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Parenting the pre-school aged child with asthma : a secondary analysis using the Canam adaptive task… Meyerhoff, Heather P. 1997

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PARENTING THE PRE-SCHOOL AGED CHILD WITH ASTHMA A SECONDARY ANALYSIS USING THE CANAM ADAPTIVE TASK FRAMEWORK by HEATHER P. MEYERHOFF BScN, McMaster University, 1986 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES School of Nursing We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA August 1997 © Heather P. Meyerhoff, 1997 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. Department The University of British Columbia Vancouver, Canada Date DE-6 (2/88) 11 Abstract A significant population of children and their families manage chronic illness as part of their daily lives. Asthma is one of the most common acute and chronic diseases in children and accounts for a major cause of school absenteeism, visits to emergency departments, and hospital admissions. The family, primarily the parents, must take on the responsibility of caring for these children on a day-to-day basis. The Canam Adaptive Task Framework (ATF) identifies and describes the common adaptive tasks facing parents in managing their child's chronic condition and is useful in guiding assessment and interventions with these parents. The purpose of this study was to identify the adaptive tasks from the Canam ATF that were expressed by parents of pre-school aged children with asthma in part of a previously existing qualitative data set. The research question for this study was: Does the Canam ATF fully accommodate the expressions of parenting the pre-school age child with asthma using an existing set of interview data? Qualitative data for this study were originally collected as part of a larger study. Interview data from 10 mothers and 8 fathers in 10 families, were selected from this larger study for participation in this secondary analysis. Each family was interviewed three times and their verbatim interview transcripts were1 analyzed using latent content analysis techniques. The Canam ATF provided the conceptual framework and content codes to guide the analysis. The findings in this study were categorized and discussed according to the Canam ATF and the literature. It is significant that all of the adaptive tasks in the ATF were accounted for in the data and that no new categories were identified. Therefore, it is concluded that the Canam ATF was able to folly accommodate the expressions of parenting a pre-school aged child with asthma. Although many of the findings are specific to the management of asthma, the overriding principles may be applied to children with other chronic illnesses. One role of the nurse is to iii assess whether or not parents are accomplishing each task, and if not, to assist them to acquire the necessary knowledge, skills, or resources they need to enable them to achieve the task. iv Table of Contents Abstract ii Table of Contents iv List of Tables vii Acknowledgements viii CHAPTER 1: INTRODUCTION TO THE STUDY 1 Background of the Problem 1 Conceptual Framework 4 Research Question 4 Definition of Terms 4 Assumptions 5 Purposes of the Study 5 Summary 6 CHAPTER 2: CONCEPTUAL FRAMEWORK AND LITERATURE REVIEW 7 Canam Adaptive Task Framework 7 Accept the Child's Condition 7 Manage the Child's Condition on a Day-to-Day Basis 8 Meet the Child's Normal Developmental Needs 8 Meet the Developmental Needs of Other Family Members 9 Cope With Ongoing Stress and Periodic Crises 10 Assist Family Members to Manage Their Feelings 11 Educate Others About the Child's Condition 12 Establish a Support System 12 Summary 13 Effects of Childhood Asthma on Parents 13 Effects of Childhood Chronic Illness on Parents 18 Summary 23 CHAPTER 3: METHODS 25 Research Design 25 Sample and Sampling 26 Selection Criteria 27 Study Participants 28 Data Collection and Setting 29 Data Analysis 29 Coding : 30 V Validity and Reliability 31 Validity 31 Reliability 33 Ethics 34 Summary 35 CHAPTER 4: PRESENTATION OF THE FINDINGS 36 Description of the Sample 36 The Parents 36 The Pre-School Aged Children with Asthma 38 Canam Adaptive Task Framework 38 Accept the Child's Condition 38 Diagnosis 39 Comparison with other children 41 Part of normal family routine 42 Manage the Child's Condition on a Day-to-Day Basis 43 Lack of information 43 Relationship with physicians and the health care system 45 Prevention 46 Unpredictability 47 Medication administration 48 Parenting 49 Meet the Child's Normal Developmental Needs 51 Normalizing 51 Physical impact 53 Behaviour management 53 Meet the Developmental Needs of Other Family Members 55 Siblings 55 Parents 55 Cope With Ongoing Stress and Periodic Crises 57 Concern for the future 57 Uncertainty 57 Hospitalization 58 Assist Family Members to Manage Their Feelings 60 Parents 60 Child 61 Educate Others About the Child's Condition 62 Child 62 Family and friends 63 Other caregivers 64 Establish a Support System 64 Family and friends 64 Seeking out resources 65 Financial implications 66 Summary 66 vi CHAPTER 5: DISCUSSION AND APPLICABILITY OF THE FINDINGS 67 Canam Adaptive Task Framework 67 Accept the Child's Condition 67 Manage the Child's Condition on a Day-to-Day Basis 69 Meet the Child's Normal Developmental Needs 74 Meet the Developmental Needs of Other Family Members 76 Cope With Ongoing Stress and Periodic Crises 77 Assist Family Members to Manage Their Feelings 78 Educate Others About the Child's Condition 79 Establish a Support System 80 Limitations of the Study 81 Summary 82 CHAPTER 6: SUMMARY, CONCLUSIONS, AND RECOMMENDATIONS 83 Summary 83 Conclusions 84 Recommendations for Practice 85 Recommendations for Research 86 Significance of the Study 87 REFERENCES 88 APPENDICES 96 Appendix A: Letter to Physicians 96 Appendix B: Introduction Letter to Parents 97 Appendix C 98 Vll List of Tables Table 1 Characteristics of Parents of Pre-School Aged Children with Asthma 37 Table 2 Characteristics of Pre-School Aged Children with Asthma 39 Vll l Acknowledgements I would like to acknowledge the following people who contributed to the writing of this thesis and the completion of this degree: The families who so freely and willingly shared their stories about what it is like to live with a child with asthma. The members of my thesis committee: Jinny Hayes, Connie Canam, and Judy Lynam who spent countless hours advising, editing, and providing encouragment. Judy, thanks for your knowledge and expertise and for reading in such a "timely" fashion when the crunch was on. Connie, thanks for providing the framework on which this thesis is based and for filling in for Jinny over a very busy summer. And a very special thank you to Jinny, my chairperson, for making a very important phone call to me when I had made a decision to leave the Master's program after the birth of my first son. Without that call, I may never have completed this degree. Your constant encouragement and availability throughout this process are appreciated more than words can express. Carol Mitchell who stayed up late on the night before her vacation to complete data analysis for me as a content expert and reliability check. The many friends and family who offered encouragement, support, and free babysitting. Thanks especially to my parents for always being there and for giving up a week of their vacation to get me started on this thesis. Their love, support, and confidence in my abilities have been greatly appreciated. My sons, Nathanael and Caleb, who offered me unconditional love, smiles, and cuddles when I needed them most and gave me the incentive to finish. I love you both so much. Finally, I dedicate this thesis to my husband, Greg. You were always there with a shoulder to lean on or cry on. You offered encouragement when I felt like quitting, and helped me to believe in myself. I love you with all my heart. 1 CHAPTER 1: INTRODUCTION TO THE STUDY Background of the Problem A significant population of children and their families manage chronic illness as a way of life (McCarthy & Gallo, 1992). In Canada and the United States the prevalence of chronic illnesses in children is estimated from 5.2% to 31% of all children (Cadman, Rosenbaum, Boyle & Offord, 1991; Newacheck, Stoddard, & McManus, 1993; Palfrey et al, 1991; Statistics Canada, 1991). The large range in estimates of chronic illness prevalence among children is due to the inconsistency with which the population has been defined and the different dimensions of chronic illness that have been considered (Perrin et al., 1993). The most severe conditions are estimated to affect up to 1.5% of children (Newacheck & Taylor, 1992; Palfrey et al., 1991). Asthma is one of the most common acute and chronic diseases in children, affecting approximately 10-20 per cent of all children (Eiser, Eiser, Town & Tripp, 1991; Murphy & Kelly, 1993; Statistics Canada, 1991). Even more alarming is the steady increase in the incidence, severity, mortality, and costs associated with this disease (Bechler-Karsch, 1994; Krahn, Berka, Langlois, & Detsky, 1996; Ryan-Wenger & Walsh, 1994; Rachelefsky, 1995; Statistics Canada, 1991). Asthma is a major cause of school absenteeism and responsible for a major proportion of visits to emergency departments and admissions to hospital (Betz, Hunsberger, & Wright, 1994; Canadian Institute of Child Health, 1994; Capen, Dedlow, Robillard, Fuller, & Fuller, 1994; Wong, 1995). The impact of asthma has even greater significance when one considers that each of these children is part of a family unit. Both the child and the family must live with the effects of asthma on a daily basis. Families, and primarily parents, must take on the responsibility of caring for these children since hospital admissions are oriented to acute, episodic illnesses (Clements, 2 Copeland, & Loftus, 1990; Copeland & Clements, 1993). As health care regimes have become more complex, parents' roles and responsibilities have expanded significantly. Not only are parents responsible for giving physical care, but they must become skilled in clinical assessment, clinical decision making, and coordinating care (Anderson & Elfert, 1989). The research reported here explored one aspect of parenting the child with asthma: their adaptive tasks, using the Canam Adaptive Task Framework which will be described in a later section. While not completely understood, asthma is known to have three characteristics: (a) airway constriction that is at least partially reversed with medication, (b) inflamed airways, and (c) hypersensitive airways. As a result, the bronchial airways react more readily to certain substances or situations (that is, triggers). Most children with asthma have all three characteristics to some extent, contributing to the symptoms most commonly associated with asthma: coughing, shortness of breath, wheezing, and mucous congestion (Rachelefsky, 1995). Triggers to an acute asthma episode may include allergens, irritants, weather changes, infections, exercise, or emotional factors (MacDonald, 1996). Asthma is a chronic disease with episodic symptoms, therefore most children have asthma all the time and not just when they have symptoms. The severity of the illness varies between children and within the affected child as well. Some children may be symptom-free for extended periods without medication whereas other children require frequent or continuous medical therapy or may even experience life-threatening status asthmaticus (Wong, 1995). The goals of asthma management are to prevent disability and to assist the child to live as normal and happy a life as possible (Wong, 1995). Children and parents do this by vigilant monitoring, medication, and avoidance of triggers. The treatment and management of asthma can adversely affect the quality of life for the child and the family (Bloomberg & Strunk, 1992; 3 Townsend et al., 1991). Schooling is frequently interrupted, family activities may be limited, the child's normal sleep pattern may be disrupted, and frequent infections disrupt family schedules. The avoidance of known triggers may impose further limitations on the child and family. Parents often regard their child's asthma as life threatening, even if the asthma is mild. Children are often fearful of attacks and worry about their physical abilities. While the onset of asthma may be at any age, 80-90% of children have their first symptoms before 4 or 5 years of age (Wong, 1995). Pre-school age children have improved verbal skills and can begin to communicate their asthma symptoms to their parents and others. Although they are still in the preoperational period of intellectual development (Piaget, 1952), they are able to understand some of their asthma management and many are anxious to learn new skills independently as they develop a sense of initiative (Erikson, 1959; Ladebauche, 1997). Chronic illnesses, such as asthma, may result in fewer opportunities to practice initiative or participate in play activities that promote normal development (Jost, 1996). Good asthma management is vital so that pre-school age children may participate in these activities. I originally became interested in the child with asthma within the family system through my experience as a pediatric nurse in an acute care hospital. In that setting I was involved with family education and the treatment of children during acute exacerbations of asthma. It was not until I became the mother of two children with asthma, however, that I began to understand and appreciate the implications of managing this illness on a day-to-day basis. This study examined the experience of parents when they have a pre-school aged child with asthma by analyzing an existing data set of interview transcripts using the categories of the Canam Adaptive Task Framework through the methods of latent content analysis. These data were generated from a 4 phenomenological study that asked parents to describe what it was like to live with a child with asthma on a daily basis. The details of this larger study are described in Chapter 3. Conceptual Framework As already mentioned, parents have the primary responsibility for the day-to-day management of their child's chronic condition, especially in the pre-school age child. The ability of the parents to cope with their child's condition has a major influence on the coping of other family members, including the child with the chronic condition. The Canam Adaptive Task Framework (ATF) (Canam, 1993) identifies and describes the common adaptive tasks facing parents in managing their child's chronic condition and is useful in guiding assessments and interventions with these parents. Based on the literature and my experience, I believe that the ATF is a useful tool to help understand the experience of parents who have a child with asthma. This framework provided the conceptual framework for this research study. It is presented in more detail in Chapter 2. Research Question Does the Canam Adaptive Task Framework fully accommodate the expressions of parenting the pre-school age child with asthma using an existing set of interview data? Definition of Terms For the purposes of this study, the following terms are defined: 1. Parent: A mother or father of a pre-school age child with asthma. 2. Parenting: The day-to-day responsibility of caring for a child, including decision-making. 3. Pre-school age child: A child between the ages of 3 and 5 years. 4. Asthma: airway obstruction or a narrowing that is characterized by bronchial irritability after exposure to various stimuli and that is reversible either spontaneously or with treatment (American Academy of Pediatrics, 1994). Assumptions The following assumptions were made in this study: 1. Parents of children with asthma share commonalities with parents of children with other chronic conditions. 2. • Parents are able to articulate their experience of living day-to-day with a child who has asthma. 3. Parents interviewed in the original study expressed their genuine feelings, views, and opinions about their experiences in caring for a child with asthma. Purposes of the Study This qualitative exploratory study used secondary analysis of an existing data set to explore the adaptive tasks of parents of children with asthma, using the methods of latent content analysis. The goal was to improve understanding of the adaptive tasks that parents must accomplish when they have a child with asthma. The purposes of this study were to: 1. Identify the adaptive tasks from the Canam ATF (1993) that are expressed by parents of pre-school aged children with asthma who contributed interview data for the original research. 2. Determine if there are additional adaptive tasks expressed by these parents when they originally spoke with a researcher about the impact of their pre-school aged child with asthma. 6 Summary The prevalence of asthma in the pediatric population makes it an important area of study. Asthma may present challenges in day-to-day family management that are similar to other chronic childhood diseases but also ones that are unique to the child with asthma. The ability of the family to respond to the daily demands of a chronic illness dictates the quality of the child's and family's life (McCarthy & Gallo, 1992). Parenting a child with a chronic illness involves qualitatively different work than parenting a child without a chronic illness (Deatrick, Knafl, & Walsh, 1988) and quantitatively more of it (Hayes, 1992). The purpose of this study was to contribute to the understanding of the experience of parents when they have a child with asthma using the Canam ATF. For this study, existing interview data from parents of a pre-school aged child with asthma were analyzed using the methods of latent content analysis. In order to understand the experience of families when they have children with asthma, relevant research is presented as it pertains to parenting a child with asthma as well as parenting a child with a chronic illness. This literature, as well as a detailed outline of the Canam ATF, are presented in Chapter 2. The methods of secondary analysis combined with content analysis as used for this study are described in Chapter 3. This includes a full explanation of the original study and the data set that was chosen for analysis for this secondary analysis. 7 CHAPTER 2: CONCEPTUAL FRAMEWORK AND LITERATURE REVIEW The purposes of this chapter are to provide the conceptual background for this study and to present related and relevant research that supported the need for this study and the perspective to be taken in addressing it. The Canam Adaptive Task Framework (1993) is presented and a brief overview of related literature is also presented to provide context for this secondary analysis. The content areas reviewed include the impact of childhood asthma and chronic illness on parents: Emphasis is placed on research studies that include the pre-school age child. Canam Adaptive Task Framework The Canam ATF identifies and describes the common adaptive tasks that parents face when they have a child with a chronic illness. These are to: 1. Accept the child's condition 2. Manage the child's condition on a day-to-day basis 3. Meet the child's normal developmental needs 4. Meet the developmental needs of other family members 5. Cope with ongoing stress and periodic crises 6. Assist family members to manage their feelings 7. Educate others about the child's condition 8. Establish a support system These tasks were derived from the theoretical, research, and clinical literature on family coping with a chronically ill or disabled child. Each task is summarized below. Accept the Child's Condition A difficult task facing parents is coming to terms with their child's chronic illness or disability. Initial shock and disbelief is often followed by a period of denial while parents try to 8 grasp the meaning of their child's condition (Austin, 1991; Johnston & Marder, 1994). The task for parents is to "assign personally significant meaning to their child's chronic illness which allows them to accept it and carry on with their normal family patterns" (Canam, 1993, p. 47). Parents use a number of coping strategies to meet this task, such as defining the child's condition within a previously existing family philosophy (Venters, 1981), actively practising religious beliefs (Friedrich, Cohen, & Wilturner, 1988), adopting a positive interpretation of the future (Burkhart, 1993; Ray & Ritchie, 1993; Venters, 1981), perceiving the situation as a challenge (McCubbin & Patterson, 1983), or comparing their situation with that of other parents who have a chronically ill child (Frey, Greenberg, & Fewell, 1989). Manage the Child's Condition on a Day-to-Day Basis In order to manage their child's condition effectively, parents need accurate and complete information about the disease and its treatment (Canam, 1986; Chesler & Yoak, 1984; Gibson, 1995; MacDonald, 1995, 1996). Canam (1986) found that parents who have a good understanding of their child's chronic illness report a sense of control of their situation. This is in contrast to parents who lack information and experience uncertainty, anxiety, and loss of control (Krulik, 1982). The task for parents is to effectively manage their child's condition on a day-to-day basis. An important coping strategy to meet this task is to form positive relationships with members of the health care team in order to use them as a resource in becoming knowledgeable about the management of their child's illness (Babarin, Hughes, & Chesler, 1985). Meet the Child's Normal Developmental Needs Parents must constantly weigh the potential risk to the child's physical health against the potential benefits to his or her emotional health of participating in certain activities (Hobbs, Perrin, & Ireys, 1985). It is imperative that parents focus on the child and not on the illness or 9 disability in order to meet the child's normal developmental needs within the context of the chronic condition. This is linked to, and dependent on, the task of accepting the child's condition as well as upon parents having an understanding of the major developmental tasks facing their child at each stage of growth and development and how the child's illness may impact these tasks. Parents may be reluctant to discipline because they do not know how much of the child's misbehaviour is related to the child's condition (Canam, 1985). Parents use normalization as a coping strategy to minimize the impact of the child's condition and meet developmental needs by engaging in usual parenting activities (Burkhart, 1993; Deatrick et al., 1988; Knafl, Breitmayer, Gallo, & Zoeller, 1996; Knafl & Deatrick, 1986). This involves relating to the child with the chronic condition in the same manner as they do the other children in the family and not giving them 'special treatment'. Children with chronic conditions appear to have similar needs to their healthy peers in terms of the progression through developmental stages and the challenge of coping with the predictable tasks of childhood (Burkhart, 1993). Parents need to set appropriate limits on their child's behaviour to help foster a sense of security. Meet the Developmental Needs of Other Family Members Parents must balance the time and energy they invest in their child who is chronically ill with personal investments in themselves and other members of their family (McCubbin et al., 1982; Stewart, Ritchie, McGrath, Thompson, & Bruce, 1994). The parental task is to preserve "relationships within the family by balancing the needs of their chronically ill child with the needs of other family members and the family as a unit (Canam, 1993, p. 49). Parents who become so involved with the needs of their ill child may neglect their own needs as well as those of their family. Relationship difficulties often arise from persistent strain in families with a chronically ill child (McCubbin et al, 1982), especially in marital relationships (Sabbeth & 10 Leventhal, 1984). Although there are times when the needs of the ill child become a priority, dysfunctional family relationships may result when the continual focus is on the ill child at the expense of the needs of other family members. One positive strategy used by families to cope with the chronic illness of a child is open communication among family members and a willingness to share responsibilities (Power, 1985). Flexibility is needed to help family members adapt to chronic illness within the family and the ability of family members to modify their roles and redefine personal expectations is an important coping strategy (MacVicar & Archbold, 1976). McCubbin et al. (1982) identified several other coping strategies utilized by families, such as: respecting one another, sharing feelings and discussing decisions, helping each other, problem-solving, and encouraging autonomy and independence. Mothers coped by taking care of themselves, while fathers reported placing greater emphasis on investing time and energy in their job (McCubbin et al., 1982). Cope With Ongoing Stress and Periodic Crises Families who have a chronically ill child have a great deal of ongoing stress and must deal with periodic crises that arise related to their child's condition (Eiser et al., 1991; Hobbs et al., 1985; Ray & Ritchie, 1993). A number of sources of stress have been identified: coping with illness-related demands (Meyerowitz & Kaplan, 1967; Ray & Ritchie, 1993), repeated hospitalizations (Burke, Costello, & Handley-Derry, 1989; Ray & Ritchie, 1993), anxieties about the child's present and future vulnerability (Canam, 1987), and the unpredictability of the disease (Burkhart, 1993; Cohen, 1993, 1995; Ferrari, Matthew, & Barbaras, 1983; MacDonald, 1995). Some families may be strengthened by the experience of coping with their stress and crisis periods while other families become overwhelmed by a pile-up of stressors that tax and exceed the family's resources (McCubbin & Patterson, 1983). 