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Comparing parents' and nurses' identification and prioritization of parental needs in the context of… Graves, Carolyn Mary 1991

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COMPARING PARENTS' AND NURSES' IDENTIFICATION AND PRIORITIZATION OF PARENTAL NEEDS IN THE CONTEXT OF CARING FOR CHILDREN WITH CHRONIC CONDITIONS By CAROLYN MARY GRAVES B.N., McGiil University, 1965 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES The School of Nursing We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA April 1991 (c) Carolyn Mary Graves, 1991 c In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. The University of British Columbia Vancouver, Canada Department DE-6 (2/88) ii ABSTRACT Accurate assessment is the foundation on which effective nursing interventions rest. However, it is not known how accurately nurses identify and prioritize the needs of parents whose children have chronic conditions. When nurses proceed with interventions based on inaccurate assessments, the results can be unsuccessful interventions that neither meet parental needs nor provide optimal health care for this population of children. This descriptive comparative study was conducted to 1) examine parental needs identified and prioritized by parents of children with chronic conditions and their respective nurse care-givers, and 2) identify similarities and differences between the two groups. Patterns that evolved from these similarities and differences provide us with information related to where nurses have expertise or difficulty identifying and prioritizing the needs of parents. Kleinman's (1978) health care systems theory, which supports the premise that health care professionals and clients perceive health care episodes differently, provided the conceptual framework for this study. Study participants included 38 parents and 13 nurses who were affiliated with ten ambulatory programs in a Western Canadian pediatric hospital. Both groups completed the modified Family Needs Survey (Bailey & Simeonsson, 1988b) and socio-demographic tool developed by this investigator. Responses to the 35-item scale of the Family Needs Survey were described and ranked, in addition to being analyzed using inferential parametric statistics to determine differences between parents' and nurses' identification of parental needs. Responses to the open-ended question on the Survey were described and ranked. Research findings revealed some similarities and a number of striking differences between the responses of parents and nurses. On the 35-item scale, parents and nurses iii agreed that five parental needs were 1) information about current research, future services and treatments, 2) help locating competent regular or respite care providers, 3) reading material about other parents with a similar child, 4) opportunity to meet and talk with other parents, with a similar child, and 5) more time for self, spouse and other children. Both groups were consistent in their ranking of the first two needs as the most important needs in the information and community services subscales, respectively. However, nurses had generally higher responses on all subscales and identified eight more parental needs than did parents which were related to information, support, and family functioning. Parents and nurses repeated most of the above needs on the open-ended question, although nurses indicated that parents also had a number of needs related to psychosocial issues and family functioning. Nurses ranked counselling (child's condition, treatment, stress management) as the primary support need. Further, both groups differed in their prioritization of parental needs on the open-ended question. Where parents ranked information, community services, and support needs as the most important, nurses ranked support, information, and community services. The implications of these research findings for nursing practice and education are discussed and recommendations for future research are presented. iv T A B L E O F C O N T E N T S Page Abstract ii Table of Contents iv List of Tables vii List of Figures ix Acknowledgements x C H A P T E R O N E I N T R O D U C T I O N 1 Background to the Problem 1 Impact on the Provision of Child Health Care 2 Impact on the Family Unit 3 Impact on Health Care Professionals 4 Problem Statement 6 Purpose of the Study 6 Conceptual Framework 6 Definition of Terms 8 Research Question 9 Research Subquestions 9 Assumptions 9 Limitations 9 Significance of the Study 10 Summary 10 C H A P T E R T W O R E V I E W O F T H E L I T E R A T U R E 12 Parents' Identification and Prioritization of Parental Needs 12 Information Needs 13 Treatment Needs 14 Formal and Informal Support Needs 15 Material Support Needs 17 Competing Family Needs 18 Health Care Professionals' Identification and Prioritization of Parental Needs 21 Comparing Patients and Family Members with Health Care Professionals in the Identification and Prioritization of Client Needs 22 Summary 23 C H A P T E R T H R E E M E T H O D O L O G Y 25 Setting 25 Sample Selection and Selection Criteria 25 Instruments 26 Family Needs Survey j 27 Validity ' 28 V Page Reliability 28 Socio-demographic Tool for Parents 29 Socio-demographic Tool for Nurses 30 Data Collection 30 Parent Data Collection 30 Nurse Data Collection 31 Data Analysis 31 Family Needs Survey Data 31 Socio-demographic Data 32 Protection of Human Rights 33 Summary 33 CHAPTER FOUR PRESENTATION A N D DISCUSSION OF FINDINGS 35 Description of Study Participants 35 Parents 35 Age 35 Education 35 Marital Status 35 First Language Used at Home 36 Travel Time to the Ambulatory Program 36 Gender of the Children 36 Diagnoses of the Children 36 Times of Children's Diagnoses 36 Other Children in the Family 37 Other Children in the Family with Chronic Conditions 38 Nurses 38 Education 38 Background in Childhood Chronic Conditions 38 Parent Responses on the Family Needs Survey 39 Nurse Responses on the Family Needs Survey 53 Comparison of Parents' and Nurses' Responses on the Family Needs Survey 65 Summary 80 C H A P T E R FIVE S U M M A R Y , CONCLUSIONS, IMPLICATIONS, A N D RECOMMENDATIONS 86 Summary 86 Conclusions 89 Implications for Nursing Practice 90 Implications for Nursing Education 93 Recommendations for Further Research 94 REFERENCES 96 vi Page APPENDICES Appendix A Family Needs Survey (Parents) 103 Appendix B Family Needs Survey (Nurses) 108 Appendix C Socio-demographic Tool (Parents) 113 Appendix D Socio-demographic Tool (Nurses) 116 Appendix E Information for Study Participants (Parents) 118 Appendix F Information for Study Participants (Nurses) 120 Appendix G Information for Program Directors 123 Appendix H Consent for Participation in the Study (Parents) 125 Appendix I Consent for Participation in the Study (Nurses) 127 Appendix J Group Means and Standard Deviations for Family 129 Needs Survey Subscales vii LIST OF TABLES Table Page 1. Frequency Distribution of Parents by Age Group 35 2. Frequency Distribution of Parents by Marital Status 36 3. Frequency Distribution of Children's Diagnoses 37 4. Distribution of Nurse Participants by Background and Time 39 5. Parent Response Frequencies and Ranked Means for Information Needs 40 6. Parent Response Frequencies and Ranked Means for Support Needs 42 7. Parent Response Frequencies and Ranked Means for Explaining to Others Needs 45 8. Parent Response Frequencies and Ranked Means for Community Services Needs 46 9. Parent Response Frequencies and Ranked Means for Financial Needs 47 10. Parent Response Frequencies and Ranked Means for Family Functioning Needs 49 11. Parental Needs Identified and Prioritized According to 32 Parent Responses 51 12. Nurse Response Frequencies and Ranked Means for Information Needs 54 13. Nurse Response Frequencies and Ranked Means for Support Needs 56 14. Nurse Response Frequencies and Ranked Means for Explaining to Others Needs 58 15. Nurse Response Frequencies and Ranked Means for Community Services Needs 59 16. Nurse Response Frequencies and Ranked Means for Financial Needs 60 17. Nurse Response Frequencies and Ranked Means for Family Functioning Needs 61 18. Parental Needs Identified and Prioritized According to 38 Nurse Responses 62 viii Table Page 19. Group Comparison for Information Needs 66 20. Group Comparison for Support Needs 69 21. Group Comparison for Explaining to Others Needs 72 22. Group Comparison for Community Services Needs 73 23. Group Comparison for Financial Needs 75 24. Group Comparison for Family Functioning Needs 76 ix LIST OF FIGURES Figure Page 1. Graphic comparison of group means for Information Needs 67 2. Graphic comparison of group means for Support Needs 70 3. Graphic comparison of group means for Explaining to Others Needs 73 4. Graphic comparison of group means for Community Services Needs 74 5. Graphic comparison of group means for Financial Needs 76 6. Graphic comparison of group means for Family Functioning Needs 77 X A C K N O W L E D G E M E N T S I am very grateful for the family and friends that I have. Their love, humour, and undying interest in my endeavours never failed to inspire me to carry on to the end of the road. I would like to thank Professors Carole Robinson and Marilyn Willman whose expertise and confidence in my abilities guided me through the research process. Also, I would like to extend my thanks to Professor Harold Ratzlaff who patiently de-mystified quantitative research and statistical analyses for me. Many thanks are due to the nursing and medical staff affiliated with the ambulatory programs of the hospital in which this research was conducted. Their interest and support in facilitating this research were greatly appreciated. Special thanks are due to the parents who took time from their busy schedules to contribute to a body of knowledge that will enhance health care for this special group of children. CHAPTER ONE Introduction The provision of health care services for children with chronic conditions during the past thirty years has not adequately recognized the support needs of their family members, especially parents who are the primary caregivers (Shelton, Jeppson, & Johnson, 1987). This trend is changing, however, with increasing numbers of these children being followed in pediatric ambulatory programs where parents and health care professionals, particularly nurses, work together balancing professional recommendations with parental needs. Parents experience a variety of needs as they provide care for their children with chronic conditions and, at the same time, attempt to maintain the integrity of the family unit. Professional literature supports the view that parents and nurses may differ in their identification and prioritization of parental needs based on different beliefs, experiences, norms, and values. Consequently, these different perceptions can interfere with the parent-nurse relationship resulting in unsuccessful nursing interventions, unfulfilled parental needs, and less than optimal care for children with chronic conditions. It is important to investigate how accurately nurses identify and prioritize parental needs as a first step in supporting parents in their roles of primary care-givers. Background to the Problem To provide a background to the problem, the impact of childhood chronic conditions is addressed from the perspectives of 1) child health care in Canada and the United States; 2) the family unit, where chronic conditions are managed primarily by the parents; and 3) health care providers, specifically nurses in pediatric ambulatory settings, who intervene with parents to diminish the disruptive effects of chronic conditions on individual family members. 1 2 Impact on the Provision of Child Care Children with chronic conditions such as diabetes, seizure disorders, renal disorders, spina bifida, cystic fibrosis, and juvenile rheumatoid arthritis represent a growing population (Ireys, 3981; Harkey, 1983; Rose & Thomas, 1987; Stein, 1989; Stein & Jessop, 1982). A recent American study claims that 10 to 15 % of children under the age of eighteen are afflicted with a chronic condition (Hobbs, Perrin, & Ireys, 1985). Some factors which have contributed to the numbers of children with chronic conditions surviving into adulthood are immunization programs, antibiotic therapy, and disease specific treatments resulting from advanced biomedical research and technology (Stein & Jessop, 1982). The degree of concern expressed by health care specialists regarding the quality of care provided for children with chronic conditions has paralleled their growing numbers (Hobbs et al. 1985; Holaday, 1989; Ireys, 1981; McCollum, 1981; Rose & Thomas, 1987; Seligman & Darling, 1989; Shelton et al. 1987; Stein, 1989). This concern has been fostered by the need for these children to have multiple support services as well as the escalating health care expenditures associated with these services. Not only are children with chronic conditions dependent on current technology and a variety of specialized health care interventions, but the components of their care must also address growth and development of the physical, social, psychological, [and spiritual] needs common to all children (Mattson, 1972; Pless & Pinkerton, 1975; Rogers, Hillemeier, O'Neill, & Shomen, 1981; Sperling, 1978; Stein, 1989). Consequently, the expenditure of health care dollars escalates since these children may, directly or indirectly, utilize a comprehensive list of "medical, physical, and social services; hospital and ambulatory care...; family support services; physical, speech, & occupational therapy, and psychiatric counselling" (Rowland, 1989, p. 17). Providing health care services for children with chronic conditions has had a 3 significant impact on government fiscal deficits, forcing legislative bodies at all levels to impose funding restraints on health care organizations. With limited funding, these organizations have had to devise innovative ways to continue to provide services for this population of children. A recent trend has been the increased use of ambulatory services, reducing the number and length of costly in-patient hospitalizations (Christoffel & Loewenthal, 1977). This trend has resulted in multidisciplinary program team members, particularly nurses, and parents taking on more responsibility for the management of these children (Schade & Passo, 1981). Parents, in partnership with nurses, strive to maintain the integrity of their family units, and in so doing develop a variety of needs related to their children with chronic conditions and those of the individual family members. Impact on the Family Unit A child with a chronic condition affects every member of the family unit. (Anderson, 1981; Bailey & Simeonsson, 1988a; Canam, 1987; Gallagher & Powell, 1989; Hobbs et al. 1985; Johnson & Steele, 1983; Knafl & Deatrick, 1986; Rose & Thomas, 1987; Seligman & Darling, 1989; Shelton et al. 1987; Thorne & Robinson, 1988; Turnbull & Turnbull, 1985; Zamerowski, 1982). However, parents, as the primary care-givers in the family unit, are particularly affected as they attempt to ensure the fulfilment of needs for their child with a chronic condition as well as those of other family members (Hodges & Parker, 1987; Krulik, 1980; Sherman, 1980; Strauss & Munton, 1985; Tavormina, Boll, Luscomb, & Taylor, 1981; Trahd, 1986; Weyhing, 1983). Six distinct areas of needs identified by parents are 1) information (diagnosis, prognosis, and treatment); 2) treatment for the child (medical, therapeutic, and educational); 3) formal support (public and private agencies); 4) informal support (relatives, friends, neighbours, co-workers, other parents); 5) material support (financial and access 4 to resources); and 6) elimination of competing family needs (Seligman & Darling, 1989). Parents perceive, label, explain, evaluate, and respond to these needs by means of an interplay of personal, family, social, and cultural factors (Aponte, 1985; Bailey & Simeonsson, 1988a; Kleinman, 1978). Further, they tend to act upon needs which they have personally identified and prioritized as opposed to those identified and prioritized by health care providers (Bailey, 1987; Dunst & Leet, 1987; Mulick, 1983; Seligman & Darling, 1989; Shelton et al. 1987). Therefore, when health care professionals intervene on behalf of children with chronic conditions, it is important for them to support parents by addressing needs that are real to parents. This is an important component of the intervention process because parents are the primary mediators between their children with chronic conditions and health care providers. Impact on Health Care Professionals Health care professionals in a variety of settings have numerous encounters with parents of children with chronic conditions. Many of these encounters occur in ambulatory care settings where such children are followed by one or several multidisciplinary program teams. Nurses on these teams are increasingly involved in issues surrounding the management of these children, such as the promotion of physical well-being along with educational, emotional, and social life experiences that will provide the child with the necessary skills to lead a productive life (Stein, 1989). Such a holistic approach to care places more pressure on nurses to acquire a broader knowledge base that incorporates a knowledge of families, their structure, functioning, and developmental stages (Friedman, 1986; Wright & Leahy, 1987). Because of this expanding knowledge base, nurses are expected to be able to assess and intervene in relation to parental needs that evolve from caring for children with chronic conditions. In order for nursing interventions to be 5 successful, nurses must accurately identify and prioritize parental needs in the assessment phase of the nursing process. Accurate assessments are promoted by collaborative nursing practice whereby nurses and parents jointly identify and prioritize needs (Gohsman, 1977; Holaday, 1989; Horner, Rawlins, & Giles, 1987; Leavitt, 1989; Passo-Coffman, 1983). Nurses may not collaborate with parents because they consider themselves to be the experts. If nurses follow this prescriptive type of traditional nursing practice, nursing interventions may result in 1) parental non-compliance with prescribed treatments or recommendations, 2) ineffectual nurse-parent interactions, 3) family and nurse dissatisfaction, and 4) unrewarded and expensive expenditure of time and energy for parents and nurses alike (Dunst & Trivette, 1989; Rose & Thomas, 1987). Studies supporting the position that health care professionals may be off-target in their perceptions of family needs are found in neonatal care (Young, Creighton, & Sauve, 1988), acute and critical care nursing (Johnson, Nelson, & Brunquell, 1988; Lauer, Murphy, & Powers, 1982; Lilley, 1987; Matheson, 1987; O'Neill Norris & Grove, 1986), and developmental and behavioral pediatrics (Dunst & Leet, 1986). In summation, chronic conditions in children have a significant impact on the health care system, on families, and on health care professionals. It is cost effective, in both monetary and human terms, for children to be cared for primarily by their families. However, these families and, in particular, parents require support which must meet needs that are meaningful to them. Therefore, it is timely that we examine the accuracy with which nurses in a pediatric ambulatory setting identify and prioritize parental needs as a first step towards nursing interventions that strengthen parents' positions as primary care-givers within family units. 6 Problem Statement Accurate assessment is the foundation on which effective nursing interventions rest. However, it is not known how accurately nurses identify and prioritize the needs of parents whose children have chronic conditions. When nurses proceed with interventions based on inaccurate assessments, the results can be unsuccessful interventions that do not meet parental needs. Unfulfilled parental needs can have a significant impact on the integrity of family units and on the level of care that children with chronic conditions receive. Purpose of the Study The purpose for doing this study was twofold. First, the researcher proposed to examine how accurately a particular group of nurses in a pediatric ambulatory setting identify and prioritize parental needs in the context of caring for a child with a chronic condition. Second, the researcher proposed to identify similarities and differences between parents' and nurses' identification and prioritization of parental needs. Patterns that evolved from these similarities and differences provide information related to where nurses have expertise or difficulty identifying and prioritizing parental needs. Conceptual Framework Kleinman's (1978) analysis of the health care system provided the conceptual framework for this study. The framework looks at health, illness, and health care from a broader perspective than the traditional biomedical perspective of Western Society's professional health care institutions. That is, health, illness, and health care are defined as cultural systems and, like all cultural systems, they are comprised of beliefs, experiences, norms, and values which interrelate to form patterns of behavior. Individuals experience, explain, and cope with health-related episodes as a result of their patterns of behaviour. Kleinman labels these ways of explaining health, illness, and health care as explanatory 7 models. The structure of Kleinman's health care system contains three sectors differentiated by unique explanatory models: the popular (family, social network, and community), the professional (scientific medicine, and healing traditions), and the folk (non-professional healing specialists). For the purposes of this study, only the popular sector (representing parents of children with chronic conditions), and the professional sector (representing the nurse care-givers) were considered. Referring to the popular sector, Kleinman argues that one family member cannot be studied in isolation, but rather that parents and child must be studied in the context of the family, social network, and community. In describing the explanatory models of the professional and the popular sectors, Kleinman makes a fundamental distinction between "illness" and "disease." The popular sector, according to Kleinman, bases its explanatory models on illness which is "culturally shaped in the sense that how we perceive, experience, and cope with disease is based on our explanations of sickness, explanations specific to the social positions we occupy and systems of meaning we employ" (Kleinman, 1978, p. 252). On the other hand, the professional sector's explanatory models are traditionally associated with disease. Disease is the malfunctioning of the individual's biologic and psychophysiologic processes. When one looks at the professional sector, one sees that nurses have been traditionally influenced by the biomedical model that stresses the treatment and management of disease. As a result of this traditional influence, nurses may have tended to employ a prescriptive type of nursing practice that does not consider the treatment and management of disease from the family's perspective. In other words, nursing interventions may proceed without the benefit of family systems theory and collaborative nursing practice, whereby nurses and parents work together based on a common understanding. 