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Parents’ perceptions of their experiences of caring for an infant or toddler under three years of age… Hatton, Doreen Lillwall 1992

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PARENTS’ PERCEPTIONS OF THEIR EXPERIENCES OF CARING FOR AN INFANT OR TODDLER UNDER THREE YEARS OF AGE WITH INSULIN DEPENDENT DIABETES MELLITUS  by DOREEN LILLWALL HATTON B.S.N., The University of British Columbia, 1987  A THESIS SUBMITTED IN PARTIAL FULFILMENT 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  October 1992 © Doreen Liliwall Hatton, 1992  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.  I  Department of  The University of British Columbia Vancouver, Canada Date  DE-6 (2/88)  LL, 4 II  Dc4g€&Q.  Iq 9  ir)  Parents’ Perceptions of Caring for Infant Diabetes 11  Abstract  Parent’s Perceptions of the Experiences of Caring for an Infant or Toddler under Three years with Insulin Dependent Diabetes Mellitus  The purpose of this phenomenological study was to explore and describe the lived experience of parents who were caring for a child under three years with diabetes, and to gain insight into this experience from the parents’ perspective. The objectives of the study were to gain knowledge and understanding of the parents’ needs and concerns related to caring for their child so that appropriate support and services can be planned, developed and implemented for this unique and growing population over the long-term. A purposive sample of eight, two-parent families with diabetic infants or toddlers were selected according to the characteristics and knowledge each possessed. Data were collected through a series of fourteen indepth, minimally-structured, audiotaped interviews conducted over a five-month period. Tapes were transcribed verbatim and the data subjected to phenomenological analysis. Constant comparative analysis was employed throughout the data collection process to permit analyzed material to guide construction of the parents’ accounts. The parents described three distinct phases of their experience: the diagnosis of diabetes and the child’s admission to hospital, adjusting to caring for the young child at home, and incorporating the child’s diabetic management regimen into family life over the long-term. Each phase was linked to a timeframe and organized into major conceptual categories and themes constructed from the parents’ accounts. Findings revealed that parents experience inordinate amounts of stress that appear to be exacerbated by the child’s young age, the all-pervading nature of diabetes, the lability of the child’s condition, and the demands and fears associated with the complex daily management regimen. Parents  Parents’ Perceptions of Caring for Infant Diabetes ill  talked at length about their emotional reactions to these multiple stressors, and also described the coping strategies they used to handle their situation throughout the experience. While some conclusions of this study confirmed findings of other studies related to caring for a child with diabetes, other conclusions revealed entirely new findings. Problems associated with multiple losses for parents and child, significant findings specific to developmental issues resulting from the young age of the child at diagnosis, the major role played by fathers in sharing responsibility for care of these children, and the frustrations of coping with the labile and unpredictable nature of the young child’s diabetes, appeared particularly relevant to this unique population. Implications for nursing practice include the provision of educational and respite care services, the provision of empathy and support, and empowerment of parents by assisting families with adaptation and stress reduction. Implications for nursing and technological research are in the realm of studies to further the understanding of the needs of these young children and their parents, and in the development of non-invasive procedures to reduce the complexity of the daily management regimen.  Parents’ Perceptions of Caring for Infant Diabetes iv TABLE OF CONTENTS  Abstract  11  TABLE OF CONTENTS  lv  FIGURES AND TABLES  XII  ACKNOWLEDGEMENTS  Xlii  DEDICATION  xiv  CHAPTER ONE Introduction  1  The Rationale for Study  1  Background to the Problem  3  Children with Diabetes  5  Conceptual Framework  6  The Problem Statement  10  Purpose of the Study Research Questions Definitions of Terms  11  Introduction to the Methodology Assumptions Limitations of the Study  Summary CHAPTER TWO Review of Selected Literature. Introduction The Impact of a Child’s Long-Term Chronic Illness on the Child, the Parents and Family  17  Parents’ Perceptions of Caring for Infant Diabetes V  The Impact of Diabetes in Children on the Parents and Family  19  Diabetes in Infants and Toddlers under Three Years: Unique Problems and Needs  25  Summary  31  CHAPTER THREE Methodology  33  Introduction  33  Selection of Participants  33  Criteria for Selection  34  Selection Procedure  35  Characteristics of the Participants  38  Young Children with Diabetes  38  Siblings  40  Family History of Diabetes  40  Procedures for Protecting Human Rights  41  Researcher’s Role  42  Data Collection Procedure  42  Analysis of Data  50  Stage I Analysis  51  Stage II Analysis  51  Stage Ill Analysis  51  Auditability and Confirmability  52  Summary  53  CHAPTER FOUR Findings: Parents’ Perceptions of Their Experiences Introduction Phases of the Experience  55 55 56  Parents’ Perceptions of Caring for Infant Diabetes vi Conceptual Categories Significant to Each