133^.701^-2.35^.014** = significant differenceData from the interviews with the mothers, however,clearly indicated a change in maternal coping with theirchild's chronic condition. This change was one of sharing62the burden as opposed to taking total responsibility for thechild's care. Sharing the burden was documented in five ofthe six interviews. These mothers elaborated:Funny how, a lot of responsibility, I finally realize,I don't have to do it all. Somebody else can share (5,344).But to know that I don't always have to solve everybodyelse's problem. I'm not thinking "I have to do itall." And that was the other person has to be made totake their responsibilities ... that is something thatI have changed and that is being carried on with (27,885).Before, I just gave my, almost my whole life, to mydaughter and my family. ... you have to take the timeto do what you like to do. I don't need to do every-thing. I can think of ways to rest my responsibility.Somebody else can do it (38, 233 & 654).One thing I really did get out of it, taking responsi-bility for other people all the time. What they say,what they do, taking it on yourself. ... not alwaystrying to save everybody. I know I was doing that allthe time. Rescue, rescue, rescue (39, 604).I've tried to think about myself more since doing theprogram. Just because that's what I feel right now isthe best for J. The change would probably be that I'mmore ready now to let go (40, 551).One young mother spoke at great length of how she was train-ing a friend to be her daughter's special care worker. Inaddition, she was educating her brother, her sister-in-law,and her parents so that she could be relieved of some of theresponsibility for her child's care.In contrast to the mothers' outcome, the results forfathers indicated that the null hypothesis regarding FAM(p=.006) was not tenable (see Tables V). This finding meantthat fathers showed a significant change in the FAM pattern63of coping.Table V: Fathers' CHIP Paired t-test ResultsTool^Pattern^SD^SE^T valueCHIP^FAM^4.175^1.476^-3.39^.006*SUPP 6.198 2.191 -.06 .478MED^1.389^.491^-3.56^.004** = significant differenceThis change was in the area of the father's outlook onlife and illness toward one of family integration was eluci-dated in the following interview excerpts.It made me reevaluate how I do everything. How I actwith my sons and my wife. ... I've noticed that I'vedeveloped much more self-awareness. ... It's made melook back at myself and not like what I see. I now tryto turn off work. I try not to be as busy and preoc-cupied. ...I try to relieve her from some of thestresses (2, 473).I am being more caring ... more considerate of what'sgoing on in the household, not just take things forgranted. I'm prepared to get in ^in it and enjoyit rather than just feel it's another task that has tobe done. ... the disability is not so much a concernas it had been, prior to the course. He's more my son,than my son with a disability (25, 132).Due to job demands and his work ethic, the third father,finds it impossible to be home to assist his family. As aresult of taking the course, this man has hired a live-inhousekeeper to help his wife care for their daughter.Coping Pattern 2 The results for mothers indicated that the null hypoth-eses regarding SUPP (p=.018) coping pattern could not besupported (see Table IV). This result indicated that the64mothers' perception of SUPP showed a significant changeafter taking the program, a change not likely due to chance.In accordance with the CHIP questionnaire, the contentanalysis demonstrated that mothers had changed their per-ception of support. This change had the following threedimensions.a) Maintaining sense of own well being through social relationships.The first dimension of this variable was maintainingsense of own well being through social relationships. While5 of the 6 mothers responded by saying that this programincreased their sense of social support, one mother poign-antly expressed:I wanted to share things. A lot of it is that I justhaven't had anybody to talk to. That's one thing that'sdifficult about moving away from a small town to whereyou don't know anybody. You can talk with your friendsand they really don't know what your going through.I've missed not having a support group or something(40, 528).Moreover, five of the six mothers expressed the need for asupport group after program completion. As one woman said:I think this is something that could turn into a sup-port group. But, the thing is that people always wantparents to run support groups and I think that when youget alot of stressed out parents, it's just not goingto happen. So what I felt came out of it was a needfor support groups run by people in the community, likethe public health nurses, to see the need and organizesomething like that for parents. They offered thespace (for the PEP) and the leadership and just thatprofessional side to it. That parents aren't expectedto put out again (39, 1479).65b) Maintaining sense of well being through involvement in activities that increase self-esteem.The second dimension of change in coping was involve-ment in activities that increase self-esteem. Since takingthe course, of the six women interviewed one has turned ahobby into a home business, one has returned to a job shehad worked at before for years, and one has returned toschool to take a nurses aid course.c) Maintaining sense of own well being through managingpsychological tensions.The third dimension of this change in coping was manag-ing psychological tensions. All six of the mothersresponded to this aspect of the interview and identifiedvarious ways in which they were now managing anxiety andstress. As one mother of two young disabled childrenexplained:Instead of flying off the handle, I can be a little bitmore logical and calm. ... I put more thought into howI'm going to react which keeps me from reacting sponta-neously and blurting anger. Yeah, frustration andstress that was coming out as anger a lot (5, 118).In addition, this mother made the following statement abouta strategy she used to manage tensions.I've always done it (sewing) but I just haven't recog-nized it as a way to cope and to manage the stress. Ijust never thought of it as a method. I just thought Iwas being lazy. Now I realize that it's not so bad (5,387).While all six mothers identified strategies that they nowuse to relieve stress, two subjects disclosed the following66strategies.Everyone handled things different. Some wrote inbooks, some talked, some cried. Eventually, hopefully,all of us, did all those things. Some of us mightnever have done any of those things until just recently(27, 672).Hearing how other people cope. For instance, one womanwent into the bathroom and she spent two hours in thebathroom and she had a bath and she cared for herself.I came home and I did try it. I do use that on occa-sion now. ... I'm more aware of coping skills and I'mon the lookout for them now. Whereas, I wasn't before(23, 280).Another strategy for managing tensions that was voiced by 4of the mothers was the use of humour to relieve stress. Astwo of them put it:... the humor helps. It really does. That helps youto dissolve those harsh feelings (23, 736).Laughing about some of the crazy things that seizurescreate in your life that other people don't have a clue(8, 45).Moreover, four of the six mothers found that the action ofrecognizing their tension was in and of itself helpful.Three of them said:That's one thing that I got from the course is toacknowledge that I'm stressed! That I'm not perfect,super-mom. That I am stressed. So I can say, "It'snot a good time right now." (8, 591).I realized I'm not as strong as I thought. ... all of asudden when the bottom falls out, you have to take astep back, regroup yourself and then work forward.Number one last year was me getting myself backtogether (27, 92).... recognizing stress and identifying when I'm gettingto that point where I have to do something like go out.... Now I'm able to say " I really feel that's betweenyou and so and so, and you'll have to talk to J aboutit." Whereas, I never would have done that before. Iwould have got all involved. Yes, stress myself right67out. ... There's nothing I can do to change that(stress). So, it was more dealing with it than chang-ing it (39, 652).One mother of an older totally dependent child mentionedthat an analogy used by a fellow PEP participant helped herin her most desperate moments.One thing that this other woman said that stuck with meand I laughed when she said it and I could relate to itso well. She said, "I feel like a balloon. I'm allblown up and I, someone lets the steam out and I flyaround the room. Then I land in a corner like a limpblob." I thought that that was a really good analogy.I think of that every now and then. That's one thingthat's really stuck with me (39, 1052).Unlike the mothers' findings, the hypothesis concernedwith the fathers' perception of the SUPP coping pattern wassupported at a level of p = >.05 (See Table V). This resultsuggested that any measure of difference was probably due tochance. This quantitative finding was upheld when theresults of the content analysis were tabulated.Coping Pattern 3 The third coping pattern on the CHIP questionnaire,MED, measured parental mastering of information needed tocare for the child at home. The paired t-tests determinedthat the hypothesis for both the mothers' (p=.0145) (seeTable IV) and fathers' (p=.004) (see Table V) on the MEDpattern was not tenable. This finding means that themothers and fathers showed a significant change in theirperceptions and the parents' ability to cope with familylife on the MED variable improved after the intervention.The results from the content analysis of the 9 inter-68views concurred with and elaborated on the quantitativefindings in the following manner. According to the CHIPquestionnaire, mastery of information needed to care for thechild at home was obtained through communication with par-ents of children with chronic conditions and consultationwith health care professionals.All nine interview subjects resoundingly expressedopinions that indicated they had increased their abilitiesto care for their child at home through communication withthe other PEP participants. One father voiced:I came in thinking... that the people who were in thegroup didn't have anything to offer. Everytime I went,I found there was something that they did actuallyoffer me, selfishly you know (25, 277).One mother shared that:It gave us some sort of insight as to what may becoming up in the future. Even though the disabilitiesmay be different, the emotional and psychological sideseems to be the same. ... Different suggestions, youknow. It might not be something you instinctivelywould do but you can retrain yourself to do otherthings. Maybe one of those other things might be thething that would work. So it was the group input ofhow everybody does different things (27, 651).In addition, the subjects shared specific examples of tipsthey exchanged that many parents didn't know. These tipsincluded writing off diaper receipts, income tax, propertytax, and claiming disability. Three mothers elaboratedsaying:This course was wonderful for information. I'velearned about videos to help with speech, I've learnedabout the Exceptional Parent magazine, hundreds ofthings, music therapy (23, 1165).69I think, disabled children, they have their limitedability. If there is a suggestion for their parentsthat they can be better, like exercise or which placeis good for them. Practical things. Dance course forspecial needs. This helps a lot (38, 1070).I'm constantly in a state of frustration. But I thinkgoing and talking about it with people does helpbecause they don't say, "Oh don't be silly." They tryand give you some ideas. Sometimes it's somethingyou've never thought of. ... like hiring somebody, orplanning a menu for a week, only going shopping onthese days, trying to organize your life (39, 982).One common aspect of caring for their children was dealingwith doctors. One mother expressed:Dealing with doctors. ... Everyone has the same com-plaints. We were brainstorming because one of thegirls had a problem. ... So she wrote a letter andshe'll probably have the problem solved (23,224).Finally, one mother's statement echoed the sentimentsexpressed by all the other subjects:I really enjoyed being able to come together as a groupof parents who had children with disabilities. Ihaven't ever had that opportunity. Just to understandthat even though our disabilities varied, but there wasa lot of similar feeling that we had. I guess the wordvalidation came up quite a few times. I just reallyenjoyed the fact that you could sit with other parentsand understand. ... The information that was sharedthere was always pertinent to what was going on in ourlives (40, 5).Seven of the nine interviewed subjects expressed theview that health care professionals were very important inenabling them to care for their child at home. These pro-fessionals included: the PEP facilitators, a social worker,an occupational therapist, a