8 This conceptual framework supports the view that explanatory models of parents and nurses can differ in health related episodes, which may impede the provision of optimal health care if unacknowledged. Nurses need to start identifying where the differences in perspectives are and to collaborate with parents in setting mutually defined priorities and goals. Definition of Terms For the purposes of this study the following terms were used. Chronic condition: "Any anatomic or physiological impairment that interferes with an individual's ability to function in the environment. Chronic conditions are characterized by relatively stable periods that may be interrupted by acute episodes requiring hospitalization or medical attention. The individual's prognosis varies between a normal life span and unpredictable early death. Chronic conditions are rarely cured, but they are managed through individual and family effort and diligence" (Thomas, 1984, p.5). Chronic condition and chronic illness are used interchangeably in the literature, but the researcher has chosen to use the term chronic condition since it more appropriately describes a physical health problem that is not necessarily an illness. Parent: The role of a parent is to nurture a child. The nurturing of a child's physical, psychological, moral, and social being occurs through the actions of providing care for, protecting, loving, guiding, educating, and disciplining. Parents can be biological, adoptive, or surrogate parents. Surrogate parent refers to any person who takes on a parenting role. Personal Needs: "An awareness on the part of the family member of a physical, psychological, or social requirement which, if met, relieves his [or her] stress to some degree and partially restores his [or her] equilibrium" (Mathis, 1984, p. 37). 9 Research Question The question to be answered by this research is as follows: Do parents of children with chronic conditions, four years of age and under, and ambulatory nurses agree in their identification and prioritization of parental needs? Research Subquestions The research subquestions are as follows: (1) What needs are identified by parents and how are they prioritized? (2) What parental needs are identified by nurses and how are they prioritized? (3) What are the similarities and differences in parental needs as identified and prioritized by parents and nurses? Assumptions The assumptions inherent in this study are as follows: (1) Parents can accurately identify and prioritize their own needs. (2) Parents will have common needs regardless of the chronic conditions experienced by their children. (3) Nurses are able to identify the needs of parents whose children have chronic conditions and for whom they are providing care. Limitations This study has several limitations. First, concentrating the research within one hospital in one geographical area limits the generalizability of the study. Second, the researcher had to rely on each nurse participant to compile an accurate list of families on her caseload who met the study's parent selection criteria. Third, even though the Family Needs Survey contains one open-ended question about the identification and prioritization of parental needs, the needs identified on the survey are predetermined. Fourth, the 10 Family Needs Survey is somewhat limited in view of the variable reliability scores obtained during its field testing. The low subscale scores obtained on subscales with fewer needs items may be accounted for by scaling theory which links short subscales to poorer reliability (H. Ratzlaff, personal communication, March 9, 1990). Significance of the Study The importance of fulfilling parental needs has been well documented in the behavioral sciences literature and, more recently, in the early childhood, special education, and nursing literature (Bailey & Simeonsson, 1988a, 1988b; Rose & Thomas, 1987; Terkelson, 1980). According to some nursing theorists, "the maintenance of the integrity and fulfilment of human needs to assure optimal wellness comprises the territory of nursing practice" (Yura & Walsh, 1988, p. 105). However, little nursing research been done in this area, particularly in relationship to parents who have children with chronic conditions. This paucity of research, along with the researcher's personal and clinical experience, provided a major impetus to study how accurately nurses identify and prioritize parental needs. Nurses working in partnership with parents need more information upon which to base their nursing interventions. More information will have a significant impact on the ways in which nurses contribute to "the maintenance of the integrity and fulfilment of [parental] needs" (Yura & Walsh, 1988), and ultimately how successful their nursing interventions will be. When parental needs are fulfilled, children with chronic conditions will reap the benefits of optimal health care. Summary This chapter has introduced the study by defining the problem, the purpose of the study, and the research questions and subquestions. In addition, the conceptual framework that guided this research was discussed. It is clear from studying this framework that when 11 a parent and a nurse co-manage the care of a child with a chronic condition they may be using different explanatory models to identify and prioritize parental needs. This practice may impede the provision of optimal health care if unacknowledged. The researcher has designed this study to provide more insight into how accurately parental needs are identified and prioritized by nurses and parents in the context of caring for children with chronic conditions. The results of this study will enhance nurses' understanding of where they have expertise or difficulty identifying and prioritizing the needs of parents. The following chapter will discuss the literature related to the identification and prioritization of parental needs from the perspectives of parents and health care professionals, in addition to the literature related to comparing perspectives of patients and family members with those of health care professionals. CHAPTER TWO Review of the Literature The literature review focuses on current literature and studies across disciplines that deal with the topic of identifying and prioritizing the needs of parents whose children have chronic conditions. The topic is addressed from the perspectives of parents and health care professionals, including a comparison of these perspectives. Parents' Identification and Prioritization of Parental Needs Families with a chronically ill child confront challenges and bear burdens unknown to other families. The shock of the initial diagnosis and the urgent, compelling need for knowledge; the exhausting nature of constant care unpredictably punctuated by crisis; the many and persistent financial concerns; the continued witnessing of a child's pain; tensions with one's spouse that can be aggravated by the fatiguing chronicity of care; the worries about the well-being of other children; and the multitude of questions involving the fair distribution within the family of time, money, and concern-these are the challenges that parents of a chronically ill child must face (Hobbs et al. 1985, p. 80). Current literature supports the fact that illness in children is primarily managed in the home and that the parents are the primary mediators between the nurse and the family system. As primary mediators, parents attempt to provide environments that satisfy most life-sustaining and growth enhancing needs for themselves and their family members (Terkelson, 1980). When one of the family members is a child with a chronic condition, extraordinary needs evolve that affect all family members, particularly the parents (Bailey & Simeonsson, 1988a, 1988b; Darling, 1989; Featherstone, 1980; Hobbs et al. 1985; Rose & Thomas, 1987; 13 Shelton et al. 1987; Turnbull & Turnbull, 1985; Wright & Leahey, 1987). These extraordinary needs are not rooted in the specific chronic condition, but in the generic features common to all chronic conditions (Patterson & McCubbin, 1983; Pless & Pinkerton, 1975; Rose & Thomas, 1987; Stein & Jessop, 1982; Thomas, 1984). Patterson and McCubbin (1983) describe these generic features as recurrent grief, strained interpersonal relationships, career alterations, financial burden, modified activities/goals, housing adaptation, social isolation, reduction in leisure time, and increased task-related responsibilities for all family members. Other generic features that are reported by parents are disrupted routines, lack of privacy, reduced time together as a couple, sleep and/or eating disorders, and fatigue (Rose & Thomas, 1987). One British Isles study reported that mothers of children with chronic conditions had significantly more instances of fair to poor health than mothers of healthy children (Pless & Douglas, 1971). More recently, McKeever (1981) studied the fathering of chronically ill children and found that all the fathers in her study had health problems such as duodenal ulcers, headaches, anxiety, hypertension, and obesity. The six distinct areas of needs, as outlined by Seligman and Darling (1989), are used to organize the following discussion. Information Needs In relation to information needs, parents repeatedly identify the need for current information regarding their child's chronic condition and treatment (Gilliss, Highley, Roberts, & Martinson, 1989; Horner et al. 1987; Passo-Coffman, 1983; Schade & Passo, 1981; Seligman & Darling, 1989; Strauss & Munton, 1985). Furthermore, parents stress the need for information that is understandable and presented in manageable doses (Hodges & Parker, 1987; Shelton et al. 1987; Sherman, 1980). Parents not only want this type of 14 information at the time that their child is discharged from hospital with a chronic condition, but also during the outpatient management period (Young, Creighton, & Sauve, 1988). Other important informational needs are knowledge of how the health care system works and what services it provides (Bailey & Simeonsson, 1988a; Horner et al. 1987; Passo-Coffman, 1983; Strauss & Munton, 1985). One particular study by Horner, Rawlins, and Giles (1987) specifically discusses the information needs of parents. The researchers studied parental perceptions of program, socioeconomic, and health care needs in their survey of 493 families with chronically ill or handicapped children. Nearly 41% of these children ranged from one to five years of age. A total of 164 questionnaires (87% by mothers and 9% by fathers) were completed. Seventy-six percent of the respondents were from two parent families and 87% were Caucasian. The average income of this group was $15,000 to $20,000 (US). Parents identified their greatest informational needs in the areas of 1) planning for their child's future (55%), 2) identifying appropriate community resources (49%), 3) understanding how the illness or disability affects their child's physical and emotional growth (45%), 4) improving communication among the child's health care providers (44%), and 5) finding ways to provide for the child's emotional, social, and intellectual needs (43%). Treatment Needs Parental needs related to the treatment of the child with a chronic condition encompass more than treatment of the child's medical condition. According to Mattson (1972), parents are also concerned about their child's physical, [social], and emotional growth and development. A child's growth and development in the infant and preschool period is strongly influenced by the quality of the parent-child relationship which forms the basis of a child's lifetime relationships. According to Bailey & Simeonsson (1988a), it is 15 through these parental attachments or social interactions that a child learns and practices cognitive, language, self-help, social, and motor skills. Holaday (1989) states that infants with chronic conditions may lack the behaviours that promote these parental attachments, leaving parents with feelings of ineffectiveness and helplessness. Further, when a chronic condition interferes with a child's mastery of these important skills, the child is frequently left with a sense of failure leading to ongoing psychosocial problems (Hobbs et al. 1981). Therefore, parents need help dealing with the therapeutic and educational aspects of treatment such as educating their child to become less dependent on them, promoting their child's self-image, in addition to helping their child to develop better impulse control so that s(he) is better equipped to have successful relationships. Formal and Informal Support Needs In relation to formal and informal support needs, Horner et al. (1987) found that parents needed assistance in the following areas: finances, recreation for their child, educational opportunities, child care, family dynamics, managing the chronic condition, ongoing parent support from other parents, and training in home therapy techniques. Parents also indicated that they were frustrated with waiting too long for appointments, having difficulty booking and coordinating appointments with various specialists, obtaining answers to their questions between and during clinic visits, travelling to and from appointments, and impersonal treatment by professionals. A number of authors discuss the parental need of finding appropriate child care providers and child care facilities (Bailey & Simeonsson, 1988a; Johnson & Steele, 1983; Turnbull & Turnbull, 1985: Weyhing, 1983). Competency and willingness appear to be two important factors that parents consider when looking for people to care for their child. Parents are reported to need someone who will listen to them as they attempt to sort 16 out their "cognitive and emotional confusion" (Fortier & Wanless, 1984). The need to "tell the story" and express anger and sadness is ongoing (Bristor, 1984). Canam (1987) studied 36 parents of chronically ill children to determine how parents communicate about their child's illness within the family. Results of this study showed that parents had a need to talk about their feelings to someone they perceived as wanting to listen. These findings imply that if parents have this need fulfilled for themselves, they in turn can be receptive to their children when they have a need to talk about how they feel. The parents cited in the study of Young et al. (1988) specified the need for more spousal support, as well as improved coordination of services between hospital and community, and better in-service training for community-based professionals who consulted with them. Another study elicited some interesting data related to the support needs of 34 sets of parents with young handicapped children who were participating in home-based intervention programs (Bailey & Simeonsson, 1988b). The children had a mean cognitive development quotient of 66 and a mean motor development quotient of 57. Their average age was 14 months and 85% were Caucasian. Forty-seven percent of the families were at the lower socioeconomic level. Data obtained from the open-ended question on the researchers' Family Needs Survey showed that both mothers and fathers expressed the need for more time alone with their spouse, as well as more support in dealing with 1) surgery; 2) feelings of guilt, fatigue, religious doubts; and 3) stress associated with in-laws and other extended family members. Uncertainty about the future was the most commonly stated concern, indicating a significant need for support in that area. Strauss and Munton (1985) studied a smaller group of 16 professional middle class parents of infants and toddlers, who were developmentally delayed for a variety of reasons. While these parents identified many of the needs Identified in the above studies, they 17 expressed some very specific needs related to having hope for the future. They wanted to be given reasons for hope as well as to receive positive feedback about their child's cognitive, social, emotional, and motor development, regardless of the child's progress. Overriding these specific needs appears to be the need for support in coping with grief and depression. For most parents, periods of grief and depression are ongoing, and this phenomenon is generally acknowledged as "chronic sorrow" (Jackson, 1985; Olshansky, 1962; Wikler, Wasow, & Hatfield, 1981). Chronic sorrow never goes away and may be accentuated for parents at each new crisis or developmental stage that their child passes through. Material Support Needs In relation to material support, it is well known that having a child with a chronic condition places more financial strains on the family. "Slowly at times, but often quite dramatically, the care of a [child with a chronic condition] drains the family's purse" (Hobbs et al. 1985). These expenditures can include such items as "special foods, transportation to the hospital, fees for a baby-sitter for the other children while parents are at the hospital, time lost from work or school, modifications in the home, a special bed, cosmetic devices to cover unavoidable disfigurements, syringes and Band-Aids, urine testing kits, and extra diapers" (Hobbs et al. 1985, p. 89). These authors state that while there is inconclusive evidence to determine the full impact of a child's chronic condition on the parents' productivity, it seems clear that two trends have developed. First, mothers limit their participation in the work force or refrain from pursuing a career because of the responsibilities associated with having a child with a chronic condition. Second, many fathers are hindered from pursuing a financially more rewarding career because the family needs to locate close to appropriate health care and educational services. 18 Competing Family Needs Parents of children with chronic conditions are continuously placed in the position of trying to maintain a balance between competing family needs. According to Hobbs et al. (1985), failure to maintain this balance has resulted in a higher level of marital tension and distress for parents whose child has a chronic condition compared with parents who have healthy children. Korn, Chess, and Fernandez (1978) suggest that, in some cases, the child with the chronic condition may become the focal point or scapegoat for marital discord. Other family members affected by a child's chronic condition are the siblings. Horner et al. (1987) studied how parents of children with chronic conditions perceived their own needs, and found that parents wanted help in dealing with sibling acceptance. Siblings have difficulty accepting a brother or sister with a chronic condition because of ambivalent feelings (Sieman, 1984). The ambivalance and associated emotional turmoil faced by siblings occur as a result of a paradoxical situation. On the one hand they long to be special in the eyes of their parents, seeking assurance that they hold a unique place in the family structure. Outside the family, siblings reject uniqueness and desperately want to be like other children and their families. Having a sister or brother with a chronic condition often makes it difficult for siblings to achieve either goal. Also, "it is they who have to explain, defend, and mediate, torn between their own need for friends and protection of a brother or sister who may be rejected or teased" (Sieman, 1984, p. 298). A number of studies identify variables that influence parents' identification and prioritization of needs (Anderson & Chung, 1982; Bailey & Simeonsson, 1988b; Passo-Coffman, 1983; Rawlins & Horner, 1988; Schade & Passo, 1981; Winkel, 1988; Young, Creighton, & Sauve, 1988). The more common variables identified are age, sex, marital status, socioeconomic level, education, culture, and geographical location. 19 Three studies link younger parents with a greater need for more information and support (Passo-Coffman, 1983; Schade & Passo, 1981; and Winkel, 1988). Passo-Coffman (1983) determined that younger mothers (20-29 years of age) with young children have the greatest number of needs. These findings support the earlier findings of Schade and Passo (1981) that younger parents with shorter clinic attendance had more concerns to discuss with the clinic nurse than did the older parents. Winkel (1988) states that younger parents of more recently diagnosed children have the greatest needs for support and information. The researcher also found that more mothers and parents under 40 years of age wanted to join a parent support group. Bailey and Simeonsson (1988b) provide further insight into how differently needs are identified and prioritized by mothers and fathers. Mothers showed a greater degree of need than fathers for time to themselves; reading materials about children similar to their own; contact with other parents with children similar to their own; learning how to respond to friends, neighbours and strangers; and help in knowing how to explain their child's condition to other children. Mothers were also more open to expressing a need for help in discussing problems and reaching solutions, supporting one another during difficult times, and getting involved in recreation activities. Rawlins and Horner (1988) identify a rlationship between marital status and the need for support. The researchers compared the needs of parents participating in a support group (40.3%) with those of parents not participating (59.7%) and found that the members of the non-participant group, which had a higher percentage of single parents, asked more basic questions about routine child care, therapy, and immunizations. The results of this study suggest that the stresses of total parenting responsibilities and lower income may make it more difficult for single parents to move beyond basic needs. 20 The findings of Schade and Passo (1981) suggest a relationship between educational levels of parents and their need for support in attempting to meet their childrens' informational and support needs. The investigators found that less educated parents with older children identified a greater number of concerns for the clinic nurse to discuss with their children than did the better educated parents. Anderson and Chung (1982) address cultural differences in their qualitative study of seven Caucasian and six Chinese parents whose children had chronic conditions. The researchers found that Caucasian parents exhibited a need to normalize their children's illness experiences, whereas Chinese parents needed to maintain their children's contentment and happiness during the illness experiences. Young et al. (1988) identified a relationship between the type of support needed by parents and the geographical area in which they live. These investigators compared 44 parents' and 20 health professionals' perceptions of the practical and social/emotional needs of families whose infants were discharged home on continuous oxygen therapy. Results of this study showed that parents in rural areas preferred one-to-one support from another parent or family, while parents in small urban areas preferred group support. Parents in the city, with group support already in place, stressed the need for baby-sitting services. The literature and studies discussed in the preceding paragraphs identify a variety of parental needs described by parents of children with chronic conditions. Specific studies indicate that parents identify and prioritize needs according to their own individual situation such as their age, sex, marital status, socioeconomic level, education, culture, and geographical location. 