11 The task for parents is to "prevent the accumulation of stress that can overwhelm the family's resources and lead to crisis" (Canam, 1993, p. 49). A number of coping strategies are used by parents to meet this goal, including: problem-solving to clarify the issues and tasks, decreasing the intensity of emotional reactions, and meeting the family's developmental needs. Spiritual beliefs may help the parents feel less stressed by providing them with meaning and hope (Mealey, Richardson, & Dimoco, 1989). Assist Family Members to Manage Their Feelings Family members who live with a child with a chronic illness experience a broad range of feelings such as anxiety, guilt, fear, resentment, anger, and depression (Austin, 1991; Betschart, 1988; Buchanan, LeBarbera, Roelofs, & Olsen, 1979; Burkhart, 1993; Canam, 1987; Gibson, 1995; Jerrett, 1994; Johnston & Marder, 1994; MacDonald, 1996). Most parents need support to work through their feelings at some time during their child's illness (Hobbs et al., 1985). Parents have difficulty managing their own emotions and they also have difficulty helping their children manage their feelings (Canam, 1987). The parents' task is to learn to manage their own feelings and to help their children manage theirs. This involves being able to "identify and express their own feelings and to help their children identify and express feelings about living with a chronic illness" (Canam, 1993, p. 50). One strategy that parents use to manage their emotions is to find a supportive individual with whom they can share their concerns. This is frequently other parents with chronically ill or disabled children (Burkhart, 1993; Dunst, Trivett, Davis, & Cornwall, 1988; Lynam, 1987). Parents who have had the opportunity to cope with their own feelings are more prepared to help their children cope with their feelings (Canam, 1987). 12 Educate Others About the Child's Condition Parents may have difficulty discussing their child's chronic illness with the ill child as well as others outside the family (Canam, 1985, 1986) due to concern that it will negatively affect their child if others know about the illness. The general public, however, is in need of education about children with chronic conditions to correct damaging stereotypes and myths (Homer, Rawlins, & Giles, 1987). The task for parents is "not only to gain an accurate and complete understanding of their child's condition themselves but to educate others, including the child with the condition, the child's siblings, extended family members, friends, neighbours, teachers, and others with whom their child comes in contact" (Canam, 1993, p. 50). Parents meet this task by answering the child's questions as they arise in an honest manner, teaching the child and sibling the facts about the disease and how to explain the condition to others, and communicating with others in an honest and factual way (Canam, 1986). Establish a Support System Parents must establish a support system within the communities in which they live in order to effectively cope with a child's chronic condition (Sarason, Johnson, & Siegel, 1978). Social support is a powerful mediator of personal well-being (Dunst et al., 1988) and family adjustment (McCubbin et al., 1980). In order to meet their needs for esteem, network, and emotional support, families need to maintain social relationships outside the family unit (McCubbin, 1984). The demands of having a chronically ill child may make it extremely difficult for parents to develop support networks or utilize existing resources. The task for parents is to "establish a support system within their community that can assist them in coping with their child's chronic condition and allow them to maintain meaningful ties with others in the community" (Canam, 1993, p. 51). Families often develop new support networks with other 13 families of children with a chronic condition (Burkhart, 1993; Dunst et al., 1988; Lynam, 1987), and/or health professionals (Canam, 1985). Parents also utilize existing support networks such as extended family and friends or resources available through community associations. Summary There are a number of common issues facing parents of children with chronic conditions that cross disease categories. As described above, these tasks have been identified by a number of researchers through the study of a variety of populations of chronically ill or disabled children and their families. The Canam ATF provides an organizing framework that can be utilized to assess and intervene with parents of children with a chronic illness. An underlying assumption of this framework is that parents need specific knowledge, skills, and resources to accomplish each task. The role of the nurse is to assess whether or not parents are accomplishing each task and, if not, to assist them to acquire the necessary knowledge, skills, or resources they need to enable them to achieve the task. Effects of Childhood Asthma on Parents Very few researchers have studied the impact of the pre-school age child with asthma on parents. A review of these studies follows. Eiser et al. (1991) studied the differences between parents of children with asthma and healthy controls in terms of the impact of the child's asthma on parental discipline and control. Thirty-seven families who had children with asthma aged between three and five years, participated in the study. These families were matched, in terms of age and gender, with a healthy child who had no known history of chronic illness. Mothers and fathers were interviewed separately and answered several questionnaires to measure styles of discipline and control, 14 parental perceptions of their child, situations that were difficult to manage, and parental involvement in the daily care of their child. Several significant differences were reported between parents of children with asthma and parents of healthy children. Parents of children with asthma differed in their perceptions of their children from parents of healthy children (p<.002). Children with asthma were perceived by both mothers and fathers to be generally less healthy and more susceptible to colds and other infections compared with healthy children. Parents of children with asthma also reported that everyday situations were generally more stressful than parents of healthy children. Mothers reported that children with asthma were more difficult when they were shopping (p<.05) whereas fathers reported more difficulty at bedtime (p<.01) and at night (p<.01). Additional situations that are more stressful with children with asthma may have been obtained if open-ended questioning had been utilized rather than a pre-designed 16-point scale. These findings correlate with the adaptive task of managing the child's condition on a day-to-day basis (Canam, 1993). Although it has often been assumed that chronic conditions, including asthma, are associated with overprotectiveness, restriction of activities, and inconsistent disciplinary practices, there were no differences in this study between parents of children with asthma and healthy controls in the frequencies with which they reported using different discipline strategies or in their perceptions of the effectiveness of different discipline strategies. A limitation of this study is that parental reports of their discipline practices may not reflect actual behaviour. There was also no difference between the two groups in the extent of involvement with their children, including helping the child dress in the morning and undress at night, and reading to and playing with their children. The parents in Eiser and colleague's study seemed to be mastering the adaptive task of meeting the child's normal developmental needs as set out by the Canam ATF. 15 A limitation of the Eiser et al. study is the use of questionnaires. Although these instruments were specifically developed for the population that was studied and had a degree of face validity and acceptability to the parents, it is difficult to quantify the complexities of family interactions and relationships through the use of such tools. Another limitation is that the children in this study were all relatively mildly affected by asthma. It is possible that parents who have children who are more severely affected by asthma may experience more extreme changes in their parenting styles or in the way that they perceive their children. In a qualitative study using an ethnographic approach, MacDonald (1996) asked mothers to describe their experiences of living with a child with asthma. She interviewed 8 mothers of children with asthma, aged 3 to 10 years, for a total of 13 interviews. The number of interviews was determined by the availability of new data or the apparent saturation of the data. The overall theme that emerged from the data was that of 'mastering uncertainty'. Uncertainty is experienced as an exquisitely heightened sense of vulnerability, accompanied by a compelling need to know the unknowable future (Cohen & Martinson, 1988). Uncertainty has been defined as a cognitive state that occurs in situations in which the decision maker is unable to assign definite values to events or objects or is unable to predict outcomes accurately (Mishel, 1983 as cited in MacDonald, 1996, p. 56). The mothers in MacDonald's study described their ability to cope with uncertainty as having mastered uncertainty. Mothers reported a 'passage of time' from the first recognition that their child was not well until a time when they felt confident in their ability to recognize symptoms. During this time, a diagnosis of asthma helped relieve some of the uncertainty with which they had been living and allowed them to develop an action plan to cope with this problem — acquiring knowledge of asthma and taking measures to improve their child's health. The acquisition of knowledge was reported by mothers to be a necessary step before they could 'take charge' and become active participants in their child's asthma management. The Canam ATF identifies this as a necessary component of meeting the adaptive task of managing the child's condition on a day-to-basis. Mothers in this study (MacDonald, 1996) also reported themes related to their 'internal self. The mothers were initially unable to trust their ability to read cues of impending danger. This period was followed by feelings of self-doubt, fear, frustration, fatigue, and loss of self. A great amount of fear was expressed by these mothers related to the uncertainty and responsibility of caring for an ill child. The mothers also reported how monotonous and confining the day-to-day treatments were and how fatigued they were when dealing with acute exacerbations of their child's asthma. This is one aspect of the adaptive task of managing the child's condition on a daily basis (Canam, 1993). With the passage of time in caring for their child, mothers changed from feeling vulnerable due to uncertainty of the illness, to feeling confident in their ability to read their child's cues related to asthma and make appropriate asthma management decisions. This confidence can be interpreted as having the ability to cope with ongoing stress and periodic crises as outlined in the Canam ATF. A strength of MacDonald's study is that it examined the experience of mothering a child with asthma from the perspective of the mother. An adequate sample size was used to achieve saturation of the data. Donnelly (1994) examined the relationships among family hardiness, family stressors, and family functioning in families of children with asthma using a nonexperimental, descriptive correlational design. Twenty-seven parents (18 mothers and 9 fathers) of children with asthma aged 1 to 5 years participated in the study. Family hardiness was measured by the Family Hardiness Index (McCubbin, McCubbin, & Thompson, 1987 as cited in Donnelly, 1994) which 17 defines family hardiness as the internal strength and durability of the family including the following characteristics: (a) able to work together to solve problems and difficulties, (b) viewing change as beneficial and growth producing, (c) taking an active role in managing stressful situations, and (d) having a sense of control over the outcomes of life events and hardships. Family stress was measured by the Family Stress Index (McCubbin & Thompson, 1987, as cited in Donnelly, 1994). This questionnaire asked subjects to identify whether 10 life events that may place the family at risk had occurred in the past 12 months. Family functioning was measured using the Family Adaptability & Cohesion Evaluation Scales (Olson et al., 1983 as cited in Donnelly, 1994) and included the dimensions of cohesion and adaptability. Descriptive statistics were determined for the variables of family hardiness, family stress, and family functioning. Findings based on Pearson correlation coefficients indicated a significant positive relationship between family hardiness and family functioning (p = .05; r(25) = .564), however, the correlation coefficient between family hardiness and family stressors was not found to be significant (p = .05; r(25) = .068). When compared to previous research reporting family hardiness in nonclinical families, families with children with asthma scored similarly, suggesting that the added variable of a child's asthma did not significantly alter the family hardiness in this study. Parents in this study also scored low on the stressor index and appeared to have a low level of family stress. They appeared to be fulfilling the adaptive task of coping with ongoing stress and periodic crises as described in the Canam ATF. The self-report tool used in this study, however, represents parents' perceptions of what constitutes a stressful event. Qualitative research is needed to determine parental perceptions about the nature of chronicity, the meaning given to various family life experiences, and how stress is defined and managed. This study examined the experience of parenting a child with asthma from the perspective of the parents. 18 Effects of Childhood Chronic Illness on Parents Due to the lack of research studies on the impact of the pre-school aged child with asthma on parents, the literature has been reviewed for the relationship between having a pre-school aged child with a chronic illness and parenting. It is believed that there are common experiences for parents of children with a variety of chronic conditions. This 'noncategorical' approach has been debated in the literature (Stein & Jessop, 1989). Proponents of the noncategorical approach argue that the specific chronic illness alone does not account for the variables of greatest interest to families, and that the there are "commonalities in the experience of having a chronic condition, over and above the characteristics specific to particular conditions" (Perrin et al., 1993, p. 788.) A review of relevant research studies is presented below. One of the adaptive tasks of parents of a child with a chronic illness is to meet the child's normal developmental needs (Canam, 1993) and to raise him or her as they would a child who does not have a chronic condition. Knafl and Deatrick (1986) have labelled this management style 'normalization'. Deatrick et al. (1988) studied the management behaviour adopted by parents with children between the ages of 4 and 21 years diagnosed with osteogenesis imperfecta, using their previously developed conceptualization of normalization as an organizing framework (Knafl & Deatrick, 1986). Twelve mothers and six fathers participated in this qualitative study, representing 13 families. Semi-structured interviews were conducted and the data transcribed. Analysis revealed that 12 families were classified as normalizers, while only one family was not. Families who were striving for normalization revealed a sense of struggle in the degree to which they could selectively attune to what was 'normal' while ignoring what was 'abnormal'. Families developed behavioural strategies in order to achieve normalization in the following areas: the child's activities of daily living, disciplining and monitoring the child, and engaging in 'normal' 19 family activities. Since the purpose of this secondary analysis was to examine expressions of parenting the pre-school aged child, it was anticipated that the theme of normalization would become evident in the data. This theme is addressed as part of the Canam ATF and in the discussion of the findings. Anderson (1981) also found that 'normalization' was strongly evident among parents who presented themselves as coping well with their child's chronic illness. This researcher collected ethnographic data from four families whose children ranged in age from 3 to 12 years to examine how parents constructed the illness of a child with chronic sickness. Although parents emphasized the normality of their child who had a chronic sickness, their behaviours indicated that the family was organized around the sick child and many limits were placed on that child. Findings revealed that "although parents might present their child as 'just an ordinary child,' and endeavour to normalize their child's everyday experiences, social reality for the sick child must of necessity be different from that of the 'well' child" (Anderson, 1981, p. 432). Parental perceptions (N=29) of the stressfulness of coping with their chronically ill child's home care was studied by Ray and Ritchie (1993). A semi-structured interview was used to identify the range of personal and situational factors that influenced parents' coping with stressful situations. These data were used to validate and interpret the quantitative data obtained by two standardized instruments that have been previously tested for reliability and validity: one to assess situational factors (level of burden and duration of care) and one to assess personal factors (perceived stressfulness and coping). The parents in this study were the primary caregivers for children 3 months to 16 years of age, representing a broad range of diagnostic groups. The parents described continual adherence to the child's care regime, the struggle to balance family and care demands, and exacerbations in the child's illness as stressful. This is reflected in the adaptive task of managing the child's condition on a daily basis (Canam, 1993). The findings in this study indicated that strategies focusing on strengthening family life and relationships were extremely important. Maintaining an optimistic outlook was also an important coping strategy aimed at maintaining hope. Analysis of the quantitative data revealed that as caregiving burden increased, parents assessed their situation as more stressful and used few helpful coping strategies. Burden included the demands involved in the child's illness care, including: adhering to the necessary routine of care, problems related to the mechanics of care, the way in which the care precluded or limited family activities, and the physical and psychosocial aspects of care that were specific to the illness. These findings also supported the adaptive tasks of coping with ongoing stress and periodic crises and validated the importance of establishing a support system (Canam, 1993). The impact of a childhood chronic illness on the family is significant and is an important area of further study. A grounded theory approach was used by Clements et al. (1990) to determine parents' perceptions of difficult periods in the daily care of their chronically ill child. A convenience sample of 30 families with children between 1 and 18 years of age who had diabetes, cancer, or cystic fibrosis was selected. Analysis of the interview data resulted in a model which describes patterns of equilibrium and disequilibrium. Findings indicated that when emotional and physical support is available to meet the needs of all members of the family, equilibrium is achieved. Each family establishes its own unique pattern of interactions that provides a state of equilibrium. This may be a parent shared pattern, a mother centered pattern, or a single parent pattern. A state of disequilibrium exists when there is a dramatic increase in individual needs or when sources of support change. Critical times such as the initial diagnosis of the chronic illness, an exacerbation of symptoms, hospitalization of the child, parental absence due to illness, or developmental 21 changes such as beginning school, created an increase in individual needs or changes in the support structure of the family and resulted in disequilibrium. This model of critical times is useful for anticipating disequilibrium and helping to prevent or minimize some of the critical times for parents. Copeland and Clements (1993) furthered the above study by comparing mothers' and fathers' perceptions of their child's chronic condition and comparing strategies used by mothers and fathers to support themselves during critical times. A questionnaire was developed from data collected in the pilot study (Clements et al., 1990) and sent to 325 potential participants. Of these, 94 (29%) questionnaires were returned. Thirty-eight fathers and mothers (19 paired parents) participated in the research study. Grounded theory and constant comparative analysis were used to guide content analysis of the questionnaire responses. All of the parents had a child with a chronic condition, ranging in age from 3 to 15 years. Results of this study indicated that a majority of paired parents perceived their child's chronic condition in a similar manner but that mothers and fathers reported using different support strategies during critical times. Fathers reported using reasoning strategies more than mothers, whereas mothers used releasing strategies (e.g. art work, sewing) and relating strategies (e.g. talking with friends, attending support groups) more than fathers. The sample population in this study was potentially biased as it included only those individuals who returned the questionnaire, a concern which is exacerbated by the poor response rate. There is also no guarantee that mothers and fathers filled out the questionnaires separately. The method of data collection through a questionnaire and the method of data analysis using constant comparative analysis appear inconsistent with each other. It is difficult to imagine how a pre-conceived questionnaire could capture the richness of data that is required for grounded theory. The open-endedness required of the respondents to this questionnaire may have 22 been a contributing factor to the poor response rate in this study. Despite these limitations, however, the coping style data that were generated are interesting and warrant further research. A number of studies have focused on mothers of children with chronic conditions. Gibson (1995) conducted a fieldwork study, using a hybrid model of concept development, to refine the concept of empowerment in relation to mothers of children with chronic illnesses. Twelve mothers of children with neurological conditions between the ages of 11 months and 16 years, were interviewed several times. These mothers were considered by professional staff to have a sense of control or degree of mastery over their situation. The interview data were analyzed and a conceptual model of the process of empowerment in mothers of chronically ill children was developed. A predominant theme for these mothers was frustration — frustration within the family, with the health care system, as well as within themselves. Frustration became a powerful force in helping the mothers to 'discover reality' and evoked ongoing cycles of 'critical reflection'. Mothers were subsequently able to 'take charge' of their situation and then to 'hold on' to their sense of power, even when circumstances were changing. The outcome of this process was 'participatory competence' in which the mothers were full participants in their child's care and were able to work towards mutually agreed upon goals for their child with health care professionals. Intrapersonal factors that influenced the process of empowerment were the mothers' values, beliefs, determination, and experience. An important interpersonal factor was social support that mothers received from their spouse, family, friends, health care professionals, and other mothers in similar situations which supports the need to meet the adaptive task of establishing a support system as presented by the Canam ATF. These findings may also provide some insights into how support roles are established and why they are important. 