special education therapist,and their doctors. The major theme with regards to themedical system was one of the development of skills to70better negotiate with the health care system. One fatherexpressed the view that:We've changed that much that we can deal with every onein the system. ... we've consulted with the doctors ...we've agreed that (son) be operated on here ...because no one knows (him) better than the staff here(2, 105).To illustrate this concern further, one mother said:I've been more assertive with the doctors on one occa-sion since taking the course. ... I just think withtime and thought that I might be able to put some ofthe knowledge into dealing with the professionals a bitmore. Being more assertive. Saying "this is what Iwant done and I want to see it done." (5, 898)Despite these positive changes in assertion, several sub-jects talked of a lack of communication with health careprofessionals. As one mother, of a child with an intrac-table seizure disorder who was very much involved with manyreadmissions to the hospital, identified how her sense ofmastery of information could be enhanced. She said:I would like to see a nurse liaison between parents andthe staff and doctors. That would be a really goodthing to have because when you have problems or you cansee something needs to be changed or could be changedfor the better, but you just have no one to talk to.It would be a big help, especially for people whosechildren have chronic problems and they're constantlyin and out of hospital (23, 205).SummaryTo summarize, both parents' perceptions of their abil-ity to cope increased. For mothers, this increase in copingwas in maintaining their sense of well being and masteringinformation needed to care for their child at home. Forfathers, their outlook on family life and their mastery of71information needed to care their child at home improvedafter participation in the PEP. In addition to these ques-tionnaire results, the analysis of interview data revealedthat mothers were sharing the burden of caring for theirchild with the chronic condition.Research Question II: Do program participants demonstrate a significant improvement in family functioning?The FES measured the subjects perceptions of theirconjugal or nuclear family environments on the ten FESsubscales. These subscales included: cohesion, expressive-ness, conflict, independence, achievement orientation,intellectual-cultural orientation, active-recreationalorientation, moral-religious emphasis, organization, andcontrol. In order to answer this research question usingthe FES, the null hypothesis, that there would be no differ-ence due to the intervention, on each of these ten subscaleswas tested. A paired t-test was used to test each hypoth-esis separately for mothers and fathers.For the mothers, nine of these null hypotheses weresupported at the level of p=>.05 (see Table VI). Theseresults indicated that the mothers' perceptions of thesevariables was unchanged.However, the first null hypothesis concerned withcohesion was rejected (p=.0275) (see Table VI). Therefore,the mothers' perception of cohesion showed a significantchange post-intervention.72Table VI: Mothers' FES Paired t-test ResultsTool Subscale SD SE T valueFES C 1.314 .294 -2.04 .027*EX 1.789 .400 -1.50 .075CON 1.806 .404 .00 .500IND 1.348 .302 -.500 .312AO 1.261 .282 -1.06 .150ICO 1.348 .302 -.500 .312ARO 1.317 .294 -1.53 .071MRE 1.294 .289 .35 .366ORG 1.164 .260 -.96 .174CTL 1.468 .328 -.15 .440* = significant differenceEach of the interview subjects were married. Five ofthe six mother's expressed the opinion that their maritalrelationship was stronger as a result of the course. Twomothers explained:When you take such a close look through that course atwhat it means to have a child and the stresses, I thinkthat that's strengthened our commitment of stayingtogether and keeping the family as a unit (8, 768).We're more unified. ... Thats one thing I learned fromthe course, that we really need time together (23,1047).The fathers' FES results differed from the mothers.The null hypotheses concerned with the cohesion, expressive-ness, and independence were rejected. The probabilityvalues for these subscales were: cohesion (p =.032); expres-siveness (p=.030) ; and independence (p =.019) (see TableVII). Therefore, the fathers' perceptions on these sub-scales altered significantly after taking the program.However, the results on the 7 remaining FES subscales73supported the null hypotheses at probability levels of p =>.05 (see Table VII). These results meant that the fathers'perception on these subscales did not significantly changeafter taking the program.Table VII: Fathers' FES Paired t-test ResultsTool Subscale SD SE T valueFES C 1.126 .398 -2.20 .032*EX 1.581 .559 -2.24 .030*CON 1.061 .375 1.00 .175IND 1.246 .441 -2.55 .019*AO .916 .324 -1.16 .142ICO 1.506 .532 -.70 .252ARO 1.604 .567 .00 .500MRE 1.753 .620 -.40 .349ORG 1.753 .620 -.40 .500CTL 1.195 .423 1.18 .137* = significant differenceWith the exception of the questions that assessed the sub-scale concerned with active recreational orientation, thedeductive content analysis results concurred with the quali-tative results.Two of the three interviewed fathers confirmed thattheir marital relationships were positively altered sincetaking the program. One of these fathers elaborated saying:I'm more considerate of my spouse. ... I'm very fortu-nate to have (her) as my wife. Sometimes I lose trackof that. I'm focusing more. ... We want to spend timetogether. Whereas, before, we may not have been asinterested (25, 554).Of the three fathers interviewed, two described them-selves as more expressive since taking the program. They74explained by verbalizing:I'm more patient with (my wife) and understand herpoint of view. ... I'm listening to people and saying,instead of ignoring it, I appreciate what she's saying.I find that I'm prepared to put a lot of other thingsaside in order to be able to discuss things (25, 33).I really do attempt to listen more now. Before my mindwas always busy, and she would talk to me and I wouldnod and say "yeah, yeah." Now I really make more of aneffort to listen to (my wife) (2, 290).Two mothers, who attended the program with their husbands,reported that:There was stuff that came out that I didn't know thathe was feeling. I thought he was really cold heartedor he just didn't care... But he actually did. It justwouldn't have come out otherwise (23, 962).What I wanted from it (PEP) for him was the talking.... You can't keep all this stuff inside. That's whathe tended to do. ... So the actual bringing up of a lotof these issues, and he did. ... The thing that sticksout is the fact that my husband was participating andwas talking in all of them (PEP sessions) which wasgood (27, 625).An ancillary finding that evolved from the deductiveanalysis of the interview data was on the active-recrea-tional subscale of the FES. Eight of the nine interviewedparents noted changes in their recreational activitiesfollowing the PEP. These included changes with both theirspouses and children.Fathers and mothers who took the course portrayed thefollowing changes in their spousal recreational activity.Every Monday night we go somewhere as a managementmethod (5, 768).Now, every Thursday night, in fact last night we wentto a movie together. Once a week at least, go outtogether without kids (25, 542).75Two couples had just recently been away for a weekendtogether. As one mother elaborated:I've just come back from a vacation in Palm Springs.Which I could never have done before (39, 1752).Five of the parents described activities that they partici-pated in post intervention. These included:We're spending more time doing family things outdoors,such as riding bikes. We bought a pull cart for (son)and now (other son) pulls him and feels more a part ofthings. Besides riding bikes, we all go for walks inthe park and that (2, 411).You have to make a special effort to get kids over.So, we just recently organized a little group of peoplethat we've touched over the years. ... A group ofpeople that we meet on a Sunday afternoon. Two Sundaysago we were over at one of the houses, just to shareexperiences and talk, let the kids to know each otherand play. We've got a picnic planned in April... So,that's working out (25, 624).We're getting them (two of the PEP's children) involvedin an at home Karate program. (son) thinks he's BruceLee. In his mind he's normal. If this is a thing thatnormal kids do, let's do it (27, 1519).At the community centre, there's a dancing program thatstarts from April. (daughter) can do it on her own.She likes to dance. I'll send her to the dancing pro-gram (38, 920).SummaryTo summarize the findings of the FES questionnaire,overall family functioning had improved post-intervention.Again, mothers and fathers differed on the variables inwhich change was noticed. While mothers increased in familycohesion, fathers increased in their perceptions of familycohesion, expressiveness, and independence. An additionalfinding arising from the interview data showed that both76mother's and father's active recreational orientationincreased after participating in the program.Research Question III: Did program participation signifi-cantly increase parental use of resources? The FIRM tool was used to assess the parents' percep-tions of what social, psychological, community and financialresources they have available to them in the management offamily life. This tool measured 5 subscales pertaining tofamily resources. These subscales scales included: FamilyStrengths 1 - esteem and communication, Family Strengths 2 -mastery and health, extended family social support, sourcesof financial support, and a total FIRM result. The FIRMresult was calculated by adding the values on FamilyStengths 1, Family Strengths 2, financial well being, andextended family support. The null hypotheses used to testeach of these 5 scales stated that there would be no differ-ence pre- and post intervention. Paired t-tests were usedto test each of these hypotheses.On the basis of the mothers' results the null hypoth-eses of three scales were rejected. These scales and theirprobability levels included: Family Strengths 1 (p =.007);Family Strengths 2 (p =.001); and FIRM (p = .003) (see TableVIII). Therefore, the mothers' perceptions of esteem andcommunication, mastery and health, and total repertoire ofresources showed significant improvement after taking theprogram.77Table VIII: Mothers' FIRM Paired t-test ResultsTool^Subscale^SD^SE^T valueFIRM^SFS^1.957^.438^-.91^.186RS 2.732 .611 -3.44 .001*FS^3.144^.703^-2.70^.007*SS 2.342 .524 -1.34 .098FIRM^6.485^1.45^-3.10^.003** = significant differenceThe results from the content analysis of the interviewdata supported the quantitative results. Two scales, FamilyStrengths 1 and 2, were elaborated in the following excerptsfrom the semistructured interviews.Family Strengths 1: Esteem and communication.Six dimensions of this scale were assessed during thecontent analysis of the interview data. These dimensionsincluded: family esteem, communication, mutual assistance,optimism, problem solving ability, and encouragement ofautonomy.The change in the family esteem dimension was evidentin the mothers' interviews. One mother who attended the PEPwith her husband illustrated this dimension when sheexpressed:It (his participation in the sessions) added to myrespect for him. ... I think it can make a big differ-ence to your marriage, to your relationship with yourkids. It's made a big difference for us (23, 546).From the deductive content analysis, a change in themothers' communication abilities was evident. Empathy,78listening, and verbal communication with spouses, children,family members, and friends were aspects of this dimensionthat had changed. First, one mother described greaterempathy with all persons in her life as she explained:Things are flowing a little easier. Instead of beingchopped conversations you start with a point, you gothrough it and then you can go on to the next point.... Along with empathy and conversation, if somebody'sangry or upset about something or having some sort offeelings, I can let them know that I know. Like "youmust be feeling angry, that's OK." .... which is some-thing that I never used to do. I never used to put anythought to it (5, 32).Another mother described the following change in her under-standing of her parents and later in the interview explainedsimilar changes in how she dealt with friends and herbrother and sister-in-law.It helped me recognize their discomfort, how uncomfort-able they are with the situation. And their reactionsare their way of coping with it. I didn't realizethis. So it helped me be a lot more understandingtowards their views. And then I was able to approachit at a much slower rate, I simplified my explanations.Just a few weeks ago they were here. I got a video(viewed at the PEP on seizure disorders) and we wentout. ... When we got home, I said "What did you think?"We actually talked for half an hour on the subject(difficult epilepsy) (23, 166).A greater ability to listen to others was evident in themothers' interviews. One mother, who attended the PEPwithout her husband, expounded:Be didn't figure out why, but in retrospect, it came upin a discussion in a couple's support group about lis-tening to what the other person is saying and not jump-ing down their back because they reacted this way, butto acknowledge the way they're feeling. (husband) "Oh,so that's why we're talking so much more is it?" Youknow, it was like "Oh, that's why." It hadn't lit uphis light but obviously he noticed it, subconsciously79(5, 729).Another mother, who attended with her spouse, describedtheir communications the evening of each session. Thissentiment was reiterated by all the other coupled PEP par-ticipants.... Driving home we would find ourselves talking aboutwhat we went over that night. It's just him and I. Wecan listen. We hear what the other one is saying (27,717).This same mother went on to talk about her relationship withher able bodied daughter.I think (daughter) is coming to me more now. I'vealways hoped I'd be a mom she felt she could come to(27, 1484).Another mother, who was concerned about her daughter who wasa sibling of a spinal injured son, explained the change shehas noticed.