Phase of the Experience  58  Capturing Emotions  59  Phase One: The Diagnosis of Diabetes Perceived Stressors  60 61  Receiving the diagnosis  61  The hospital experience  66  Learning the diabetic management regimen  67  Buildup of stressors  71  Reactions and Emotional Responses to Perceived Stressors  73  Functioning like robots  73  Denial  74  Feeling trapped  75  Blaming  77  Guilt and anger  78  Coping Strategies Employed by Parents to Manage the Situation  81  Being assertive  81  Learning to manage the young child’s condition  83  Seeking support  88  Understanding and describing the child’s condition  90  Looking for a cause  91  Considering alternatives  93  Clinging to hope  95  Summary  96  Parents’ Perceptions of Caring for Infant Diabetes vii Phase Two: Caring for the Young Child at Home Perceived Stressors  97 97  Taking the infant or toddler home  98  Changes in lifestyle  99  Perceived losses  102  Unpredictable blood sugar levels  106  Hyperglycemia and hypoglycemia  109  Confrontations over food  112  Giving injections  114  Taking blood tests  116  Child’s development  117  Reactions and Emotional Responses to Perceived Stressors  120  Emotional responses  120  Changing roles, relationships, conflicts and friction  123  Coping Strategies Employed by Parents to Manage the Situation  126  Being methodical and vigilant  126  Making decisions  134  Sharing responsibility  137  Interacting with health care professionals  140  Trusting others  142  Identifying needs: reducing stress  144  Maintaining hope  150  Summary Phase Three: Adapting over the Long Term  152 153  Parents’ Perceptions of Caring for Infant Diabetes viii Perceived Stressors Issues related to insulin injections  156  Conflicts over diabetic control  160  Issues related to food  160  Behavioral issues  163  Anticipatory worry  164  Decisions to have other children  167  Reactions and Emotional Responses to Perceived Stressors Recurring and sustained emotional responses Coping Strategies Employed by Parents to Manage the Situation  170 171 173  Taking charge  174  Being flexible  176  Maintaining vigilance  178  Trusting others  180  Building supports  183  Growing as a family  184  Managing stress and worry  186  Sharing; talking (hidden benefit of study)  187  Comparing with alternatives  189  Accepting the realities of diabetes  191  Summary Summary CI{APTER FIVE Discussion of Findings Introduction  156  192 193 196 196  Parents’ Perceptions of Caring for Infant Diabetes ix Insulin Dependent Diabetes Mellitus in Infants and Toddlers  197  Three Distinct Phases of the Parents’ Experience  200  Phase One: The Diagnosis of Diabetes  203  Perceived Stressors and Parents’ Responses to the Situation  203  Receiving the diagnosis  204  The hospital experience  206  Responses to the diagnosis  208  Buildup of stressors  209  Coping Strategies Employed by Parents to Manage the Situation  210  Understanding and describing the child’s condition  214  Feeling trapped  216  Phase Two: Caring for the Young Child at Home Perceived Stressors and Parents’ Responses to the Situation  217 217  Taking the infant or toddler home  218  Perceived losses  221  Unpredictable blood sugar levels in a young child  223  Fear of hypoglycemia  225  Confrontations over food  226  Giving injections  227  Blood sugar testing  227  Child’s development  229  Roles, relationships, conflicts and friction  230  Coping Strategies Employed by Parents to Manage the Situation Managing the daily regimen  233 233  Parents’ Perceptions of Caring for Infant Diabetes x Making decisions  235  Interacting with health care professionals  236  Identifying needs: reducing stress  240  Maintaining hope  241  Phase Three: Adapting over the Long Term  242  Perceived Stressors and Parents’ Responses to the Situation  .  .  .  .  244  Developmental issues  244  Issues related to insulin injections  247  Coping Strategies Employed by Parents to Manage the Situation  248  Managing stress and worry  248  Sharing; talking (hidden benefit of study)  249  Teaching and trusting others  251  Building supports  252  Growing as a family  252  Anticipatory worry  253  Decisions to have other children  254  Summary  256  CHAPTER SIX Summary, Conclusions and Implications for Nursing  259  Summary  259  Significant Conclusions from Findings  262  Conclusions and Implications for Nursing Practice  263  Implications for Nursing Research  269  Implications for Nursing and Technical Research References  .  273 275  Parents’ Perceptions of Caring for Infant Diabetes xi APPENDIX A  281  APPENDIX B  285  APPENDIX C  288  Parents’ Perceptions of Caring for Infant Diabetes xli  FIGURES AND TABLES  Figure 1: Health Care System: Internal Structure (Kleinman) Table 1: Family Demographics  9 39  Parents’ Perceptions of Caring for Infant Diabetes xlii  ACKNOWLEDGEMENTS  I wish to extend sincere thanks and appreciation to the members of my thesis committee, Professors Connie Canam and Sally Thorne, for their enthusiasm, support and encouragement, their expertise in guiding me through the research process, and their valuable suggestions for clarifying and improving the text. Also, my gratitude to Professor Anne Marie Hughes for providing significant feedback on the final manuscript. These three professors not only encouraged me during this research project, but also profoundly influenced my thinking during other academic phases of the Master’s Program. I also extend thanks to Dr. W.J. Tze and members of the Diabetes Management Team at B.C.’s Children’s Hospital for encouraging me to pursue this research, and to Judith MacDonald for her support and interest in the research process. On a practical point, I acknowledge the skill, patience and tenacity of Garth Spencer and Clare Maycock for typing and layout of the text. Finally, I am deeply indebted to my family. To my children, each of whom has grown, matured and pursued their own academic quests while simultaneously supporting mine. And to my husband, John, I offer profound thanks and appreciation for his constant support, encouragement, and patience throughout my university studies. His interest in my work and the innumerable hours spent reading and editing my manuscripts deserve special acknowledgement. For the families who gave me inspiration, I submit the following dedication.  