21 Health Care Professionals' Identification and  Prioritization of Parental Needs Traditionally, the identification and prioritization of parent needs have been based on independent assessments made by health care professionals (Bailey, 1987; Darling, 1989). Professionals have persisted with this approach to "promote professional socialization, transdisciplinary understanding, rewards, ease of intervention, and professional dominance" (Darling, 1989, p. 26). However, this approach does not consider the parents' perceptions of their own needs, nor does it lead to accurate assessments of their needs by professionals. It is well documented in the literature that needs may be identified and prioritized differently by health care professionals and parents (Bailey, 1987; Bailey & Simeonsson, 1988a, 1988b; Darling, 1989; Dunst & Leet, 1987; Gohsman, 1977; Horner et al. 1987; Leavitt, 1989; Mulick, 1983; Wikler et al. 1981). Factors which may explain these differences in perceptions are 1) lack of parent motivation because parents do not see the relevance of professional suggestions, or because they lack the time, energy, and resources to follow through on professional suggestions; 2) professionals' limited insight into family needs and priorities, and 3) professionals' limited ability to motivate parents (Bailey, 1987). Not only do health care professionals and family members differ in their identification and prioritization of the family members' needs, but in some situations professionals do not see that identifying and prioritizing parental needs is part of their nursing role. Yoder and Jones's (1982) study of emergency room patients as seen through the eyes of emergency room nurses sheds some light on this point of view. The authors discovered that some nurses did not see the presence of the family members as an opportunity for assessing their needs. Further, the nurses did not perceive caring for the family members' emotional needs as a realistic expectation. Reasons for these viewpoints 22 were cited by the researchers as inadequate staff and time, the acuteness of the situation, and the lack of proper training and skills in interpersonal techniques. The literature discussed in the preceding paragraphs suggests that health care professionals may identify and prioritize family members' needs from an ethnocentric point of view, and that family members and professionals may identify and prioritize needs differently. One study from emergency care has implications for the care of children with chronic conditions because it suggests that the assessment of family members' needs is not an expectation that all nurses have of their nursing roles. Comparing Patients and Family Members with Health Care  Professionals in the Identification and Prioritization of Client Needs Focusing on the nursing literature, the author was struck by the paucity of comparative needs identification studies in the area of childhood chronic conditions. One comparative study was found in the field of neonatal care (Young et al. 1988) and a number of studies were found further afield in the specialties of adult critical and acute care (Lauer et al.1982; Lilley, 1987; Matheson, 1987; O'Neill Norris, & Grove, 1986). While the latter studies do not address chronic conditions or pediatrics, they do provide insight into similarities and differences in the identification and prioritization of needs between health care professionals and patients or other family members. The results of these studies reveal that while professionals, patients, parents, and other family members identify needs in similar fashion, there are also some significant differences. For example, Young et al. (1988) studied the practical and social/emotional needs of families whose infants were discharged home on continuous oxygen therapy, and found that nurses and parents differed significantly on their perceptions of when parent relief was needed. Conducting semi-structured interviews, the researchers discovered that 23 health care professionals perceived this need to be present at the time of the infants' discharges from hospital while parents did not perceive this need until a considerable period of time had elapsed. Significant differences were described in two of the adult critical and acute care studies (Lauer et al. 1982; Matheson, 1987), and were related to the patients' or family members' needs for specific information about their diagnoses, diagnostic procedures, treatments, and prognoses. Health professionals did not see this need as being as important as the need for help with the management of daily activities. Several studies (Lilley, 1987; O'Neill Norris, & Grove, 1986) identify significant differences related to the need for psychosocial support. The nurses in Lilley's (1987) study ranked physiological needs highest while their patients ranked emotional, spiritual, and psychosocial needs highest. The family members in O'Neill Norris and Grove's study identified a need that centred around hope for the future. This need was not identified as a high priority need by the nurses in the study. The comparative studies discussed in the preceding paragraphs show that there may be some nursing situations where health care professionals do not always agree with patients, parents, or other family members when identifying and prioritizing the other groups' needs. Summary In summary, this review of the current literature supports the view that parents of children with chronic conditions have a variety of needs. In caring for children with chronic conditions, health care professionals may identify and prioritize parental needs based on their own ethnocentric views or may not consider identifying or meeting family member's needs as a realistic part of their role. One study in neonatal care and a number of studies 24 found in adult critical/acute care indicate that nurses and their clients may differ in their identification and prioritization of client needs. These comparative study findings provide some insight into parents' and nurses' perceptions of parental needs and how they may differ. However, because these studies are limited in their specificity to childhood chronic conditions, it is timely to obtain more information about the perceptions of parents and nurses in relationship to this specialty of health care. To provide this information, the current study was conducted using a descriptive comparative design. The following chapter describes the research methodology. CHAPTER T H R E E Methodology This research employed a descriptive comparative design with paired parent/nurse participants for the purpose of comparing their identification and prioritization of parental needs. Each nurse who provided care for a particular child with a chronic condition was paired with the parent of the child who had most contact with the nurse. Chapter three describes the research from the perspectives of 1) setting, 2) sample selection and selection criteria, 3) instruments, 4) data collection and analysis, and 5) protection of human rights. Setting The ambulatory services of a Western Canadian pediatric hospital were selected as an appropriate setting in which to study parents of children with chronic conditions and their respective nurse care-givers. Ambulatory services provide tertiary care to children and adolescents throughout the province. These individuals are referred to teams of specialists associated with specific programs for the purposes of assessment, treatment, and follow-up. Ten out of sixteen programs operating under ambulatory services were represented in the study. They included the Cleft Palate/Facio Maxillary, Cystic Fibrosis, Diabetic, Endocrine and Growth Disorders, General Orthopedics, Renal Disorders, Meningomyelocele, Rheumatology, Neurology and Seizure Disorders Programs. Sample Selection and Selection Criteria The sample for this study consisted of 38 parents paired with their respective nurse care-givers, the latter totalling 13. The process of selecting the sample, based on the selection criteria, is described below. (1) The study, its purpose, and the nurses' time commitment were initially introduced to the ambulatory nurses at one of their monthly meetings. 25 26 Following this meeting, individual appointments were made at which time study information letters were presented to nurses (Appendix F) and program directors (Appendix G). (2) Nurses were asked to participate regardless of their educational background and so the sample consisted of nurses with diplomas, as well as those with baccalaureate and masters degrees. (3) The selection criteria for nurses stated that : a) they must have worked in their current ambulatory program for at least six months; and b) their nursing responsibilites had to include a follow-up component through which they had ongoing contact with parents. (4) Nurses who agreed to participate in the study were asked to sign a consent form (Appendix I), and compile a list of all parents on their caseload who met the following criteria: a) parents who were literate in spoken and written English; b) parents who had a child, four years of age or under, who had been diagnosed as having a chronic condition within the past year; c) parents who had attended the ambulatory program with their child at least four times in the preceding six months, or parents who had attended the ambulatory program at least twice in the preceding six months and with whom the nurse had been in telephone contact at least twice in the same six-month period. Instruments Two modified versions of the Family Needs Survey (Bailey & Simeonsson, 1985) 27 were used in this study, one for nurses (Appendix A) and one for parents (Appendix B). In addition, socio-demographic data were collected on socio-demographic tools which were prepared by the researcher for nurses (Appendix C) and for parents (Appendix D). Family Needs Survey The Family Needs Survey was designed by Bailey and Simeonsson (1985) to assess the functional needs of parents of young handicapped children. When the passing of U.S. Public Law 97-457 made the assessment of families with handicapped infants and toddlers the responsibility of nurses, educators, therapists, and other allied health professionals, the instrument was designed to be used by many disciplines as a source of information for setting intervention goals. This investigator extended the use of this instrument by using it in the context of chronic conditions in children four years of age and under who were followed in the ambulatory services of a Western Canadian pediatric hospital. The kinds of needs included in the instrument were consistent with those of interest to the investigator. Therefore, its use seemed appropriate for the study. The instrument is a 35-item scale divided into six needs subscales: information, support, explaining to others, community services, financial, and family functioning. Scale items were selected as a result of a comprehensive review of the literature, consultations with interventionists, previous survey data, and the clinical experiences of the developers. The instrument uses a three-point format that is need-oriented rather than problem-oriented. A score of 1 was assigned to responses for "I definitely do not need help with this", and scores of 2 and 3 were assigned to responses for "Not sure" and "I definitely need help with this," respectively. The developers of this assessment tool for individual families considered responses of 3 to be positive indications of parental need. The instrument also includes an open-ended question asking parents to list their greatest needs, which could 28 include needs not already mentioned in the survey. To establish content validity, the instrument was reviewed by 15 early childhood interventionists affiliated with home-based programs in the state of North Carolina and revised in accordance with their comments. Field testing of the instrument was conducted with 34 two-parent families participating in home-based infant intervention programs. The average age of the children was 14 months. Forty-seven percent of the families were in the lower two socio-economic levels, according to Hollingshead's four-factor index (Bailey & Simeonsson, 1988b). The field test results regarding validity and reliability are as follows. Validity. Seventeen interventionists cited this instrument 36 out of 53 times (68%) as a useful source of information in the planning of goals and services for families. The instrument's clinical utility was supported by the responses of the 34 sets of parents implying that the listed needs items were very real needs experienced by parents. Analyzing the open-ended question data, the developers found that of the 218 needs cited by 33 out of the 34 sets of parents, 131 (60%) clarified or duplicated needs already identified on the instrument. When the remaining 87 (40%) newly cited needs were analyzed, the developers felt that their diversity did not warrant adding them to the instrument. The instrument's content validity, in terms of the categories identified, would be improved with a "confirmatory factor analysis" (Bailey & Simeonsson, 1988b, p. 125). Reliability. Six months after initial field testing, the instrument was re-administered to 20 two-parent families. Test-retest correlations for total scores were moderate for mothers (r = .67, p <.001) and higher for fathers (r = .81, p,.001). The most stable needs subscales for mothers were support (r = .71), explaining to others (r = .53), financial (r = .65), and family 29 functioning (r = .62). The most stable needs subscales for fathers were support (r = .79), community services (r = .54), and financial (r = .78). These correlations suggest that parents who expressed needs at one point in time are likely to express them again. However, with the exception of the father's total scores and two of the father's subscale scores (support and financial), the correlations were not consistently high. These results indicate that testing for reliability six months after initial field testing may not be appropriate since the needs of parents may have changed during that period of time. To improve its suitability for use in this study, the instrument was modified (with the consent of the authors) for both nurses and parents. On the nurses' survey, pronouns and some wording were changed to improve the readability. In the support needs subscale on both surveys, "clergyman" was inserted along with "minister" (#6), "nurse" was added to "teacher or therapist" (#4), and "whose children have chronic conditions" was included with "handicapped children" (#3). Also, the open-ended question was modified in order for it to be more specific about the rank ordering of the greatest needs identified by nurses and parents. Further, because this instrument was used as a research tool for grouped data, mean ratings of scores on the 35-item scale which were greater than 2.00 were considered positive indications of parental needs. Socio-demographic Tool for Parents The socio-demographic tool for parents used in this study was designed to obtain data that would accurately describe one part of the study sample. It included questions pertaining to socio-demographic data for the parent, the child with the chronic condition, and the immediate family. Socio-demographic data for the parent included age, education, marital status, first language used at home, relationship to the child with the chronic 30 condition, and whether the parent had to travel more than two hours to attend the ambulatory program. Socio-demographic data for the child included age, sex, type of chronic condition, and age at the time of diagnosis. Socio-demographic data for the family included number and age of all children in the family, and the diagnoses of other children in the family who also experienced a chronic condition. Socio-demographic Tool for Nurses The socio-demographic tool for nurses used in this study was designed to obtain data that would accurately describe the other part of the study sample. It included questions pertaining to the following socio-demographic data: education, length of time associated with the current ambulatory program, professional experience working with childhood chronic conditions, and personal experience living with childhood chronic conditions. Data Collection Data collection for all study participants occurred over a three month period. For each nurse/parent pair, the average data collection period was two weeks with six of the 38 pairs taking four to six weeks. Data collection involved two steps for each nurse/parent pair. First, data were obtained from a parent, and second, data were collected from the respective nurse care-giver within a five day period after the researcher had received the parent's data. Identifying and prioritizing parent needs within a five day period was specified in order to enhance the chances that parents and nurses were addressing needs based on the same family circumstances. Parent Data Collection Forty-five parents identified on the nurses' lists as agreeing to receive information about the study were mailed a study information letter (Appendix E) and a consent form (Appendix H), which they were requested to sign and return by mail in an enclosed self-31 addressed, stamped envelope. Along with study information, the letter requested that parent participants not discuss the content of the questionnaires or their responses with their respective nurse care-givers. Seven parents did not return signed consent forms, and therefore were not mailed questionnaires. Upon receipt of the parents' signed consents, participating parents were mailed a Family Needs Survey for parents and a socio-demographic tool for parents with a self-addressed stamped envelope. They were asked to return the completed instruments by mail within 10 days. Parents who did not conform to this request were contacted by telephone and reminded to complete and return their questionnaires. In all cases, completed questionnaires were returned within the week that they were completed by the parents. Nurse Data Collection As soon as a parent's completed instruments were received, the respective nurse care-giver was asked to complete the Family Needs Survey for nurses and the socio-demographic tool for nurses. Nurse participants were asked not to discuss the content of these instruments or their responses with the respective parent participants. Thirty-one instruments were completed within a five day period and seven were completed in a six to seven day period. The completed instruments were collected by the researcher. Data Analysis Family Needs Survey Data Data obtained from the Family Needs Survey were analyzed using descriptive and inferential parametric statistics. Because of the quasi-interval nature of the instrument's measurement scale, either parametric or non-paramentric statistics could have been used. While some researchers argue that nonparametric statistics are safer to use when the assumptions of normal distribution, random sampling, and interval data cannot be fully met, 32 other researchers in recent years have recognized that analyses are relatively unaffected by violation of these assumptions (Burns & Grove, 1987). Consequently, for the purpose of computing parametric statistics, data were entered into the University of British Columbia Mainframe computer and the Statistical Package for the Social Sciences was used (SPSSX -Extended Version Release 2.0). Frequency counts for parents' and nurses' responses to the 35 scale items on the Family Needs Survey were calculated and summarized according to the Survey's six needs subscales. Means and standard deviations derived from the frequency counts (Appendix I) were calculated, and summarized according to the subscales. Means were also ranked for comparison. T-tests for independent samples were calculated based on a statistical significance level of p = .01 (Burns & Grove, 1987; Snedecor and Cochran, 1989). Further, similarities and differences between parents' and nurses' identification and prioritization of parental needs were described based on data collected from the open-ended question on each survey. Socio-demographic Data The nurses were described according to their socio-demographic data (education, professional experience working with childhood chronic conditions, personal experience living with childhood chronic conditions, and length of time in the ambulatory program). The parents were described according to their socio-demographic data (age, education, marital status, first language used at home, relationship to the child with the chronic condition, and travelling time to the ambulatory program). They were also described in relation to their child with the chronic condition (sex, age, type of chronic condition, time of diagnosis), and their family (number of children, ages of children, and other children with chronic conditions). 