(in the sessions) we discussed different ways you canhave conversations with people to make them feel likeyou're listening even if you're not going to agree withwhat they want. I've been trying to do that with mydaughter. It does work but it's not perfect ... Istill react when I'm stressed (39, 577).Altered verbal communication was evident in the interviewtranscripts. With reference to their spouses, two mothersmentioned:Our communication is much better. Much, much better(23, 3430).This course helped us to communicate with each other.We (she and her husband) talk, that is the best thingthat we talk, we talk a lot. We show our feelings (38,707).In dealing with her disabled son, one mother elaborated on80her communication:S: I've had to make it clear to (son) that he needs totell me specifically what he wants and doesn't. Heknows what he wants, and I can help him better. ... SoI think our communication skills have improved (40,758).Improved problem solving dimension of Family Stengths 1was a common theme throughout the mothers interviews. Onemother described her problem solving related to a medicaltest her daughter, with intractable seizures, was going for:I don't know anything about this. It's radioactive.So I looked in my manual (PEP). I followed the problemsolving steps. What they said to do about gatheringinformation. Who to talk to. I made a list of who Ishould talk to. And, I did. But that made all thedifference in the world. By the time I went in for thetest, I was prepared for it. I had no fears. Nothing.I had gotten information from everywhere that I poss-ibly could. There was no written information on it andthat was the major problem. But, that (problem solvingprocess) made the difference (23, 654).Another mother depicted the following situation:Somebody who is angry in the family, has some frustra-tion and we find out what is the real reason thatcaused that doubt. There is one thing, if a personneeds somebody's help, a person needs to help us, weneed to explain, just to ask them to follow the steps,cause there are steps, it seems quite helpful (38, 48).Only two mothers specifically mentioned that they encouragedgreater autonomy. First, one mother explained the followingalteration in her spousal relationship.What has changed is rather than me automatically think-ing of the answer, so what do you think, what should wedo?" "OK, well I just can't handle this right now, youfigure it out, then let me know what you think weshould do." ...I think that by me trying to learn todelegate more. Not delegating and giving instructionsas well has helped (27, 769).One mother described the changes she had noticed in her81relationships with her children, her son's attendants, andher spouse.What has changed is that if two people in the house arehaving a disagreement, just letting it be between themand not getting involved. Just saying, "well that'syour relationship with that person." (39, 609).Family Strengths 2: Mastery and healthThe second FIRM scale that showed a significantincrease (p=.001) post-intervention was Family Strengths 2:mastery and health. This scale had three dimensions whichwere measured by the FES and were illustrated through thedeductive content analysis of the interview data. Thesedimensions included: mastery over family outcomes; familymutuality; and physical and emotional health. While theinterviews were less explicit on these dimensions, severalmothers did describe changes that they had noticed aftercompleting the PEP.One mother spoke about her sense of helplessness beforetaking the program and subsequent mastery over family out-comes. When interviewed, she said:It felt good to be doing something about her becauseyou always feel like the system does this to you, orthe seizures do this to you, or the doctors. You don'thave a lot of control. So it felt good to be doingsomething positive about her disability. Even if itwas educating myself. So I was looking forward to thattoo, actually taking some action on something. Other-wise, I just feel like I have no control over anything.So that was part of it. Taking some action (8, 466).Similarly, another mother added:I felt more in control of the situation. In control ofwhatever I could be in control of. We don't knowwhat's going to happen, we're not in control of that.82It doesn't scare me any more (23, 656).Three aspects of family mutuality were assessed. Theseaspects encompassed emotional support, togetherness, andcooperation.First, emotional support was perceived by mothers asimportant and was altered after taking the PEP. This per-ception was evident as one mother described the importanceto her:I really do believe that mothers handle things differ-ently than dads. ... In most situations, I find thatthe mom is the caregiver, the emotional supporter ofthe family. ... The moms, a lot of time, just want thatemotional support from somebody else for them to cry ontheir shoulder. To say "why me? Poor us." Yet, whetheror not you do anything different might not happen. Butjust having someone there that might empathize withyou. And (husband) is more there for me now (27, 581).Another mother elaborated on the change in emotional supportthat she was aware of:Cause he'll, on occasion now, "I think you're prettystressed out about this.", or whatever. He's actuallyable to identify. ...he's much better at saying "thatreally bugged you didn't it." So that I think it'sdefinitely good on both our parts. It's made a bigdifference on not reaching that boiling point. Werealize that it doesn't have to be about (daughter withchronic condition), it can be about other things (23,891).Second, the togetherness aspect of family mutuality wasmentioned in the mothers' interviews often. Three motherselaborated on their spousal relationships.So they (her two children) go to separate homes everythird weekend and we have the weekend off to do what-ever we want to do. Stay home, do nothing, busy our-selves until we're exhausted (5, 824).So he (husband) actually took the initiative to go over83there (next door) and say "we need to get out and doyou sit?" And she's been really good and really avail-able (8, 844).I'm really beginning to realize that we, as a couple,need to have some time for ourselves too (40, 594).Another mother talked about her relationship with the sib-ling of her child with a chronic condition:I'm trying to find more mom/daughter time. I'm tryingto find times to sit there and talk to her just abouther books and her school (27, 1394).Lastly, the cooperation dimension of family mutualitywas reported as changed by the mothers. The mothers askedfor more cooperation from others after taking the PEP. Asthe mother of a totally dependent older child was able toexpress to her husband:Hey, I'm not the attendant here.", as he was about toleave after getting our son transferred to bed (son'sattendant hadn't come in that evening). "We're theparent's together of (child) and you help by doing..."This was something I would never have done, I surprisedmyself (39, 1764).Two other mothers described differences they had experi-enced:When somebody else is at home, then I cop out of a lotof things. "Oh, why don't you run upstairs and dothat" or you feed the kids and I'll do the laundry."And I don't feel bad (5, 339).I can't get hyped out and handle 10 of them (tasks).You (husband) can at least take a couple here and fig-ure out what you're going to do. ... But it's working.And so, it's taking one more thing off of me (27, 846).Another aspect of cooperation mentioned by mothers was thatbetween siblings. As one mother expressed:I try to make him (child with chronic condition) help84more so she's (sister) not feeling that she has to doeverything (27, 325).The results on the remaining 2 scales supported theirnull hypotheses at probability levels of >.05 (see TableVIII). These results suggested that any change in themothers' perceptions of these scales could be attributed tochance.In contrast to the mothers' FIRM findings, the fathers'results supported the null hypothesis on all five scales at> 5% significance levels (see Table IX). These findingssuggested that any alteration in the fathers' perceptions oftheir family's utilization resources was likely due tochance. This result was upheld throughout the deductivecontent analysis of the fathers' interviews.Table IX: Fathers' FIRM Paired t-tests ResultsTool^Subscale^SD^SE^T valueFIRM^SFS^2.765^.977^-.77^.234RS 3.462 1.224 -1.33 .113FS^5.425^1.918^-.26^.401SS 4.803 1.698 .74 .243FIRM^15.737^5.564^-.40^.349Summary While mothers increased in their perception of utiliz-ation of resources, fathers did not perceive a change intheir use of resources after participating in the program.85Program Variables The following program variables were identified asimportant by the majority of parents in their interviews:timing of the group in relation to the timing of the child'sdiagnosis; attending the group as a couple; and compositionof the group.Each of the interview subjects had strong views aboutthe timing of the PEP. One mother of 2 totally dependentyoungsters emphatically stated the views expressed by all 9interview subjects.I think it would have helped a lot more if I had knownthis information 2 years ago, when I really needed somedirection of how to do it, how to live it. Up untilthis course, I was sort of stumbling through and sortof hit and miss. Whereas, if you're ready for some-thing like this early enough, and it's there, to use, Ithink people could gain an awful lot from it. I thinkthe first months are too overwhelming. People aredealing with their personal feelings like "God, thisreally sucks, this is my family, it stinks, it's notfair." But if we'd known about it maybe 6 months to ayear after (daughter) was diagnosed. It depends on theperson. But if it was something that was on-going,like every 6 months you started a new one, like in theSpring and in the Fall, that would give a family theopportunity, when they were ready. I think it shouldbe an ongoing thing in the community so that people cansnowball and hopscotch their way through the stages.In that way there are not too many people left foreverand ever who could have really used it but it was neverthere (5, 1208).The interviewed parents unanimously expressed theopinion that an appropriate time for taking the PEP was sixmonths to one year after the initial diagnosis of a child'schronic condition. Moreover, all these parents believedthat the PEP should be available to all parents who have86received this diagnosis.A second program variable that was identified by par-ents as important was attending the program as a couple.The interview subjects who did not attend with their spouseunanimously expounded the opinion that they felt that, ifmarried, spouses should attend the PEP. As one marriedmother who attended the program without her husband said:The fact that I took it alone and (husband) didn't.That made a big difference. When I'd come home and saywe discussed this and this. He'd go "Yeh, Yeh." Hedidn't get the full, he was not really involved. Imean, if one parent can't take it, then I'd say it'sbetter than not taking it at all (23, 416).Two mothers and one father who attended with their spousesexpressed the following opinions:I think you get more than double by having both spousesthere because on the way home, you talk about what wenton in the class. So, you're getting an extra half hourof discussion on each thing. I think that a big plusis making the time for both spouses to go (8, 1090).It would be beneficial to make the first two sessionson dealing with aspects of stress and personal feelingscompulsory for couples. Then from there you coulddecide whether you wanted to continue coming. But atleast you deal with a couple of sessions together (43,740).I think it's good for both people to hear the informa-tion. It did me a lot of good to go, but it's notgoing to necessarily help my relationship if he hadn'theard