23 A qualitative descriptive study by Burkhart (1993) investigated the health perceptions of mothers of children with chronic conditions using an analysis-synthesis approach as described by Miles and Huberman (1994). A purposive sample of 3 mothers participated in the study and were interviewed on two occasions. Semi-structured and open-ended interview techniques were used to uncover the mothers' perceptions of: (a) having a child with a chronic condition, (b) personal health, and (c) the child's health. A number of themes emerged from the data analysis of mothers perceptions of their experience of having a child with a chronic illness: acceptance, relationships, coping, uncertainty, time perspective, heightened awareness, hope, and normalization. Mothers' perceptions of their own health focused on the importance of 'get-away time' and being healthy for the sake of the family. Mothers described their child's health in terms of control related to the child's day-to-day activities and developmental issues. This study is limited by the small sample size and the fact that all the participants appeared to have a positive perception of the chronic condition of their child and be coping relatively well. It is not known if saturation was reached in the categories that were generated by the data analysis. Summary Several relevant research studies have been reviewed which enhance the understanding of the implications for parents of having a child with asthma and a chronic illness. Many of the research findings lend additional support for the Canam ATF which describes the adaptive tasks that parents must accomplish in order to care for their child who has a chronic illness or condition. Although many of the research studies have small sample sizes, the cumulation and overlap of findings lends support to the notion that childhood chronic illness requires an alteration in parenting as parents carry out the day-to-day care for their child. 24 All of the research studies described include the pre-school aged child, however, most of the studies included a wide range of ages from pre-school to adolescence. Since pre-school children are unable to fully articulate their perceptions of their illness, it is appropriate and significant to study the experience of these parents in managing their child's illness on a day-to-day basis. This secondary analysis focused on the experience of parenting a pre-school aged child with asthma. The majority of the studies that were reviewed as relevant to this study were qualitative rather than quantitative. The quantitative studies were limited to the specific instruments used for data collection whereas the qualitative studies were able to examine the richness and depth of parental experiences in managing a child with asthma or another chronic illness. Latent content analysis was selected as the method for data analysis in this secondary analysis in order to explore the experience of parents in managing a pre-school aged child with asthma. Very little research has focused on the unique challenges that a pre-school aged child with asthma presents to the parents. This study examined the experience of parenting a pre-school aged child with asthma and therefore adds to the understanding of this aspect of family life in the presence of a common pediatric chronic illness. The methods for this study are detailed in Chapter 3. 25 CHAPTER 3: METHODS This research used the methods of latent content analysis to analyze part of an existing set of data: transcribed interviews with parents who have a pre-school aged child with asthma. This chapter presents the methods used to analyze these data. The original study that generated the data set is discussed to provide the context for this study, then the methods used for this secondary analysis are presented including: the design, procedures, ethical considerations, data analysis, and selected issues of validity and reliability. Research Design Data for this research were originally collected for a larger study entitled, Evaluation of the Family Asthma Education Program (FAEP) (Hayes, Mitchell, Ablog, & Hopkins, 1983) under the auspices of the British Columbia Lung Association. The FAEP, designed by the British Columbia Nurses' Respiratory Society, offered separate four-session education programs to families of pre-school and school-age children with asthma. These courses were offered twice a year in the spring and the fall. Although subjective evaluations from the parents who participated in this program indicated many positive outcomes to having taken the course, no systematic evaluation of the FAEP had taken place. The purposes of the study were to investigate how the FAEP affected the coping strategies of parents with children with asthma and to explore parents' own perceptions of living with childhood asthma in the family. The original study consisted of two parts. The first used a quasi-experimental, pretest/post-test control group design to evaluate the FAEP in terms of variables related to parents' coping with childhood asthma. A group of parents who had taken the FAEP were compared with a matched group of parents who did not take the program. The second part of the original study used descriptive phenomenology to explore the parents' own perceptions of living 26 with a child with asthma in the family. Parents from 56 families were interviewed in their homes and asked a question like, "What is it like for you to live with a child who has asthma?" This secondary analysis used a portion of the data set generated from this qualitative research to elaborate on the experience of parenting a child with asthma using the Canam Adaptive Task Framework (1993) as a guiding framework. My access to these data was formalized through a supplementary ethical review and approval as described in a later section. This study used a qualitative exploratory design to conduct a secondary analysis of a portion of the qualitative data from the Evaluation of the FAEP study. The purpose was to identify descriptors of adaptive tasks of parents who have a child with asthma as set out in the Canam ATF. Although the original data were collected from a phenomenological perspective, secondary analysis was appropriate for this study since the original research question was similar to the question for this study; that is, both questions were concerned with the experience of parenting a child with asthma. This was important to ensure that the data set would uniformly represent the topic of secondary inquiry (Thorne, 1994). The benefit of this study is that the impact of the original data is increased by having additional analysis. The methods of content analysis used in this study are explained in a later section. Sample and Sampling The sample for the original study was one of convenience and consisted of four sub-groups. Selection of participants started with parents who attended the FAEP in September 1983. The families who participated in the FAEP program (N=28) responded to advertisements in the newspaper placed by the B.C. Lung Association or were referred to the program by their physician. The FAEP participants were divided into two treatment sub-groups: families of pre-school aged children (N=12) and families of school-aged children (N=16). Once the families 27 were accepted into the FAEP program by the Program Nurse Coordinator, they were matched as closely as possible with non-treatment participants on the basis of the ill child's age and length of time since diagnosis of asthma as well as the number and gender of parents participating in the study. Matched families were sought from patient lists of physicians who agreed to participate and lists of known children with asthma from the B.C. Lung Association (see Appendix A for letter to physicians). Potential families were first approached by the physician or delegate (receptionist or nurse) who briefly explained the study and asked for permission to send or give them a letter explaining more about the study (see Appendix B). The parents could call the research assistant or, with permission, receive a call from the research assistant. If verbal consent was given, an appointment was made for a visit at a time convenient for the parents. At the first visit, written consent to participate in the study was obtained (see Appendix C). Thus, an additional 28 families participated as matched controls (12 families with a pre-school aged child with asthma, and 16 families with a school-aged child with asthma). A total of 56 families participated in the FAEP study — 24 families (12 from the FAEP and 12 controls) with pre-school aged children and 32 families (16 from the FAEP and 16 controls) with school-aged children. Selection Criteria Treatment participants were selected using the following criteria: 1. Parent of a pre-school or school-age child with asthma. 2. Able to attend the FAEP on the dates and times offered. 3. Resided in the greater Vancouver area and be able to arrange travel to the FAEP location. 4. Understood, spoke, and read English. 28 Non-treatment (control) participants were selected using the following criteria: 1. Parents of a pre-school or school-age child with asthma, matched to treatment participants for age of child, length of time since diagnosis, and number of parents in the family participating in the study. 2. Chose not to attend, or had never attended the FAEP. 3. Resided in the greater Vancouver area. 4. Understood, spoke, and read English. Study Participants The data set that was used for this secondary analysis was selected from the 24 families with pre-school aged children based on the following criteria: 1. Child with asthma between the ages of 3 years and 5 years, 8 months at the first interview (i.e. before entry to school). 2. No siblings with asthma from a different age group. 3. Complete data set available (i.e. 3 interview transcripts). Using these criteria, 10 families (10 mothers and 8 fathers), out of a possible 24 families, were available for data analysis in this study. Two of the families had incomplete data sets (i.e. one or more interview transcripts were missing), ten families had children with asthma who were less than 3 years of age, and two families also had school-aged children with asthma. Since I was interested in the experience of families with pre-school aged children, I did not want to confound my findings and analysis with the complexities of parenting children with asthma in more than one age group. Since the developmental tasks of each age group are unique (Wong, 1995), the parenting tasks may also be unique for these age groups. 29 Data Collection and Setting Participants in the original study (Hayes, 1991; Hayes et al., 1983) were interviewed three times by an experienced pediatric nurse research assistant. These interviews took place in the families' homes in a relaxed atmosphere. Parents were asked to describe what it was like to live day-to-day with a child with asthma. An unstructured approach was used, consistent with phenomenology. Phenomenology is an inductive, descriptive research method which investigates and describes phenomena, including the human experience, in their fullest depth and breadth (Cohen & Ornery, 1994). The researcher attempts to understand the experience from the perspective of the participants. Descriptive phenomenology investigates, analyzes, and describes the phenomena under study, while remaining as free as possible from preconceived expectations and presuppositions (Cohen & Ornery, 1994). Interviews or conversations were audio taped and transcribed verbatim, including field notes from the interviewer. The selected interviews and field notes for this study were analyzed using content analysis. Data Analysis "Data analysis is the process of bringing order, structure, and meaning to the mass of collected data" (Marshall & Rossman, 1995, p. 111). Content analysis is "essentially a coding operation" that may be applied to virtually any form of communication (Babbie, 1992, p. 317). It is "a technique that allows examination of data to determine whether or not the data supports an hypothesis" (Marshall & Rossman, 1989, p. 98). The selected interviews for this study were analyzed using content analysis methods to identify expressions of parenting the pre-school aged child with asthma. The parental expressions were categorized according to the Canam ATF. The option for further expansion to additional categories was considered throughout the data analysis. 30 The evolution of content analysis has "produced a flexible tool that is sufficiently fluid to allow analysts to arrange components to best suit the needs of their studies" (Marshall & Rossman, 1989, p. 98). Two types of content analysis that are described in the literature are manifest and latent. In manifest content analysis, replicable and valid inferences are made by applying empirical and statistical methods to code the visible or surface content (Catanzaro, 1988). The meaning within each passage of text is considered in latent content analysis. This is the most common type used in qualitative analysis (Field & Morse, 1985). During data analysis, passages or paragraphs are reviewed within the context of the entire interview so that the major thrust or intent of the section is identified and coded. Since the data set for this study was qualitative, I used the methods of latent content analysis to analyze the data. Coding The first step in content analysis is to read all the data to establish a 'feel' and a 'general sense' of what is being said (Brink & Wood, 1989). All of the selected interview transcripts and field notes were read through for this purpose. A second reading of the transcripts was done to separate the data that applied to parenting the child with asthma from extraneous data that did not pertain to parenting. All the data was accounted for in some category. A third reading of the data was done to code the data based on the Canam ATF. By reading the interview transcripts three times, I was able to ensure that my coding was consistent throughout the data analysis (Babbie, 1992) and was able to become familiar with the data in intimate ways (Marshall & Rossman, 1995). The codes used for this study are deductively generated from the literature and are presented as the eight adaptive tasks that parents must meet when they have a child with a chronic illness (Canam, 1993). The data were read and coded using the ATF. The unit of analysis 31 were the "smallest unit that contains some understanding the investigator needs" (Catanzaro, 1988, p. 442). These units were of varying size—words, phrases, sentences, or whole paragraphs (Miles & Huberman, 1994). Any data that did not fit into the eight adaptive tasks in the ATF was coded as "other". This included: social "chit chat"; introduction to, and information about the study, including obtaining consent; and comments directly related to the evaluation of the FAEP. If necessary, these data were to be categorized into two or more subcategories (Morse & Field, 1995), however, no additional categories were generated. Some data fit into more than one category and data were moved between categories as I became more familiar with the data and the underlying meanings of the text. Coding of the data was done manually. Coloured stickers were used to assist in coding the data as well as pencil markings in the margins of the transcripts. Quotes that articulated a category particularly well were highlighted to further facilitate data analysis. Validity and Reliability Validity Internal validity refers to "the degree to which an instrument measures what it is supposed to be measuring" (Polit & Hungler, 1991, p. 374-5). Validity in qualitative research is difficult to evaluate. Guba and Lincoln (as cited in Sandelowski, 1986) suggest that credibility is an important criterion of validity in qualitative research. A study is credible when "it presents such faithful descriptions or interpretations of a human experience that the people having that experience would immediately recognize it from those descriptions or interpretations as their own" (Sandelowski, 1986, p. 30). Latent content analysis is considered to have a high degree of validity because it recognizes the richness of the data and recognizes the context of the research. 32 This permits the overt intent of the information to be coded as well as the underlying meanings in communication (Field & Morse, 1985). External validity refers to the generalizability of findings to other settings, and arises from having a representative sample (Polit & Hungler, 1991). Despite the fact that qualitative research does not seek generalizability and representativeness in sampling, it has fewer threats to external validity because it "emphasizes the study of phenomena in their natural settings and with few controlling conditions" (Sandelowski, 1986, p. 31). Due to the large volume of verbal data that must be analyzed, sample sizes are typically small and contacts with participants more intense and prolonged. The chosen sample size (N=10) for this study was sufficient to explore the experience of parents when they have a pre-school aged child with asthma. Participants who were qualified to speak on the phenomenon of interest (i.e. parenting a child with asthma) were solicited for this study. The researcher's ability to address the following points is important in conducting a valid content analysis (Wilson, 1985): 1. Develop a rationale for and define the categories. "Rules [that] embody the criteria for processing the content...must be as specific and complete as possible" (Catanzaro, 1988, p. 438). 2. Demonstrate how the categories are appropriate to the data and how the data can be coded into the categories. 3. Demonstrate the relevance of the categories to the research question. The Canam ATF provided the categories for the data. As described in Chapter 2, the ATF provided a useful framework for this study. Parents' expressions of parenting a child with asthma 33 were coded into the eight adaptive tasks. Other expressions of parenting did not emerge from the data. Secondary analysis may be problematic for validity in that the researcher is limited to the data that already exists (Babbie, 1992). In other words, the existing data may not cover exactly the phenomenon of interest. The characteristic of logical reasoning, as outlined by Babbie, can be used to handle the problem of validity in the analysis of existing data, that is, having a carefully reasoned theoretical basis for the questions that are asked of the data. The literature review and conceptual framework (Canam ATF) that have been presented lend support to the validity of this secondary analysis. Reliability Reliability is the degree of consistency with which an instrument measures the attribute it is supposed to be measuring (Polit & Hungler, 1991). In the case of content analysis, reliability is concerned with consistent applications of categories to the data. Latent content analysis may be "less reliable due to the possible subjective nature of the coding system" (Field & Morse, 1985, p. 103). Problems with category reliability occur when the coder is unable to clearly formulate categories in the data (Holsti, 1969). Inter-rater reliability occurs when two or more coders code data in a consistently similar way. As a reliability check, content experts (including the author of the Canam ATF) in caring for parents of a chronically ill child and myself independently coded portions of unmarked transcripts. Our results were compared and discussed to establish consensus on the coding of the data. Reliability in secondary analysis depends on the quality of the existing data (Babbie, 1992). By investigating the nature of data collection in the original study, the researcher can minimize any problems related to reliability of the data. The methods of data collection in the 34 FAEP study have been described and are believed to be appropriate for the question asked in this secondary analysis. Ethics Ethics approval was granted by the University of British Columbia Screening Committee for Research and Other Studies Involving Human Subjects in 1983 (Number B83-072) and the Research Advisory Committee at British Columbia's Children's Hospital for the original Evaluation of the FAEP study. An amendment was sought and granted from the same University of British Columbia Screening Committee (Number B97-0223) to add me as a new co-investigator who was extending the analysis of the qualitative data from the FAEP study. An introductory letter explaining the study had been given to each potential participant (see Appendix B). This letter informed the participants that (a) their confidentiality would be maintained at all times, (b) they could refuse to answer any questions at any time, (c) declining to participate would not affect their family's health care in any way, and (d) other parents who have cooperated in similar research have found it helpful to be involved in such research and that they have enjoyed their participation. Parents who wished to participate in the study signed a consent form (see Appendix C), which acknowledged their right to withdraw from the study at any time. To protect the confidentiality of the participants, unique study numbers were used to code the data for each participant and all personal identifying information was removed from the data, hence I have no knowledge of the identity of the families who participated in this secondary analysis. Access to the data is restricted to the researchers and the data is securely locked in filing cabinets. No information which could identify the individuals is discussed in the report of findings for this study. Upon completion of this study, all data, including working copies, were returned to the principal investigator of the Evaluation of the FAEP study. 35 Summary This study used latent content analysis techniques to conduct a secondary analysis to identify expressions of parenting the pre-school aged child with asthma. The data for this study were originally collected as part of a larger study aimed to evaluate an asthma education program. The existing transcribed interview data were analyzed for expressions of parenting the child with asthma. The Canam ATF was used to provide the conceptual framework for coding the data in this study. Coding involved sorting expressions of parenting according to the adaptive tasks identified by this framework. No additional categories emerged from the data. Reliability was tested by having content experts independently code selected transcripts and data. Other issues of reliability and validity have been presented. The findings of this secondary analysis are presented in Chapter 4, including a detailed description of the sample that was selected for this study. 