33 Protection of Human Rights In order to assure protection of the rights of the study participants, this research proposal was reviewed by the University of British Columbia Behavioural Sciences Screening Committee for Research and Other Studies Involving Human Subjects, and the research review committees associated with the hospital in which the study was conducted. The study participants were provided with information pertaining to the purpose of the study and the expected time that they would need to devote to the study. They were told that involvement in the study was voluntary and that if they consented to participate they could withdraw from the study at any time. Further, parents were assured that refusal to participate would not jeopardize the quality of care that their child was currently receiving or would receive in the future. Because of the paired design of the study, participants' names were written on the surveys and tools. This information was kept under lock and key, and was only available to the researcher and the researcher's committee. Once the surveys and socio-demographic tools for each parent-nurse pair were completed, the names were coded to assure anonymity. Participants were assured that identifying information would not be used in any future publications of the study findings. Summary Research using a comparative, descriptive design with paired parent/nurse partipants was employed to study the identification and prioritization of parental needs in the context of caring for children with chronic conditions. Conducted in ambulatory services of a Western Canadian pediatric hospital, 38 parents and 13 nurses affiliated with ten multidisciplinary programs participated in the study. Two modified versions of the Family Needs Survey (Bailey and Simeonsson, 1985) in addition to socio-demographic tools for 34 parents and nurses were used to obtain study data. Data collection occurred over a three month period following a detailed collection protocol. Data were analyzed using descriptive and inferential parametric statistics. Throughout the research process, steps were taken to assure the protection of the rights of the study participants. The following chapter presents and discusses the findings of this study. CHAPTER FOUR Presentation and Discussion of Findings The findings of this study are presented and discussed in four sections. The first section includes a description of the two groups of study participants, parents and nurses. In the second section, responses of parents to the 35 scale items and open-ended question on the Family Needs Survey are presented. The reponses of nurses to the 35 scale items and open-ended question on the Family Needs Survey are presented in the third section. The fourth section describes the similarities and differences between the responses of parents and nurses. Description of Study Participants Parents Age. Table 1 identifies the age group frequencies of the parents participating in the study. Table 1 Frequency Distribution of Parents By Age Group Age (years) Parents 21-30 31-40 41-50 Total Mothers 14 20 0 34 Fathers 1 1 2 4 Total 15 21 2 38 Education. Eight parents completed secondary education, while 12 had some post secondary education and 17 had post secondary degrees. One parent did not respond to this question. Marital status. Table 2 identifies the marital status of mothers and fathers 35 36 participating in the study. Table 2 Frequency Distribution of Parents By Marital Status Parents Married Separated/Divorced Common-law Total Mothers 31 1 •2 34 Fathers 4 0 0 4 Total 35 1 2 38 First language used at home. The first language used at home for 33 of the parents participating in the study was English. For the remaining five parents, the first language was French, Spanish/French, Polish, Italian, and Punjabi. Travel time to the ambulatory program. Twenty-nine of the parents participating in the study travelled less than two hours (i.e., one-way) to attend ambulatory programs in which their children were being followed, while nine travelled more than two hours. Gender of the children. The children with chronic conditions who were attending the ambulatory programs consisted of 24 boys and 14 girls. Diagnoses of the children. Table 3 represents a frequency distribution of the diagnoses of the children attending the ambulatory programs as described by their parents and nurse care-givers. Time of children's diagnoses. Diagnoses of 27 of the children had been established within the year prior to the collection of study data. Because of delays between initial contacts with parent participants and the receipt of their completed questionnaires, six cases were diagnosed 12 to 14 months prior to the collection of the study data. The time period between diagnosis and the collection of data for five children was reported by their parents 37 to be 18 to 24 months, although the nurses involved in their care claimed they were Table 3 Frequency Distribution of Children's Diagnoses Diagnosis of the Child Total (N=38) Diabetes Mellitus 8 Seizure Disorder 6 Renal Condition 4 Spina Bifida 4 Cystic Fibrosis 4 Juvenile Rheumatoid Arthritis 3 Congenital Adrenal Hyperplasia 2 Hypoglycemia 1 Cleft Palate 1 Down Syndrome/Infantile Spasms/Severe Hypotonia/Visual and Hearing Impairment 1 Tetralogy of Fallot/Hydrocephalous/Optic Nerve Atrophy/Cleft Lip and Palate 1 Growth Hormone Deficiency/Hypothyroidism 1 Neurofibromatosis/Tibial Pseudoarthrosis 1 Neurofibromatosis/Renal Arterial Stenosis/Seizure Disor der/Hypertension 1 diagnosed within the year prior to collection of study data. Other children in the family. The majority of parents (73%) had either no other children (15 parents) or one other child (13 parents). Six parents had two other children, two parents had three other children, and one parent had six other children including one foster child. Most children were under 4 years of age (59%), and the rest were between five and nine (37%) and ten and 14 years of age (4%). 38 Other children in the family with chronic conditions. Only three of the 38 parent participants had one other child with a chronic condition. One child had allergies, another child had a seizure disorder which was controlled by medication, and the third child (foster child) had multiple problems including optic nerve atrophy, large cranial defect, and bilateral cleft lip and palate. In summary, parent participants were predominantly mothers who were under 41 years of age, with 59% of the mothers in the 31-40 year old age range. Thirty-five (92%) parents were married, and 76% of the participants lived in close proximity to the hospital in which the research was conducted. Their children attended 10 ambulatory programs affiliated with that hospital for the treatment and management of a wide variety of chronic conditions. Most of the children's diagnoses (87%) were established within the 14 months prior to the collection of study data. The majority of parents had no other children (39%) or one other child (34%). The age ranges for the other children were under four (59%) and five to fourteen years of age (41%). Only three parent participants had other children with chronic conditions, the most seriously afflicted child being a foster child. Nurses Education. Of the 13 nurse participants, five had a diploma in nursing, four had a baccalaureate degree, and four had a masters degree. Background in childhood chronic conditions. Table 4 identifies the length of time nurse participants had been associated with their respective programs, as well as their professional and personal experience with childhood chronic conditions. In summary, eight of the 13 nurse participants had nursing education beyond a nursing diploma. Seven nurses had been associated with the ambulatory programs from six months to five years, while for six nurses the association was six to 20 years. 39 Table 4 Distribution of Nurse Participants By Background and Time Nurse Participants' Backgrounds (N=13) Length of r fime (years) 0.5-5 6-10 11-15 16-20 Association with Program 7 4 0 2 Professional Experience with Childhood Chronic Conditions 2 4 2 5 Personal Experience with Childhood Chronic Conditions 0 0 1 0 Professional experience with childhood chronic conditions for 11 nurses also ranged from six to 20 years. Only one nurse had personal experience with childhood chronic conditions. Parent Responses on the Family Needs Survey Parent responses on the 35 item rating scale and the open-ended question of the Family Needs Survey for Parents answer the first of the study's research subquestions: What needs are identified by parents and how are they prioritized? Parent participants responded to the 35 scale items using a three-point Likert-type scale. Scale ratings were designated as 1) I definitely do not need help with this, 2) not sure, and 3) I definitely need help with this. Response frequencies and ranked means, derived from frequency counts, were calculated and summarized according to the survey's six needs subscales. Mean ratings of greater than 2.00 were considered positive indications of parental need. Table 5 shows response frequencies and ranked means for Information Needs. Parents indicated that they had only one information need which was related to future services (15). The research of Horner et al. (1987), who studied 164 parents (87% mothers) of children with chronic conditions, supports this finding by reporting that a parent's 40 Table 5 Parent Response Frequencies and Ranked Means for Information Needs Item Response Frequencies Mean Rank 1 2 3 11 Child's chronic condition 15 9 14 1.97 2 12 Management of child's behaviour 19 7 12 1.82 5 13 How to teach child 18 7 13 1.87 4 14 How to play and talk with child 28 4 6 1.42 7 15 Future services * 2 9 26 2.65 1 16 Present services 16 9 13 1.92 3 17 Growth and development * 20 10 7 1.65 6 Note. Asterisk identifies items not completed by all respondents. greatest information need is planning for the future. However, in addition to future planning, the authors identified a variety of information needs related to the child's chronic condition, behaviour management, education, required community services, and growth and development. Other research, anecdotal references, and personal accounts of parents managing childhood chronic conditions in the literature identify similar parental needs for information (Darling & Darling, 1982; Featherstone, 1980; Gilliss et al., 1989; Hobbs et al., 1985; Kornblatt & Heinrich 1985; Passo-Coffman 1983; Schade & Passo, 1981; Shelton et al., 1987; Strauss & Munton, 1985; Zamerowski, 1982). Given that parents of children with chronic conditions commonly have multiple needs for information, it is interesting to note that the parents in this study identified only one need. In particular, one could have expected that mothers of children under the age of five years would have had greater information needs (Passo-Coffman, 1983). Socio-41 demographic data which may explain the finding of only one need include the parents' age, marital status, and educational level. This premise is supported by Schade and Passo (1981) who found that more educated parents expressed fewer concerns or needs for information. Further, Rawlins and Horner (1988) found that single parents ask more questions of a basic nature than parents with partners. Other researchers link younger mothers, among parent participants who ranged in age from their early twenties to over 50, with greater needs for information (Passo-Coffman, 1983; Winkel, 1988). Therefore, the parents in this study may not have had more information needs because they were older, married, and had more advanced education. It is also possible that parents' needs for information were being effectively met by the professionals involved with them. Further, based on the fact that parental needs change on a regular basis (Terkelson, 1980), these parents may have had broader information needs closer to the times of their children's diagnoses. The need for information about future services would be likely to continue even if all other information needs had been met. Table 6 shows response frequencies and ranked means for Support Needs. Parents identified three support needs which were ranked as 1) reading material about parents with a similar child (S7), 2) more time for oneself (S8), and 3) the opportunity to meet and talk with parents of a similar child (S3). The highest ranking support need, reading material about parents with similar children, is not commonly identified in the literature. One possible reason why parents might identify this need, which is related to indirect help-seeking, is that its fulfillment can occur independently rather than getting involved in interactions with other people (DePaulo, 1983). According to Vincent (1985), some parents begin to resolve problems by using independent self-sustaining behaviours rather than dependent help-seeking actions. Reasons for this parental tendency pertain to feeling 42 Table 6 Parent Response Frequencies and Ranked Means for Support Needs Item Response Frequencies Mean Rank 1 2 3 SI Someone in family to talk to more about problems 29 5 4 1.34 7 S2 More friends to talk to 26 4 8 1.53 5.5 S3 Opportunity to meet/talk with parents of similar child 12 9 17 2.13 3 S4 More time to talk with teacher, therapist, nurse 20 13 5 1.61 4 S5 Meet more regularly with counselor to discuss problems 24 8 6 1.53 5.5 S6 Talk with clergy to help deal with problems 34 1 3 1.18 8 S7 Reading material about parents with similar child 9 2 27 2.47 1 S8 More time for self 11 6 21 2.26 2 embarrassed; fearing rejection; being reluctant to reveal inadequacies, self-disclose or/mpose on others; and having the desire to achieve independent success (DePaulo, 1983). The second most important support need identified by the parents in this study is the need for more time for oneself (S8). This support need is frequently mentioned in the literature, often in conjunction with needing more time for one's spouse and for other children in the family (Bristor, 1984; Korn et al., 1978; Patterson & McCubbin, 1983; Rodgers et al., 1981; Rose & Thomas, 1987; Tavormina, 1981; Weyhing, 1983). Several authors associate this need with parents' increased responsibilities, disrupted routines, lack of privacy, and chronic fatigue. 43 The third highest ranking support need identified by parents in this study is concerned with having the opportunity to meet and talk with other parents with similar children (S3). This need is widely supported in the literature (Beckett, 1985; Bristor, 1984; Featherstone, 1980; Ferraro & Longo, 1985; Friedman, 1986; Holaday, 1989; Horner et a l , 1987; Rawlins & Horner, 1988; Rose & Thomas, 1987; Seligman & Darling, 1989; Shelton et al. 1987; Winkel, 1988; Young et al., 1988; Zamerowski, 1982). According to Shelton et al. (1987), a significant number of parents attending the 1986 Association for the Care of Children's Health Parent Network Meeting stated that "parent-to-parent support is one of the key elements of family-centered care" (p.37). Winkel's study of 118 parents between the ages of 24 and 57 years (70 mothers), whose children had juvenile rheumatoid arthritis, discovered that 37% wanted to join a parent support group. This percentage consisted mainly of mothers and parents less than 40 years of age. Canam (1987) found that 44% of the parents in her study of chronically ill children and their families expressed a need to talk about their experiences, particularly with someone perceived to be receptive and understanding. They identified other parents with similar children and ambulatory clinic nurses as the most helpful sources of support. One reason why some parents want to meet and talk with other parents who have similar children is that parent-to-parent support gives them an opportunity to express anger and sadness (Horner et al., 1987). Further, parents need to share their experiences, discuss alternatives to solving problems, and learn to use the correct terminology associated with their child's chronic condition (Fortier & Wanless, 1984). The three support needs identified by the parents in this study are related to the informal support network. This finding is consistent with those of other investigators. Vincent (1985) reports that parents use the informal support network 75% of the time when 44 searching for solutions to their problems or fulfillment of their needs. Whittaker and Garbarino (1983) qualify this statement by claiming that individuals usually turn to friends, family, neighbours, and even acquaintances for help before approaching professionals. One could assume that parents did not identify the remaining needs because they were being fulfilled. First, parental socio-demographic data could account for the fulfillment of the two remaining needs associated with the informal network which were someone in the family to talk to more about problems and more friends to talk to. The parents' age group, educational level, and marital status could influence their skills in communicating with family members and friends. Further, Rose & Thomas (1987) report that some marriage partners have an increased need to rely on one another when their child has a chronic condition, resulting in closer and more communicative relationships. Second, professionals involved with the parents may be effectively meeting parents' needs for support. Table 7 shows response frequencies and ranked means for needs related to Explaining to Others. Parents did not identify any needs related to explaining to others about their child's condition. In contrast to this study finding, Seligman and Darling (1989) report that one of the most difficult tasks for parents is to tell family members and friends about their child's condition for the first time. The authors also report that parents initially have difficulty facing and explaining their children's conditions to strangers and acquaintances. A number of hypotheses can explain why the parents in this study did not identify any needs related to explaining to others. First, the majority of these parents had children whose chronic conditions were in reasonable control, such as in the cases of children with diabetes, cystic fibrosis, and seizure disorders. Further, these particular diagnoses do not 45 Table 7 Parent Response Frequencies and Ranked Means for Explaining to Others Needs Item Response Frequencies Mean Rank 1 2 3 E l Help explaining child's condition to parents/ spouses' parents 29 3 6 1.40 3 E2 Parent's spouse needs help to understand/ accept child's condition 30 5 3 1.29 4 E3 More help explaining to child's siblings 32 3 3 1.24 5 E4 Help knowing how to respond to friends', neighbours', and strangers' questions about child's condition 25 8 5 1.47 2 E5 Help explaining child's condition to other children 23 11 4 1.50 1 carry the stigma of obvious physical impairment, which would place parents in the frequent position of having to explain their children's conditions. Second, by virtue of the parents' advanced education and older age group, they may have had more opportunities to learn the art of communicating with family members, friends, acquaintances, and strangers. Third, the majority of these parents completed their instruments a number of months after their children's diagnoses. Therefore, they would have passed beyond the earliest stage in which explaining their children's conditions to family members and friends is most difficult. Fourth, these parents may have developed closer relationships within their families contributing to better communication. In support of the latter hypothesis, Venters (1981) studied the coping strategies of families with children diagnosed as having cystic fibrosis, and found that some familes were suddenly forced to reject their pursuits for materialistic achievements as sources of happiness. Subsequently, these families focused more on 46 interpersonal relationships within the families, growing closer as they developed better ways to communicate with each other. Table 8 shows response frequencies and ranked means for Community Services Needs. Parents identified one community services need pertaining to having help locating Table 8 Parent Response Frequencies and Ranked Means for Community Services Needs Item Response Frequencies Mean Rank 1 2 3 C l Help locating a doctor who understands them and their child's needs 30 3 5 1.34 3 C2 Help locating a dentist who will see their child 30 5 3 1.29 4 C3 Help locating child/respite care providers willing and able to care for their child 15 7 16 2.03 1 C4 Help locating a day care center or preschool 25 8 5 1.47 2 C5 Help getting care for child during church or synagogue services 34 1 3 1.18 5 child and/or respite care providers who were willing and able to care for their child (C3). The literature, mainly anecdotal references and personal accounts of parents managing chronic childhood conditions, provides substantial support for this study finding (Darling & Darling, 1982; Featherstone, 1980; Horner et al., 1987; Johnson & Steele, 1983; Korn et a l , 1978; Seligman & Darling, 1989; Turnbull & Turnbull, 1985; Tavormina, 1981; Young et al., 1988.) This investigator did not find references in the literature regarding the remaining community services needs listed in the instrument, perhaps due to their specificity. Parents 47 in this study may not have identified more community services needs because these needs were either not applicable to their specific situation; had already been met; or, as discussed by Venters (1981), parents preferred to resolve their community services needs independently. Once again, the parental socio-demographic factors of older age, advanced education, and marital status could have influenced the parents' resourcefulness in finding their own community services. Also, these factors could have made it possible for them to have a larger informal support network, alleviating the need for help in locating day care services. Table 9 shows the response frequencies and ranked means for Financial Needs. Table 9 Parent Response Frequencies and Ranked Means for Financial Needs Item Response Frequencies Mean Rank 1 2 3 F l Help paying for food, housing, medical care, clothing, transportation 26 6 6 1.47 1 F2 Help getting special equipment for child's needs 32 3 3 1.24 4 F3 Help paying for therapy, day care, other services that child needs 30 6 2 1.26 3 F4 Parent or spouse need more counseling or help getting a job 35 3 0 1.08 5.5 F5 Help paying for babysitting or respite care 31 3 4 1.29 2 F6 Help paying for toys their child needs 36 1 1 1.08 5.5 Parents in this study did not identify any financial needs in contrast to reports in the literature, which mainly consist of anecdotal references and personal accounts of 48 parents managing childhood chronic conditions. A large number of American authors and several Canadian authors claim that financial burdens are a major factor for parents of children with chronic conditions (Andrews & Neilson, 1988; Drotar, 1981; Featherstone, 1980; Hobbs et al., 1985; Ireys, 1981; Mattson, 1972; Rodgers et al., 1981; Seligman & Darling, 1989; Turnbull & Turnbull, 1986; Wright & Leahey, 1987; Zamerowski, 1982). Hobbs et al. (1985) report that some American families have constant financial worries related to hospitalizations, physician visits, medical procedures, nursing care, drugs, food, transportation, child care, lost work, renovations, equipment, and supplies. Seligman & Darling (1989) specifically target American parents of lower socio-economic status as having less money to spend on their children's disabilities. Wright & Leahey (1987) state that single Canadian mothers are likely to have financial difficulties meeting the needs of their children with chronic conditions. The differences between American and Canadian parents identified in the above studies, may be largely attributed to different health care systems operating in the two countries. Without legislated universal medical coverage, American parents are more likely than Canadian parents to have greater financial concerns related to caring for their children with chronic conditons. Parental socio-demographic factors which may have influenced the responses of the parents on this subscale are the medical and extended benefits, the older age group, the advanced educational level, the higher percentage of one or two children families, and the relatively short period of time since the child's diagnosis. A l l of these factors could affect the parents' abilities to earn and retain greater assets, making it possible for them to meet the additional financial needs that their children's chronic conditions incur at this point in time. Perhaps the most important factor is the Canadian health care system that ensures universal medical coverage for these families. 