it. So I think it would be really helpful if thenext time it was sort of stressed that it would bereally great if you could both go (39, 1514).A third variable discussed by a number of participantswas the composition of the group in relation to the categoryof disease their child had. While all the interview sub-jects believed that the non-categorical approach with87regards to the course content was appropriate for them,several of the neurology clinic group parents felt theepilepsy nucleus group suited them best. As one motherexpressed:One of the reasons I decided to go was because it was afocus of seizures. I tried one support group for chro-nically ill children. I just couldn't relate to them.I've got my own set of problems. They look at you andsay "what's you're problem?" Even though you're underthe umbrella of chronically ill, it's like apples andoranges. I wouldn't have gone with different condi-tions because it was too diverse. This way you saysomething and everyone there knows what you're talkingabout. You mention a drug and everyone knows it. Asit turned out, we all had the same neurologist. Youdon't waste a lot of time explaining things (8, 1123).In direct contrast to the first mothers opinion, anothermother explained:I think it's nice to have a focus for people that wantit and for those who want a general forum to have that.I probably would have, if I had known there was two,would have gone to the general one because my kids aremore involved than just epilepsy (5, 1175).Moreover, one mother from the general pediatric PEP groupsaid:I liked that everybody was there with different things.Because when your child has, whatever his disabilityis, you form groups with parents of that same typebecause of the therapies you're going for. You don'tget the overall picture of other people and other dis-abilities. You may seem to think yours is the worst.It really is an eye-opener for you to see, there'salways somebody worse off than you, no matter how badyou think you've got it. So, I think the broad spec-trum is better. Not specialized groups (27, 1574).SummaryThis chapter presented the findings of the parentsperceptions of coping, family functioning, and utilization88of resources. Mothers' coping, family functioning, andutilization of resources increased significantly followingthe program. Fathers' coping and family functioningincreased post-intervention. In addition, the parents'recommendations included: program participation commence 6months to one year after receiving their child's diagnosis;couples attend together when possible; and both general andspecific diagnostic options be available on an ongoingbasis.The discussion of the study's findings, conclusions,implications for nursing theory, administration, and prac-tice, and recommendations for further research will be thefocus of the following chapter.89CHAPTER FIVEDISCUSSIONMothers perceived an increase in their coping, familyfunctioning, and utilization of resources after participat-ing in the program and fathers perceived an increase intheir coping and family functioning. In addition, theinterview subjects recommended that: the PEP participationcommence six months to one year after diagnosis; when poss-ible, couples attend together; and both general and specificdiagnostic group session options remain available on anongoing basis to parents of children with chronic condi-tions. The study's findings are discussed in this chapterfollowed by conclusions; implications for nursing theory,administration, and practice; recommendations for furtherresearch; and this study's concluding remark.Discussion The discussion of the results will take place underfive major headings. These headings include: sample charac-teristics, parental coping, family functioning, utilizationof resources, and program variables. The results will alsobe discussed in relation to methodological problems inherentin the study.Characteristics of the Sample The characteristics of the sample are discussed inthree sections. These sections include: the diagnosticcategories, the demographic profile, and knowledge base.90With respect to the broad spectrum of diagnoses withinthe term chronic conditions described in the literature,this sample was representative of that diverse population(Nelkin, 1987; Rosenbum, 1987; Wegener & Aday, 1989). Thestudy was based on the theoretical premise that the PEP hassimilar effects on parents' coping, family functioning, andutilization of resources regardless of the specific medicaldiagnosis of their child. Based on the study results, thenoncategorical theoretical premise of the PEP was an appro-priate assumption for this study. This premise addressedthe non-representativeness of prior evaluative studiesincluding: Canam's (1990) study which excluded parents ofchildren with below average intelligence and the investiga-tions of Rudoph et al. (1991), Moxley-Haegert and Sebin(1983), Hornby et al. (1983), Duffy et al. (1987), and Lewiset al. (1991) that were diagnosis specific studies. More-over, the wide age range for both children (2 1/2 to 20) andparents (24-60) enhances the representativeness of sampleand, consequently, the results can be generalized to thepopulation of parents of children with chronic conditions.The inclusive nature of the PEP and the measured changes inparental coping, family functioning, and utilization ofresources demonstrated the suitability of the program as anintervention for parents of children with a wide variety ofchronic conditions. In addition, this study's resultsreaffirmed the validity of the noncategorical premise for91use in nursing theory.This study's sample included: Caucasian (74%), Chris-tian (68%), married (93%), highly educated (7% had < grade12), moderate to high income (59% > 41,000), and urbandwelling individuals. This socio-cultural profile of thesubjects reduced the representativeness of the sample withrespect to ethnicity, and marital and socioeconomic status.Further to this limitation, while the small sample size(n=28) was appropriate for a group clinical intervention, itwas small as far as a research study is concerned. Thissample decreased the generalizability of the results to thepopulation. However, with the exception of Lewis et al.(1991) cross-national program evaluation, it was representa-tive of parents who have participated in the reviewed evalu-ative studies of parent education programs.Due to the self-selection bias of this conveniencesample, the subjects' baseline readings on each of the 3questionnaires were at or above the midrange for each vari-able. Therefore, these baseline readings indicated that thesample may be different than the population. These differ-ences further limited the generalizability of the results.In summary, the study's sample was representative ofthe population with respect to the wide spectrum of child-ren's diagnoses and the wide variance in parent's andchild's ages. However, this sample's representativeness waslimited by the self-selected convenience sample with regard92to their socio-cultural and economic profiles, and theirbaseline levels of coping, family functioning, and utiliz-ation of resources.Parental CopingWhile the study results demonstrated an increase inmothers' and fathers' parental coping after program partici-pation and that change was maintained 4-5 months post-inter-vention, they differed in the coping patterns in which thischange occurred. Three researchers reported differencesbetween mothers' and fathers' coping in their study results.First, this disparity by gender was noted by Damrosch et al.(1989) in their investigations regarding how parents copewith their child's chronic condition. In this study,fathers described adjustment as a gradual steady recoveryand mothers reported periodic peaks and valley crises pat-terns. Second, Lewis et al. (1991) reported that duringpre- and post-test fathers rated lower anxiety levels thanmothers. Third, Duffy et al. (1987) found that parentalperceptions of confidence in dealing with their child'sasthma increased but at differing rates. Although theresults of the studies were not measured with this study'stools, they do confirm this study's findings that mothersand fathers differ in their reactions to and abilities tocope with their child's chronic condition.All of the interviewed fathers described a change intheir outlook on family life as being more involved in the93family and helping to alleviate some of their spouse'sresponsibility. Although Canam (1990) did not differentiatebetween mothers and fathers in her testing of this dimensionof the coping variable, the results revealed a significantincrease. The remaining literature does not discern betweenthe family, support, and medical dimensions of coping.Mothers described a change toward sharing the burden or"responsibility" of their child with the chronic conditionwith others. Although Venters (1981) identified sharing theburden of illness as a major coping strategy, this responseto program participation was not described in the reviewedevaluative studies. Furthermore, in the CHIP questionnaire,one out of the 19 questions was related to letting go orsharing the burden. This question was "getting other mem-bers of the family to help with chores and tasks at home"(McCubbin & Thompson, 1987, p.177). Therefore, the instru-ment may have lacked sensitivity to the type of change, inthe FAMILY pattern, experienced by the study's mothers.Moreover, Lewis et al. (1984) found that mothers assume themajor responsibility of caring for the chronically illchild. This study's mothers' willingness and ability toshare the burden could be related to fathers assuming a rolein and responsibility for their child's care. Conversely,as fathers participation increased the mothers may have beenable to let go of some of their re-sponsibilities. Todetermine the relationship between these two divergent but94not dissimilar changes in the FAMILY pattern of coping, thisstudy's marital dyads data should be reworked and/or acorrelational study should be designed and implemented.The mothers' perceptions of the SUPPORT pattern ofparental coping significantly increased after the PEP. Thischange in the support variable had three facets. First, theinterviewed mothers' reported that they received socialsupport from the group and expressed a need for an ongoingsupport group. Second, these mothers described being moreinvolved in activities that increased their self-esteem.Finally, the mothers delineated strategies that they now useto manage their psychological tensions. These strategiesincluded: acknowledging the stress, hobbies, relaxationtechniques, and humor.The results from Meyerowitz et al.'s (1967) studyrevealed a parental sense of social isolation due to per-ceived negative attitudes from the community and their lackof time for involvement. This observed isolation was dis-closed by the study subjects. Based on the results of threestudies, parental involvement in support groups with parentsin similar situations provided much needed social support(McCubbin, 1984; Van Cleve, 1989; Walker, 1989) and,consequently, support groups were lauded as an invaluableservice for parents (Diehl, 1991). As a result of thesubjects' program participation, they reported feeling lessalone. Furthermore, the positive change in support was95described by several parent education program investigators.While these studies did not differentiate by gender, theyconfirmed this study's finding. Hornby et al. (1983) docu-mented that most parents commented that they appreciated theopportunity of sharing problems and feelings with otherparents that understood them. This finding was reiteratedby the evaluative studies of Rudoph (1981) and Lewis (1991).Clearly, this coping pattern was positively influenced byprogram participation. Given that these mothers assumed themain caretaker role for their children, the improved abilityto cope on this dimension reduced their sense of socialisolation, increased their self-esteem, and enabled them toeffectively manage their psychological tensions.Both mothers' and fathers' Medical coping patternsignificantly increased after participating in the PEP.Each of the study subjects described possessing more knowl-edge about their child's chronic condition and recounted themastering of care for this child at home through communica-tion with other parents of children with chronic conditionsand with health care professionals.According to Shulman et al. (1983), families that copedwell had trusting relationships with health care profes-sionals. Further, the results of McCubbin et al.'s (1982)study indicated that consulting with the medical team wasall-important. The reviewed evaluative studies confirm thisstudy's finding on this medical dimension. Rudoph et al.96(1981) found that fathers appreciated the opportunity tolearn about the medical aspect of their child's conditionand all subjects felt they had gained from communicatingwith other parents. In Hornby et al's (1983) study, parentscommented on the increased knowledge which they had gained.Further support was evident in Gaudet et al's (1989) study.These researchers