36 CHAPTER 4: PRESENTATION OF THE FINDINGS In this chapter, the relevant findings obtained from the interviews of 10 sets of parents of pre-school aged children with asthma are summarized. A description of the sample is presented which includes information about the parents and their pre-school aged children with asthma. Descriptive statistics are used to summarize these data. The parents' verbatim responses were categorized using the methods outlined in Chapter 3 and are described according to the eight adaptive tasks specified by the Canam Adaptive Task Framework (ATF). All of the families selected for this secondary analysis addressed each of the adaptive tasks in the ATF, except in one family, where one of the tasks was omitted. While the possibility of additional categories was considered during data analysis, no other categories were identified. Description of the Sample Demographic data for the participating families had been obtained at the beginning of each first interview. A description of the study sample is presented below. The Parents Demographic data describing the parents who participated in this secondary analysis are summarized in Table 1. Although 10 families of pre-school aged children were selected to participate in this secondary analysis, two of the fathers were unable to be interviewed. Parents are divided into mother and father to describe their ages, educational backgrounds, and occupations. Parents ranged in age from 25 to 40 years of age with a mean of 32 years for the mothers and 31.4 years for the fathers. One couple did not complete high school while four mothers and five fathers were graduates of college or university. The remaining parents completed Grade 12. With regard to occupation, both parents were employed full-time in six 37 Table 1 Characteristics of Parents of Pre-School Aged Children with Asthma Number Assigned to the Family Ages Mother Father Education" Occupationb Mother Father Mother Father 1* 2* 2* 4 5 6 7 8* g* 10 40 35 33 34 32 N/A 25 26 30 33 35 31 35 32 N/A 25 29 33 3 3 2 4 1 1 2 4 4 2 3 4 1 1 2 4 5 5 3 2 3 3 3 2/5 5 4 5 5 2/1 3 3 5 Mean 32 31.4 "Education 1 Did not complete Grade 12 2 Grade 12 Graduate 3 College Graduate 4 University Graduate bOccupation 1 Unemployed 2 Homemaker 3 Technical (electrician, factory worker) 4 Business (manager) 5 Professional (nurse, teacher, professor) Not interviewed N/A Not available * Attended Family Asthma Education Program 38 families. Four of the mothers were homemakers; one of the fathers was unemployed but was also a homemaker. One mother was presently a homemaker at the time of data collection but had left her job as a teacher to care for her child. The remainder of the parents were involved in professional, technical, and business occupations. Five of the families participated in the Family Asthma Education Program. The Pre-School Aged Children with Asthma Demographic data describing the 10 families' pre-school aged children with asthma are summarized in Table 2. The children's ages ranged from 3.2 to 4.9 years with a mean of 4.3 years. There were more girls than boys (1.5:1). The age at diagnosis of asthma ranged from 3 months to 4 years, 4 months with a mean of 2.1 years. The length of time since diagnosis of asthma ranged from 9 months to 4 lA years with a mean of 2.1 years. The range of family size was 1 to 2 children per family with an average size of 1.7 children per family. In all ten families, the child with asthma was the first-born. Canam Adaptive Task Framework The Canam ATF provided the conceptual framework for data analysis in this study. The findings relevant to each of the eight adaptive tasks are presented in the following sections. It will be noted throughout the presentation of the findings that although it was easy to fit the data into the ATF, some of the data could be applied to more than one category. For the purposes of this paper, however, the data have been placed in only one category for presentation. Many of these findings are illustrated using the parents' own words. Accept the Child's Condition One of the initial tasks of parents who have a child with a chronic illness is to accept the child's condition.This is dependent on an accurate diagnosis which was a source of frustration 39 Table 2 Characteristics of Pre-School Aged Children with Asthma Number Age Sex Age at Length of Position in Number Assigned (in years) Diagnosis Time Family of to the (in years) Since Children Family Diagnosis in Family (in years) 1 4.8 F 0.3 4.5 1 2 2 4.7 F 1.5 3.2 1 1 3 3.2 M 0.8 2.4 1 2 4 5.1 M 4.3 0.8 1 2 5 3.8 M 1.5 2.3 1 2 6 3.2 F 1.4 1.8 1 2 7 4.7 F 3.8 0.9 1 1 8 4.0 M 2.5 1.5 1 1 9 4.9 F 2.3 2.7 1 2 10 4.6 F 2.3 2.8 1 2 N=10 Mean Ratio Mean Mean Mean 4.3 1.5:1 2.1 2.1 1.7 for the parents in this study. Parents found it easier to accept their child's asthma when they were able to make comparisons to other children with asthma. Acceptance became apparent when the parents had integrated their child's asthma into the family's 'normal' routine. Diagnosis. Seven of the families specifically talked about the difficulties and frustrations that they encountered with the health care system to obtain a diagnosis of asthma. Most of these 40 parents knew that something was wrong with their child but could not obtain medical confirmation. As one father stated: I think the most frustrating part is that you go, well we went almost two years without really knowing what was wrong with her, and I mean it, it really changes your lifestyle when I'm, I'm very active sportswise and all this. It kind of bothered me to have this child that was always sickly. And I couldn't understand. . . . We're basically both very healthy. How can we have this sickly child that's throwing up all the time? And it was this total frustration of going to the doctor and saying well it's normal, they are going to get a lot of colds in the first nine months of their lives so don't worry about it. And this whole thing. But not actually ever, nothing actually being pinpointed. One mother, in fact, suggested to her physician that her child had asthma, based on her own family history, and the doctor confirmed the diagnosis. Another child was diagnosed with bronchitis, but her mother decided it was asthma. Once the child was actually diagnosed with asthma, parents still had difficulty accepting the diagnosis. This was expressed by nine of the familes. "When she was little I guess I didn't want her to have that, and I didn't want to accept it, and this was really hard." Even families who were anticipating the diagnosis of asthma based on family history, were still hopeful that their child would not develop asthma. One mother with asthma didn't want to believe that her child also had asthma. The diagnosis of asthma shattered the illusions that parents had about having a "perfect child". Well I was hoping that she would not [have asthma] but the doctor told me, Maybe it's asthma". So I said, "No it could be just a cold or bronchitis." Even myself, when it's only seven years ago I get asthma I didn't want, well nobody wants to get sick in the first place, I didn't want my child to have it, but now she has it and she'll grow out of it, but I guess most parents think, "Who wants to have a child who is sick?" For some other parents, having personal experience with asthma made the acceptance of their child's illness easier and less frightening. "We were prepared well before he ever had his first 41 attack, that it could well happen, it's just a matter of when, where, what the aggravating thing will be." The diagnosis of asthma shattered some parents' illusions or ideals about how to raise a child and forced them to come face to face with the vulnerability of their children. Along with this came the concern that their children could die from asthma. Some parents became angry and wondered "how did we end up with a kid like this?" after doing everything "right" during pregnancy. Others were more philosophical and resigned to the diagnosis. "I mean, you get what you get. I mean, what are you gonna do? You know. Are you gonna have genetic testing done before a child is born, to find out whether you're gonna have the absolutely perfect child?" Or as another mother said, "You just have to cope with it and that's it. What else can you do?" Part of the frustration and anger about the diagnosis of asthma was the inability to pinpoint the cause of the disease. "I accept and understand this asthma is something we can live with, but if we just knew what caused it, then it would make it so much easier." Most of the parents interviewed did not consider their child's asthma to be a chronic condition. They thought of chronic asthma as being more debilitating than asthma. Even those parents who did call their child's asthma chronic, did not believe that the asthma would go on forever. In fact, it was a common hope for all the parents that their children would hopefully outgrow their asthma. Whenever the child was experiencing a period of no symptoms or asthma episodes, the parents wondered if the asthma was actually gone. When the asthma re-appeared, it was very disappointing. Comparison with other children. Almost all of the parents interviewed compared their child with other children who had asthma or another chronic illness. A recurring theme was that "there is always someone who is worse". This was a source of comfort for parents and provided 42 them a way of coping. After spending time in the hospital with her child, one mother was thankful that her child only had asthma because another child in the room had cerebral palsy. Parents expressed a need to place their child's asthma on a scale from mild to severe. Only one family did not feel the need to compare their child with others. While comparing their child to other children with a chronic illness was comforting to parents, comparing their child to other more "healthy" children was not. One father felt that his child was missing out because other children were progressing more quickly physically. Another mother was shocked to realize that another child had not visited the doctor in 18 months. She had always considered her child with asthma to be healthy, but this made her realize how much "healthier" other children were. And it made me realize how much the doctor and the medicines and just the whole consciousness about whether he would get sick and how sick he would be and whether he'd need antibiotics and whether he would get asthma, and what medication, how much all those questions were a part of our daily life. And how it wasn't a part of other people's daily lives. Part of normal family routine. Once parents had accepted the diagnosis and obtained sufficient information to manage their child's asthma, it became a part of their normal family life. "There for a while we were worried most of the time. We didn't know what she could do, what she couldn't do. But now we don't even think about it. Don't think of it as being asthma." Most parents eventually came to a feeling of optimism about the future. "That's a very natural thing, but nevertheless a very real belief that things are going to be OK. And that's the way it should be." One set of parents, however, expressed fear in having another child in case he or she also developed asthma. Another couple were concerned that their baby would also develop asthma and took special care to continue breastfeeding and to slowly introduce solid food as precautionary measures. Some parents saw the child's asthma as a positive thing because they 43 were more conscious and appreciative of their child's health which they no longer took for granted. There were some positive benefits for family members as well because of a healthier diet and decreased smoking. The task of accepting the child's condition was well articulated by the parents in this secondary analysis, including a number of elements that were evidenced as part of this process. Obtaining a diagnosis of asthma was a frustrating experience for parents which evoked a wide range of emotions. Parents reported that it was helpful to compare their child with other children who they considered to be "worse off. Eventually, asthma became part of the family routine for these parents. Manage the Child's Condition on a Day-to-Day Basis The task of managing the child's condition on a day-to-day basis was the one that generated the most information of any of the adaptive tasks. All of the parents wanted to share their story about the impact of their child's asthma on their day-to-day lives. Lack of information. All of the families expressed frustration because of a lack of information, especially in the initial stages of asthma diagnosis and the length of time that it took to find the needed information. Many of the families had to seek out their own resources because the information was not forthcoming from their physicians. We are left with the impression that it falls to us to initiate something and the thing that made us do something about it was really and truly we just got, I guess a little frustrated with going through the same loops and there is a time when you really - you realize that you're shooting in the dark and you decide well, I've got to - we've got to do something. Over and over, the parents talked about the need for information. Well, we don't do anything because I don't really know what I'm doing. We have a chronic shortage of data. We could very well end up making the situation worse... . The first thing you've got to do is get some data. The second thing you've got to do is make some sort of assessment in the situation before you can even begin to think about what do 44 I do to improve my lot. And that's the space we're in right now, getting data. . . . You don't really need very detailed information - what you want to know, really, is the bottom line. It's like, what should I be looking for, what kind of things should I do, and above all, how do I react when something happens? And they're simple things you've got to do like start the medication and stuff like that and when you sort of say it it doesn't sound so much, but these little things are very important, I think. Parents also felt helpless because they did not know the right questions to ask. "Thing is, too, you don't know what questions to ask, because you're not informed about it, so you don't know what to ask about it. Can't ask a question when you don't know that that question is happening, I guess you'd say." Parents desperately wanted to be told what to do to manage their child's asthma. I wanted somebody to tell me. The lack of control and the erosion of my confidence, plus the unpredictability of when it would occur, how bad it would get, and how long it would last, had all compounded to the extent where I want desperately for someone to tell me what to do, someone to give me a list that I could follow so at least I could feel that I was doing the right thing. When parents were finally able to access resources and find out the information that they needed, there was a remarkable change in their feelings of control. They felt that they had some tools to manage their child's asthma and they no longer felt helpless. He [the doctor] said some very practical things - he said, "Look what we're going to do is we're going to try and avoid this attack just as quickly as we can and once we've done that we've got to look at a way of either preventing or making sure that when an attack starts we get rid of it fast." And in those few sentences he'd said something that we'd been saying to one another. No other doctor has ever said that to us. Parents felt more confident that they could cope with their children's asthma and were not as threatened because they believed that they could prevent or manage acute episodes. These parents were able to manage their child's asthma more independently and had less trips to the doctor and Emergency. Many parents talked about how "simple" asthma management was once you knew how. 45 Oh, it took a long time for us to isolate it, and to find out all....I guess each child is different, and so eventually, by the time you figure out all the things that can trigger things, or whatever, and then how they can apply only to your child, because they may not apply to the children that are asthmatic in the same way. Once you've isolated the case for your child it's easy to prevent it. It really is! Knowledge also gave the parents power. They felt more confident to discuss treatment options with their physicians and to challenge or question the current asthma management. For many parents, receiving information only confirmed what the parents had already figured out through their own experiences. Relationship with physicians and the health care system. Without exception, all families discussed their relationship with physicians and to a lesser extent other health care personnel. All of the parents described at least one unpleasant encounter with a physician. Often this was a one time experience with a physician other than their own family doctor, but family practitioners were also a source of frustration for many parents. In particular, parents found it frustrating when doctors did not listen to their concerns or discounted the experience and knowledge of the parents regarding their child's asthma. Parents believed that they knew as much as, or more than, the physicians about childhood asthma, based on their own experience. One couple found it particularly annoying when the physician gave them incorrect information about where to buy an aerochamber to administer their child's medication. Parents believed that the physicians' perspectives were too narrowly focused on the child's physical health rather than the quality of life for the child. Parents were also frustrated by the lack of consistency among physicians in regards to asthma management and treatment as expressed in the following quotes. "It makes you kind of wonder that, you know, are they on the right track or is anybody on the right track?" Another parent stated, "Yes, going to doctors and coming back from doctors with as many questions as 46 when you went in". Parents needed to have confidence in their doctor. "The doctor may know what he's doing, but if you don't feel that he knows what he's doing, you know, that makes a big difference." Parents often felt that their physicians were too busy to sit down and give them information. As a result, parents wanted to avoid seeing the doctor unnecessarily. Parents expressed the need to be "legitimate" in their visits with their physicians so that they did not waste the doctor's time. At the same time, parents desperately wanted and needed the physician to explain the treatment and management of asthma. "What we need to do is find somebody that has information that's willing to talk with us." As discussed previously, it was not until parents sought out information from other sources that they felt confident enough to ask direct questions of their physicians. When asked directly, most physicians were able and willing to answer the parents' questions. Many parents had positive relationships with their primary physicians and spoke about the importance of open communication between them. Physicians not only had to be competent but supportive. For most parents this included being available to the family for emergencies after office hours, listening to the parent's concerns, providing information and including parents in decision-making, and knowing the family in its own context. Many parents spoke about switching to another physician because of a personality conflict or a feeling of not being supported. Prevention. A major part of daily management is the prevention of asthma episodes or "attacks". This theme was discussed by every set of parents in this study. Parents were willing to do anything to avoid hospitalization and would go to any extent to prevent attacks. One mother quit her job as a teacher to stay at home with her child, largely to manage her child's asthma. 47 Despite the financial limitations that this placed on the family, the parents felt that it was worthwhile because their child's asthma was much better controlled. Some of the preventative measures taken by parents included: avoiding smokey areas or smoking outside, altering diet, keeping the environment (especially the child's bedroom) dust-free, damp mopping the floors daily, doing extra laundry, removing carpets, changing flooring to linoleum in child's room, buying special vacuums or air purifiers, and using electric heaters instead of central heating. Parents also anticipated events or seasons that might exacerbate their child's asthma and began preventative medications. Many of these management techniques were discovered through trial and error. In managing their child's asthma, it was important that parents were able to do something in order to gain a sense of control. "I've had that feeling that we'd like some control, you know, that's what makes you feel so helpless is the lack of control." Unpredictability. Throughout the interviews, parents talked about the need to always be on guard and on the alert for any signs of an impending asthma episode. Most of the children had a seasonal pattern, but this pattern was always changing, making asthma very unpredictable. There was a sense of fatalism from some parents as they talked about the inevitability of another "bad winter". Every time the weather changed, these parents would closely monitor their children so that they could begin intervening at the first sign of any symptoms. Planning social events or holidays was a challenge to families because of having a child with asthma. Nine of the sets of parents talked about having to cancel plans or come home from an evening out to manage their child's asthma. If you plan something then you cannot really do it because of that [asthma]; it's happened sometimes. Or if you plan even going for a trip. Sometimes we are afraid to go somewhere because we don't know how she is going to be. . . . Things like that, or sometimes we decide to go out then we cannot because she's too sick to a point where we 48 cannot leave her with a babysitter. But this - it's not that terribly bad, no. Things have to be cancelled. One family found is especially difficult to plan a trip to Europe to visit relatives because of the lack of resources there, such as equipment, medications, and soya milk for the child's allergies. Parents also talked about having to organize and plan their holidays around the seasons that affect the child's asthma the most. When planning a trip, parents were always wondering if the child would develop a cold which would lead into an asthma episode. Medication administration. Another area that was a source of frustration for every family in this study was the administration of medications to manage their child's asthma. All of the children were tried on a number of medications to determine which would be the most effective. Parents found this to be extremely frustrating and questioned whether or not the physicians knew what they were doing. So he told me not to use the medication they gave to her at that time, for me to go back on the one he prescribed to her, and I said, "What's going on, I just bought a big bottle like that for $15." And there I am I have to buy some more other medication, things are getting nonsense. He said this one doesn't help anyway and we go back to the one she had before.... So my conclusion is that even research and medical side of it, nobody really seems to know what causes it though, how to cure it. So all these medicines that they come up with, sure we could try it, we could try all - all the different brands that's available, eh. Nothing seems to make a difference, that's why we're saying, "Well, see if she takes nothing, and see what happens." And a lot of people I've talked to say you shouldn't do that, you know might I don't know, maybe it will affect the child, but I'm willing to try about anything. Parents often stopped the child's medications or changed the amount or frequency of administration based on their own experience rather than on medical advice. AH of the parents strongly disliked giving medications to their child and were concerned about long-term side effects. "But here we are having to give our children all this medicine, not because we want to but because it's clear that it has to be done." If the benefits of the medications were not apparent 4 9 or side effects became too much, the parents discontinued the medications to wait and see what happened. One mother, after reading the package insert of a medication, phoned the pharmacist and the poison control because she was concerned that the child had been prescribed a "lethal" dose. Parents lacked information about the action and side effects of the prescribed medications. Once the parents were given this information, they were more likely to administer the medications as prescribed. Once the children were established on the correct medications, parents recognized the importance of