49 Table 10 shows the response frequencies and ranked means for Family Functioning Needs. Parents in this study did not identify any family functioning needs contrary to the Table 10 Parent Response Frequencies and Ranked Means for Family Functioning Needs Item Response Frequencies Mean Rank 1 2 3 FF1 Help discussing problems, reaching solutions 27 5 6 1.45 2 FF2 Help learning how to support one another during difficult times 25 5 8 1.55 1 FF3 Help deciding who will do household chores, childcare, and other family tasks 31 3 4 1.29 4 FF4 Help deciding on and doing recreational activities 26 8 4 1.42 3 literature which supports the view that having a child with a chronic condition in the family is likely to have detrimental lasting affects on family relationships (Bristor, 1984; Darling & Darling, 1982; Drotar, 1981; Hobbs et a l , 1985; Seligman & Darling, 1989; Sperling, 1978; Young, 1983; Zamerowski, 1982). According to several authors, it is common for families to pass through difficult stages of adjustment as they learn to cope with the care and management of their children with chronic conditions. These stages are described as crisis (at the time of diagnosis), adjustment (denial, grief, guilt, anger), reintegration (focusing outward), and closure (Bristor, 1984; Zamerowski, 1982). The literature also attests to the fact that the presence of a child with a chronic condition in the family does not have to be detrimental to family functioning. Some families soon learn to reassess their priorities, increase their communication, interrelate in 50 more supportive ways, and ultimately build closer bonds with one another (Featherstone, 1980; Rose & Thomas, 1987; Seligman & Darling, 1989; Turnbull & Turnbull, 1985; Venters, 1981; Young et al., 1988). In one particular study, Venters studied 100 families in which there were children with cystic fibrosis. In 81% of the families, she found a correlation between sharing the burdens of the child's illness between family members and demonstrated high or medium levels of family functioning. Further, Gallagher et al. (1984) studied 50 pairs of handicapped preschool children and 83 pairs of non-handicapped preschool children of two-parent middle income families. A major finding of this study was that both groups divided family responsibilities in a similar fashion. Therefore, the presence of a child with a chronic condition in the family did not influence the practice of dividing family responsibilities. Wright and Leahey (1987) also suggest that family members can quickly become experts in the care and management of these children, and consequently exhibit some very effective coping skills. Therefore, there is evidence in the literature to support the fact that parents may not have any family functioning needs. One could hypothesize that the parents in this study had progressed into the reintegration and closure period and did not have any needs for intervention. Further, parental socio-demographic data related to older age, advanced education, potential to be in the middle income bracket, and married status could certainly have influenced the parental responses on this subscale. For example, these data could have influenced how the parents communicated, interrelated, supported one another, shared family responsibilities, and provided recreational activities for their children. In addition, it is possible that these subscale items may have been difficult ones for parents to answer honestly because they might have believed that professionals would expect them to do well in the area of family functioning. It is also possible that parents could have difficulty 51 determining the success of their functioning within the family unit, tending to be more positive in their assessments than professionals. Table 11 presents data obtained from 32 parent responses to the open-ended Table 11 Parental Needs Identified and Prioritized According to 32 Parent Responses Identified Need Number of Times Parents Identified This Need Information Needs Identified by 23 of 32 Parents (72%) 1) current research, future treatments 15 2) child's condition 8 3) management of child 5 4) growth and development 4 5) future services 4 6) present services 5 Community Services Needs Identified by 22 of 32 Parents (69%) 1) help locating competent regular and/or respite child care providers 15 2) help locating a physician who is understanding, competent, honest, and available 6 3) help locating a resource person knowledgeable about commnity services 3 4) help obtaining at-home services (nursing, physio, occupational therapy) 2 5) acknowledgement (for child to be treated like other children) 2 Support Needs Identified by 22 of 32 Parents (69%) 1) parent support group 11 2) time for oneself, spouse, other children 11 3) time with nurse (personal, telephone contact) 4 question indicating how parents prioritized their identified needs. (Six of the 38 parents did not respond to this question). Parents identified and prioritized three themes of needs which were almost evenly ranked as 1) information, 2) community services, and 3) support. The most important information need was related to current research and future 52 treatments. The need for help locating competent regular and/or respite child care providers was the most important community services need. The two most important support needs included joining a parent support group, and finding time for oneself, one's spouse, and the other children in the family. The three themes of parental needs and the four specific needs identified within each of the themes on the open-ended question closely resemble the parental needs identified on the 35-item scale. In two cases, the open-ended question broadened the parental needs identified on the 35-item scale. First, the need for information about future services was broadened to include current research and future treatments. Second, the support need for more time for oneself was broadened to include time for one's spouse and other children in the family. It is difficult to postulate why parents did not specifically identify the need to have written material about parents of children with similar conditions on the open-ended question, as they did on the 35-item scale. However, in spite of this omission, responses to the open-ended question were consistent with other responses in the instrument. Further, the open-ended question supplemented other responses because it showed the importance that parents assigned to their needs in addition to identifying them. Given the nature of the open-ended question, a number of individual parental needs were identified. In the interest of the research, which was to compare how two groups identified and prioritized parental needs, the inclusion of individual parental needs in this commentary would not have been helpful and, therefore, was not included. In summary, parents identified and prioritized three themes of needs on both the 35-item scale and the open-ended question which were ranked as 1) information, 2) community services, and 3) support. Within these themes, four specific needs were 53 identified and prioritized. The information need was future services, which was broadened on the open-ended question to include future treatments and current research. The community services need was help locating competent regular and/or respite child care providers. Support needs were ranked as the opportunity to meet and talk with other parents of similar child, and more time for self. On the open-ended question, time for self was broadened to include time for spouse and other children. The need for reading material about other parents of similar children, which was identified on the 35-item scale, was not repeated on the open-ended question. The fact that relatively few needs were expressed by the parents in this study leads one to conclude that they are coping well. The needs that were identified have been described in the literature and are shared by a number of other parents. Nurse Responses on the Family Needs Survey Nurse responses to the 35-item rating scale and the open-ended question of the Family Needs Survey for nurses answers the second of the research subquestions: What parental needs are identified by nurses and how are they prioritized? Based on the same 35-item rating scale as used by the parents in their survey, response frequencies and ranked means, derived from frequency counts, were calculated and summarized according to the Survey's six needs subscales. As with the parents, mean ratings of greater than 2.00 were considered positive indications of nurses' assessments of parental need. The nursing literature clearly directs nurses to consider the needs of family members when caring for children in the context of chronic conditions (Andrews & Nielson, 1988; Canam, 1987; Hodges & Parker, 1987; Horner et al., 1987; Jackson, 1985; Johnson, 1986; Leahy & Wright, 1987; Rawlins & Horner, 1988; Rose & Thomas, 1987; Trahd, 1986; 54 Winkel, 1988; Zamerowski, 1982). Considering these references, it is not surprising that nurses in this study identified a considerable number of parental needs. However, the literature provides relatively little support for these identified needs because of the paucity of nursing studies in this area. Consequently, some studies from farther afield, in the areas of adult critical/acute care, have been included to provide additional support. Table 12 shows response frequencies and ranked means for Information Needs. Table 12 Nurse Response Frequencies and Ranked Means for Information Needs Item Response Frequencies Mean Rank 1 2 3 11 Child's chronic condition 6 4 28 2.58 2 12 Management of child's behaviour 12 8 18 2.16 3 13 How to teach child 16 7 15 1.97 6 14 How to play and talk with child 25 8 5 1.47 7 15 Future services 3 4 31 2.74 1 16 Present services 12 11 15 2.08 5 17 Growth and development 11 11 16 2.13 4 Nurses indicated that parents have five information needs, ranking them as: 1) future services (15), 2) the child's chronic condition (II), 3) management of the child's behaviour (12), 4) growth and development (17), and 5) present services (16). This finding is supported by other studies involving nurses, one in the area of neonatal care (Young et al., 1988), and the remaining ones in adult critical/acute care (Lauer et al., 1982; Matheson, 1987; O'Neill Norris & Grove, 1986). In the Young et al. (1988) study, 20 professionals (8 nurses) identified the needs of 55 parents whose infants were discharged home from hospital on oxygen therapy. A l l 20 professionals described the need for parents to have better access to more specific information at the time of the infants' discharges from hospital, and in their home management periods. They specifically identified parental information needs pertaining to community services, the infants' nutritional requirements, and the infants' proposed treatment periods. The adult critical/acute care studies of Lauer et al. (1982), O'Neill Norris & Grove (1986), and Matheson (1988) also indicate that nurses see information needs as important. The most important information needs identified in these studies were related to the clients' activities of daily living (Lauer et al., Matheson), the clients' medical conditions (O'Neill Norris & Grove), and family finances (Lauer et al.). The latter study also revealed that the two of the most important areas of information needs were "dealing with feelings" and "relationships with significant others." One possible reason for nurses in this study not identifying information needs pertaining to how to teach child (13) and how to play and talk with child (14) is that these needs have been more commonly described in the literature in relationship to children with both physical and cognitive developmental delays (Bailey & Simeonsson, 1988; Darling and Darling, 1982; Featherstone, 1980; Seligman & Darling, 1989; Turnbull & Turnbull, 1985). The diagnoses of the children in this study were mainly chronic conditions such as cystic fibrosis, diabetes, and seizure disorders. Therefore, the parents of these children would probably not be seen by nurses to require additional strategies for teaching, playing with, or talking to their children. Further, the nurses would have had the opportunity to observe these parents and their children in the ambulatory clinics and would have considerable insight regarding their parenting skills in these areas. 56 Table 13 shows the response frequencies and ranked means for Support Needs. Nurses indicated that parents have five support needs, ranking them as 1) more time Table 13 Nurse Response Frequencies and Ranked Means for Support Needs Item Response Frequencies Mean Rank 1 2 3 SI Someone in family to talk to more about problems 6 20 12 2.16 5 S2 More friends to talk to 11 18 9 1.95 6 S3 Opportunity to meet and talk with parents of similar child 8 4 26 2.47 2 S4 More time to talk with teacher, therapist, nurse 9 9 20 2.29 3.5 S5 Meet more regularly with counselor to discuss problems 13 16 9 1.90 7 S6 Talk with clergy to help deal with problems 11 24 3 1.79 8 S7 Reading material about parents with similar child 6 15 17 2.29 3.5 S8 More time for self 3 7 28 2.66 1 for self (S8), 2) the opportunity to meet and talk with parents of a similar child (S3), 3.5) more time to talk with teacher, therapist, nurse (S4), 3.5) reading material about parents with a similar child (S7), and 5) someone in the family to talk to more about problems (SI). Investigators in the area of childhood chronic conditions (Dunst & Leet, 1987; Young et al., 1988), and in the field of critical care (O'Neill Norris & Grove, 1986; Yoder and Jones, 1982) provide some support for this finding. A study of families whose infants were discharged home from hospital on oxygen 57 therapy by Young et al. (1988) found that more than half of the 20 professionals (8 nurses) interviewed in the study identified the parental need for contact with parent support groups and/or with individual parents who were having similar experiences. The studies of O'Neill Norris (1986) and Yoder and Jones (1982) emphasize the fact that nurses recognize that families of critically il l clients need to feel that care-providers also care about them, and that families have definite support needs which nurses must attempt to meet. While these comparative studies address professionals' identifications of needs for specific clients, a study by Dunst and Leet (1987) examines professionals' (including nurses) identifications and rankings of family resources and needs for a general population of parents with handicapped children. The professionals, who worked with these handicapped children and their families, indicated that time for self was a parental resource or need that ranked 14 on a list of 30 resource scale items. Several reasons could explain why nurses in this study did not identify the parental needs of more friends to talk to (S2), to meet more regularly with a counselor (S5), or talk with clergy to help deal with problems (S6). First, unless these specific needs had been openly discussed by parents, nurses might consider them to be too personal to mention. This fact could account for the high number of "not sure" responses on these items. Further, nurses may not have identified the parental need to meet more regularly with a counselor because the wording of this need is somewhat misleading in terms of who the counselor is. Table 14 shows the response frequencies and ranked means for Explaining to Others Needs. Nurses indicated that parents did not need help explaining their child's condition to others. Other than the work of Bailey & Simeonsson (1988b), related to the development of the instrument used in this study, the author could not find any references 58 Table 14 Nurse Response Frequencies and Ranked Means for Explaining to Others Needs Item Response Frequencies Mean Rank 1 2 3 E l Help explaining child's condition to parents, spouses' parents 15 13 10 1.87 3 E2 Parent's spouse needs help to understand and accept child's condition 17 7 14 1.92 1 E3 More help explaining to child's siblings 24 8 6 1.53 5 E4 Help knowing how to respond to friends' neighbours', strangers' questions about child's condition * 15 11 11 1.89 2 E5 Help explaining child's condition to other children 18 16 4 1.63 4 Note. Asterisk identifies items not completed by all respondents. in the area of childhood chronic conditions indicating that this is a parental need frequently identified by nurses. However, the results of two studies in the field of adult critical care indicate that nurses believed that knowing how to talk to family and friends were important needs for cancer patients (Lauer et al., 1982; Matheson, 1982). Therefore, some nurses view explaining to others as a legitimate need for individuals when coping with a disabling condition. Nurses in this study may not have identified any needs in this subscale because of the parents' older age group and advanced education. These socio-demographic factors could influence the parents' abilities to communicate more effectively, and such skills would have been observed by the nurses during the families' visits to the ambulatory programs. Table 15 shows response frequencies and ranked means for Community Services 59 Needs. Nurses indicated that parents had one community services need, which was the Table 15 Nurse Response Frequencies and Ranked Means for Community Services Needs. Item Response Frequencies Mean Rank 1 2 3 C l Help locating a doctor who understands them and their child's condition 22 12 4 1.53 4 C2 Help locating a dentist who will see their child 22 16 0 1.42 5 C3 Help locating child and/or respite care providers willing and able to care for their child 8 12 18 2.26 1 C4 Help locating a day care center or preschool 23 7 8 1.61 3 C5 Help getting care for child during church or synagogue services 9 29 0 1.76 2 need for help in locating child and/or respite care providers who were willing and able to care for their child (C3). The study results of Young et al. (1988) are consistent with this finding. When the researchers interviewed 20 professionals (8 nurses) regarding their perceptions of parental needs for parents whose infants were on home oxygen therapy, all 20 identified child care relief as a parental need. They also identified two other community services needs which were specifically related to the infants' dependency on oxygen therapy. This factor emphasizes the point that the needs for community services can be very specific to the individual child's chronic condition. Further, the majority of children in the study have chronic conditions such as cystic fibrosis, diabetes, and seizure disorders, which would not make it unduly difficult for them to obtain medical, dental, preschool, and church childcare services. Therefore, it is understandable that the nurses in the current study 60 would not identify other needs. Table 16 shows the response frequencies and mean rankings for Financial Needs. Table 16 Nurse Response Frequencies and Ranked Means for Financial Needs Item Response Frequencies Mean Rank 1 2 3 FI Help paying for food, housing, medical care, clothing, transportation 23 8 7 1.58 2.5 F2 Help getting special equipment for child's needs 32 2 4 1.26 6 F3 Help paying for therapy, day care, other services 23 8 7 1.58 2.5 F4 Parent or spouse needs counselling/help getting a job 24 11 3 1.45 4 F5 Help paying for babysitting or respite care 17 13 8 1.76 1 F6 Help paying for toys their child needs 28 9 1 1.29 5 Nurses indicated that parents did not have any financial needs which is contrary to the findings of one Canadian study in the area of neonatal care (Young et al., 1987), and one American study in the field of acute care (Lauer et a l , 1982) While the respondents in the first study claimed that parents specifically need more money for child care relief, the nurses in the latter study indicated that the most important need for cancer patients was to receive financial assistance in general. Nurses in this study may not have identified any financial needs because of the parents' socio-demographic data such as medical and extended benefits, older age group, advanced education, small number of children, and recent diagnosis of their child with the chronic condition. Based on these factors, nurses might expect that there would not be a 61 number of financial concerns for this group of parents. Table 17 shows the response frequencies and mean rankings for Family Functioning Table 17 Nurse Response Frequencies and Ranked Means for Family Functioning Needs Item Response Frequencies Mean Rank 1 2 3 FF1 Help discussing problems and reaching solutions 10 8 20 2.26 1 FF2 Help learning how to support each other during difficult times 12 11 15 2.08 2 FF3 Help deciding who will do household chores, child care, and other family tasks 17 20 1 1.58 4 FF4 Help deciding on and doing recreational activities 14 19 5 1.76 3 Needs. Nurses indicated that parents have two family functioning needs, ranking them as help disucussing problems and reaching solutions (FF1), and help learning how to support one another (FF2). The study by Young et al. (1988) provides some support for these findings. In their study of families whose infants were discharged home on oxygen therapy the researchers found that professionals highly prioritized the need for spousal support. Clearly, the professionals realized that informal family support was equally as important as formal support from the community network. One possible reason why nurses in this study did not identify other family functioning needs in this subscale is that unless parents disclose these needs during assessments, nurses can only assume that these needs are being fulfilled. This fact could account for the high number of "not sure" responses for the last two family functioning needs related to deciding 62 who will do household chores, child care, and other tasks (FF3), and deciding on and doing recreational activities (FF4). Table 18 presents data obtained from 38 nurse responses to the open-ended question Table 18 Parental Needs Identified and Prioritized According to 38 Nurse Responses Identified Need Number of Times Nurses Identified This Need Support Needs Identified by 36 of 38 Nurses (95%) 1) counselling (child's condition/treatment, stress management) 21 2) time for oneself, spouse, and other children 18 3) ongoing team/nurse contact 17 4) parent support group 15 5) positive reinforcement/conveying a sense of hope 7 6) more friends to share concern 4 7) balancing career and parenting responsibilities 3 8) dealing with professionals 2 9) resolving guilt 2 Information Needs Identified by 35 of 38 Nurses (92%) 1) child's condition 19 2) behaviour management 11 3) current research and future treatment 10 4) current treatment 10 5) growth and development 9 6) community services 3 Community Services Needs Identified by 15 of 38 Nurses (39%) 1) help locating competent regular and/or respite child care providers 16 2) help locating community services (speech and language therapist, transportation, housekeeper, other) 5 3) help locating a physician who is knowledgeable about child's condition 5 Family Functioning Needs Identified by 14 Of 38 Nurses (37%) 1) help discussing problems and reaching solutions 10 2) help knowing how to support and understand one another 8 indicating how nurses identified and prioritized parental needs. They described four themes 63 of parental needs which were ranked as 1) support, 2) information, 3) community services, and 4) family functioning. The most important support needs were ranked as 1) counselling (child's condition/treatment, stress management), 2) time for oneself, spouse, and other children, 3) ongoing team/nurse contact, and 4) parent support group. The most important information needs were ranked as 1) child's condition, 2) behaviour management, 3) current research and future treatment, and 4) current treatment. The need for help finding competent regular and/or respite child care providers was the primary community services need, and the need for help discussing problems and reaching solutions was the most important family