concluded that parents' knowledge aboutcoping with pediatric chronic illness and their copingskills changed from the beginning of the program. Similar-ly, Duffy et al. (1987) found that parent's understanding ofasthma had changed. This study's result, which showed anincreased perceived parental ability to cope with a child'smedical condition, corroborated Canam's (1990) results.In summary, even though the subjects' coping patternresults varied by gender, overall parental coping increasedafter taking the PEP. These findings are verified andsupported by the literature. This increased parental copingembodies vital components required for parental adjustmentto the enduring stressors related to having a child with achronic health condition. Therefore, the PEP was an effec-tive clinical intervention which facilitated parental cop-ing.Family FunctioningCanam (1990) found that her study's interview subjectsperceived a change in family functioning as a result ofparticipating in the PEP. Therefore, this researcher's97study replicated Canam's study and used the FES tool toassess changes in family functioning that resulted post-program. Again, mothers and fathers differed on the sub-scales in which change was noticed. This change was appar-ent in family cohesion, expressiveness, independence, andactive recreational orientation.The mothers' and fathers' perception of the cohesionsubscale of family functioning increased as a result oftheir program participation. From the interviews, thiscohesion was described as a "strengthened commitment ofstaying together" and "keeping the family as a unit", "beingmore unified", and "spending time together". In the litera-ture on family functioning, two divergent views were evi-dent. Gath (1977) contended that parents of chronically illchildren had significantly poorer marital relationships andTew et al. (1974) revealed that marital harmony decreased incouples with spina-bifida. On the other hand, Koocher etal. (1981) reported that the childhood illness had broughtthem closer. McCubbin et al. (1982) suggested that keepingthe family together was essential for positive outcomes andVan Cleve (1989) determined that there was a significantpositive relationship between coping and a strong maritalrelationship. Moreover, the Royal Commission (1991) andShelton et al. (1987) asserted that an intact family was themost important influence on the child. Based on the studyresults of increased cohesion between the study's marital98dyads, the PEP represents an important intervention whichameliorates family functioning and, in turn, optimizes thechild's environment.The fathers' expressiveness subscale showed a signifi-cant increase after the PEP. The interviewed fathers por-trayed themselves as being more ready to discuss things andattempting to listen more. Moreover, two of the interviewedmothers disclosed that during and since the program, theirhusbands "expressed their feelings" and "talked aboutissues". Turk's (1964) study revealed that family stresslevels increased as a result of communication problems. Inthe reviewed evaluative studies, one researcher documented asimilar increase in father's expressiveness after taking aneducation program which affirms the above study findings.Rudoph et al. (1981) reported that changes in communicationpatterns between husbands and wives occurred in some fam-ilies and several wives described their husbands as "open-ing-up" for the first time. Researchers have identifiedcommunication problems as a stressor on families. Since thefathers' who participated in the PEP were more able tocommunicate their feelings and issues, their family func-tioning improved.The change in the mothers' and fathers' FES subscale ofactive-recreational orientation was statistically non-sig-nificant. However, the deductive content analysis contra-dicted this result. Eight of the nine interviewed subjects99observed changes in the extent of participation in socialand recreational activities. These subjects described themaintenance of their regular weekly spousal outings andvacationing together. Five of the parents reported thatthey participated in more frequent family outings. More-over, these parents maximized their child's opportunities toparticipate in new activities. While a change in spousal orfamily orientation to recreational activity was not anevident parental outcome in the reviewed evaluative studies,one researcher's findings supported the need for children'sactivities. Horner et al. (1987) conducted a parentalsurvey of perceived needs and found that one of the threemajor parental needs was recreation for their child. Thisancillary outcome of increased spousal, family, and childactive-recreational orientation enhanced the quality of lifefor these families which enabled them to function more fullyafter program participation.Overall, family functioning had increased post-inter-vention. The facets of this enhanced function differed bygender. Both mothers and fathers perceived more cohesionwithin their marital dyad and were more recreational active.Moreover, the study's fathers had become increasinglyexpressive and independent.Utilization of ResourcesCanam (1990) established from her subjects' interviewsthat utilization of resources increased following program100participation. Consequently, this researcher replicatedCanam's study and used the FIRM questionnaire to determinethese changes quantitatively. Once again, the mothers' andfathers' were dissimilar in their perceptions of utilizationof resources. Fathers' perceptions on this variable showeda non-significant increase. This non-significant resultcould be attributed to the following factors. Given thatmother's assumed the role of primary caretaker, father's maynot perceive a need to increase their knowledge and skillsregarding resources. Another possible reason for thisabsence of results could be attributed to the small sample(n=8) of fathers. It was more difficult to show significantlevels of change with small n's and the chance of making aType II statistical error was increased.On the other hand, mothers' perceptions of utilizationof resources increased on the esteem and communicationscale, the mastery and health scale, and their total reper-toire of resources. Mothers' disclosed an increase in theirfamily esteem in the interviews. This esteem was verballydepicted as "adding to their respect" for their spouses,children, and extended families. Esteem was not explicitlyevident in the reviewed evaluative studies.The mothers' noted a prevalent change post-interventionwith respect to three aspects of communication. First,mothers expressed an increase in their empathy for spouses,children, parents, other family members, and friends.101Second, the mothers described an enhanced listening ability.This listening skill pertained to their spouses, and thechild with the chronic condition and their siblings. Third,the mothers articulated an heightened ability to communicateverbally with their spouse and their child with a chroniccondition. As mothers' competence in communicationincreased post-intervention, they reported having estab-lished more meaningful and closer relationships with theirspouses, ill children and their siblings, extended family,and friends. Similarly, Rudolph et al.'s (1981) studydemonstrated changes in the communication patterns betweenhusbands and wives and these results confirm this study'spositive change in communication patterns as a result of aneducation program.While several mothers talked about increased spousalinvolvement, others talked about the interrelationshipsbetween their child with the chronic condition and her/hissiblings, extended family members, friends, health careproviders, and community members involved in activities withdisabled persons. These interrelationships were integralparts of this mutual assistance experienced post-interven-tion. Another common theme throughout the mothers' inter-views was their increased problem solving ability. Thisproblem solving was used in dealing with health care pro-viders and family members. According to Shulman (1983) andVenters (1981) studies, a support network was needed to help102families cope with the complexities created by their child'schronic condition. Although Canam (1990) recommended theuse of measures to determine utilization of resources, thiswas not quantitatively measured in that study. Furthermore,the remaining reviewed evaluative studies did not addressthe involvement of other people in the care of the childwith the chronic condition or the use of problem solvingstrategies in their daily life.In the interviews, mothers expressed having felt asense of helplessness or lack of control prior to programparticipation. This sense of helplessness had origins inthe chronic condition, the health care professionals, andthe health care system. During the five month post-inter-vention interviews, the mothers felt that taking the actionof participating in the PEP enhanced their sense of controland, consequently, mastery over family outcomes. As onemother explained, "I felt more in control of the situation.In control of whatever I could be in control of. ... Itdoesn't scare me anymore." Although Walker et al.'s (1989)survey revealed that parents need parent education on rightsand entitlements, help in getting needed services, andinformation on community resources, the reviewed evaluativestudies did not consider the parent's mastery or sense ofcontrol over family outcomes. Moreover, according to Freyet al. (1989), parental beliefs are the single most powerfulcorrelate of parent outcomes. The present study's results103concur with Walker et al.' survey and demonstrates theeffectiveness of parent education.When interviewed, the mothers reported improvement inthree aspects that were encompassed in the dimension offamily mutuality. First, mothers had noticed increasedspousal emotional support. They described feeling thattheir husbands were "more there" for them and were moreattentive to their emotional needs. Second, a common themethroughout the mothers' interviews was increased together-ness. This togetherness was evidenced by spending more timealone with their spouses and the siblings of their childwith the chronic condition. Many mothers reported that,prior to taking the PEP, the child with the chronic condi-tion absorbed an inordinate amount of their attention, time,and energy. Consequently, they expressed positive views onthese alternate focuses of attention. In addition, theydescribed improved relationships with their children withthe chronic conditions. Third, the mothers had noticed anincreased sense of cooperation from others. After partici-pating in the PEP, the majority of the interviewed motherssaid that they expected and asked for help from theirspouses and special care workers. Moreover, they were ableto ask for cooperation without feeling guilty. In addition,several mothers had observed increased cooperation betweensiblings post-intervention. Shulman (1983) described thatfamilies that coped well shared the following common charac-104teristics: good quality of marital and familial relation-ships; and a good support system. Similarly, Venters (1981)identified parents ability to share the burden of illness,both with family members and with someone outside the familyas a strategy that helped families to manage the hardshipsof the child's illness over time. With the exception ofCanam's (1990) study, the reviewed evaluative studies didnot consider these outcomes. Since the program increasedthe mothers' perception of spousal support; family together-ness between and among spouses, and the child(ren) with thechronic condition and their sibling(s); and cooperation fromothers, the program was an effective strategy that improvedthe mothers' overall ability to manage the enduringstressors embodied in their child's chronic condition.The Double ABCX Model (McCubbin et al., 1983) predictedthat families possessing a larger repertoire of resourcesmanage more effectively and adapt better to stressful situ-ations inherent in having a child with a chronic condition.This study demonstrated that program participation increasedmothers' repertoire of resources, parental coping, andoverall family functioning. Using McCubbin's prediction,families who participate in PEP will effectively manage andwill better adapt to the stress of having a child with achronic condition. Therefore, the PEP represents an effec-tive clinical intervention for these parents. This study's9 interviews determined that the subjects had maintained105these changes up to the 4-5 months post-intervention.Program Variables The interviewed parents unanimously recommended thatthe appropriate timing for the PEP was six months to oneyear after the initial diagnosis was made. This recommenda-tion fits with McCollom & Gibson's (1970) suggestion thatparents' adaptation to their child's diagnosis was a processand that readiness is important to learning. A furtherrecommendation was that this program be available to allparents when their child's diagnosis has been conferred.This recommendation concurs with the reviewed