medications in giving them some control in their child's asthma management. With knowledge and experience, the parents were able to adjust the medication schedule to suit the child. They also felt more confident to discuss their concerns and options with their physician. It became part of the routine of parenting the child with asthma to take the medications with them whenever they went out. This gave the parents a feeling of freedom that they had not previously had. Parents also spoke about less visits to the hospital because they were able to manage their children's asthma at home with the help of medications. Parenting. Parenting the child with asthma is hard work. Parents talked about the added responsibility and burden of having a child with asthma. There is more parenting, not necessarily parenting, but you're more involved (Mother: I think more worrying) yeah, more worrying and stuff. Will he be sick or something, but you get used to that too and you don't really take that on as being any extra. One couple believed that dealing with asthma in their first child was more difficult because it coincided with learning about parenting. Every set of parents described differences between them in how they perceived and managed their child's asthma. In most cases it was the mother who took the major responsibility for managing the child's asthma. An exception to this was one father who took the primary 50 responsibility in managing the child's asthma since he was unemployed and stayed at home. In most other cases, however, mothers were the ones to get up in the night to respond to the child's physical and emotional needs. Many fathers, in fact, slept through the asthma episodes, and one father did not even know when his child had been taken to Emergency during the night. In most cases, the mothers wanted the fathers to take on more responsibility and to gain more knowledge about the child's asthma and management. One couple were especially vocal about this as evidenced by this dialogue, beginning with the mother. Sometimes when I'm feeling sort of at my wit's end, not knowing quite what to do and feeling unsure, I'll turn to him [father] then and say, "Well, what do you think?" He will then say, "Well you're the one that knows this stuff." Then I find myself sort of silently screaming inside - But you're a parent, too, you can see what's going on - you know, you've had as much experience, really, in handling him, not as much in the day, but he's seen as many episodes as I have, almost, and he should know by now. The father continued with: Well, I can't just leave it up to her, obviously, because she's not always around or she's not sure of her own judgement, but it is pretty much true that any time, virtually without exception, any time we've had a disagreement about the appropriate thing to do with the children, or what's wrong with the children or whether anything is wrong with the children, she has been right and I have been wrong. Almost without fail. We disagree less now, or I'm more likely to see it her way than before, or may simply be not having an opinion any more, because I don't trust myself. In a later interview, the same mother said: I have often yelled at D. to say, "Look, you've got to know what these medications are. You know I shouldn't have to tell you to give him the medications if I'm going out. You should just assume that of course he's going to have to have one before he goes to bed. You know you should know what he's on. What if I'm late coming home, or what if I have to go out of town, or what if I get in a car accident or something?" So you know I've sort of sometimes pushed you [father] I know, to be more aware of what he's on and to take more responsibility. Fathers often abdicated responsibility to the mothers because "they know the child best" and yet mothers wanted the fathers to take on more responsibility. Several mothers in this study were 51 homemakers and therefore were more involved in the care of their children. Many parents did share responsibilities to make the asthma management easier. This became especially important when there were younger children in the family. In some families, the fathers did not view the asthma to be as serious as the mothers. Fathers were more likely to not give the child medications if the child protested. Mothers recognized the implications of the child not taking the medications, and were more likely to be diligent in their administration. In a few families, the father was not even aware of what medications the child was taking. Fathers were often not as free to give the time to learn about asthma and its management because of their work responsibilities. The task of managing the child's condition on a day-to-day basis generated the largest amount of data in this secondary analysis. Parents reported the difficulties they had in obtaining information and the impact that this had on their management of their child's condition. Parents also expressed their experiences in dealing with physicians and the health care system. The preventive measures required, including medication administration, and the unpredictability of asthma were of particular concern to these parents. Mothers and fathers expressed differences in how they perceived and managed their child's asthma. Meet the Child's Normal Developmental Needs All of the parents in this study shared examples of the struggles and concerns that they had about meeting the child's normal developmental needs. Normalizing. All of the parents in this data set discussed the importance of not allowing the child's asthma to prevent their children from participating in activities like other "normal" children. "We tried to let him do everything that he'd normally do at that age and not hold him back because he's got asthma." This was especially true during the "good" times when the 52 child's asthma was not presenting symptoms that interfered with day-to-day living. "Like S.'s only bad when he's got it and he's in the hospital, and once he's out, and on the road to recovery, he's no different than any other kid in the neighbourhood." Despite statements such as this, however, parents also talked about weighing the potential risks and benefits as well as balancing the child's freedom with necessary restrictions. We try to keep her going to her usual activities too, and I know there is this risk. If I take her into crowds of children she's going to possibly come down with something. But we feel that the chance to get out and do these things with other children, and lead more or less a normal life is more important than the risk. Other parents gave mixed messages. For example, one mother said that her child had no restrictions on his activity, and yet later in the interview shared how she did not let him play out in the night air. Parents were also cautious about the potential risk of the child developing a cold. "Other people say, 'Well if they catch a cold, they catch a cold, so what? Because they'll be over it in 2 days'. We can't react like that." In the early stages of managing the child's asthma, parents were more protective of their children than after gaining knowledge and experience. Parents also expressed the need to control the asthma without impacting the child's growth and development. "It's the illness that we have to control but she should still be able to do those other things." Another parent said, "The holiday is far more important, we'll cope around the asthma." Parents did not want their children to be denied anything because of their asthma. They also did not want their children to use asthma as an excuse. Parents were worried about transferring their concerns and fears about asthma to the child and did not want their child to feel different from other children. We're accommodating, so that in many ways I'm sure that if you were to question half these people, people would never know. Nobody would ever know that V.'s asthmatic. Unless we openly said it, or she had an asthma attack, nobody would know. I mean, and 53 they need not know. She can live a totally healthy life, and not have to carry this burden on her that she's different, you know. Throughout all of the interviews, the strong theme of normalizing their child was evident. When the children were able to participate in their usual activities, asthma was not making a serious impact on the children. It was important for the children to be able to participate fully in activities to avoid being disappointed. Physical impact. There was much concern expressed by parents that their child's asthma was taking energy away from growing during a period of rapid change and growth, both physically and mentally. Several parents mentioned that their children lost weight when they had a severe asthma episode. Others talked about how skinny their children were as babies. Another father wondered if his child's asthma delayed the child from learning to walk. An important sign of their children doing well was that they were gaining weight and growing taller. It was an important milestone for one set of parents when their child finally reached 40 pounds. Some parents compensated for their children's lack of physical ability by encouraging them to pursue reading, artwork, or singing. One couple was aware of the fact that their child had developed more intellectually than physically and tried to make their home environment compensate for the child's limitations in accessing other places. For example, they set up a climbing net in the child's room for use when the child could not go to the park because of the wind and dust. Behaviour management. Eight sets of parents expressed some concern about how to manage their child's behaviour and/or how to discipline their child. Parents often wondered if their child was "putting the asthma on" for attention. It was especially difficult to differentiate true asthma behaviour from "acting out" when the parents also lacked information. 54 [Father:]If he decides to bring on an attack he can bring it on easily just by crying. He'll cry and get upset and start choking and coughing and the next thing you know is he can't breathe. I think he's somewhat aware of it too. [Mother:] That's where the hard part about discipline comes in because it's hard to know. Sometimes he'll wake up in the night and he's coughing and you think is this for real or not? Does he want some attention or what's happening? Another father described his dilemma this way: The child seems to need more attention because she's sick and doesn't know what's going on and they should have that attention because obviously it makes them feel better. But there will come a time when the child - usually when they're starting to feel better -when they'll go, and J. does this, she says, "Hey, yea, when I behaved like that I got attention" and she'll continue this pattern of behaviour and at that point of course it becomes destructive and that's the thing I find tough, when to draw that line. Because at that moment it's inappropriate to give any kind of attention and you really want to do the reverse. That's a toughie to deal with. I guess that's just judgement. I'm not very good at making those kinds of judgements. Parents postulated that as the children got older, they were less likely to "fake it" because they did not want to miss out on activities like skating or going to pre-school. Most of the parents expressed the hope that their children would eventually take over responsibility for their own asthma management. Parents found that the children's asthma, in general, was easier to manage as the children were able to recognize their own symptoms and connect their asthma with various triggers. As the children gained understanding, they were more willing to cooperate in taking their medications. They were also able to recognize their own limits and slow down when necessary. Meeting the child's normal developmental needs was an important task for the parents in this secondary analysis. These parents did not want asthma to interfere with their child's development and made every attempt to normalize their child's lifestyle. The physical impact of asthma was also an area of concern as was behaviour management. 55 Meet the Developmental Needs of Other Family Members In addition to managing the child's asthma and meeting the developmental needs of the child with asthma, parents also described difficulties in meeting the developmental needs of other family members, including themselves. Siblings. Seven of the children with asthma had a younger sibling. Having a second child added additional challenges to the families who were already managing a child with asthma. It was especially hard on siblings when the children with asthma had to be hospitalized. Yes it really changes when you have two kids because then it's not just the mother who has the responsibility, you know. When you just have the one child it's very easy for the mother to sort of stay home after one child or say the child has to be hospitalized and to go to the hospital with the child. But when you have two children, especially as we did have a nursing baby, I couldn't go and stay in Children's Hospital with P., you know, I couldn't automatically go to him; you have to consider the other child too. During one acute asthma episode, one set of parents became progressively more and more run down until they "came to the end of the line" with the younger child. [We] came to the end of the line with the younger one, and made up our minds we were going to leave him and let him cry. It didn't work. But it was as much the circumstances as P.'s own thing [child with asthma], it was a problem of the family, it was a problem of having one bedroom for two boys and of having a restless, energetic young one. Parents expressed their desire to treat their children in the same manner even though one had asthma and the other one did not. Parents. Parents found it difficult to take time for themselves, especially during periods when their children's asthma was particularly "bad". Two of the mothers also had asthma themselves and they found it particularly difficult to manage when they were sick at the same time as their children. "You're there for the children, and I know it's a benefit to be nice to yourself but you can't be when you have a sick child," said one mother. Mothers and fathers needed to make sacrifices in order to manage their child's asthma. One mother left her career as a 56 teacher to care for her child. She was more than willing to make this sacrifice if it would make her child better. One of the fathers also had to make sacrifices in his work: Mind you we do see a kind of onslaught because usually when we see that rapid breathing I know that for 48 hours that's going to mean virtually, not in a selfish way, but as a matter of fact, for 48 hours I won't get any work done, I won't get any writing done. Everything sort of closes down because you can't do it when you are that tired and that fatigued, even with all the will in the world. Another father had to "fake" sick time at work so that he could stay home and help manage his daughter's acute asthma episodes. Some parents resented the sacrifices that were required. "You have to sacrifice but you shouldn't have to sacrifice everything so that you're slaves to the whole situation." Many examples of marital conflict were reported by the parents in this study. Often the conflict arose from different opinions on how to manage the child's asthma and when to take the child to the hospital. Other frustrations arose from the fathers taking a lesser role than the mothers as described previously. Parents often blamed each other for the asthma. Oh yeah, you blame each other, but it's frustration more than anything else, because, you know a decision to have a child is to increase your family but when it changes your lifestyle to the point that it did with us, which was like...we couldn't go out, we couldn't get a babysitter. Not being able to get a reliable babysitter was often cited by the parents as something that was frustrating because it meant that the parents were never able to get a break from the children to spend time on their own or together as a couple. The parents in this study found it difficult to balance the needs of their child with asthma with the developmental needs of other family members. They specifically referred to the challenge of meeting the needs of younger siblings, their individual needs, and their needs as a couple. 57 Cope With Ongoing Stress and Periodic Crises Having a child with asthma is stressful for parents. Parents found it stressful to watch their children having trouble breathing; it gave them a sense of helplessness. They wanted to make the asthma go away, and the fact that they could not was a source of stress. Parents were also concerned about the future of their children and found it difficult to cope with the uncertainty of asthma. In addition, hospitalization was a major source of stress and concern for parents. Concern for the future. Many parents expressed that they had thought their child was dying at some point during an asthma episode. I know that P.'s not dying from asthma. A couple of times when he's laid down on the floor with sickness sometimes it scares me and I think he's going to die. But I don't really think about death, you know, I just think about how many days will this last, and when should I phone the doctor, or will he get over this by himself, or, please God, not again, you know. Parents were less worried about death after some experience with their children coming through some acute asthma episodes. Some parents expressed worry that future or younger children in the family might develop asthma, for example: This is what I find hard to cope with, when the days go on and on and on and then I know that the baby [currently well child] will probably go and get the cold, and I suppose by next winter the asthma may manifest itself with him as well. I don't know, my secret dread, not so secret dread. Uncertainty. One of the most frustrating things about the nature of asthma that the parents in this study experienced was the uncertainty and unpredictability of when the next asthma episode or attack would occur. Even though there was some pattern to the asthma, it would still come on quickly or the patterns themselves would change. Even after the child had asthma for 58 several years, parents were still learning about triggers. The uncertainty of asthma episodes also meant that the families had to always be prepared and take medications with them wherever they went. Parents recounted stories about times that they had forgotten their child's medication and spoke about the hassle and stress that this caused. One set of parents described this as an "awful" experience. Asthma is very disruptive to families and often required outings to be cancelled at the last minute. One family stopped telling their child about upcoming events in advance to avoid disappointment if the child was unable to attend. Asthma episodes were very disruptive in that they often happened during the night or on weekends. The entire family was further disrupted if the child needed to go to the hospital. The constant uncertainty was very wearing for families and made management more difficult: I want someone to tell me what to do because the uncertainty, as I said before, has eroded our confidence and little asides that my mother would make, or that friends would make, you know, "Sick again" or, you know, they'd give you advice all the time. . . . You just will cling to anything. . . . Probably the reason you want someone to tell you what to do is so that when all the uncertainty comes up and confidence starts going downhill, you don't know what to do, so at least you can say, "Well, I did exactly what the doctor said." Then you can blame it on the doctor, or you can blame it on this book or... Hospitalization. Without exception, all 10 families had some experience with the hospital, either as an in-patient or during a visit to the Emergency department for treatment of the child's asthma. For some parents, it was a relief to finally take the child to the hospital in that the responsibility for managing the child's asthma was taken on by the health care team. Although it was sometimes considered easier for the parents to have their child in the hospital, these parents invariably believed that it was not easier for their children. Hospitalization was very stressful for the children, especially their first visit. One child took months to recover from a traumatic 59 experience with the hospital at the age of 15 months. With time and experience, however, most of the children (including this one) became accustomed to visits to the hospital and were reported to cope very well. Other parents did not experience relief in taking their child to the hospital, but instead viewed this as a "cop-out". They perceived going to the hospital as shirking their responsibilities as parents and dumping their problem on somebody else. These parents did not want others to be doing what they could do themselves. All of the parents in this study took measures to avoid hospitalization as much as possible. Several families purchased air compressors so they could administer nebulized Ventolin (a bronchodilator) at home and thus avoid a trip to Emergency. Avoiding the hospital was viewed as a step toward independence. Parents did not want to waste the time of the hospital staff and often grappled with the decision of when to actually take the child to the hospital. Like I never know when to take her to the hospital. . . . 'cause sometimes we've gone there and hadn't realized it, but just going outside is enough to make her a little better that she's not as wheezy when she gets there. And then I feel ridiculous like I'm wasting their time by taking her in there, you see what I mean? And I said to one of the nurses even in there, like I never know when to bring her in and she says, "Don't worry, bring her whenever you feel like", she says, "We are open twenty-four hours. No problem." So that made me feel better. Like I'm not just being a neurotic or something. A decision to go to the hospital meant that the parents had exhausted their own available resources. "I reach a limit. Then I know. That's it. At that point I can't do any more. I've got to get help." The episodic and unpredictable nature of asthma played a large role in the task of coping with ongoing stress and periodic crises. Parents expressed concerns for the child's future as well as difficulties related to the uncertainty of asthma, especially when hospitalization was required. 