functioning need. The top four themes of parental needs and ten specific needs identified within each of the themes on the open-ended question closely resembled the parental needs identified on the 35-item scale. In two cases, the open-ended question broadened the parental needs identified in the 35-item scale. First, the need for information was broadened to include current research and current and future treatment. Second, more time for self was broadened to include time for one's spouse and other children in the family. Several differences were found in the support and family functioning themes. Within the support needs theme, nurses indicated that the parents' most important need was for counselling related to coping with their childrens' conditions and treatments and stress management. This need was not identified on the 35-item scale of the instrument. In conjunction with this need, nurses also identified a number of lower ranking psychosocial needs. One other difference in the support needs theme was that the need for reading material about other families with similar child was not identified in the open-ended question as it was in the 35-item scale. It is difficult to postulate why this omission occurred. Within the family functioning theme, knowing how to support and understand one 64 another did not appear to have the same importance assigned to it as in the 35-item scale. One possible reason for this is that a number of responses on the open-ended question were very general and could have been assigned to more than one category. These responses were either summarized at this investigator's discretion, or excluded from the summary. In spite of these differences, responses in the open-ended question were relatively consistent with other responses in the instrument. Further, the open-ended question supplemented other responses because it showed how nurses prioritized their themes of needs in addition to identifying them. Given the nature of the open-ended question, a number of individual needs were identified by nurses. As with the individual needs identified by parents, it would not have been in the best interests of the research to include them with grouped data. In summary, nurses identified four themes of parental needs on both the 35-item scale and the open-ended question. These were ranked as support, information, community services, and family functioning. Within these four themes, 13 specific needs were identified and prioritized on the 35-item scale and ten were highlighted on the open-ended question. Support needs on the 35-item scale were ranked as 1) more time for self; 2) opportunity to meet and talk with parents with similar child; 3) more time to talk with teacher, therapist, nurse; 4) reading material about parents of similar child; and 5) someone in family to talk to more about problems. On the open-ended question, nurses placed counselling pertaining to the child's condition/treatment and stress management as the highest ranking support need and, in addition, included a considerable number of lower ranking psychosocial needs. The need for more time for self was broadened to include time for one's spouse and other children. Information needs were ranked as 1) future services, 65 2) child's condition, 3) management of child's behaviour, 4) growth and development, and 5) present services. On the open-ended question, the need for information about the child's condition was the highest ranked need, and the need for information about future services was broadened to include current research and current and future treatments. The community services need was finding help locating competent regular and/or respite care providers. Family functioning needs were ranked as help discussing problems/reaching solutions and help knowing how to support and understand one another. The large number of parental needs identified by nurses in this study leads one to conclude that nurses view parents as needing more interventions related to information, support, and family functioning. This finding indicates that nurses believe that parents are not coping optimally in these areas and lack the resources to do so. Comparison of Parents' and Nurses' Responses on the Family Needs Survey Responses of parents and nurses to the 35-item scale and open-ended question on the Family Needs Survey were analyzed and compared in order to answer the third of the study's research questions: What are the similarities and differences in parental needs as identified and prioritized by parents and nurses? The following information was elicited. Table 19 shows a comparison of parent and nurse means on Information Needs including t-test results and ranks. Figure 1 presents the comparison in graphic form. Parent and nurse responses on Information Needs indicate that both parents and nurses agreed that 15 (information about future services) was a parental need. There was no statistically significant difference in their responses to this subscale item. It is interesting to note that in ranking this need, both groups agreed that it was the most important information need. However, no further agreement occurred between the groups on this subscale. 66 Table 19 Group Comparison for Information Needs Item Gp Mean t Rank 11 Child's chronic condition P 1.97 3.21* 2 N 2.58 2 12 Management of child's behaviour P 1.82 1.66 5 N 2.16 3 13 How to teach child P 1.87 0.48 4 N 1.97 6 14 How to play and talk with child P 1.42 0.29 7 N 1.47 7 15 Future services P 2.65 0.66 1 N 2.74 1 16 Present services P 1.92 0.81 3 N 2.08 5 17 Growth and development P 1.65 2.55* 6 N 2.13 4 Note. *p<.01. In contrast to the one information need identified by parents, nurses believed that parents had four additional information needs. These needs were related to the child's condition (II), management of the child's behaviour (12), growth and development (17), and present services (16). Nurses rated II and 17 more highly than did parents and the differences were statistically significant. These differences are worthy of note because nurses identified parental needs which were not perceived as needs by parents. The study findings are generally consistent with the results of the study by Young et al. (1988) which looked at the needs of parents whose infants were discharged home on 67 3 2.5 2 1.5 1 * -= Significant difference (P< 0.01) based on T-test for independent samples 0.5 -0 II 12* 13 14 15 16 17 Figure 1. Graphic comparison of group means for Information Needs oxygen therapy, from both the perspectives of parents and those of health care professionals. The authors also found that, while parents identified only one information need, all 20 professionals (8 nurses) identified four other information needs. One other comparative study in adult critical care provides further support for the importance placed on information needs by health care professionals (O'Neill Norris & Grove, 1986). These authors found that three out of the four most important family members' needs identified by nurses pertained to information, compared to one out of four identified by family members. It is interesting to compare the findings of these two studies with those of the current one. In all three cases, health care professionals identified considerably more information needs than did their clients. One possible explanation for the divergency between parents' and nurses' identification of information needs is that nurses may exaggerate clients' needs based on their educational and clinical experiences. These experiences emphasize the importance 68 of accumulating current information and conveying it to clients, which may cause nurses to be biased in their assumptions, beliefs, and values regarding the incidence of parental needs. In addition, the literature abounds with research, anecdotal statements, and personal accounts of parents stating that parents want current information. Because nurses may view their roles as providers of information and parents as eager recipients, some important variables may be overlooked causing nurses to overemphasize parents' information needs. These variables will be discussed in conjunction with the following analysis of support needs identified and prioritized by parents and nurses. Table 20 compares group means on Support Needs including t-test results and ranks. Figure 2 presents the comparison in graphic form. Parent and nurse responses on Support Needs indicate that both groups agreed that the opportunity to meet and talk with parents with a similar child (S3), reading material about parents with similar child (S7), and more time for self (S8) were definite parental needs. There were no statistically significant differences in their responses to these subscale items. However, parents and nurses differed in their rankings of the identified support needs. Where parents ranked support needs as S7 (reading material about other parents), S8 (more time for self) and S3 (meet/talk with other parents), nurses ranked S7 below the other two support needs. Therefore, parents placed more importance on reading materials about other parents with similar children then did nurses. Parents and nurses also disagreed regarding the number of identified needs. Nurses indicated that parents had two additional needs which were SI (someone in family to talk to more about problems) and S4 (more time to talk with teacher, therapist, nurse). These responses showed statistically significant differences and are worthy of note because in both cases needs identified by nurses were not perceived as such by parents. One additional 69 Table 20 Group Comparison for Support Needs Item Gp Mean t Rank SI Someone in family to talk to more about problems P 1.34 5.30* 7 N 2.16 5 S2 More friends to talk to P 1.53 2.34 5.5 N 1.95 6 S3 Opportunity to meet and talk with parents with similar child P 2.13 1.73 3 N 2.47 2 S4 More time to talk with teacher, therapist, nurse P 1.61 3.79* 4 N 2.29 3.5 S5 Meet more regularly with counselor to discuss problems P 1.53 2.12 5.5 N 1.90 7 S6 Talk with clergy to help deal with problems P 1.18 4.66* 8 N 1.79 8 S7 Reading material about parents with similar child P 2.47 0.98 1 N 2.29 3.5 S8 More time for self P 2.26 2.26 2 N 2.66 1 Note. * p<.01. difference related to the need to talk with clergy to help deal with problems was statistically significant. However, this is not of practical significance because both groups agreed that this item was not a parental need. For the duration of this discussion of study findings, other statistically significant differences that arise on subscale items where both groups agree that there is no parental need will not be discussed because of their lack of practical significance. 70 SI S2 v S3 S4 S5 S6 S7 S8 Figure 2. Graphic comparison of group means for Support Needs It is interesting to note that on this subscale nurse responses were consistently higher than parent responses on all items except on the most important support need to parents, reading material about other parents (S7). Of further interest is the fact that on all items of all subscales nurses are higher in their responses except in relation to this one item. These findings suggest that parents may not value support needs in the same way that nurses are led to believe they do. One author supports these findings by stating that family members do not naturally seek attention for themselves, do not always want it, and do not always need it (Gilliss et al., 1989, p. 263). Possible reasons for nurses to identify more needs than parents on this subscale are their educational and clinical experiences. These experiences encourage nurses to enter into nurse-client interventions prepared to "support and [help] parents understand their reactions, express emotions, and ultimately develop effective coping behaviors" (Zamerowski, 1982, p.51). This emphasis could lead nurses to have biased assumptions 71 about the number of support needs experienced by parents and might subsequently encourage nurses to identify more parental needs in their nursing interventions. As with information needs, basing assessments on assumptions may cause nurses to overlook a number of important variables which affect parents' perceptions of their own needs. First, parents have a hierarchy of needs commencing with basic needs (Dunst & Leet, 1987). Until basic needs are fulfilled, parents tend to be selective about where they choose to concentrate their time and energy. Based on this premise, parents may identify very specific information and support needs at any one given time. Second, parents have access to other sources of information and support such as other professionals and the informal support network. They may be very resourceful in obtaining additional information and support from other parents with similar children, extended family members, public and parent resource libraries, and radio/television programs to complement information and support provided by nurses. Third, needs of family members are continuously changing in the context of caring for children with chronic conditions (Dunst & Leet, 1986; Rose & Thomas, 1987; Terkelson, 1980). It is possible that parents' needs are greater at times when their children's conditions are in stages of exacerbation or poor control. Once these stages abate, parental needs for information and support may decrease. Fourth, nursing interventions may have been successful in promoting the fulfilment of parental needs related to sharing information and providing support. Nurses, however, may not recognize this fact and may tend to underestimate their effectiveness in nursing interventions. Consequently, because nurses in this study did not have the opportunity to collaboratively and systematically identify and prioritize parental needs with parents, using a tool such as the Family Needs Survey, they may have made assumptions based on old rather than current information. 72 Table 21 shows a comparison of parent and nurse means on Explaining to Others Needs, including t-test results and ranks. Figure 3 presents the comparison in graphic form. Parent and nurse responses on Explaining to Others Needs indicate that both parents and nurses agreed that there were no needs on this subscale. Table 21 Group Comparison for Explaining to Others Needs Item Gp Mean t Rank E l Help explaining child's condition to parents, spouse's parents P 1.40 2.61* 3 N 1.87 3 E2 Parent's spouse needs help to understand and accept child's condition P 1.29 3.55* 4 N 1.92 1 E3 More help explaining to child's siblings P 1.24 1.86 5 N 1.53 5 E4 Help knowing how to respond to friends', neighbours',strangers' questions about child's condition P 1.47 2.33 2 N 1.89 2 E5 Help explaining child's condition to other children P 1.50 0.83 1 N 1.63 4 Note. * p <.01. Table 22 compares group means on Community Services Needs, including t-test results and ranks. Figure 4 presents the comparison in graphic form. Parent and nurse responses on Community Services Needs indicate that both groups agreed that the only parental need in this subscale was C3 (help locating child and/or respite care providers willing and able to care for their child), ranking it number one. While no other needs were identified, parents and nurses were very close in their responses on four of five items. One reason that would explain the similarities is that community services needs are so specific 1 0.5 Sign i f i can t difference (P< 0.01) based on T - t e s t for independent samples E l E2 E3 E4 E5 Figure 3. Graphic comparison of group means for Explaining to Others Needs. Table 22 Group Comparison for Community Services Needs Item Gp Mean t Rank C l Help locating a doctor who understands them them and their child's needs P 1.34 1.18 3 N 1.53 4 C2 Help locating a dentist who will see their child P 1.29 1.01 4 N 1.42 5 C3 Help locating child and/or respite care providers who are willing to care for their child P 2.03 1.16 1 N 2.26 1 C4 Help locating a day care center or preschool P 1.47 1.05 2 N 1.61 3 C5 Help getting care for child during church or synagogue services P 1.18 5.06* 5 N 1.76 2 Note. *p<.01. 74 2.5 1.5 0.5 * - Significant difference (P< 0.01) based on T-test for independent samples CI C2 C3 C4 C5 Figure 4. Graphic comparison of group means for Community Services Needs, to individual parents that nurses, through periodic interactions with parents, could find it relatively easy to target these parental needs. Table 23 compares group means on Financial Needs, including t-test results and ranks. Figure 5 presents the comparison in graphic form. Parent and nurse responses on Financial Needs indicate that both parents and nurses agreed that none of the subscale items were parental needs. Table 24 shows a comparison of parent and nurse means on Family Functioning Needs, including t-test results and ranks. Figure 6 presents the comparison in graphic form. Parent and nurse responses on Family Functioning Needs show that, while parents did not indicate any needs on this subscale, nurses saw FF1 (family needs help discussing problems and reaching solutions), and FF2 (family needs help learning how to support one another during difficult times) as parental needs. There were statistically significant differences between parents' and nurses' responses on these two subscale items and nurses' responses 75 Table 23 Group Comparison for Financial Needs Item Gp Mean t Rank F l Help paying for food, housing, medical care, clothing, transportation P 1.47 0.62 1 N 1.58 2.5 F2 Help getting special equipment for child's needs P 1.24 0.14 4 N 1.26 6 F3 Help paying for therapy, day care, other services that child needs P 1.26 2.05 3 N 1.58 2.5 F4 Parent or spouse needs counselling or help • getting a job P 1.08 3.24* 5.5 N 1.45 4 F5 Help paying for babysitting or respite care P 1.29 2.83* 2 N 1.76 1 F6 Help paying for toys their child needs P 1.08 2.05 5.5 N 1.29 5 Note. *p<.01. were considerably higher than those of parents. Several reasons can be postulated for these differences. Based on the literature and their educational and clinical experiences, nurses may assume that family disruption is a normal pattern for most parents managing children with chronic conditions (Ferraro, 1985; Rose & Thomas, 1987). This assumption may be confirmed for nurses when parents bring their children to hospital for clinic visits, often stressful events for both parents and children (Kornblatt & Heinrich, 1985). Hospital experiences can reflect negatively on their behaviours, thereby giving the impression of having difficulties with family functioning. Nurses might see parental behaviours during these visits which do not accurately reflect parental needs. It is also possible that nurses may exaggerate family functioning needs 76 1.5 0.5 = Significant difference (P^ 0.01) based on T-test for independent samples FI "• F2 F3 F4 F5 F6 Figure 5. Graphic comparison of group means for Financial Needs. Table 24 Group Comparison for Family Functioning Needs Item Gp Mean t Rank FF1 Help discussing problems and reaching solutions P 1.45 4.35* 2 N 2.26 1 FF2 Help learning how to support each other during difficult times P 1.55 2.75* 1 N 2.08 2 FF3 Help deciding who will do household chores, child care, and other family tasks P 1.29 2.10 4 N 1.58 4 FF4 Help deciding on and doing recreational activities P 1.42 2.18 3 N 1.76 3 Note. *£< .01 . based on their educational and clinical experiences, which emphasize the importance of family centred nursing care which addresses the needs of all family members. However, 77 as stated earlier in this chapter, parents may not naturally seek attention for themselves andmay be reluctant to ask for it (Gilliss et al., 1989). This may be particularly true in the area of family functioning, which may be considered by parents to be a private domain. Also, nurses may have responded to parental needs that were present during periods when the children's chronic conditions were in excerbation or poor control, but had abated by the time the nurses completed the instruments. Therefore, as in the case of information and support needs identified by nurses in this study, nurses may have based their responses on old rather than current information. 