Parents’ Perceptions of Caring for Infant Diabetes xiv DEDICATION  This thesis is dedicated to the eight families who so generously and willingly gave of their time to participate in this study. The enthusiasm and warm hospitality shown by these busy parents touched me deeply. Their frankness and willingness to express personal feelings about a particularly stressful time in their lives has contributed significantly to my understanding of the complex and multifaceted experience of caring for such young children with diabetes, and has provided insight into ways nurses can best intervene to support and work effectively with these families.  Parents’ Perceptions of Caring for Infant Diabetes 1 CHAPTER ONE Introduction  The Rationale for Study This study was designed to explore parents’ perceptions of their day-to-day lived experience of caring for an infant or toddler under three years of age with insulin dependent diabetes mellitus. Impetus for the study was initiated by questions and concerns and a need for understanding that arose from observations made by the researcher during clinical nursing practice. While working with families of children newly diagnosed with diabetes, and providing support, education and advocacy for these families in the emergency, inpatient and ambulatory clinic settings, the researcher became implicitly aware of the widespread implications and pervasive influence that this life-long illness could have on the day-to-day life of the child and each family member. Over a five-year period of involvement, collaboration, interaction and follow-up with these families, the researcher developed a deeper understanding of the complex, multi-faceted and often stressful daily experiences described by children and adolescents with diabetes and their parents. As a member of the diabetes management team involved in developing educational programs, support groups and community outreach programs to meet the needs of these families, a broader insight into the overall experience of living with a child with diabetes was achieved. However, ongoing dialogue with family members during this clinical experience also made the researcher cognizant of some of the unique management problems and special needs of an emerging and increasing sub-group of parents caring for infants and toddlers diagnosed with insulin dependent diabetes mellitus. During close interaction with these parents, questions and concerns arose to indicate that some of the experiences of caring for such young children with diabetes were quite different from the experiences of caring for older children or adolescents. Observation of these families also provided striking evidence to suggest that the impact of  Parents’ Perceptions of Caring for Infant Diabetes 2 diabetes on the daily lives of these infants and toddlers and their parents was little understood by health care professionals, extended family members, or the community. Consequently, the need for a study to provide increased knowledge and understanding for health care practitioners involved in the care and support of these young clients and their families was indicated. This need was supported in the literature, and will be discussed later in this chapter under background to the problem. Comments made by parents that lent credence to the study were summed up by the distraught mother of an eleven-month-old infant when she returned to the ambulatory clinic several weeks after her young son was diagnosed. When asked how she was feeling and how she was coping with her infant’s diabetes management at home the mother replied: ‘It’s so hard. No one could possibly believe how hard and how totally overwhelming it is. You see no one else really understands. Not our relatives, not anyone. Unless you’ve been through this, lived with it day by day how can you possibly perceive the problems or begin to understand! In the beginning, of course, we were in shock and totally devastated. We performed just like robots. We didn’t really understand what diabetes was all about, but knew we had to learn all about needles and blood tests in order to take our baby home from the hospital. Once we got home I began to think I cannot manage this, how can I change my whole life to accommodate all these pokes, all these injections and all these meals for such a little child. You see I was just getting used to being a new mother and to caring for a baby, I wasn’t prepared at all for this extra burden. And I think of diabetes like this heavy stone around our necks, it’s always there, it never goes away and it takes the joy and pleasure out of being a parent. Sometimes I feel so inadequate, so inexperienced, so frustrated and afraid. I’m still afraid of the needles, and he’s so small he doesn’t understand. You can’t explain to him, and when he struggles and cries and I have to poke him I want to