literature's(Austin, 1990; Haladay, 1978; Klein et al., 1979) views thatparents of children with chronic conditions require special-ized parenting knowledge and skills. Moreover, the inter-viewed parents expressed the view that, when possible and ifapplicable, marital partners ought to both participate inthe PEP. In Canam's (1990) inclusion criteria, only theprimary caregiving parent could attend, thus eliminatingmarital dyads. However, based on this parental recommenda-tion, couples' participation ought to be strongly advocated.Although there were two opposing views about whether or notthe PEP ought to be offered in diagnosis specific groups,the consensus of parental opinion was that both optionsought to be available on an ongoing basis.106Conclusions The findings of this study document an increase inparental coping, family functioning, and utilization ofresources for parents who participated in the program.Furthermore, parents made 3 recommendations that providedirection for future program presentations. Since thesample size was small and self-selected, the results of thisstudy have limited generalizability.The major conclusions of this study are as follows:1. Program participation increased parental coping in thefollowing manner:a) Fathers had a more positive outlook on their familylife and their child's illness.b) Mothers and fathers possessed more knowledge abouttheir child's chronic condition and increased in masteringthe care required for the child at home.c) Mothers were more willing to share the burden oftheir child's condition.d) Mothers' personal sense of well being increased.2. Program participation increased family functioning thefollowing ways:a) Mothers and fathers strengthened the degree of theircommitment, help, and support for family members.b) Mothers and fathers participated in more social andrecreational activities with each other and with their childwho had the chronic condition and her/his sibling. The107child with the chronic condition was involved in more activ-ities.c) Fathers expressed themselves more openly and direct-ly.d) Fathers increased in their sense of independence.3. Program participation increased the mothers' utilizationof resources in the following manner:a) Mothers' sense of family esteem was enhanced.b) Mothers' communication skills improved.c) Mothers expanded their problem solving ability.d) Mothers encouraged spouses and the child with thechronic condition and her/his sibling to become increasinglyautonomous.e) Mothers' sense of control and mastery over familyoutcomes increased.f) Mothers perceived an increase in family mutualitywhich includes emotional support, togetherness, and cooper-ation.Implications The findings of this study have a number of implica-tions for nursing theory, administration, and nursing prac-tice. The following section delineates these implications.Implications for Nursing TheoryThe study results validated the following nursingtheories used within the study. These theories were theDouble ABCX model (McCubbin et al, 1983), the noncate-108gorical approach to chronic conditions (Stein et al. 1989),and the common adaptive task framework (Canam, 1993).The conceptual framework chosen for this study was theDouble ABCX model developed by McCubbin et al. (1983). Thismodel provided direction for the literature review and forthe selection of the quantitative data collection tools.Furthermore, it was useful, during the data analysis, forunderstanding the interrelationships between coping, familyfunctioning, and utilization of resources as they relatedparental management and adaptation to the ongoing and unre-lenting stress of having a child with a chronic condition.The theoretical premise of the program and an assump-tion of this study was that the PEP would have similareffects on parents' coping, family functioning, and utiliz-ation of resources regardless of the specific medical diag-nosis of their child (Canam, 1990). Given that the studyinvolved 2 general and 2 specific diagnostic groups andgiven that the program proved effective for all groups ofparticipants, this non-categorical postulate was supportedby this study.The common adaptive task framework (Canam, 1993) pro-vided the program's theory base and structure. Given thatthe PEP increased parental coping, family functioning, andutilization of resources, this framework was a usefulconceptualization for understanding and supporting theparents' process of adaptation to their child's condition.109Implication for Nursing AdministrationGiven the Royal Commission's (1991) guidelines fordetermining government expenditures, the positive outcomesfor program participants, and the parental endorsement ofthis program, hospital and community health unit administra-tors must actively lobby for program funding to ensureregular and ongoing program presentations.Implications for Nursing Practice 1. The parent education program is one effective methodof supporting parents whose child has a chronic condition byhelping them to learn the necessary knowledge and skills toaccomplish the common adaptive tasks. The program should beoffered on an ongoing basis by pediatric nurses and nurseclinicians as a health promotion and prevention strategy.The inclusive nature of the program and the measured changesin parental coping, family functioning, and utilization ofresources demonstrated the suitability of the PEP as a groupclinical intervention for parents of children with a widevariety of chronic conditions.2. Future nursing program planners responsible forrecruitment and screening should be cognizant of the recom-mended 6 month to 1 year post-diagnosis time frame.3. Future nursing program planners responsible forrecruiting participants should strongly advocate, in theirprogram promotions, that couples attend together if at allpossible.1104. Future nursing program planners responsible fororganizing sessions should offer general and specific diag-nostic group options depending on the assessed needs of thepopulation.Recommendations for Further ResearchThis study's findings suggested a number of areas forfurther research to evaluate the effectiveness of a parenteducation program. These suggestions include:1. The PEP should be offered and evaluated in severalsmaller outlying communities. This research project wouldhave a more representative sample in terms of its socio-economic and cultural profiles than the existing study. Thecontrol group should be equivalent to the experimental groupin terms of size, specific or general diagnostic options,and demographic characteristics. The proposed project couldreplicate this study's quasi-experimental research design.2. 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The Canadian Jour-nal of Nursing Research,20(2), 61-62121APPENDICESAppendix AParticipant Information LetterDear Parents or Guardians,I am a registered nurse presently working towards aMaster's degree in Nursing at the University of BritishColumbia. As part of this degree, I am evaluating theeffectiveness of a parent education program.The program is being offered to parents who have achild with a long term health problem or disability. Thepurpose of this program is to help parents cope with thetasks of raising a child with a chronic condition by teach-ing them the knowledge and skills they need to complete thetasks.The program will cover the following: obtaining infor-mation about your child's health condition, helping yourfamily cope with ongoing stress, meeting your child's devel-opmental needs, meeting other family members' needs includ-ing your own, managing your feelings and helping otherfamily members to manage theirs, talking about the healthcondition within the family and explaining the condition toothers, and developing and using resources to meet yourchild's and family's needs. Parents who participate in theprogram will have an opportunity to share, learn, and prac-tice skills to enhance their ability to cope with theirchild's chronic condition.The program will be held one evening a week for eightweeks, starting in October of 1992, and each evening'ssession will be two hours in length. Parents who have achild with any chronic health problem or disability areinvited to attend. There is no cost involved but parentswill be asked to respond to three questionnaires, one weekprior to the program and one week after program completion,as part of this research study to evaluate the program.Filling out the questionnaires will take approximately onehour to complete. Parents will also be asked, upon comple-tion of the program, to volunteer to be interviewed three tofour months after the program has finished. The purpose ofthe interview will be to talk about the effects the programhas had on your coping and family life and will take approx-imately one hour.122If you are interested in participating in the programor would like more information please contact:Ethel McLean^XXX -XXXXConnie Canam XXX -XXXX123Appendix BNotice to Parents:An Education Program for Parents of Children with ChronicConditions.A parent education program is being offered by the SchoolLiaison Program of the Public Health Department for parentswho have a child with a long term health problem or disabil-ity. The purpose of this program is to help parents copewith the tasks of raising a child with a chronic conditionby teaching them the knowledge and skills they need tocomplete the tasks.The program will cover the following: obtaining informationabout your child's health condition, helping your familycope with ongoing stress, meeting your child's developmentalneeds, meeting other family members' needs including yourown, managing your feelings and helping other family membersto manage theirs, talking about the health condition withinthe family and explaining the condition to others, anddeveloping and using resources to meet your child's andfamily's needs. Parents who participate in the program willhave an opportunity to share, learn, and practice skills toenhance their ability to cope with their child's chroniccondition.The program will be held one evening a week for eight weeks,starting in October of 1992, and each evening's session willbe two hours in length. Parents who have a child with anychronic health problem or disability are invited to attend.There is no cost involved but parents will be asked torespond to three questionnaires one week prior to and oneweek after completion of the program as part of an ongoingresearch study to evaluate the program.If you are interested in participating in the program orwould like more information please contact:Deborah Ryan, West Main Health Unit, XXX -XXXX.124Appendix CParticipation Consent FormTitle of Study: Evaluation of an Education Programfor Parents of Children with Chronic Health Condi-tions.Investigator: Ethel McLean, BScN., RN. XXX-XXXXThesis Committee: Connie Canam,M.S.N.,RN. (Chair)XXX -XXXXTom Sork, Ph.D.^XXX -XXXXDear Parents:You have been given information about an educationprogram that is being offered for parents of children withchronic health conditions.The program was developed to provide parents with anopportunity to share, learn, and practice skills to enhancetheir ability to cope with their child's chronic condition.The following topics will be covered: obtaining informationabout your child's health condition; helping your familycope with ongoing stress; meeting your child's developmentalneeds; meeting other family members' needs including yourown; managing your feelings and helping other family membersto manage their feelings; talking about the health conditionwithin the family and explaining the condition to others;and developing and using resources to meet you child andfamily's needs. The program is sixteen hours in length withtwo hour sessions held one evening a week for eight weeks.The program will commence in the fall of 1992.Your participation in the program will involve attend-ing the eight sessions and completing three questionnairesone week prior to the program beginning and one week afterit is completed. The questionnaires will cover such thingsas your perceptions about what helps you cope with yourchild's condition, what your family is like, and whatresources you have to help you manage family life. Fillingout the questionnaires involves making a selection from anumber of choices and ticking them off. They will takeapproximately one hour to complete and you are free torefuse to answer any questions you do not want to answer.Although you may find the questions personal, substantialdiscomfort is not expected.Parents will also be asked upon completion of theprogram, to volunteer to be interviewed three to four monthsafter the program has finished. The purpose of the inter-view will be to talk about the effects the program has had125on your coping and family life and it will take approximate-ly one hour. Interviews will be tape recorded and will beshared only with the members of the thesis committee. Thetapes will be erased immediately following completion of thestudy. The information gained from the questionnaires andthe interviews will help to evaluate the helpfulness of theprogram