60 Assist Family Members to Manage Their Feelings Parents. The parents in this study described a wide range of emotions and feelings that were generated as a result of their child's asthma including: anxiety, guilt, fear, resentment, anger, impatience, exhaustion, frustration, helplessness, and desperation. The intensity of some of the parents is evident in the following quotes from three different parents: So sometimes I feel mad and resentful because of that, you know [staying home with sick child while father goes to work], it's really ~ I don't think there's anything worse than staying indoors five or six days in a row with a child who is sick; and then a child who's getting better, but perhaps still isn't better enough to go outside; and then another sibling who's well; in a house like that ~ 950 square feet, you know, the T.V.'s on too much, they run around too much, they get bored. It's just awful, it's like torture, you know. You can't even really run up to the store or anything unless D. [father] comes home early from work, and sometimes I'll phone him up and say, "Please come home", you know, or try to get my mom to come in or somebody, it's really hard. And then if you get a week's break, or two week's break, and then have to stay home another five to six days in a row. It's just awful. And the nights are bad too, often you know, because there will be coughing. And we get the humidifier on, steam, you know, there's a sequence when P. gets a cold: his nose will start to run, and then you wait, and he'll wheeze and once the wheeze starts then I know I can put him on the Tedral and the Tedral usually controls it. But then, there's this worry about, you know, there's a worry about the fever. If the fever gets really high then you — it's definitely gone into his chest, the cold has definitely gone to his chest, and we have to put him on antibiotics, so there is the whole story about when to phone the doctor. But also if the asthma is not controlled then you worry about the pneumonia, or serious croup, and so then you're just waiting, like as soon as the nose starts running, then you'd know, that for the next four days you are just going to be on the brink, then you get the feelings of despair, and then you know, and then, relief, oh, he hasn't got it yet or, oh dear, well I had better phone the doctor now. I was telling my husband last week, I said gee I feel like sometimes it's never going to end, or I feel like my life is being ruined in a way, like I cannot do whatever I want or I have a child to take care of when she's sick and then myself and all that. Sometimes I'm getting mad because I think she doesn't listen to me when she goes outside she's not supposed to be around that and that now if she gets those attacks again. It is emotionally draining to be constantly in demand. I mean, she wants me totally for 30 hours unless she's asleep. If she's awake, I have to be right there. And she tends to get rather G-R-U-M-P-Y, too because she's not feeling well. And that can be rather tiring, because you want to say, "Look, I'm doing everything in my power, don't be so grumpy, what more can I do?" When you're fatigued and you're up in the night you just try to lie down in the hospital, she's drifted off, and you just get lying down, and she wakes up 61 and is calling you again, and then you feel guilty that you feel angry that she...you're unwilling to jump up and be right there. . . . I found I had to make an incredible effort last time to be always kind to her'. I knew I had to, because she was sick and after all it's only fair, but I found as the days wore on in the hospital, it was taking it's toll on me. One father expressed how his child's asthma impacted his emotions while at work. "It was a week before I could deal with difficult situations at work without blowing up. I had no patience with what were clearly trivial things." Another feeling that was frequently expressed by parents was guilt. Often the guilt was felt because the parents blamed themselves for doing "something wrong". This was lessened or completely alleviated after receiving adequate information about the causes of asthma and how to manage it. This is also a part of working to accept the child's condition. Once we were able to accept that she's asthmatic then it's a totally different thing. You can take away all these blames or these guilt feelings that you have and you have a lot of guilt feelings when your child is forever sick. Especially when people make these little comments like, "What's the matter with you guys?" Information and improved management also alleviated the incredible desperation and helplessness that parents felt when they were unable to manage their child's asthma. Other feelings that parents expressed included frustration, being short-tempered and frightened. During the interview process, many parents said that they had never formally exchanged ideas about the impact that their children's asthma was having on their families. Parents were grateful for the opportunity to recognize their own feelings as well as those of their spouses. I [father] was never aware until I listened [to] L. [mother] describe -1 think this is the first time we've ever talked - or that L.'s actually expressed her feeling directly about J.'s illness, and I've learnt a lot about the way L. feels, really feels about J. from just listening to what she's just said, and there are things in there that I was really unaware of. Child. While the parents shared an incredible amount of information about their own feelings, they had less to say about the feelings of their children. Some of the feelings that were 62 expressed included being scared when hospitalized, disappointment when events had to be missed, and concern about death and dying. One set of parents helped their child to cope with his feelings by involving him in the decision-making process about his asthma management. The mother stated that she did this "because it makes me feel like I'm not controlling his environment too terribly, but I have to feel that it's helping him feel less a victim, or whatever." The father continued on to say, "He likes to feel in control of the situation. That's my feeling. He's very upset by uncertainty." As mentioned previously, parents did not want their own feelings of guilt and concern to be passed on to their children. I really have this quite strong conviction in my mind that I don't want to make P. feel guilty about being sick, even though it just drives me wild when I'm in here five to seven days in a row in this house with a sick kid. I really don't want — sometimes I yell at him or sometimes ~ I know he must feel that I resent it or that I'm sick and tired of it, or that I'm worried to death about him, but I want to avoid as much as possible him knowing how upset I am, and him feeling guilty about it, because I don't want him to grow up with the guilt that I did, and I don't want to go around guiltily damp mopping his room twice a day and manifest some guilt to him about it. The parents in this data set described a wide range of emotions that were generated as a result of their child's asthma. Less information was forthcoming about the child's feelings, which is not surprising since the focus of the interviews was on the parents. Educate Others About the Child's Condition The parents in this study shared examples of how they educate others (including the child) about the child's asthma. Child. All of the parents interviewed shared evidence that their child was slowly learning more about how to manage his or her own asthma. It was obvious that this made the overall management of the asthma much easier as the children began to take some responsibility for their 63 illness. The parents anticipated and looked forward to a time when the child would be completely responsible for their own asthma management. The degree to which the children were knowledgeable about their asthma varied with their ages. The younger children were unable to articulate clearly what they were feeling or experiencing, whereas the older children knew when they were starting to have an asthma attack and could differentiate between a runny nose from a cold versus allergies. The older children also knew how to avoid some triggers such as certain foods. Family and friends. An overriding theme throughout the interviews was that one must actually experience having a child with asthma to truly understand what it is like. A large part of educating family and friends was spent countering advice that was given by others, freely and without solicitation. Most of the advice received made parents feel inadequate, but until the parents had accurate information, they were unable to provide an answer to this "advice". When asked to modify their behaviour, such as smoking, others did not always take the request seriously. It was not until others actually saw the child experiencing an asthma attack that they modified their behaviours. Parents would often avoid contact with others, rather than face what they had to say. And you know, I think that we're all...how do you put it?...Well, we're all human...So that even though you say to yourself, "You should never compare your child to anybody else's", it's hard to keep that ideal. And we happen to have a cousin at the time who also had a kid and, you know, she would forever be saying, "My kids are never sick, they're never sick. You know your kids are always sick, what's the matter? My kids are never sick." You know, like eventually that grates on you to the point where I would say to C. [mother], I don't want to see those people. When they phone and they say they want to come over, tell them we're busy, we're going somewhere. Parents often had to be blunt with others and tell them not to come and visit if they had colds because of the potential impact on their child's asthma. 64 Other caregivers. Finding reliable babysitters was often a difficult task for parents. Parents had to educate babysitters and other caregivers about asthma and how to administer medications. Even after sharing this information, one mother was still unsure whether or not the babysitter was really prepared because she had never actually seen any attacks. Another mother had to convince the day care workers that her child's vomiting was related to coughing and not anything contagious. Some of the children started school towards the end of the study. Even when at school, the parents remained the primary managers of their child's asthma. They would give the child medications before school or have the school call them during the day if the child needed some additional medications. Parents felt that teachers were not able to be vigilant enough because they could not watch the children as closely as the parents could. Parents in this study provided examples of how they met the task of educating others about the child's condition. It was especially important to educate family, friends, and other caregivers, such as babysitters. Establish a Support System An important part of coping with the management of their children's asthma was the establishment of a support system, including adequate resources. Family and friends. All of the parents expressed that others do not understand unless they have a child with asthma. One mother shared the following experience: Yeah, that's what I can't stand [someone who says, "Oh, he's sick again"]. So I talk to my own friends. I think I told you last time about the friends I mentioned that when they said "Oh, sick again", I said, "Well, you know he's got a deficiency in his immune system, he's atopic that means he's susceptible to allergies and respiratory infections". And they said, "is that like AIDS?" You know, it just makes you feel terrible. Cause in the dark heart of your darkest night you start to think about things like that, maybe he's 65 going to get leukemia, or he's going to get something terrible or...But, so, having somebody who knows something about the disease would help me. These kinds of comments often prompted the parents to avoid others unless they also had a child with asthma and could understand. I'm sure that it's not an ultimate panacea if I know another asthmatic parent I could phone up and say well, "I feel like bashing my head against the wall" — I know just from other things we've done, you know, from prenatal classes and whatnot that having support groups or having and knowing that other people are in the same position is helpful. Not all parents desired to make contact with other parents who had a child with asthma. I don't know about support groups, like all these things you know. They just came on me very gradually, very slowly. Oh there would be things such as a support group for asthma, for epileptics, you know, I didn't know about things like that, you know. And I never bothered to contact people, I'm kind of a private person, I guess. The extended family played an important role for many of the parents who were interviewed, but there were also some mixed feelings. "The extended family they play a very significant factor too, especially your own parents. Because you obviously want to do the right thing in their eyes, you want them to think that you're raising their grandchildren properly." Well- meaning family members often undermined the parents confidence with unsolicited advice about how to manage the child's asthma. At the same time, parents appreciated the help that they received from family and friends. Most parents expressed the need to have help from outside the home at some time during their child's illness. Seeking out resources. This sub-category has been explored in more detail under managing the child's condition on a day-to-day basis. Many parents talked about taking their own intiative to seek out resources such as the lung association, library, public health nurse, or pharmacist for information on how to manage their child's asthma. Other parents requested to be 66 seen by a pediatrician or an allergist. Finding information and resources was a gradual process that took place over several months or even years. Financial implications. The cost of medications and equipment was cited a few times as a concern for parents. One family could not afford the cost of an air compressor which meant having to go to Emergency for treatment. Families who could afford this equipment felt that it was a small price to pay for the convenience and control that it provided. Other financial implications came from the cost of house renovations and one mother who left her teaching position. This sub-category is an important one, but one that did not generate much data in the interview set that was used for this secondary analysis. Parents in this data set reported the importance of establishing a support system, especially with other parents who also had a child with asthma. Seeking out resources and financial implications were also mentioned. Summary This chapter has presented the data from interviews with 10 sets of parents who had a pre-school aged child with asthma. A wealth of information was obtained from these parents as they told their story about what it was like to live with a child who has asthma. The findings were categorized and summarized according to the Canam ATF demonstrating the usefulness and applicability of this framework to this secondary analysis of parents' interview data. These findings are discussed and applied to nursing practice in the following chapter. In Chapter 6, conclusions as well as implications for nursing practice and research are presented. 67 CHAPTER 5: DISCUSSION AND APPLICABILITY OF THE FINDINGS The primary purpose of this secondary analysis was to identify the adaptive tasks from the Canam Adaptive Task Framework (ATF) that were expressed by parents of pre-school aged children with asthma in part of a previously existing qualitative data set. The second purpose was to identify any additional categories present in these data that may not have been accommodated by the eight designated tasks of the ATF. As presented in the findings in the previous chapter, all eight adaptive tasks of the ATF were accounted for to some degree by the data, and I was unable to identify any additional categories. In this chapter, the major findings of this study are discussed using the headings of the eight adaptive tasks as outlined in the ATF, and compared with relevant literature in order to ground them within the current body of knowledge about parenting pre-school aged children with asthma. Implications for nursing are integrated throughout the discussion. Limitations of this study are also presented at the end of this chapter. Canam Adaptive Task Framework Accept the Child's Condition It was clear from parents in this secondary analysis that accepting their child's condition was a process. Many parents had difficulty getting their child diagnosed with asthma and, until this happened, they did not even begin the process of accepting it. Initially after the child was diagnosed with asthma, parents experienced many feelings including shock, disbelief, and denial. Coping strategies that helped parents move toward acceptance were: (a) comparison with children who they considered to be worse off than their child, (b) expressing optimism and hope regarding the child's future, (c) focusing on the positive benefits of their child's illness, and (d) obtaining sufficient information about asthma and its management. 68 Parents in this secondary analysis related the difficulties that they had in obtaining a diagnosis of asthma for their child. In many cases the parents were not satisified with medical explanations for their child's symptoms and sought out additional resources. This is consistent with the findings of Knafl, Ayres, Gallo, Zoeller, and Breitmayer (1995), who used a grounded theory approach to conceptualize how families define and manage a child's chronic illness and identified five different diagnostic pathways that were taken by the 63 families who participated in their study. Once their child was diagnosed with asthma, parents expressed the emotions of shock, disbelief, denial, and anger. In a review of nursing research on family adaptation to a child's chronic illness, Austin (1991) identified shock, fear, guilt, and anger as the usual emotional responses to the diagnosis. Similar emotions are described by Johnston and Marder (1994). Other researchers have noted that parents go through a grieving process as they move towards acceptance (Burkhart, 1993; Gibson, 1995). Seventy per cent of parents (N=30 families) in a study by Clements et al. (1990) said that the time of diagnosis was one of the hardest times in managing their child's chronic illness. Although the parents in this secondary analysis related a process in the acceptance of their child's diagnosis from denial to acceptance, it was not necessarily linear. Many of the parents went through cycles of emotion and often still experienced anger and frustration despite the fact that they had accepted the diagnosis of asthma. (Since many of the data segments can be applied to more than one category, this point is discussed later under managing feelings.). Some parents spoke about the loss of their illusions about having a "perfect child". Other authors such as Revell and Liptak (1991) have also noted this. The parents in all 10 families in this secondary analysis eventually came to some level of 69 acceptance of their child's diagnosis although some were still unable to generate explanations to help them understand what had happened and why as McCubbin et al. (1980) describe. The parents in this secondary analysis found it comforting to compare their child with asthma to other children with worse conditions. Other researchers have noted similar findings (Frey et al., 1989). Another coping strategy used by parents in this study was maintaining optimism and hope regarding their child's condition. This has been supported by others in the field (Burkhart, 1993; Ray & Ritchie, 1993). Parents also focused on some of the positive benefits of having a child with asthma, such as quitting smoking or altering their diet. Obtaining sufficient information about asthma and its management was another coping strategy used by the parents in this study to help them accept their child's condition. This is discussed more fully under the next adaptive task. It is important for nurses to recognize the path that many parents have taken in order to have their child diagnosed with asthma. By encouraging parents to tell their story, nurses can gain insight into parents's interactions with members of the health care team (Knafl et al., 1995). For example, parents who have had a negative experience with the health care system, may be distrustful and hostile towards members of the health care team. Nurses also need to recognize the coping mechanisms that parents use to help them accept the diagnosis of asthma in their children. Parents that are already using these strategies should be encouraged to continue to use them, and should also be offered reassurance that these are healthy ways of coping. Other parents may need to be offered these coping strategies as options to be pursued. Manage the Child's Condition on a Day-to-Day Basis Parents are the primary caregivers for a child with a chronic illness and must manage the illness on a daily basis (Jerrett, 1994). All of the parents in this secondary analysis had a story to 70 tell about how they managed their child's asthma on a day-to-day basis. One of the most important components of meeting this task was having appropriate information about asthma and its management. This included not only the pathophysiology of asthma and the methods of treatment, but information around decision-making, such as, when to seek out a physician or go to the hospital. When parents were unable to access appropriate information they reported experiencing frustration, helplessness, fear, and a lack of control. Some parents said that they knew so little, they did not even know what questions to ask. Parents wanted to know the "bottom line", that is, what they needed to do to prevent and/or manage their child's acute asthma episodes. Once they had this information, parents spoke about how "simple" it was to manage the child's asthma and how they felt in control and more confident that they could cope with their child's condition and prevent or manage acute asthma episodes. Asthma management became a part of their normal family life. Other researchers have also found that information is necessary in order to manage a child's chronic illness effectively (Canam, 1986; Gibson, 1995; Hayes & Knox, 1984; MacDonald, 1995, 1996). Learning to access the health care system was a challenge for the parents in this secondary analysis and a very real source of frustration. Parents had to take their own initiative to seek out resources and, through trial and error, determine the most appropriate management for their child's asthma. Parents expressed the wish that they had been able to access this information much sooner and were frustrated by the process. Despite the availability of resources, parents did not access them right away. Five of the families in this secondary analysis attended the Family Asthma Education Program (FAEP). None of these families, however, were referred to this program by a health professional, but instead were told by a friend or had seen an advertisement for the program. All of the families who attended this program 71 spoke about the control that this program gave them by equipping them to manage their child's asthma. Given the importance of information for parents to manage their child's illness, it is essential that nurses take an active role in promoting and providing education programs. Programs such as the FAEP need to be continued and expanded. Physicians must also become knowledgeable about available asthma resources so that they may refer parents, preferably early in the diagnostic phase of the illness. Even if the child has been diagnosed with asthma for some time, however, it cannot be assumed that the parents have all the necessary information for asthma management. It is imperative that health care professionals accurately assess the level of knowledge that parents have each time they access the health care system. This includes the capacity of the parents to engage in clinical decision making, that is, the types of knowledge that enable the parents to assess (and distinguish) the severity of a particular attack and to know what next steps might be taken. Such knowledge is not just acquired in a brochure, or in a teaching session, but is grounded in the child's responses to his or her particular triggers. The use of scenarios based on the child's manifestations of asthma may assist parents to become more confident in managing their child's asthma. Parents want to be involved as partners in the care of their children and desire to be recognized for their expertise in the care of their child. Parents found it especially upsetting when their experience and knowledge about their child's illness was discounted by members of the health care team, especially physicians. Other researchers have had similar findings (Clements et al., 1990; Gibson, 1995; Ray & Ritchie, 1993). Parents perceived physicians to be too busy to sit down and give them information and yet they desperately needed information about asthma treatment and management. Nurses must assist parents to use the health care system to their greatest advantage (Jerrett, 1994). Nurses must also take a more active role in the education of 72 parents about childhood asthma and how to manage it as part of their daily lives. By listening to the parents' stories and recognizing the expertise of the parents about their child, nurses can become partners with parents in individualizing teaching plans and management routines for their child (Shelton, Jeppson, & Johnson, 1989, 1995). Despite many negative experiences, most parents were eventually able to form positive relationships with members of the health care team who they used as resources in becoming knowledgeable about the management of childhood asthma. Although nurses were occasionally mentioned as a resource and source of information, physicians were the primary health care team member cited. Pharmacists were also mentioned on several occasions. It is important that asthma education be provided by a variety of members from the multidisciplinary team. Since hospitalization is often the first contact that parents have with nurses, this is an important time for assessment and teaching by nurses. Parents in this secondary analysis spoke about the need to always be on guard for signs and symptoms that their child was beginning an asthma episode. This has been called vigilance (MacDonald, 1995; Stewart et al., 1994). MacDonald's (1995) ethnographic study of four mothers of children with renal disease found that vigilance is stressful for mothers because "responding to the signs and symptoms was dependent on their ability to recognize the cues" (p. 504). Nurses are in a prime position to teach parents to recognize the signs and symptoms of asthma and how to manage them. More importantly, parents need to be taught how to prevent asthma episodes from occurring, for example, starting preventative medications before the winter "bad season". Parents in this study went to great lengths to prevent acute exacerbations of their child's asthma. Despite the effort and sacrifices that were required, parents believed that it was worth it to avoid an asthma episode and possible hospitalization. 