2.5 1.5 0.5 S i g n i f i c a n t d i f f e r e n c e (P4 0.01) based on T - t e s t f o r i n d e p e n d e n t samples FFl FF2 FF3 FF4 Figure 6. Graphic comparison of group means for Family Functioning Needs. Responses.of parents and nurses on the open-ended question of the Family Needs Survey showed some similarities and a number of striking differences (see Tables 11 and 18). While both groups agreed on three themes of needs which were support, information, and community services, they differed in a number of ways. First, nurses (37%) included a fourth theme related to family functioning needs. Second, more nurses (95%) than 78 parents (69%) identified support needs; more nurses (92%) than parents (72%) identified information needs; and more parents (69%) than nurses (39%) identified community services needs. Third, parents and nurses prioritized both themes of needs and parental needs within themes differently. The three themes identified by parents were closely ranked, including information (72%), community services (69%), and support (69%) needs. Nurses, in comparison, identified support (95%) and information (92%) as the two highest ranking parental needs, while community services (39%) and family functioning (37%) were ranked lowest among parental needs. Clearly, parents and nurses did not assign the same degree of importance to these themes of parental needs. Within the themes of parental needs, parents and nurses once again showed similarities and differences in their responses. While parents claimed that their primary need for information was related to current research and future treatments, nurses indicated that parents' most important information need pertained to their children's chronic conditions. Nurses grouped information about managing behaviour, current research, current and future treatment as the next three most important information needs for parents. Therefore, not only did parents and nurses disagree on the most important parental information need, but a high percentage of nurses indicated that parents had three needs over and above those identified by parents. Parents and nurses showed agreement on their responses to community services needs. Both groups agreed that the primary need for parents was the need for help in locating competent regular and/or respite child care providers, although parents had a higher response rate on this theme than nurses. Within the support needs theme, parents had two high ranking needs which included 79 parent support group and more time for oneself, one's spouse and other children in the family. While these two high ranking needs were included in the top four parental needs ranked by nurses, there were some interesting differences. Nurses indicated that parents' most important support need was related to counselling (child's condition/ treatment, stress management); followed by time for oneself, spouse, and other children; ongoing nurse/team contact; and parent support group. The emphasis on counselling suggests that nurses believed that these parents had a number of psychosocial needs to be addressed. This fact is further supported by the number of lower ranking psychosocial needs that were identified by nurses. These findings, however, differ from several comparative studies in adult critical and acute care in which nurses ranked emotional, spiritual, and psychosocial needs lower than did patients and family members (Lilley, 1987; O'Neill Norris & Grove, 1986). Another difference is that nurses identified the need for ongoing nurse/team contact, which was not given high priority by parents. This could suggest that parents were satisfied with the amount and quality of nurse/team contact. Also, this finding could suggest that parents were coping better than assumed by nurses in this study, and did not need more nurse contact at the time they were completing the instruments. One final difference pertains to the family functioning needs identified by 37% of nurses in this study. While a considerable number of nurses felt that parents needed help discussing problems and reaching solutions within their families, parents did not identify this need. Possible reasons for nurses' emphasis on these needs are their educational and clinical experiences which stress family centred holistic nursing interventions. In summary, the responses of parents and nurses on the open-ended question revealed that, in spite of some agreement on themes of parental needs, they showed considerable disagreement on the prioritization of these themes. Both groups agreed.that 80 information, community services, and support needs were the three most important themes of parental needs, although different rankings of these themes showed that parents and nurses do not assign the same degree of importance to each of them. While parents ranked information, community services, and support as the most important needs, nurses gave support and information the highest priority. Nurses also identified one additional theme related to family functioning needs. Within the themes of needs, some similarities and a number of differences between the two groups were also revealed. Parents specifically identified and prioritized four needs which were 1) information about current research and future treatment, 2) help locating competent regular and/or respite child care providers, 3) parent support group, and 4) time for oneself, one's spouse, and other children. In addition to these four needs, nurses identified six others and, with one exception, assigned different priorities to them. That exception was help locating competent regular and/or respite child care providers which both groups agreed was the most important community services need. One further difference was that nurses identified two needs, one related to counselling (child's condition/treatment, and stress management) and the other related to help discussing problems and reaching solutions in the family which were not identified by parents. Summary The study's findings have been presented and discussed in this chapter. In summary, these findings are supported by other comparative studies in the fields of neonatal, and adult critical/acute care, which reflect similarities and differences in clients' and health care professionals' identification and prioritization of client needs (Lauer et al., 1982; Lilley, 1987; Matheson, 1987; O'Neill Norris & Grove, 1986; Young et al., 1988). Parents identified and prioritized three themes of needs on both the 35-item scale 81 and the open-ended question which were ranked as information, community services, and support. Within these themes, five specific needs were identified and prioritized although one support need identified on the 35-item scale, reading material about other parents with a similar child, was not repeated on the open-ended question. The information need for future services was broadened on the open-ended question to include future treatments and current research. The community services need was help locating competent regular and/or respite child care providers. Support needs were ranked as reading material about parents with a similar child, the opportunity to meet and talk with other parents with similar children, and finding more time for self. On the open-ended question, time for self was broadened to include time for spouse and other children. Nurses identified and prioritized four themes of needs on both the 35-item question and the open-ended question, which were ranked as support, information, community services, and family functioning. Within these themes, 13 specific needs were identified and prioritized on the 35-item scale and ten were highlighted on the open-ended question. As with parents, reading material about other parents with a similar child was not repeated on the open-ended question. Support needs were ranked as 1) more time for self; 2) opportunity to meet and talk with parents with similar child; 3) more time to talk with teacher, therapist, nurse; 4) reading material about parents with similar child; and 5) someone in the family to talk to more about problems. On the open-ended question, more time for self was broadened to include time for spouse and other children. Also, the highest ranking support need on the open-ended question was counselling related to the child's condition/treatment and stress management. This need addresses a number of psychosocial issues, and is supported by the lower ranking support needs identified by nurses. Information needs were ranked as 1) future services, 2) child's chronic condition, 82 3) management of child's behaviour, 4) growth and development, and 5) present services. On the open-ended question, the need for information about the child's condition was the highest ranked need. The community services need was help finding competent regular and/or respite child care providers. Family functioning needs were ranked as help discussing problems and reaching solutions, and help learning how to support each other during difficult times. A comparison of the two groups shows that parents and nurses identified many of the same needs on the survey's 35-item scale and open-ended question, confirming the validity of the needs described on the instrument. There was relatively strong agreement on the lack of parental needs related to community services, explaining to others, and financial needs. However, there were a number of striking differences on both the 35-item scale and open-ended question. First, nurses identified considerably more parental needs than parents on the information, support, and family functioning needs subscales. Further, a greater percentage of nurses identified more needs than parents on the support, information, and family functioning themes of needs on the open-ended question. Second, on the support needs subscale, parents ranked reading material about parents of similar child above more time for self and opportunity to meet and talk with other parents of similar child, whereas nurses ranked it below the latter two needs. This highly ranked need for parents was not repeated on the open-ended question by either group. Third, on both the Survey's 35-item scale and open-ended question, nurses indicated that parents had more psychosocial and family functioning needs than the parents, themselves, indicated. Fourth, more parents than nurses identified community services needs on the open-ended question. Statistically significant differences in parent and nurse responses were found on all subscales, with nurses showing consistently higher scores on all subscales. Those statistically 83 significant differences in which nurses indicated a need when parents did not include information needs related to child's condition and growth and development; support needs related to someone in the family to talk to more about problems and more time to talk with teacher, therapist, and nurse; and family functioning needs related to help discussing problems and reaching solutions, and help learning how to support each other during difficult times. The differences described above indicate that nurses are not consistent with parents of children with chronic conditions in identifying and prioritizing their needs. Without the use of a tool to collaboratively and systematically assess parental needs, it can be postulated that nurses may base their assessments of parental needs on assumptions and their own beliefs and values. These assumptions, beliefs, and values may be based on their educational and clinical experiences which stress family centred nursing interventions with a focus on holistic care, provision of information, and ongoing family support. This emphasis may lead nurses to concentrate more on parental deficits or needs rather than on parental strengths. According to some authors, this tendency can serve to weaken parental nurturant power (Dunst & Leet, 1986; Ferraro & Longo, 1985). Parents may be pressed to meet all needs before they are ready and, in addition, may be given the impression that their efforts are not adequate. Ultimately, this may undermine their confidence, leading to non-compliance and poor need fulfillment for themselves and their children with chronic conditions. Another factor affecting nurses' identification and prioritization of parental needs is the changing nature of parental needs. Needs change continuously for a number of reasons. Children with chronic conditions can move through periods of symptom exacerbation and poor control, which could increase parents' needs for information and 84 support. However, when these periods abate, parents may attempt to regain normalization of their lives, and in so doing have fewer needs for professional interventions (Anderson & Chung, 1982; Ferraro & Longo, 1985; Holaday, 1989; Knafl & Deatrick, 1986). Also, parents have numerous sources of support, most of which fall within the informal support network. This includes immediate and extended family members, parent support groups, friends, neighbours, work mates, and medical and family support libraries (Vincent, 1975; Whittaker & Garbarino, 1983). Further, the literature supports the fact that many families build stronger interpersonal relationships in the face of caring for children with chronic conditions, and can become very resourceful in developing good coping mechanisms (Rose & Thomas, 1987; Venters, 1981). Therefore, it appears that without collaboratively assessing parental needs with parents in a systematic manner, nurses may be in the position of basing their assessments on assumptions, beliefs, and values (Bailey, 1987; Darling, 1989; Dunst, 1985; Dunst & Trivette, 1989; Gilliss et al., 1989; Gliedman & Roth, 1980; Rose & Thomas, 1987; Seligman & Darling, 1989; Shelton et al., 1987). This ethnocentric approach can lead to wasted time and effort spent on unsuccessful nursing interventions. It can also be counterproductive for parents who need nursing interventions which help them strengthen their power to be managers of their children's care. In conclusion, the information presented and described in this chapter supports current literature on the subject of parental needs and also sheds new light on the degree to which parents and nurses are consistent in identifying and prioritizing parental needs in the context of caring for a child with a chronic condition. Inconsistencies found between parents and nurses in their perceptions of parental needs support Kleinman's (1978) analysis of the health care system which provided the conceptual framework for this study. 85 A s directed by this model, parents and nurses may be assessing parental needs from two different perspectives. In the following chapter, a summary of the research process leading up to study conclusions will be presented. Implications of these study findings for nursing practice and education, in addition to recommendations for future nursing research, will be discussed. CHAPTER FIVE Summary, Conclusions, Implications, and Recommendations Summary Increasing numbers of children with chronic conditions have an impact on the provision of health care, the family unit, and health care professionals. To provide health care for this population of children, hospitalizations and multiple support services are required, leading to escalating health care expenditures. One solution to this dilemma is to increase the utilization of hospital ambulatory services, thereby placing more responsibility for the management of these children in the hands of parents and members of multidisciplinary program teams, particularly nurses. Nurses and parents work together to balance professional recommendations with parental needs that evolve as these parents provide care for their children with chronic conditions and try to maintain the integrity of the family unit. Accurate assessment of these parental needs is the foundation on which successful nursing interventions rest. Therefore, it is important for nurses to be consistent with parents in identifying and prioritizing the parents' current needs as a first step in supporting them as the primary care-givers. The purpose of this study is to examine parental needs identified and prioritized by parents and nurses in the context of caring for children with chronic conditions and reporting similarities and differences between the two groups. Professional literature supports the idea that parents and professionals may differ in how they identify and prioritize parental needs which can lead to unsuccessful interventions, unfulfilled parental needs, and less than optimal care for children with chronic conditions. Based on this premise, the investigator used Kleinman's (1978) analysis of the health care system as the conceptual framework to guide the research. 86 87 Using a descriptive comparative design with paired parent/nurse participants, the study was conducted in the ambulatory services of a Western Canadian pediatric hospital. Thirty-eight parents and 13 nurses participated in the study. They were affilitated with ten ambulatory programs, whose mandates included the assessment, treatment, and follow-up of children with a wide variety of chronic conditions. Parent participants consisted of 34 mothers and 4 fathers, whose ages were mainly between 31 and 40 years. The majority of parents were married and had one to two children. Most parents travelled less than two hours to get to the hospital. Their children with chronic conditions were mainly diagnosed within the year prior to the collection of study data. There were 13 nurse participants, the majority of whom had nursing education beyond a nursing diploma and more than five years of experience with pediatric chronic conditions. Seven nurses had been associated with the ambulatory programs from six months to five years while for six nurses, the association was six to 20 years. The Family Needs Survey, developed by Bailey and Simeonsson (1985) and modified by this investigator, was used in conjunction with socio-demographic questionnaires for parents and nurses. The Survey includes 35-items, asking study participants to identify parental needs utilizing a three-point Likert scale. The scale ranges from "I definitely do not need help with this" to "not sure" to "I definitely need help with this." Also included in the survey is an open-ended question asking study participants to identify and prioritize parental needs. These needs may be newly identified or already identified in the Survey. Study results indicate that, while parents and nurses identify and prioritize some parental needs in a similar fashion, there are also some striking differences. These differences are most evident when comparing themes of identified parental needs and 88 specific needs within these themes. On both the 35-item scale and open-ended question of the survey, parents and nurses agreed that parents had needs related to three subscales/themes which were support, information, and community services. Nurses differed, however, by identifying parental needs in one additional subscale/theme related to family functioning needs. Both groups also differed in the consistency with which they prioritized these themes of parental needs in the open-ended question. While parents placed equal importance on all three, a high percentage of nurses prioritized support and information needs as the most important themes. Within the subscales/themes on both the 35-item scale and open-ended question, responses of parents and nurses reflected similarities and differences. The four most important needs for parents were 1) information: future services, including future treatments and current research; 2) community services: help locating competent regular and/or respite child care providers; 3) support: the opportunity to meet and talk with other parents of similar children; and 4) support: more time for self, spouse, and other children. Nurses also identified these specific parental needs, agreeing that 1) information about future services was the most important information need on the 35-item scale, and 2) help locating competent regular and/or respite child care providers was the primary community services need on both the 35-item scale and open-ended question. Both parents and nurses identified the need for reading material about other parents with a similar child on the 35-item scale, but did not repeat it on the open-ended question. This omission is puzzling in view of the fact that parents identified this need as their highest ranking support need. Nurses identified nine more needs on the 35-item scale and six more needs on the open-ended question related to information, support, and family functioning. Additional 89 information needs were related to the child's condition, behaviour management, growth and development, and present services. Additional support needs on the 35-item scale were related to more time to talk with teacher, therapist, and nurse; and someone in family to talk to more about problems. On the open-ended question, nurses identified the need for counselling pertaining to child's condition/treatment, and stress management. Family functioning needs identified by nurses on the 35-item scale were help discussing problems and reaching solutions, and help knowing how to support and understand one another. These needs were not given high priority by nurses on the open-ended question. On all subscales of the 35-item scale, nurses had consistently higher ratings than parents and statistically significant differences were found in the information, support, and family functioning subscales. Subscale items indicating statistically significant differences, where nurses identified parental needs and parents did not, include 1) information: child's chronic condition and growth and development; 2) support: someone in family to talk to more about problems and more time to talk with teacher, therapist, nurse; and 3) family functioning: help discussing problems and reaching solutions and help learning how to support each other during difficult times. These study findings provide more insight into the consistency with which parents and nurses identify and prioritize parental needs in the context of caring for children with chronic conditions and the similarities and differences between them. Based on these findings, a number of conclusions can be drawn. Conclusions Parents in this study have identified and prioritized needs that focus on practical daily issues related to finding out about how other parents in similar situations cope, keeping abreast of future developments in the field of their childrens' chronic conditions, 90 and obtaining child care providers. Based on parent responses on both the Survey's 35-item scale and open-ended question, there was general agreement throughout. These findings suggest that some of the parental needs described in the literature are real for these parents. Nurses in this study have tended to identify and prioritize parental needs that address practical daily issues as stated above, in addition to a considerable number of psychosocial issues. Psychosocial needs identified by nurses include learning to cope with their children's chronic conditions, stress management, and optimal family functioning. These findings indicate that nurses have a strong sense of the multiple parental needs which evolve when parents are faced with caring for children with chronic conditions. While parents and nurses have shown some similarities in identifying and prioritizing parental needs, both groups also indicated that they perceive parental needs differently. Nurses consistently identified more parental needs than did parents on both the 35-item scale and the open-ended question. In addition to identifying more psychosocial and family functioning needs than parents, nurses tended to place greater priority on support and information needs than parents. These findings show that while nurses may identify some of the same parental needs identified by parents, they may overemphasize the number of needs experienced by parents and may differ from parents in how they prioritize the needs. The major point that can be drawn from these findings is that parents perceive themselves as coping well whereas nurses indicate that parents have considerable needs for further health care interventions. Therefore, the information gathered in this study has important implications for nursing practice, education, and future research. Implications for Nursing Practice The study findings have a number of implications for nursing practice. Primarily, 91 they confirm that parents of children with chronic conditions and nurses involved in the care of these children may differ in their perceptions of parental needs. Differences in perceptions may be based on each group's educational, cultural, and psychosocial experiences with health-related episodes. For nurses, these experiences encourage them to enter into nursing interventions prepared to pay attention to the holistic needs of these children and their family members, particularly parents who are the primary care-givers. As interveners, nurses utilize many skills related to assessment, crisis resolution, teaching, advocacy, and counselling. For parents, these experiences shape their coping behaviours, as they try to balance professional recommendations and needs fulfillment for all family members, including themselves. As primary care-givers, parents develop nurturant power through the fulfilment of their personal needs. When parents and nurses come together in nursing interventions to co-manage the care of children with chronic conditions, the potential exists for this parental nurturant power to be either weakened or strengthened. Some authors claim that health care professionals can undermine the confidence of parents, thereby weakening their nurturant power, when they base health care interventions on assumptions of parental needs (Dunst & Leet, 1987; Ferraro & Longo, 1985). Assumptions may be based on educational and clinical bias, leading health care professionals to believe that dysfunction is a normal family pattern when caring for children with chronic conditions, and that parents have greater needs than they actually have. These assumptions tend to negate the resourcefulness of parents, when faced with crisis situations, in terms of developing stronger interpersonal relationships and seeking guidance from informal support networks. Also, parents may be under more pressure to work on fulfilling needs that are not real for them at the moment. They may begin to feel that concentrating