for parents.All information that you share on the questionnairesand in the interviews will be kept confidential. No nameswill appear on the questionnaires or interviews; they willbe identified by a code number only. Only the researcherswill have access to the information and only group data willbe used in a project report.Participation in the study is entirely voluntary andshould you decide to participate, you have the right towithdraw from the study at any time. Your refusal to par-ticipate will not affect the present or future medical careof your child. If you would like to talk with us about anyaspect of this study, please call the numbers listed above.Date ^ Signature of InvestigatorThe program and study described above have beenexplained to me, and I have had an opportunity to ask ques-tions and understand that future questions I may have aboutthe study or my rights will be answered by the investigator.A copy of the consent form will be given to me. I consentto participate in the study.Date ^ Signature of Parent(s)126Appendix DCODE NUMBER ^DEMOGRAPHIC QUESTIONNAIRE1. What is the name(s) of your child's chronic condition(s)?2. What is the age of your child with the chronic condition?3. List the gender and age of other children in the familyin your family.PLEASE CIRCLE THE ANSWER WHICH IS MOST APPROPRIATE.4. Please indicate your relationship to this child?i) mother^v)^foster motherii) father vi) foster fatheriii) stepmother^vii) guardianiv) stepfather viii)other (specify)5. Does anyone else in your family have the same type ofhealth condition?YES^NOIf yes, who?i) youii) spouse/significant otheriii) child's brother(s)/sister(s)iv) grandparent(s)v)^other (specify)6. What is your ethnic background?i) Caucasian/Whiteii) Oriental (Chinese/Japanese)iii) Asian (East Indian)iv) Spanishv) Italianvi) Greekvii) First Nationviii)Other (specify)7. What is your religious background?i) Catholicii) Jewishiii) Protestantiv) Other (Specify)v)^No religion8. What is your marital status?i) singleii) marriediii) common-lawiv) widowedv) divorced or separatedvi) remarriedvii) other (specify)9. How long have you been married/living together?10. Are you currently employed?^YES NOIf yes, what do you do?Do you work a) full-time, or b) part-time?11. What is the occupation of your spouse/significant other?Does he/she work a) full-time, or b) part-time?12. What is the total amount of income in your household,all sources combined?i) less than $10,000ii) $11,000 - $20,000iii) $21,000 - $40,000iv) $41,000 - $60,000v)^over $60,00013. What level of education have you completed?i) 9th grade or less v) some college oruniversityii) 10th grade^vi) college or universitygraduateiii) 11th grade vii) master's degreeiv) 12th grade^viii) doctoral degree14. How has your general health been in the past year?i) excellent^iii) goodii) very good iv) fairv)^poor127128Appendix EInterview Guide for Parent Interviews I. Looking back, what would you say is the single mostimportant thing you got from the program.II. Since you have taken the program, what changes have younoticed in yourself? in the way you think about things? inthe way you feel about things? in the way you do things?If there were things you wanted to work on, how haveyou done this?III. By way of comparison, in what ways has your parentingchanged since taking the program?Tell me about the sources of stress that seem to havechanged?In what ways do you react differently to daily hassles?IV. Since the program ended, has your family experienced acrisis situation such as a readmission to hospital?If yes, in what ways did you deal with the situation differ-ently?V. Is your family situation any different now than beforeyou took the course? Describe those differences.Describe differences you have noticed in the way yourelate to your spouse? your child with the chronic condi-tion? your other children? your parents? your neighbours?What differences have you noticed in the way theyrelate with you?VI. Since taking the program, are you aware of resources or129supports in the community that you weren't aware of before?Describe additional personal, family, medical,andcommunity resources you are now aware of?Which of these additional resources are you making useof? What changes have you noticed about the way you relatewith your doctor? other health care professionals?What changes have you noticed when you talk to yourfriends, your neighbours about your child's chronic condi-tion? What brought about these changes (program contact,ideas of other parents) for you?What contacts, if any, have you made with the otherparents in the group? with other support groups?VII. In closing, what other comments would your like to makewith regards to changes you have noticed while and sincetaking the program?VIII. Would you recommend the program for other parents ofchildren with chronic conditions? If so, why? If no, thenwhy not?130CategoryAppendix FThe Interview Categorizing SchemeCriteria for assigningcontent to a CategorySub-category Coping^1. Parental outlook on lifeand illness.2. Maintaining sense of ownwell-being through:a) social relationshipsb) Involvement inactivities that increaseself-esteemc) managing psychol.tensions (anxiety, stress)3. Mastering informationneeded to care for childat home through:a) Commun. with otherparentsb) Commun. with HCPFamily Func- 1. Cohesion (commitment)tioning^2. Expressiveness (openness) RelationshipDimension3. Conflict (disagreement)4. Independence5. Achievement Orientation6. Intellectual-CulturalOrientation (groups)^Growth Dimen-7. Active Recreational sionOrientation8. Moral Religious Emphasis9. Organization (formality) System Mainten-10. Control (hierarchy)^anceResources^1. Family Esteem2. Communication3. Mutual Assistance4. Optimism^ Esteem &5. Problem Solving Ability^Communication6. Encouragement of Autonomy7. Mastery over familyevents and outcomes8. Family mutualitya) emotional support^Mastery &b) togetherness^Healthc) co-operation9. Physical and emotionalhealth10. Extended family socialsupportIV. Program^1. Timing of PEPVariables^2. Composition of PEPa) couplesb) diagnosis131132Appendix GControl Group's Paired t-test Pre/Pre-TestMean Scores for CHIP, FES, and FIRMToolPattern/SubscalePre/Pre-test Pre-testCHIP FAMSUPPMED34.631.417.032.828.416.6FES C 7.4 7.4EX 5.6 5.2CON 4.0 4.2IND 6.6 6.6AO 4.6 5.0ICO 7.4 7.4ARO 4.6 4.6MRE 4.0 4.0ORG 5.4 4.6CTL 2.6 3.4FIRM SFS 5.4 5.4RS 20.6 18.0FS 20.6 20.0SS 26.4 26.0FIRM 95.0 91.2133Appendix HSum ofFemale Experimental Groups' ANOVASquares and Mean Squares for CHIP, FES, and FIRMTool Pattern/ Residual Total Residual TotalSubscale Sum of Sum of Mean MeanSquares Squares Square SquareCHIP FAM 383.983 444.55 23.999 23.397SUPP 848.133 934.95 53.008 49.208MED 184.750 186.55 11.547 9.818FES C 28.883 32.80 1.805 1.726EX 39.700 60.80 2.481 3.200CON 54.933 62.00 3.433 3.263IND 27.583 34.55 1.724 1.818AO 23.583 30.20 1.474 1.589ICO 27.033 34.55 1.690 1.818ARO 26.083 32.95 1.630 1.734MRE 30.633 31.80 1.915 1.674ORG 24.833 25.75 1.552 1.355CTL 40.383 40.95 2.524 2.155FIRM SFS 58.033 64.637 3.627 3.402RS 119.500 141.80 7.469 7.463FS 170.783 187.80 10.674 9.884SS 96.783 104.20 6.049 5.484FIRM 749.300 799.30 46.831 42.053134Appendix IExperimental Groups' Paired t-testPre/Post-Test Mean Scores for CHIP, FES, and FIRMToolPattern/SubscaleMothers'^Mothers'Pre-test^Post-testFathers'Pre-testFathers'Post-testCHIP FAM 39.0 40.15 41.5 46.5SUPP 33.55 37.1 33.125 33.25MED 17.0 18.65 18.375 20.125FES C 6.8 7.4 6.5 7.375EX 4.9 5.55 4.875 6.125CON 4.2 4.2 4.0 3.625IND 5.85 6.0 4.875 6.0AO 4.75 5.05 4.375 4.0ICO 6.3 6.45 4.625 5.0ARO 4.6 5.05 4.625 4.625MRE 4.9 4.8 5.5 5.75ORG 5.35 5.6 6.25 6.5CTL 4.75 4.8 4.875 4.375FIRM SFS 5.55 2.8 6.625 7.375RS 19.8 21.9 19.0 20.625FS 20.4 22.3 21.5 22.0SS 26.65 27.35 23.625 22.375FIRM 97.0 101.5 91.625 93.875Appendix J135QuestionnairesUniversity of MinnesotaFamily Social Science290 McNeal HallSL Paul, Minnesota CHIPFORM 01981N. McCubbCOPINq-HEALTH INVENTORY FOR PARENTSFamily Health ProgramHamilton I. McCubbin Marilyn A. McCubbin Robert S. Nevin Elizabeth CaublePURPOSECHIP — The Coping-Health Inventory for Parents was developed to record what parents find helpful or nothelpful to them in the management of family life when one or more of its members is ill for a brief periodor has a medical condition which call for continued medical care. Coping is defined as personal or collec-tive (with other individuals, programs) efforts to manage the hardships associated with health problems inthe family.DIRECTIONS• To complete this inventory you are asked to read the list of "Coping behaviors" below, one at a time.• For each coping behavior you used, please record how helpful it was.140N HELPFUL was this COPING BEHAVIOR to you and/or your family: Circle ONE number3 = Extremely Helpful2 =Moderately Helpful1 = Minimally Helpful0 IC Not Helpful• For each Coping Behavior you did Not use please record your "Reason."Please RECORD this by Checking a one of the reasons:Chose not to use it^Not Possible0^or^0PLEASE BEGIN: Please read and record your decision for EACH and EVERY Coping Behavior listed below.1./=■■•••■COMPUTER CODES:^110 DDDD GID 0 CI CI RAMIE) 10 0 0 011111111113 0203 0332220003 03 033222200200322223 2 002033322000333333222220000022003 03 03 03222222222220^ ^120 00 0^ 0^ ^^ 0^ 0O 0^ 0^ ^^ ^^ ^^ ^^ •034^ 0 35^^ 0^ 0^ 00^ 0O 0^^ 0^ ^O 0O 0O DO 0'0 DO 0O 0^ ^137For CorriouUse OrilvF^S0^ 0O C0^O 0O0 0^ 0r-0OO ^O ^O 0OC00OO^ 0^O ^O0^ 0^O 00^ C^ 0O 00O^ 0^oCO 0O 00I do not copethis waybecause:Cin* I MwMot To Pear*COPING BEHAVIORSI Trying to maintain family stability- 2 Engaging in relationships end friendships which help ma to feel importantand appreciated3 Trusting my spouse (or former spouse) to help SUPPOrt MO and my child(ren)4 Sleeping• Talking with the medical staff (nurses, social worker, etc.) often we visit themedical canter• Believing that my child(ren) will get better•7 Working, outside employment▪ Showing that l am strong9 Purchasing gifts for myself and/or other family members10 Talking with other individuals/parents in my same situation11 Taking good care of all the medical equipment at home12 Eating13 Getting other members of the family to help with chores and tasks at home14 Getting away by myself15 Talking with the Doctor about my concerns about my child(renl with themedical condition •16 Believing that the medical center/hospital has my family's best interestin mind17 Building close relationships with people18 Believing in God19 Develop myself as a person20 Talking with other parents in the same type of situation and learning abouttheir experiences21 Doing things together as a family (involving all members of the family)Investing time and energy in my job33 Believing that my child is getting the best medical care possible•24 Entertaining friends in our home25 Reading about how other persons in my situation handle things26 Doing things with family relatives27 Becoming more self reliant and independent28 Telling myself that I have many things I should be thankful for29 Concentrating on hobbies (art, music, jogging, etc.)30 Explaining our family situation to friends and neighbors so they will understand us31 Encouraging children) with medical condition to be more independent •32 Keeping myself in shape and well groomed33 Involvement In social activities (parties, etc.) with friends34 Going out with my mouse on a regular basis35 Being sure prescribed medical treatments for Child(reKii are tarried out at homeon • daily basis36 Building a closer relationship with my spouse37 Allowing myself to pit angry38 Investing myself in my child(ren)39 Talking to someone (not professional counselor/doctor) about how I feel40 Reading more about the medical problem which concerns me41 Talking over personal feelings and concerns with spouse42 Being able to get away from the home care tasks and responsibilities forsome relief43 Having my child with the medical condition seen at the clinic/hospital on aregular basis'44 Believing that things will always work out45 Doing things with my childrenPLEASE Check all 45 items to be sure you have either titled a number or checked a box for Seth ens. This is important.CAM 0051,SUP r.-.