73 Asthma is a very disruptive illness to families due to its episodic and unpredictable nature. Parents often found it difficult to plan ahead or had to cancel activities and plans due to an asthma episode. Parents had to adapt their lifestyles to accommodate the needs of their child. For some parents this included leaving full-time careers; for others it meant not visiting friends who smoked. The mothers who participated in MacDonald's (1995) study also described the changes they had to make in their own day-to-day activities to accomodate their child's needs, including re-establishing relationships with family and friends. Parents described differences between mothers and fathers in how they perceived and managed their child's asthma. In this FAEP evaluation study, mothers were the primary managers of the child's illness. This is consistent with other findings in the literature (Anderson & Elfert, 1989; Eiser et al., 1991; Eiser & Havermans, 1992; Stewart et al., 1994; Turner-Henson, Holaday, & Swan, 1992). Some fathers in this secondary analysis participated in the management of their child's asthma, but they differed in their abilities to cope and provide support for the mothers. As described in Chapter 2, Copeland and Clements (1993) report that although the mothers and fathers in their study perceived their child's chronic condition in a similar manner, they reported using different support strategies during critical times. This sub-category in this secondary analysis was not saturated from the available interview data, which is not surprising since the primary focus of this research was to describe the experience of parents rather than the differences between mothers and fathers. More focused interviews to pursue this would be required to make further conclusions about the differences between mothers and fathers and the reasons that mothers are more.involved in the management of their child's asthma in Canadian cultures. If it is recognized that mothers are assuming the primary responsibility for asthma management, nurses may need to provide those mothers with additional support and 74 assist couples in the management of mother and father parenting differences. It is also important to note that although both parents may attend a particular education session, they may not be equally capable of assessing, and responding to, the child's condition. The management issues that were expressed by the parents in this secondary analysis are specific to the episodic and chronic nature of asthma. Nevertheless, the task of managing the child's condition on a day-to-day basis is one that applies to any chronic illness (Clements et al., 1990; Knafl & Deatrick, 1986; Perrin et al., 1993; Stein & Jessop, 1989). These findings support this task as presented in the Canam ATF. Meet the Child's Normal Developmental Needs Parents in this secondary analysis expressed a strong desire to meet their child's normal developmental needs despite the limitations imposed by the diagnosis of asthma. These parents constantly weighed the potential risk to the child's physical health against the potential benefits to his or her emotional health of participating in certain activities. A common coping strategy used by the parents in this study was normalization. This strategy has been noted by many other researchers (Anderson, 1981; Burkhart, 1993; Deatrick et al., 1988; Knafl et al., 1996; Knafl & Deatrick, 1986). Although the parents in this study tried to treat their child with asthma as 'just an ordinary child', in reality they had to take precautions at times which limited the child's activity. As stated by Deatrick et al. (1988) "normalization is always a matter of degree which entails selective attentions to some aspects of family life and simultaneous inattention to others" (p. 21). Hayes (1992) has called this a "new normal". It is important that asthma is well controlled so that these children can participate in play activities that promote normal development (Jost, 1996). 75 The parents in this secondary analysis often found it difficult to make decisions about discipline and behaviour management because they were not always able to distinguish how much of the child's misbehaviour was related to the child's asthma as described by Canam (1985). Some parents noted that their child could bring on asthma episodes by crying. Others wondered if their child's nighttime coughing was an attention-seeking behaviour. Part of the difficulty seemed to be associated with a lack of knowledge about the manifestations of asthma. When providing education for parents, nurses must consider the child's age and expected behaviours and share this with the parents. Five of the families who participated in this secondary analysis attended the FAEP which was specifically designed for parents of pre-school aged children. Since the growth and development needs of children are so varied, it is important that education programs target as specific age groups of children as possible. This should include information around decision-making when faced with behavioural issues. The parents in this study were faced with unique challenges related to the pre-school age range of their children. During this stage, children are in the preoperational period of intellectual development (Piaget, 1952) but are capable of understanding some of their asthma management (Ladebauche, 1997). Parents reported finding it easier as their children got older because they were able to take on additional responsibilities for their own asthma management such as, becoming more cooperative in taking medications; telling parents when they were feeling "wheezy" or "tight"; connecting certain triggers, such as foods, with asthma symptoms; and recognizing their own limits and when to slow down. This was especially evident during the third interviews when some of the children had started kindergarden. Children with chronic conditions appear to have similar needs to their healthy peers in terms of the progression through developmental stages and the challenges of coping with the predictable tasks of childhood 76 (Burkhart, 1993). Nurses must be able to provide appropriate information about growth and development of children as it impacts their diagnosis of asthma. For example, it is important that parents are aware that pre-school aged children sometimes see illness as punishment and may feel responsible in some way for their asthma (Wong, 1995). Meet the Developmental Needs of Other Family Members Parents must balance the time and energy they invest in their child who is chronically ill with personal investments in themselves and other members of their family (McCubbin et al., 1982). Parents in this secondary analysis spoke about the additional challenges of having a second child who was younger than the child with asthma. It was especially difficult to meet the needs of both children when the child with asthma was hospitalized. Mothers felt especially torn in trying to be there for both children. These parents were often so consumed with managing their child's asthma that they had little time left over for themselves. This led to an overwhelming sense of fatigue and exhaustion. In a study by Stewart et al., (1994) as well as in this secondary analysis, mothers reported having no time to meet their own needs and described fatigue and the need to maintain their own health. While most parents in this secondary analysis accepted this as part of their role as parents, there were times when this added strain to the families, especially between the mother and father. Most of the strain was related to disagreements in the management of their child's asthma. Strategies focusing on strengthening family life and relationships have been shown to be extremely important in coping with the ongoing stress of caring for a child with a chronic illness (Ray & Ritchie, 1993). Many sets of parents in this secondary analysis were able to share the responsibilities of asthma management which often provides a useful coping strategy (Power, 1985). One mother 77 modified her role and personal expectations by leaving her teaching position to care for her child with asthma. This is an area that could be explored more in future research. In addition to providing information about asthma and its management, nurses must provide information and resources to parents about how to meet their personal needs. Cope With Ongoing Stress and Periodic Crises The parents in this secondary analysis expressed a great deal of stress in dealing with the frequent crises that arose related to their child's asthma. This has been noted by other researchers in the field (Eiser et al., 1991; Hobbs et al., 1985; Ray & Ritchie, 1993). This stress was related to several reasons that are cited in the literature: coping with illness-related demands (Meyerowitz & Kaplan, 1967; Ray & Ritchie, 1993), repeated hospitalizations due to exacerbations of the child's illness (Burke, et al., 1989; Ray & Ritchie, 1993), the unpredictability of the disease (Ferrari et al., 1983), and the struggle to balance family and care demands (Ray & Ritchie, 1993). Ray and Ritchie (1993) also report that as caregiving burden increased, parents in their study assessed their situation as more stressful and used few helpful coping strategies. Additional burdens that were reported by parents in their study as well as in this secondary analysis include: adhering to the necessary routine of care, the way in which the care precluded or limited family activities, and the physical and psychosocial aspects of care that were specific to the illness. Dealing with uncertainty was a theme that emerged from the parents in this study. This is consistent with other findings (Burkhart, 1993; Cohen, 1993, 1995; MacDonald, 1995). Parents in this secondary analysis described a process similar to that reported by MacDonald (1996) in her study of mothers' experiences of living with a child with asthma. The mothers in MacDonald's study reported a 'passage of time' from the first recognition that their child was not 78 well until a time when they felt confident in their ability to recognize symptoms. During this time, a diagnosis of asthma helped relieve some of the uncertainty with which they had been living and allowed them to develop an action plan to cope with this problem, that is, acquiring knowledge of asthma and taking measures to improve their child's health. The acquisition of knowledge was reported by mothers to be a necessary step before they could 'take charge' and become active participants in their child's asthma management. The major coping mechanism used by the parents in this present study was accessing information and resources which assisted them to confidently read their child's cues related to asthma and make appropriate asthma management decisions. Assist Family Members to Manage Their Feelings The parents in this secondary analysis described a wide range of emotions and feelings related to their child's asthma such as anxiety, guilt, fear, resentment, anger, impatience, exhaustion, frustration, helplessness, and desperation. Many of these feelings are also described in the literature (Austin, 1991; Betschart, 1988; Buchanan et al., 1979; Burkhart, 1993; Canam, 1987; Gibson, 1995; Jerrett, 1994; Johnston & Marder, 1994; MacDonald, 1996). In this secondary analysis, parents did not spend very much time describing their child's feelings and management. Canam (1987) reports that parents in her study did not talk about their own feelings, nor did they encourage their chidren to express their feelings. This would be an interesting area to explore in more detail in future research. Parents may need information about how to manage their child's feelings and how to encourage their expression. Although not frequently mentioned, some parents reported that it was useful for them to talk about their feelings with their spouses. The interview process of this study was very helpful for some couples to formally discuss the impact that their child's asthma had had on their 79 families as it was for the parents in Canam's study (1987). Nurses need to be aware of the large range of feelings and emotions that accompany parenting a child with asthma. Nurses should encourage parents to share these feeling and provide reassurance that these are normal reactions to having a child with a chronic illness. Nurses must also recognize parents who need additional support or counselling to deal with their feelings. Educate Others About the Child's Condition An overriding theme throughout the interviews in this study was that one must actually experience having a child with asthma to truly understand what it is like. Parents found it extremely frustrating and demoralizing to have others share their own misguided advice or opinions about how to manage asthma when they had not "lived it". Parents were unable to educate others about asthma until they themselves had been able to learn about asthma and its management. It is important that nurses play a role in the provision of education and resources to parents so that they are able to educate others about their child's illness. Parents may also need assistance in handling the advice and opinions of others and information on how to choose an appropriate babysitter. Information about how to educate others should be supplied to parents by nurses and other members of the health care team. Parents in this secondary analysis took an active role in educating their child to manage his or her own asthma. As mentioned earlier, as the children got older, it became easier for the parents as their children were able to cooperate with treatment and take some responsibility in the management of the asthma. Parents may need assistance from nurses about how to teach their children about asthma in an age-appropriate manner. For example, pre-school aged children are interested in learning about equipment and how to use it independently, so parents should begin to encourage this during this stage of growth and development (Ladebauche, 1997). Little 80 research has been done in this area to describe how to assist parents to teach their children and others about the impact of childhood chronic illness and the particular management of asthma. Establish a Support System The parents in this secondary analysis found it important to have support from those outside of the immediate family, especially those who understood the impact of asthma. They found it especially useful to talk about their feelings with other parents who also had a child with asthma. This has also been described by other researchers (Burkhart, 1993; Dunst et al., 1988; Gibson, 1995; Hayes, 1992; Lynam, 1987). Some parents, however, found it difficult to access other resources if they did not have extended family members living nearby because of the demands of caring for their child with asthma. Health professionals, especially physicians, also provided support for these parents (Canam, 1985). Ray and Ritchie (1993) reported that focusing on strengthening relationships was an important coping strategy for parents of children with chronic illnesses. Clements et al. (1990), found that emotional and physical support is necessary to achieve family equilibrium. These parents found it useful to talk about their feelings with other parents who also had a child with asthma. In a study by Gibson (1995), an important interpersonal factor that influenced the process of empowerment for mothers when they had a child with a chronic illness, was the social support that they received from their spouse, family, friends, health care professionals, and other mothers in similar situations. The facilitation of, or referral to parent support groups or individual parents with similar experience are ways that nurses can assist parents to find support for those parents who express an interest in this kind of help. The financial implications of having a child with asthma was mentioned by only a few parents, but is an area that warrants further investigation. For parents with extended health 81 benefits, the costs for medications and equipment were not an issue, but for those parents who did not have adequate coverage, the costs became prohibitive, for example, when making a decision about whether or not to buy an air compressor for the administration of medications. One couple was unable to afford a compressor and therefore needed to access the emergency department at the hospital on a regular basis for treatment. Limitations of the Study Limitations of this study are related to those of secondary analysis. In particular, the quality of the original data cannot be assumed and must be accepted as it exists (Babbie, 1992; Woods, 1988). In addition, any biases inherent in the original data may be intensified or exaggerated in secondary analysis (Thorne, 1994). Since I was not part of the original data collection, certain features of the data set may not have been as obvious to me, such as subtle nuances that are not conveyed in the written transcript. The original researcher was available, however, for consultation about the original data. It is important that the methods used in data collection for the original study are known so that the quality of the secondary data can be evaluated (Babbie, 1992; Stewart & Kamins, 1993). The methods employed in data collected were described in Chapter 3 and are believed to be appropriate for the question asked in this secondary analysis. The sample chosen for this secondary analysis was largely from a white, middle class population, although there was a range from unemployed to upper-middle class. Only one set of parents, from European descent, spoke English as a second language. Although there is a large population of Asian, Native, and East Indian people in the Greater Vancouver area, none volunteered or agreed to participate in the larger study from which the sample for this secondary 82 analysis was taken. This is a segment of the population that may have additional issues that were not experienced by the parents in this study. Another limitation of this study is that the original interviews were not based on the Canam Adaptive Task Framework and there were a limited number of parents that met the criteria for this research study. As a result, not all categories in the framework reached saturation in this secondary analysis. The findings of this study are limited to the voices of the 10 families whose data was selected for analysis. The summaries and applicabilities of the data segments to the categories of the ATF are also limited to the parents in the selected 10 families. The ATF, however, did accommodate all of the data that was shared by the parents in this study. Although there were limitations to this study due to the use of secondary analysis, this study was able to add validity to the Canam ATF and has further articulated the experience of the family when they have a pre-school aged child with asthma. Summary The findings of this secondary analysis have been discussed in relationship to the Canam Adaptive Task Framework and the literature. The Canam ATF is a useful organizing framework that can be used to assess and intervene with parents of children with a chronic illness. As evidenced by the findings and discussion of this study, parents of children with asthma need to accomplish each task in order to adapt to caring for their child with asthma. Although many of the findings are specific to the management of asthma, the overriding principles may be applied to children with other chronic illnesses. The role of the nurse is to assess whether or not parents are accomplishing each task and, if not, to assist them to acquire the necessary knowledge, skills, or resources they need to enable them to achieve the task. A summary of this research study is presented in Chapter 6 along with conclusions and recommendations. 83 CHAPTER 6: SUMMARY, CONCLUSIONS, AND RECOMMENDATIONS This chapter presents a summary of this secondary analysis followed by the major conclusions and recommendations for practice and research. Summary The prevalence of asthma in the pediatric population makes it an important area of study. Asthma presents challenges in day-to-day family management that are similar to other chronic childhood diseases but also ones that are unique to the child with asthma. The Canam Adaptive Task Framework identifies and describes the common adaptive tasks facing parents in managing their child's chronic condition and is useful in guiding assessment and interventions with these parents. The purpose of this study was to identify the adaptive tasks from the Canam ATF that were expressed by parents of pre-school aged children with asthma in part of a previously existing qualitative data set. The research question for this study was: Does the Canam ATF fully accommodate the expressions of parenting the pre-school age child with asthma using an existing set of interview data? Qualitative data for this study were originally collected as part of a larger study entitled, Evaluation of the Family Asthma Education Program (FAEP). The purposes of the original study were to investigate how the FAEP affected the coping strategies of parents with children of asthma and to explore parents' own perceptions of living with childhood asthma in the family. Ten families that participated in the original study met the criteria for this secondary analysis as outlined in Chapter 3, representing a population focus on families with pre-school aged children. The verbatim interview transcripts from these families were analyzed by latent content analysis techniques, using the Canam ATF as the conceptual framework for coding the data. Reliabilty was tested by having content experts independently code selected transcripts and data. 84 The findings in this study were categorized and discussed according to the Canam ATF and the literature. The eight concepts about parenting suggested by Canam were evident from the expressions of parenting discovered in the sub-set of data used for this secondary analysis: (a) accept the child's condition, (b) manage the child's condition on a day-to-day basis, (c) meet the child's normal developmental needs, (d) meet the developmental needs of other family members, (e) cope with ongoing stress and periodic crises, (f) assist family members to manage their feelings, (g) educate others about the child's condition, and (h) establish a support system. The data coded are remarkable in the asthma-specific nature of the examplars for each category, yet the nature of parental adaptation to asthma in a pre-school aged child is well illustrated using the combination of the Canam ATF and the existing data-set used. It is significant that all of the adaptive tasks were accounted for by the findings and that there were no new categories identified. Therefore, it is concluded that the Canam ATF fully accommodates the expressions of parenting the pre-school aged child with asthma. Although many of the findings are specific to the management of asthma, the overriding principles may be applied to chidren with other chronic illnesses. The role of the nurse is to assess whether or not parents are accomplishing each task, and if not, to assist them to acquire the necessary knowledge, skills, or resources they need to enable them to achieve the task. Conclusions The following conclusions are made based on the findings of this research: 1. Many parents have difficulty in accessing information about childhood asthma. 