on needs or deficits rather than strengths is counterproductive, causing them to feel less 92 confident that their actions will produce significant results. It is imperative, then, for nurses to identify parental needs through collaborative and systematic assessment in order to develop mutually defined priorities and goals which will strengthen parents' nurturant power. Strengthening parent nurturant power can occur when nurses, in collaboration with parents, accurately assess parental needs using a tool like the one utilized in this study. In a systematic way, parents and nurses can work in partnership to get a clearer picture of those needs which are important to parents at the time of the intervention. This type of assessment is important to do on a regular basis due to the changing nature of human needs. According to Gilliss et al. (1989), this involves "identifying the priority in which the child's and family's needs will be addressed" (p.307). From this point, parents and nurses can set specific goals and objectives related to each need. Subsequently, they can identify methods for reaching the goals in addition to specifying roles for parents and nurses in the process. In this way, intervention can proceed expediently, reaping the benefits of cost-effectiveness, positive parent-nurse relationships, fulfilled needs for parents, stronger parental nurturant power, and optimal care for children with chronic conditions. In situations where parents and nurses disagree on the prioritization of identified parental needs, nurses should be directed to consider factors influencing parents' perceptions of needs. One such factor is that parents have a hierarchy of needs which guides them in prioritizing needs (Dunst & Leet, 1987). Parents may work on basic needs before they begin to work on child-level needs. According to the authors, this explains why some families are labelled as non-compliant or resistive. Until their more basic needs are met, there is little likelihood that these parents will follow professional recommendations. With these factors in mind, nurses should be prepared to spend more time assessing and 93 negotiating with parents in the identification and prioritization of parental needs. Accurate identification and prioritization of parental needs has a direct influence on the provision of optimal health care for children with chronic conditions. Therefore, it is essential that nurses concentrate their efforts on targeting parental needs so that parents and nurses, together, can strengthen the role of parents as the primary care-givers. Implications for Nursing Education The nursing care of children with chronic conditions encompasses family units wherein the management of their care is centred. Logically, the optimal health of the family unit has a direct influence on the optimal health of these children. Therefore, it is essential that both practicing and student nurses have a thorough knowledge of the family unit, in addition to those skills which promote effective interpersonal relationships with family members. A number of theoretical frameworks would provide direction for nurses to gain this knowledge and acquire these skills. Family theory, studied from the perspectives of structure and function, development, and systems, would enhance nurses' understanding of the family unit and the continuously changing needs of its family members. In conjunction with family theory, family assessment and intervention theories would teach nurses about the process of assessing the health of the family unit and its individual family members, in addition to planning intervention strategies based on accurate assessments of their individual needs. Other frameworks which support family assessment and intervention theories are those which support collaboration between health care providers and clients in the assessment, planning, intervention, and evaluation phases of the nursing process. Collaborative frameworks are based on other theories which should also be included in nursing curricula. These theories support the view that professionals and clients may have 94 different perceptions of health-related episodes, and these differences should be acknowledged in the intervention process. Nurses need to understand that differences in perceptions of needs may be related to a number of variables such as age, gender, marital status, socio-economic status, culture, and geographical location. These theories would direct nurses to utilize systematic tools in order to accurately assess the needs of family members. Theory pertaining to the common experiences and needs of parents, regardless of their children's particular chronic conditions, would provide nurses with a framework that could be applied to all family units. This would give nurses a broader knowledge of how childhood chronic conditions impact on family units. Further, it would be important for nursing curricula to incorporate some sociological frameworks pertaining to informal self-help theory. This would provide nurses with a greater understanding of the variety of resources utilized by parents outside the professional arena and could subsequently assist nurses in planning their interventions with parents. Clinical experience for nursing students should include opportunities for them to utilize the theories described above, including the use of tools for the systematic assessment of parental needs. These experiences should occur in the three arenas in which children with chronic conditions are commonly managed: the home, ambulatory programs, and hospital acute care units. Recommendations for Further Research Further comparative study should be undertaken to determine the usefulness of a tool such as the one utilized in this study. Outcomes of nursing interventions need to be measured when parents and nurses, in collaboration, identify and prioritize parental needs using the tool and when parents and nurses do not use the tool. 95 Following the methodology of the current study and comparing nurses with parents of adolescents with chronic conditions, further comparative study should be undertaken to trial an adolescent tool similar to the one utilized in this study. A parental needs assessment tool needs to be developed, based on a population of children with chronic illnesses as opposed to children with developmental delays. 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Helping families to cope with handicapped children. Topics in  Clinical Nursing. July, 41-56. Appendix A Family Needs Survey (Parents) 104 FAMILY NEEDS SURVEY Donald Bailey Rune Simeonsson Frank Porter Graham Child Development Center The University of North Carolina at Chapel Hill c All Rights Reserved 1985 Family Name/ID_ Date Relationship to child_ INSTRUCTIONS: Listed below are some of the needs expressed by parents of special children. Please read each statement and decide if you need help in this area. Then circle the number (1, 2, or 3) which represents your response to the need. Definitely do not need help with this Not sure Definitely need help with this NEEDS FOR INFORMATION 1. I need more information about my child's condition or disability. 2. I need more information about how to handle my child's behavior. 3. I need more information about how to teach my child. 4. I need more information on how to play with or talk to my child. 5. I need more information about the services that my child might receive in the future. 6. I need more information about the services that are presently available for my child. 7. I need more information about how children grow and develop. 105 NEEDS FOR SUPPORT 1. I need to have someone in my family that I can talk to more about problems. 2. I need to have more friends that I can talk to. 3. I need to have more opportunities to meet and talk with parents of handicapped children, or children with chronic conditions. 4.1 need to have more time just to talk with my child's teacher, therapist, or nurse. 5.1 would like to meet more regularly with a counselor (psychologist, social worker, psychiatrist) to talk about problems. 6. I need to talk more to a minister or clergyman who could help me deal with problems. 7. I need reading material about other parents who have a child similar to mine. 8. I need to have more time for myself. EXPLAINING TO OTHERS 1. I need more help in explaining my child's condition to either my parents or my spouse's parents. 2. My spouse needs help in understanding and accepting our child's condition. 3. I need more help in how to explain my child's condition to his/her siblings. 4. I need help in knowing how to respond when friends, neighbors, or strangers ask questions about my child's condition. 5. I need help in explaining my child's condition to other children. Definitely Not Definitely Do Not Need Sure Need Help Help With This With This 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 COMMUNITY SERVICES 1. I need help locating a doctor who understands me and my child's needs. 2. I need help locating a dentist who will see my child. 3.1 need help locating babysitters or respite care providers who are willing and able to care for my child. 4. I need help in locating a day care center or preschool for my child. 5. I need help in getting appropriate care for my child in our church or synagogue nursery during services. FINANCIAL NEEDS 1. I need more help in paying for expenses such as food, housing, medical care, clothing, or transportation. 2. I need more help in getting special equipment for my child's needs. 3. I need more help in paying for therapy, day care, or other services that my child needs. 4. I or my spouse need more counseling or help in getting a job. 5. I need more help paying for babysitting or respite care. 6. I need more help paying for toys that my child needs. FAMILY FUNCTIONING 1. Our family needs help in discussing problems and reaching solutions. 2. Our family needs help in learning how to support each other during difficult times. 3. Our family needs help in deciding who will do household chores, child care, and other family tasks. 4. Our family needs help in deciding on and doing recreational activities. Definitely Not Do Not Need Sure Help With This 106 Definitely Need Help With This 107 What are your greatest needs at this time? These may include needs listed on the survey or other needs that you have. First, list up to and not more than ten needs (a, b,... j). Then, go over the list and rank order them according to their importance to you. I Rank c. Please remember to go back over this list of needs and rank order them, the most imortant need second most important need being 2, and so on. being 1, the Appendix B Family Needs Survey (Nurses) 109 Adapted Version for Nurses of the F A M I L Y NEEDS S U R V E Y Donald B.Bailey Rune Simeonsson Frank Porter Graham Child Development Center The University of North Carolina at Chapel Hil l (For use by nurses in the current study) Name/ID Ambulatory Program_ Date INSTRUCTIONS: Listed below are some of the needs expressed by families. Please read each statement and decide if the parent has a need in this area. Circle the numeral (1, 2, or 3) which you think represents the parent's need. NEEDS FOR INFORMATION 1. The parent needs more information about their child's condition or disability. 2. The parent needs more information about how to handle their child's behavior. 3. The parent needs more information about how to teach their child. 4. The parent needs more information on how to play with or talk to their child. 5. The parent needs more information about the services that their child might receive in the future. 6. The parent needs more information about the services that are presently available for their child. 7. The parent needs more information about how children grow and develop. Definitely Not Definitely Do Not Need Sure Need Help With This With This • 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 NEEDS FOR SUPPORT 1. The parent needs to have someone in the family that they can talk to more about problems. 2. The parent needs to have more friends that they can talk to. 3. The parent needs to have more opportunities to meet and talk with parents of handicapped children, or children with chronic conditions. 4. The parent needs to have more time just to talk with their child's teacher, therapist, or nurse. 5. The parent would like to meet more regularly with a counselor (psychologist, social worker, psychiatrist) to talk about problems. 6. The parent needs to talk more to a minister or clergyman who could help them deal with problems. 7. The parent needs reading material about other parents who have a child similar to theirs. 8. The parent needs to have more time for herself/himself. EXPLAINING TO OTHERS 1. The parent needs more help in explaining their child's condition to either their parents or spouse's parents. 2. The parent's spouse needs help in understanding and accepting their child's condition. 3. The parent needs more help in how to explain their child's condition to his/her siblings. 4. The parent needs help in knowing how to respond when friends, neighbors, or strangers ask questions about their child's condition. 5. The parent needs help in explaining their child's condition to other children. Definitely Do Not Need With This Not Sure 110 Definitely Need Help With This I l l Definitely Not Definitely Do Not Need Sure Need Help Help With This With This COMMUNITY SERVICES 1. The parent needs help locating a doctor who understands them and their child's needs. 2. The parent needs help locating a dentist who will see their child. 3. The parent needs help locating babysitters or respite care providers who are willing and able to care for their child. 4. The parent needs help locating a day care center or preschool for their child. 5. The parent needs help in getting appropriate care for their child in their church or synagogue nursery during services. FINANCIAL NEEDS 1. The parent needs more help in paying for expenses such as food, housing, medical care, clothing, or transportation. 2. The parent needs more help in getting special equipment for their child's needs. 3. The parent needs more help in paying for therapy, day care, or other services that their child needs. 4. The parent or their spouse need more counseling or help in getting a job. 5. The parent needs more help paying for babysitting or respite care. 6. The parent needs more help paying for toys that their child needs. FAMILY FUNCTIONING 1. The family needs help in discussing problems and reaching solutions. 2. The family needs help in learning how to support each other during difficult times. 3. The family needs help in deciding who will do household chores, child care, and other family tasks. 4. The family needs help in deciding on and doing recreational activities. 112 What are the parent's greatest needs at this time? These may include needs listed on the survey or other needs that you have identified. First, list up to and not more than ten needs (a, b, ... j). Then, go over the list and rank order them according to your perception of their importance to the parent. Rank b. c. d. e. f. h. Please remember to go back over this list of needs and rank order them, the most important need being 1, the second most important need being 2, and so on. 113 Appendix C Socio-demographic Tool (Parents) SOCIO-DEMOGRAPHIC TOOL FOR PARENTS 114 Parent's Name Relationship to child Date Instructions: Please answer all of the following questions in sections A, B, and C. The questions in section A are related to you as the parent, and sections B and C are related to your child and your family respectively. A. Parent 1. What is your age? (under 20) (21-30) (31-40) (41-50) (51-60) 2. What level of education have your achieved? (elementary school) (secondary school) (post-secondary school training/college (university/college) 3. What is your marital status? (married) (separated/divorced) (common-law) 4. What is the first language used in your home? 5. Do you travel more than 2 hours to bring your child to the ambulatory program? yes no 115 B. Child 1. What is the sex of your child? male female 2. What is the age of your child? years months 3. What type(s) of chronic condition (s) does your child have? 4. When was your child diagnosed with the above chronic condition(s)? C. Family 1. How many children are there in your immediate family? 2. What are the ages of your children? 3. Do any of your other children have a chronic condition? If so, please describe briefly. Appendix D Socio-demographic (Nurses) SOCIO-DEMOGRAPHIC TOOL FOR NURSES Nurse'sName AmbulatoryProgram Date Instructions: Please answer all of the following questions. 1. What level of education have you achieved? (diploma) (baccalaureate) (masters) 2. How long have you been associated with this ambulatory program? (1-5 years) (11-15 years) (6-10 years) (16-20 years) 3. How long have you cared for children with chronic conditions? (1-5 years)_ (11-15 years) (6-10 years) (16-20 years) 4. How long have you personally experienced living in the same family as a child/children with a chronic condition? (not at all)_ (1-5 years)_ (6-10 years) (11-15 years) (16-20 years) Appendix E Information for Study Participants (Parents) Appendix F Information for Study Participants (Nurses) Appendix G Information for Program Directors 124 Dear Dr. I am currently a student in the Master of Science in Nursing Program at the University of British Columbia. From my personal experience as a parent and my professional experience as an ambulatory care nurse at B.C. Children's Hospital, I am very interested in learning more about the accuracy with which nurses assess parental needs in the context of caring for a child with a chronic condition. Accurate assessment is the foundation on which effective nursing interventions rest. However, it is not known how accurately nurses identify and prioritize the needs of parents whose children have chronic conditions. When nurses proceed with interventions based on inaccurate assessments, the results can be unsuccessful interventions that do not meet parental needs. My purpose for doing this study is twofold. First, I propose to examine how accurately a particular group of nurses in a particular setting identify and prioritize parental needs in the context of caring for a child with a chronic condition. Second, I propose to identify similarities and differences between nurses' and parents' identification and prioritization of parental needs. To fulfill the sample requirements for this study, I would like to include nurses and parents affiliated with your program who meet the study's selection criteria. Participants could include nurses who have worked in your program for at least six months, and parents who 1) are literate in spoken and written English; 2) have a child, four years of age and under, who has been diagnosed as having a chronic condition; and 3) parents who have had significant personal and telephone contact with the program nurse(s). The nurse(s) in your program who agree to participate would be asked to compile an alphabetical list(s) of parents from their caseload(s) who meet the study's sample selection criteria. Parents on the nurse(s) list(s) will be contacted by the nurse and asked for their permission to be included on the list as potential study participants. Those parents who agree to be included on the list will be mailed or given an information letter and parent consent form. Once signed consent forms are received by the researcher, parents will be mailed or given two questionnaires: a 30 minute parent needs survey and a 10 minute socio-demographic tool. Upon receipt of a consenting parent's completed questionnaires, I would ask the respective nurse care-giver in your program to complete a 30 minute parent needs survey and a five minute socio-demographic tool within three to five days. The maximum time that a nurse would be expected to dedicate to this study is three to four hours in a six to eight week period. I would be pleased to provide you with copies of the questionnaires, as well as answer any specific questions that your might have about my research. Carolyn Graves U.B.C. School of Nursing B.C.C.H. Appendix H Consent for Participation in the Study (Parents) 126 Consent for Participation in the Study (for parents) "Comparative Study of Nurses' and Parents' Identification and Prioritization of Parental Needs in the Context of Caring for a Child with a Chronic Condition" I agree I do not agree to participate in the study to determine how closely nurses' identification and prioritization of parental needs agrees with the parents' identification and prioritization of their own needs in the context of caring for a child with a chronic condition. I have read the explanatory letter from Carolyn Graves, and have had the opportunity to discuss the study with her. I understand: (1) the data collection process and the implications for my time, (2) that my participation is voluntary and that I may withdraw at any time, (3) that any information identifying me as a participant in this study will remain strictly confidential, (4) that withdrawal from the study at any time will not affect the care that my child is currently receiving or will receive in the future. Date Signature Witness Appendix I Consent for Participation in the Study (Nurses) 128 Consent for Participation in the Study (for nurses) "Comparative Study of Nurses' and Parents' Identification and Prioritization of Parental Needs in the Context of Caring for a Child with a Chronic Condition" I agree I do not agree to participate in the study to determine how closely nurses' identification and prioritization of parental needs agrees with the parents' identification and prioritization of their own needs in the context of caring for a child with a chronic condition. I have read the explanatory letter from Carolyn Graves and have had the opportunity to discuss the study with her. I understand: (1) the data collection process and the implications for my time, (2) that my participation is voluntary and that I may withdraw from the study at any time, (3) that any information identifying me as a participant in this study will remain strictly confidential. Date Signature Witness 129 Appendix J Group Means and Standard Deviations for Family Needs Survey Subscales APPENDIX J Group Means and Standard Deviations for Family Needs Survey Subscales Parents Nurses Rating Scale Item (P = = 38) (N = = 13) M SD M SD 11 Information Needs 1.97 .89 2.58 .76 12 1.82 .90 2.16 .89 13 1.87 .91 1.97 .92 14 1.42 .76 1.47 .73 15 2.65 .59 2.74 .60 16 1.92 .88 2.08 .85 17 1.65 .79 2.13 .84 SI Support Needs 1.34 .67 2.16 .68 S2 1.53 .83 1.95 .73 S3 2.13 .88 2.47 .83 S4 1.61 .72 2.29 .84 S5 1.53 .76 1.90 .76 S6 1.18 .56 1.79 .58 S7 2.47 .86 2.29 .73 S8 2.26 .89 2.66 .63 E l Explaining to Others Needs 1.40 .76 1.87 .81 E2 1.29 .61 1.92 .91 E3 1.24 .59 1.53 .76 E4 1.47 .73 1.89 .84 E5 1.50 .69 1.63 .68 C l Community Services Needs 1.34 .71 1.53 .69 C2 1.29 .61 1.42 .50 C3 2.03 .92 2.26 .80 C4 1.47 .73 1.61 .82 C5 1.18 .56 1.76 .43 F l Financial Needs 1.47 .76 1.58 .79 F2 1.24 .59 1.26 .64 F3 1.26 .55 1.58 .79 F4 1.08 .27 1.45 .65 F5 1.29 .65 1.76 .79 F6 1.08 .36 1.29 .52 F F l Family Functioning Needs 1.45 .76 2.26 .86 FF2 1.55 .83 2.08 .85 FF3 1.29 .65 1.58 .55 FF4 1.42 .68 1.76 .68 

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