^62MED O.PAMILYEAVIII1161111111EAT SCALEI^4 *PORM RRUDOLF H. MOOSr,,„t„ail it .14^UMWItEiniINEILMI BRUM •INSTRUCTIONSThere are 90 statements in this booklet. They are statementsabout families. You are to decide which of these statements aretrue of your family and which are false. Make all your marks onthe separate answer sheets. If you think the statement is True ormostly True of your family, make an X in the box labeled T(true). If you think the statement Is False or mostly False of yourfamily, make an X in the box labeled F (false).You may feel that some of the statements are true for somefamily members and false for others. Mark T if the statement istrue for most members. Mark F If the statement Is false for mostmembers. If the members are evenly divided, decide what Is thestronger overall impression and answer accordingly.Remember, we would like to know what your family seems liketo you. So do not try to figure out how other members see yourfamily, but do give us your general impression of your familyfor each statement.CONSULTING PSYCHOLOGISTS PRESS, INC.577 College Ave., Palo Alto, California 943060Copyright 1974 by Consulting Psychologists Press, Palo Alto, CA 94306.All rights reserved. This test, or parts thereof, may not be reproduced inany form without permission of the not.n,t,..1. Family members really helpand support one another.2. Family members often keeptheir feelings to themselves.3. We fight a lot in our family.4. We don't do things on ourown very often in our family.5. We feel it is important to bethe best at whatever you do.6. We often talk about politicaland social problems.7. We spend most weekends andevenings at home.8. Family members attend church,synagogue, or Sunday Schoolfairly often.9. Activities in our family arepretty carefully planned.10. Family members are rarelyordered around.11. We often seem to be killingtime at home.12. We say anything we want toaround home.13. Family members rarely be-come openly angry.14. In our family, we are stronglyencouraged to be independent.15. Getting ahead in life is veryimportant in our family.16. We rarely go to lectures, playsor concerts.17. Friends often come over fordinner or to visit.18. We don't say prayers in ourfamily.19. We are generally very neat andorderly.20. There are very few rules to fol-low in our family.21. We put a lot of energy int1what we do at home.22. It's hard to "blow off steam"at home without upsettingsomebody.23. Family members sometimesget so angry they throw things24. We think things out forourselves in our family.25. Flow much money a personmakes is not very importantto us.26. Learning about new anddifferent things is veryimportant in our family.27. Noboby in our family is activein sports, Little League, bowliretc.28. We often talk about the rcligiomeaning of Christmas, Passoveor other holidays.29 It's often hard to find thingswhen you need them in ourhousehold.30. There is one family membtwho makes most of thedecisions.31. There is a feeling of together-ness in our family.32. We tell each other about ourpersonal problems.33. Family members hardly everlose their tempers.34. We come and go as we want ttin our family.35. We believe in competition and"may the best man win." -t..P36. We are not that interested incultural activities.We often go to movies, sportsevents, camping, etc.We don't believe in heaven orhell.Being on time is very importantin our family.There are set ways of doingthings at home.We rarely volunteer whensomething has to be done athome.42. If we feel like doing somethingon the spur of the moment weoften just pick up and go.43. Family members oftencriticize each other.44. There is very little privacy inour family.45. We always strive to do thingsjust a little better the nexttime.46. We rarely have intellectualdiscussions.47. Everyone in our family has ahobby or two.i8. Family members have strictideas about what is rightand wrong.49 People change their mindsoften in our family.50. There is a strong emphasis onfollowing rules in our family.51. Family members really backeach other up.52. Someone usually gets upset ifyou complain in our family.53 Family members sometimes hite,ich (II her54. Family members almostalways rely on themselveswhen a problem comes up.55. Family members rarely worryabout job promotions, schoolgrades, etc.56. Someone In our family playsa musical Instrument.57. Family members are notvery involved in recreationalactivities outside work orschool.58. We believe there are somethings you just have to takeon faith.59. Family members make suretheir rooms are neat.60. Everyone has an equal say infamily decisions.61. There is very little group spiritin our family.62. Money and paying bills isopenly talked about in ourfamily.63. If there's a disagreement inour family, we try hard tosmooth things over and keepthe peace.64. Family members stronglyencourage each other to standup for their rights.65. In our family, we don't trythat hard to succeed.66. Family members often go tothe library.67. , Family members sometimesattend courses or take lessonsfor some hobby or interest68. In our family each person hasdifferent Ideas about what isright and wrong.69. Each person's duties are clearlydefined in our family.70. We can do whatever we wantto in our family.71. We really get along well witheach other.72. We are usually careful aboutwhat we say to each other.73. Family members often try toone-up or out-do each other.74. It's hard to be by yourselfwithout hurting someone'sfeelings in our household.75. "Work before play" is the rulein our family.76. Watching T.V. is moreimportant than reading inour family.77. Family members go out a lot.78. The Bible is a very importantbook in our home.79. Money is not handled verycarefully in our family.80. Rules are pretty inflexible inour household.81. There is plenty of time an-'"-tention for everyone in (R..•family.82. There are a lot of spontaneousdiscussions in our family.83. In our family, we believe youdon't ever get anywhere byraising your voice.84. We are not really encouragedto speak up for ourselves inour family.85. Family members are oftencompared with others as tohow well they are doing atwork or school.86. Family members really likemusic, art and literature.87 Our main form of entertain-ment is watching T.V. orlistening to the radio.88. Family members believe thatif you sin you will be punished89. Dishes are usually doneimmediately after eating.90. You can't get away with muchin our family.38.39.40.41.Or 49• ApP FAIALY STRESS COPING ANO MUTH PROJECT• ‘dimb 000 Leman Ode*74:.15lemle UnIvenity at IMaaeaslaAledleon• /Vtl Macaw W1, 53706Family Health ProgramFORM B19810 H. McCubbinFIRMFAMILY INVENTORY OFRESOURCES FOR MANAGEMENTHamilton I. McCubbin Joan K. Comeau Jo A. HarkinsPURPOSEFIRM— Family Inventory of Resources for Management was developed to record what social, psycho-logical, community and financial resources families believe they have available to them in themanagement of family life.DIRECTIONSTo complete this inventory you are asked to read the list of "Family Statements" one at a time. In eachstatement, "family" means your immediate family (mother and/or father and children).Then ask yourself: "HOW WELL DOES THE STATEMENT DESCRIBE OUR FAMILY SITUATION?"Then make your decision by circling one of the following:® -, Not At All —This statement does not describe our family situation. This does not happenin our family.^ ,• = Minimally —This statement describes our family situation only s11ghtly. Our family may belike this once in a while. .0 = Moderately—This statement describes our family situation fairly well. Our family is like thissome of the time.® = Very Well —This statement describes our family very accurately. Our family is like thismost of the time.PLEASE BEGIN—Please read and record your decision for EACH and EVERY statement below.COMPUTER CODES:^IID 0 0 0 ^ GID ^ 0 ^ FAMID 0 ^ ^ CI,Describes Our Family:For Com • uter Use• •-`....4.11^partIftm....vvvya, .•^M. •••.^Ws have money coming In from our investments (such as rental property, stocks,'^bonds, reel Lilli",:li^3004; ^ 02^541 '19 Prvslcally tired much of the time Is a problem in our family 0^1^2^3 r 0^^3 W• have to nag each other to get things done 0^1^2^3 r^^^04 We do roR plan too far ahead because many things turn out to be a manor ofgood orzpo luck anyway 0^1^2 ' 0^0- 6 Our WM/ is as well adjusted as any family in this world can be 0^1^2^3 0^0g 11" 1 "2 (Adv ens person in tne family earning money is (or would be) a problem in„......W.11= 0^1^2 0^C^I ._- 7 It seems Wet member* of our family take each other for granted 0^1^2^3 r^^^0Sometime', we feel we don't have enough control over the direction our lives•,'^ere takfn, 0^1^2^3 0^El9^Certain members of our family do all the giving, while others do all the taking 0^1^2^3 r^■^0 1I , We dews, almost entirely upon financial support from welfare or otherpublic assi"renoe programs 0^1^2^3. r ^^011^We seem to pot off making decisions 0^1^2^3 r 0^^12 FornIlY members understand each other completely 0^1^2^3 0^^■^013^Our family Is under a lot of emotional stress 0^1^2^314^Many things seem to Interfere with family members being able to share concerns 0^1^2^3 r^^^015^Most of the money decisions are made by only one person In our family 0^1^2^3 r 0^^10 There are times when family members do things that make other members unhappy r 0^1^2^3 0^•17^It seems Pm we have more illness (colds. flu, etc•) in our family than other• 0. • do 0^1^2 • 0le^In our 1 em V some members have many responsibilities while others don'thave ',tout 1^2 0^019^No one could be happier than our family when we are together 0^1^2^3 0^[.320 It Is u0s411410 to our family when things don't work out as planned 0^1^2^3 r^^^021^We depend 'Wiest entirely on income from alimOny and/or child support .!1•0 Y . " -^1^..4^..^3 r^^ 0^ 122^Being sad or "down" is s problem in our family 0^1^2^3 0r^^^0'23 It Is hard to get family members to cooperate with each other 0^1^2^324^If our family hes tiny faults, we are not aware of them 0^1^2^3 0^025^We depend almost entirely on social security retirement Income —0.^1^2 ^3 r 0^028^Many times we feel we have little influence over the things that happen to us 0^1^2^3 r 0^•„ We have the Isms problems over and over—we don't seem to learn from past"^mistakes 0^1^2^3 ^ 028^One or more working members of our family are presently unemployed 0^1^2^3 r ^^029^There era things at home we need to do that we don't seem to get done 0^1^2^3 r^^^030^We feel our family is a perfect success 0^1^2^3 031^We own tend or property besides our place of residence 1^2^3r^0^0–37^We seem to be so involved with work and/or school activities that we don't spendenough time Ingather as a family _0^1^2^333^We own lore hnying) a home (single family, condominium, townhouse. etc.) 0^1^2^3 E..1^n34^There ere times when we do not feel a great deal of love and affection foreach other0^1^2^3 0^E3OCRM ,s[3: MI4^„^3 ^SFS RS SDRSDascribas Our Family:U ^UV, Ila^as35^If a close relative were having inancial problems we feel we could" afford to hal. them out 0 1 2 3 ^ 036 Friends seem to enjoy coming to our house for visits 0 1 2 3 ■37 We feel we have a good retirement Income program 0 1 2 3 •38 When we make plans we are almost certain we can make them work 0 1 2 3 ■39 In our family we understand what help we can expect from each other 0 1 2 3 ^ 040 We seem to have little or no problem paying our bills on time 0 1 2 3 Q ^41^Our relatives seem to take from us, but give little in return 0 1 2 3 ►^0^■42 We would have no problem getting a loan at a bank if we wanted one 0 1 2 3 0 ^YVe feel we have enough money on hand to cover smell unexpected expenses44„ (under $100) 0 1 2 3 ■^Q44 When we face a problem, we look st the good end bed of 'each possible solution 0 1 2 3 0^045 The memberls) who earn our family income seem to have good employee benefits(such as paid Insurance, stocks, car, education. et0.1^_ 0 1 2 3 ^0 046 No matter whet happens to us. we try to look at the bright side of things 0 1 2 3 ■^047 We feel we are able to go out to eat occasionally without hurting our budget 0 1 2 3 0^048 We try to keep in touch with our relatives as much as possible 0 1 2 3 Q ^49 11 seems that we need more life Insurance than we have 0 1 2 3 r^■^0„^In our family it Is "okay” for members to show our positive feelings about3U each other 0 1 2 ■^0We feel we are able to make financial contributions to a good cause (needy51^people, church, etc.) 0 1 2 3 ■^052 We seem to be happier with our lives than many families we know 0 1 2 3 ■^0„^It is "okay" for family members to express sadness by crying, even in front" of others 0 1 2 3 ^ 064 When we need something that can't be postponed, we have money in savings'7"^to cover it 0 1 2 3 0 ^66 We discuss our decisions with other family members before carrying them out 0 1 2 3 ■^056^Our reletivele) are willing to listen to our problems 0 1 2 3 0 ^.....• We worry about how we would cover a large unexpected bill (for home, autoDi^repairs, etc. for about 5100) 0 1 2 3 ■68 We get great eatiefeCtion when we can help one another in our fanny 0 1 2 3 •69^In our family we feel it Is important to save for the future 0 1 2 380 The working members of our faintly seem to be respected by their co-workers 0 1 2 3 •61^e have written checks knowing t are wasn't enough money In the account0 '^to cover it 01 2 3 f 0^^52 The members of our family respect one another 0 1 2 3 ■^083 We save our extra spending money for special things 0 1 2 3 0^II„ ,^We feel confident that if our main breadwinner lost his/her job. (s)heog could find another one 0 1 2 3 0^■85^Members of our family are encouraged to have their own interests and abilities 0 1 2 3 ^88^Our relatives do and say things to make us feel appreciated 0 1 2 3 0^■67^The members of our family are known to be good citizens and neighbors 0 1 2 3 • 068^We make an effort to help our relatives when we can 0 1 2 3 ^ 069^We feel we are financially better off now than we were 6 years ago 0 1 2 3 ■pp ■o„ r3q)RP m. DRen^8-1 •tn^nn

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