2. Parents need information about asthma, its management, and its impact on the family in order to manage their child's asthma on a day-to-day basis, including how to make appropriate clinical decisions. 85 3. Parents need information about the normal stages of growth and development of pre-school aged children and how this is impacted by asthma. 4. Parenting a child with asthma is stressful. 5. Parenting the child with asthma becomes easier as the child gets older and is able to assume some responsibility for his or her own asthma management. 6. One must have a child with asthma in order to truly understand the experience of parenting a child with asthma. 7. The Canam Adaptive Task Framework fully accommodates the expressions of parenting a pre-school aged child with asthma. Recommendations for Practice The specifics of applicability of the findings to practice have been previously presented throughout the discussion in Chapter 5. The following is a summary of the major recommendations for practice: 1. Nurses must take an active role within the health care team to provide both formal and informal education programs and resources for parents of pre-school aged children with asthma about the disease, its management, and its impact on the child's growth and development. 2. Efforts must be made to ensure that information and education are not only available but accessible to all families who have a child with asthma. 3. Asthma education programs such as the Family Asthma Education Program need to be continued, enhanced, and expanded. Other media should be explored such as the Internet, self-learning programs for the computer, or information from the local lung association. 86 4. Health professionals need up-to-date and accurate information about asthma and its management. Ongoing professional education such as conferences, workshops, and inservices are essential. 5. Parents of children with asthma find their best support from other parents who also have a child with asthma. It is recommended that nurses facilitate or refer parents to supportive individuals and groups of parents. 6. Health professionals need appropriate education about normal growth and development of children. 7. Health professionals need appropriate education about childhood chronic illness and how that impacts the family. Recommendations for Research The following recommendations are made for nursing research: 1. A further study be undertaken in which a primary data set is generated to more fully explore the Canam ATF. 2. Further testing of the Canam ATF, including it's direction for intervention studies, be undertaken. 3. Further research be undertaken with children in other specific age populations to examine the nature of parenting these children with asthma. 4. Additional research should be conducted to more fully explore the differences between mothers and fathers in parenting a child with asthma. 5. Further research to examine the experience of childhood asthma from the perspective of the child, the siblings, and the family as a whole. 87 6. Further research to examine the experience of parents from a variety of cultures when they have a pre-school aged child with asthma. Significance of the Study Nurses may not have a full appreciation of the adaptive tasks that parents face when they have a child with asthma. As a result, these parents may not be receiving the nursing care that they require to help them meet these adaptive tasks. Although this study is not considered to be conclusive due to its small sample, it has provided an opportunity to examine the usefulness of the Canam ATF for educating parents as well as nurses. The ATF may be used by nurses to assist families to meet the tasks required of them when their child has been diagnosed with asthma. This study has also been able to articulate the needs of parents when they have a child with asthma. REFERENCES 88 American Academy of Pediatrics, Provisional Committee on Quality Improvement: Practice Parameter. (1994). The office managment of acute exacerbations of asthma in children. Pediatrics, 93, 119-126. Anderson, J.M. (1981). The social construction of illness experience: Families with a chronically-ill child. Journal of Advanced Nursing, 6, 427-434. Anderson, J.M., & Elfert, H. (1989). Managing chronic illness in the family: Women as caretakers. Journal of Advanced Nursing, 14, 735-743. Austin, J. (1991). Family adaptation to a child's chronic illness. Annual Review of Nursing Research, 9, 103-120. Babarin, O.A., Hughes, D., & Chesler, M.A. (1985). Stress, coping, and marital functioning among parents of children with cancer. Journal of Marriage and the Family, 48, 473-480. Babbie, E.R. (1992). The practice of social research (6th ed.). Belmont, CA: Wadsworth. Bechler-Karsch, A. (1994). Assessment and management of status asthmaticus. Pediatric Nursing, 20, 217-223. Betz, D., Hunsberger, M., & Wright, S. (1994). Nursing care of children (2nd ed.). Toronto, Canada: Saunders. Betschart, J. (1988). Parents' understanding of and guilt over their children's blood glucose control. Diabetes Educator, 13, 398-401. Bloomberg, G.R., & Strunk, R.C. (1992). Crisis in asthma care. Pediatric Clinics of North America, 39, 1225-1241. Brink, P.J., & Wood, M.J. (1989). Descriptive designs. In P.J. Brink & M.J. Wood (Eds.), Advanced design in nursing research (pp. 123-140). Newbury Park, CA: Sage. Buchanan, D.C., LaBarbera, C.J., Roelofs, R., & Olsen, W. (1979). Reactions of families to children with Duchenne's muscular dystrophy. General Hospital Psychiatry, 1, 262-268. Burke, S.O., Costello, E.A., & Handley-Derry, M.H. (1989). Maternal stress and repeated hospitalizations of children who are physically disabled. Children's Health Care, 18(2), 82-90. Burkhart, P.V. (1993). Health perceptions of mothers of children with chronic conditions. Maternal-Child Nursing Journal, 21, 122-129. 89 Cadman, D., Rosenbaum, P., Boyle, M., & Offord, D.R. (1991). Children with chronic illness: Family and parent demographic characteristics and psychosocial adjustment. Pediatrics, 87, 884-889. Canadian Institute of Child Health. (1994). The health of Canada's children: A statistical profile (2nd ed.). Ottawa, Canada: Author. Canam, C. (1985). Parental coping with a child's epilepsy: Final report. UBC Social Science and Humanities Grant No. H84-214. Vancouver, Canada: University of British Columbia. Canam, C. (1986). Talking about cystic fibrosis within the family: What parents need to know. Issues in Comprehensive Pediatric Nursing, 9, 167-178. Canam, C. (1987). Coping with feelings: Chronically ill children and their families. Nursing Papers, 9, 9-21. Canam, C. (1993). Common adaptive tasks facing parents of children with chronic conditions. Journal of Advanced Nursing, 18, 46-53. Capen, C , Dedlow, E., Robillard, R., Fuller, B., & Fuller, C. (1994). The team approach to pediatric asthma education. Pediatric Nursing, 20, 231-237. Catanzaro, M. (1988). Using qualitative analytical techniques. InN.F. Woods & M. Catanzaro (Eds.), Nursing research : Theory and practice (pp. 437-456). St. Louis, MO: Mosby. Chesler, M., & Yoak, M. (1984). Self-help groups for parents of children with cancer. In H. Roback (Ed.), Helping patients and their families cope with medical problems: A guide to therapeutic group work in clinical setting (pp. 481-526). San Francisco: Jossey-Bass. Clements, D.B., Copeland, L.G., & Loftus, M. (1990). Critical times for families with a chronically ill child. Pediatric Nursing, 16, 157-161, 224. Cohen, M.H. (1993). The unknown and the unknowable—Managing sustained uncertainty. Western Journal of Nursing Research, 75(1), 77-96. Cohen, M.H. (1995). The triggers of heightened parental uncertainty in chronic, life-threatening childhood illness. Qualitative Health Research, 5(1), 63-77. Cohen, M.Z., & Ornery, A. (1994). Schools of phenomenology: Implications for research. In J.M. Morse (Ed.), Critical issues in qualitative research methods (pp. 136-156). Thousand Oaks, CA: Sage. 90 Copeland, L.G. & Clements, D.B. (1993). Parental perceptions and support strategies in caring for a child with a chronic condition. Issues in Comprehensive Pediatric Nursing, 16, 109-121. Deatrick, J.A., Knafl, K.A., & Walsh, M. (1988). The process of parenting a child with a disability: Normalization through accommodations. Journal of Advanced Nursing, 13, 15-21. Donnelly, E. (1994). Parents of children with asthma: An examination of family hardiness, family stressors, and family functioning. Journal of Pediatric Nursing, 9, 398-408. Dunst, C.J., Trivett, C M . , Davis, M., & Cornwall, J. (1988). Enabling and empowering families of children with health impairments. Children's Health Care, 17, 71-81. Eiser, C , Eiser, J.R., Town, C , & Tripp, J.H. (1991). Discipline strategies and parental perceptions of preschool children with asthma. British Journal of Medical Psychology, 64, 45-63. Eiser, C , & Havermans, T. (1992). Mothers' and fathers' coping with chronic childhood disease. Pyschology and Health, 7, 249-257. Erikson, E.H. (1959). Identity and the life cycle. Pyschological Issues, 1, 1-171. Ferrari, M., Matthew, W.S., & Barbaras, G. (1983). The family and the child with epilepsy. Family Process, 22, 53-59. Field, P. A., & Morse, J.M. (1985). Nursing Research: The application of qualitative approaches. Rockville, MD: Aspen. Frey, K.S., Greenberg, M.T., & Fewell, R.R. (1989). Stress and coping among parents of handicapped children: a multi-dimensional approach. American Journal of Mental Retardation, 94, 240-249. Friedrich, W.N., Cohen, D.S., & Wilturner, L.T. (1988). Specific beliefs as moderator variables in maternal coping with mental retardation. Children's Health Care, 17, 40-44. Gibson, C.H. (1995). The process of empowerment in mothers of chronically ill children. Journal of Advanced Nursing, 21, 1201-1210. Hayes, V.E. (1991). Parenting style and families' management of childhood asthma. Paper presented at the Second International Family Nursing Conference, Portland, OR. Hayes, V.E. (1992). The impact of a child's chronic illness on the family system. Unpublished doctoral dissertation, University of California, San Francisco. 91 Hayes, V.E., & Knox, J.E. (1984). The experience of stress in parents of children hospitalized with long-term disabilities. Journal of Advanced Nursing, 9, 333-341. Hayes, V.E., Mitchell, C M . , Ablog, K.D., & Hopkins, H. (1983). Evaluation of the family asthma education program. Unpublished research grant application, University of British Columbia, Vancouver, Canada: British Columbia Health Care Research Foundation. Hobbs, N., Perrin, J.M., & Ireys, H.T. (1985). Effects of chronic illness on children, families, and communities. In N. Hobbs, J.M. Perrin, & H.T. Ireys (Eds.), Chronically ill children and their familes (pp. 62-101). London: Jossey-Bass. Holsti, O.R. (1969). Content analysis for the social sciences and humanities. Reading, MA: Addison-Wesley. Horner, M., Rawlins, P., & Giles, K. (1987). How parents of children with chronic conditions perceive their own needs. Maternal Child Nursing, 12, 40-43. Jerrett, M.D. (1994). Parents' experience of coming to know the care of a chronically ill child. Journal of Advanced Nursing, 19, 1050-1056. Johnston, C.E., & Marder, L.R. (1994). Parenting the child with a chronic condition: An emotional experience. Pediatric Nursing, 20, 611-614. Jost, K. (1996). Nursing standards for child development. MCN, 21, 67-71. Knafl, K , Ayres, L., Gallo, A., Zoeller, L.H., & Breitmayer, B.J. (1995). Learning from stories: Parents' accounts of the pathway to diagnosis. Pediatric Nursing, 21, 411-415. Knafl, K., Breitmayer, B., Gallo, A., & Zoeller, L. (1996). Family response to childhood chronic illness: Description of management styles. Journal of Pediatric Nursing, 11, 315-326. Knafl, K.A., & Deatrick, J.A. (1986). How families manage chronic conditions: An analysis of the concept of normalization. Research in Nursing and Health, 9, 215-222. Krahn, M.D., Berka, C , Langlois, P., & Detsky, A.S. (1996). Direct and indirect costs of asthma in Canada, 1990. Canadian Medical Association Journal, 154, 821-831. Krulik, T. (1982). Helping parents of children with cancer during the midstage of illness. Cancer Nursing, 5, 441-445. Ladebauche, P. (1997). Managing asthma: A growth and development approach. Pediatric Nursing, 23, 37-44. Lynam, M.J. (1987). The parent network in pediatric oncology: Supportive or not? Cancer Nursing, 10, 180-194. 92 MacDonald, H. (1995). Chronic renal disease: The mother's experience. Pediatric Nursing, 21, 503-507, 574. MacDonald, H. (1996). "Mastering uncertainty:" Mothering the child with asthma. Journal of Pediatric Nursing, 22, 55-59. MacVicar, M.G., & Archbold, P. (1976). A framework for family assessment in chronic illness. Nursing Forum, 15, 180-194. Marshall, C , & Rossman, G.B. (1989). Designing qualitative research. Newbury Park, CA: Sage. Marshall, C , & Rossman, G.B. (1995). Designing qualitative research (2nd ed.). Thousand Oaks, CA: Sage. McCarthy, S.M., & Gallo, A.G. (1992). A case illustration of family management style. Journal of Pediatric Nursing, 7,395-402. McCubbin, M. (1984). Nursing assessment of parental coping with cystic fibrosis. Western Journal of Nursing Research, 6, 407-415. McCubbin, H.I., Joy, C.B., Cauble, A.E.,Comeau, J.K., Patterson, J.M., & Needle, R.H. (1980). Family stress and coping: a decade review. Journal of Marriage and the Family, 42, 855-871. McCubbin, H.I., Nevin, R.S., Cauble, A.E., Larsen, A., Comeau, J.K., & Patterson, J.M. (1982). Family coping with chronic illness: The case of cerebral palsy. In H.I. McCubbin, A.E. Cauble, & Patterson, J.M. (Eds.), Family stress, coping, and social support. Springfield, IL: Charles C. Thomas. McCubbin, H.I., & Patterson, J.M. (1983). The family stress process: the double ABCX model of adjustment and adaptation. In H.I. McCubbin, M.B. Sussman, & J.M. Patterson (Eds.), Social stress and the family: Advancements and developments in family stress theory and research (pp. 7-37). New York: Haworth. Mealey, A., Richardson, H., & Dimoco, G. (1989). Family stress management. In P.J. Bomar (Ed.), Nurses and family health promotion (pp. 179-196). Baltimore: Williams & Wilkins. Meyerowitz, J.H., & Kaplan, H.B. (1967). Familial responses to stress: The case of cystic fibrosis. Social Science and Medicine, 1, 249-266. Miles, M.B., & Huberman, A.M. (1994). An expanded sourcebook: Qualitative data analysis (2nd ed.). Thousand Oaks, CA: Sage. 93 Morse, J.M., & Field, P.A. (1995). Qualitative research methods for health professionals (2nd ed.). Thousand Oaks, CA: Sage. Murphy, S., & Kelly, W. (1993). Asthma, inflammation, and airway hyperresponsiveness in children. Current Opinions in Pediatrics, 5, 255-265. Newacheck, P.W., Stoddard, J.J., & McManus, M. (1993). Ethnocultural variations in the prevalence and impact of childhood chronic conditions. Pediatrics, 91, 1031-1039. Newacheck, P.W. & Taylor, W.R. (1992). Childhood chronic illness: Prevalence, severity and impact. American Journal of Public Health, 82, 364-371. Palfrey, J.S., Walker, D.K., Haynie, M., Singer, J.D., Porter, S., Bushey, B. & Cooperman, P. (1991). Technology's children: Report of a statewide census of children dependent on medical supports. Pediatrics, 87, 611-618. Perrin, E.C., Newacheck, P., Pless, I.B., Drotar, D., Gortmaker, S.L., Leventhal, J., Perrin, J.M., Stein, R.E.K., Walker, K.D., & Weitzman, M. (1993). Issues involved in the definition and classification of chronic health conditions. Pediatrics, 91, 787-793. Piaget, J. (1952). The origins of intelligence in children (M. Cook, Trans). New York: International Universities Press. (Original work published 1948) Polit, D.F., & Hungler, B.P. (1991). Nursing research: Principles and methods (4th ed.). Philadelphia, PA: J.B. Lippincott. Power, P.W. (1985). Family coping with behaviors in chronic illness: A rehabilitation perspective. Rehabilitation Literature, 46, 78-82. Rachelefsky, G.S. (1995). Asthma update: New approaches and partnerships. Journal of Pediatric Health Care, 9, 12-21. Ray, L.D., & Ritchie, J.A. (1993). Caring for chronically ill children at home: Factors that influence parents' coping. Journal of Pediatric Nursing, 8, 217-225. Revell, G.M., & Stephen Liptak, G. (1991). Understanding the child with special health care needs: A developmental perspective. Journal of Pediatric Nursing, 6, 258-268. Ryan-Wenger, N.M., & Walsh, M. (1994). Children's perspectives on coping with asthma. Pediatric Nursing, 20, 224-228. Sabbeth, B.F., & Leventhal, J.M. (1984). Marital adjustment to chronic childhood illness: A critique of the literature. Pediatrics, 73, 762-768. 94 Sandelowski, M. (1986). The problem of rigor in qualitative research. Advances in Nursing Science, 8(3), 27-37. Sarason, I.G., Johnson, S.R., & Siegel, J.M. (1978). Assessing the impact of life changes: Development of the Life Experiences Survey. Journal of Consulting and Clinical Psychology, 45, 932-946. Shelton, T. L., Jeppson, E. S., & Johnson, B. (1989). Family-centered care for children with special health care needs. Washington, DC: Association for the Care of Children's Health. Shelton, T. L., Jeppson, E. S., & Johnson, B. (1995). Excerpts from family-centered care for children needing specialized and developmental services. Pediatric Nursing, 21, 362-364. Statistics Canada. (1991). Causes of death. Ottawa, Canada: Author. Stein, R.E.K., & Jessop, D.I. (1989). What diagnosis does not tell: The case for a noncategorical approach to chronic illness in childhood. Social Science and Medicine, 29, 769-778. Stewart, D.W., & Kamins, M.A. (1993). Secondary research: Information sources and methods (2nd ed.). Newbury Park, CA: Sage. Stewart, M.J., Ritchie, J.A., McGrath, P., Thompson, D., & Bruce, B. (1994). Mothers of children with chronic conditions: Supportive and stressful interactions with partners and professionals regarding caregiving burdens. Canadian Journal of Nursing Research, 26(4), 61-82. Thome, S. (1994). Secondary analysis in qualitative research: Issues and implications. In J.M. Morse (Ed.), Critical issues in qualitative research methods (pp. 263-279). Thousand Oaks, CA: Sage. Townsend, M., Feeny, D.H., Guyatt, G.H., Furlong, W.J., Seip, A.E., & Dolovich, J. (1991). Evaluation of the burden of illness for pediatric asthmatic patients and their families. Annals of Allergy, 67, 403-408. Turner-Henson, A., Holaday, B., & Swan, J.H. (1992). When parenting becomes caregiving: Caring for the chronically ill child. Family Community Health, 15(2), 19-30. Venters, M. (1981). Familial coping with chronic and severe childhood illness: the case of cystic fibrosis. Social Science and Medicine, 15A, 289-297. Wilson, H.S. (1985). Research in Nursing. Reading, MA: Addison-Wesley. Wong, D.L. (1995). Whaley & Wong's Nursing care of infants and children (5th ed.). St. Louis, MO: Mosby. 95 Woods, N.F. (1988). Using existing data sources: Primary and secondary analysis. In N.F. Woods & M. Catanzaro (Eds.), Nursing research: Theory and practice (pp. 334-347). St Louis, MO: Mosby. 96 Appendix A: Letter to Physicians THE UNIVERSITY OF BRITISH COLUMBIA 206-2211 WesbrookMall VANCOUVER, B.C. V6T 1W5 THE SCHOOL OF NURSING I am writing to request your cooperation in a research project. I need to contact families who have young children with asthma, and wonder if I might do so through accessing your patient records? The research is a project which is designed to evaluate the Family Asthma Education Program. You may know that this 4-session program is offered to parents and preschool and schoolage children with asthma by the British Columbia Nurses' Respiratory Society within the British Columbia Lung Association. The project is funded by the British Columbia Health Care Research Foundation, and will run over about nine months. Your cooperation is required in accessing families who may be interested in taking the course, as well as suitable control group families to match with those who are taking the course. Families must have at least one child with asthma and are to be matched for age of the ill child, length of time since diagnosis, and number of parents in the family. All the usual ethical considerations have been respected, and approval has been obtained from the U.B.C. Screening Committee for Research and Other Studies Involving Human Subjects. Any other details you may require are available by contacting me at my office (228-7477). My research assistant, Margot Dyer, or I will contact you by phone about a week after you receive this letter to obtain your decision. Information about the families in your practice may be controlled in any way you choose; we need only know that there is an asthmatic child in the family and his/her current age. Imposition or work for your staff will be kept to an absolute minimum, but again, the exact method of our obtaining the information is left entirely up to you if you prefer. Thank you for consideration of my request. I welcome your cooperation in this timely and important evaluation project. Sincerely, Virginia E. Hayes Assistant Professor 97 Appendix B: Introduction Letter to Parents THE UNIVERSITY OF BRITISH COLUMBIA 206-2211 Wesbrook Mall VANCOUVER, B.C. V6T 1W5 THE SCHOOL OF NURSING Dear A group of nurses from the B.C. Lung Association are interested in studying families who have a child with asthma. We are writing to request your participation in the research. This letter will tell you about the project, and in about a week, when you have had time to think this over, we will telephone you for your decision about whether or not you wish to participate. The purpose of the project is to examine the things that help you cope with your child's asthma over the long-term. A researcher (a nurse) would talk with you three times during a one year period: shortly after you agree to participate, 4-6 weeks later, and again about 11 months later. (We plan to continue our contact with you once a year for two more years, but this will depend on obtaining funds to continue the research after one year.) You will be involved in two ways: some paper-and-pencil forms and an interview. Both will be at your convenience and at your home (or place of choice). The forms will take about an hour and are designed to evaluate your knowledge about asthma, your general views about health care, your amount of stress or worry, how seriously ill you estimate your asthmatic child to be, and the ways you cope with his or her asthma. The interview will be tape-recorded and also take about one hour. We would like to know something of how the asthma'affects your family from your point of view. The tapes are typed (transcribed) onto paper then the tape erased. Your personal identity does not appear on any of the data, which will be for the researchers' use only, and securely locked up when not being used. Individual responses are destroyed when the study is over. You may refuse to answer any questions at any time. Other parents who have cooperated in similar research told us that it is actually quite helpful to them to be involved in the study, and that they enjoy their participation. Remember that your responses are completely private, confidential and anonymous. Your family's medical care will not be affected in any way, whether you decide to participate or not. We look forward to talking with you. Yours sincerely, Jinny Hayes Assistant Professor School of Nursing, U.B.C. 228-7477 98 Appendix C CONSENT FORM HAVING CHILDHOOD ASTHMA IN THE FAMILY The purpose of this project is to estimate the impact of having a child with asthma in the family. There will be five brief paper-and-pencil tests which take about one hour, and an audiotaped, one-hour interview in your home. These will be repeated one or two times over one year, and may be repeated again at two and three years (if funding permits). You may ask any questions you wish and withdraw from the study at any time, and may refuse to answer any of the questions. You or your children will not be identified in any way. I consent to participate in the project as explained. I understand my rights as an individual will be protected and that I may withdraw at any time. I understand that my decision to participate or not participate in this research will not affect my child's medical care in any way. Mother Father Date Address Thank you for your time and effort. Jinny Hayes, R.N., M.N. Assistant Professor U.B.C. School of Nursing for B.C. Nurses Respiratory Society 

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