say, no, that’s enough, no more tothy, and each time he cries, I cry too. I also panic if he won’t eat, I’m so afraid his blood sugar will fall too low, but how do you persuade an eleven-month-old to eat if he doesn’t want to? It’s so frustrating. I think for a parent it’s an awesome responsibility because such a little child is totally dependent on you for his very existence, his very life on a day-to-day basis, twenty four hours of every thy. Because he is so young we have to think for him, feel for him, anticipate for him and judge his actions and his moods. Sometimes I don’t know whether he is irritable because he’s just tired and needs a nap like a normal infant, or whether he’s irritable because his blood sugar is too high or too low. We need to constantly monitor him, check him, fear for him and protect him because he’s too little to tell us how he feels. No one really understands, not our family or friends, they see what we need to do for our baby, the needles, the constant monitoring and they back right off, they cannot handle it,, so we are usually left to manage alone. It’s very hard, and what we really need is someone to listen, someone to know what we are really going through, someone who truly understands.”  Parents’ Perceptions of Caring for Infant Diabetes 3 After listening to the sentiments expressed by this mother and other parents of infants and toddlers with diabetes, the researcher decided to further explore the meaning of the experience of caring for these young children from the parents’ perspective. An exploration of the background to the problem revealed a lack of information on the subject, and a need was expressed by other health care practitioners for studies to identify the perceptions of parents surrounding their experience of managing an infant or toddler with diabetes.  Background to the Problem Diabetes in children is recognized by researchers and health care practitioners as a lifelong illness requiring a complicated daily management regimen in order to maintain good diabetic control, achieve normal growth and development, prevent complications, and promote and sustain optimal level of functioning for the child (Betschart, 1988; Brink, 1987; Hatton, 1988; Hunt & Alojado, 1989; Krall & Beaser, 1989; and Tze, 1989b). For the past decade, there has been a significant increase in the incidence of insulin dependent diabetes mellitus in infants and toddlers under the age of three years (Tze, 1989b). These young children present with clinical characteristics and special needs which are quite different from those of older children or adolescents. However, comprehensive information on the subject is lacking and only a few studies deal with particular problems of this special age group (Tze, 1989b). Therefore, it is important that nurses and other health care practitioners involved in the care of these young clients should understand any unique management problems experienced by both the child and his or her parents, so that optimal management regimens can be developed (Tze, 1989a). Because the full responsibility for the day-to-day care of  child with diabetes ultimately lies  with the parent or primary caregiver, it is expected that these significant individuals have the potential to achieve an appropriate standard of competence that ensures the provision of safe, effective care and management for their diabetic child. It is also a belief of many health care professionals that, in order to  Parents’ Perceptions of Caring for Infant Diabetes 4 achieve and sustain good diabetic control for a child with diabetes, parents or primary caregivers must collaborate with health case professionals, share experiences, and function as equal, essential participating members of the health care team (Metabolic Investigation Unit, 1986). Research studies have shown that the demands and stresses of the diabetic management regimen on parents of children with diabetes can contribute to neurotic behaviour in parents that may require professional intervention to overcome (Betschart, 1988; Tze, 1989a). It is also acknowledged that a parent’s or primary caregiver’s ability to adapt to these new responsibilities depends on that individual’s values, beliefs, past life experiences and ways of perceiving the situation (Anderson, Elfert & Lai, 1989; Hayes & Knox, 1984). Studies have also shown that significant differences emerge when comparisons are made between the goals of medical professionals and the goals of parents in treating children with diabetes. Parents’ goals of treatment appear to be governed more by avoidance of the short-term threats of diabetes, such as hypoglycemia, whereas medical goals are more closely related to long-term management and the threat of complications. The problem of treatment failure for a child with diabetes could result from a difference in goals between medical professionals and parents, and a more effective clinical alliance would result if the goals of parents were better understood by health case professionals (Marteau, Johnston, Baum & Bloch, 1987). It has also been suggested that there is an association between the family enviromnent, parental involvement with their children and the degree of metabolic control achieved by a child with diabetes (Standen, Hinde & Lee, 1985).  Understanding any differences or  similarities in individual family functioning that impact on the diabetic child’s metabolic control could provide useful directions for possible intervention programs. Consequently, it is necessary for nurses to gain knowledge and understanding of the parents’ perceptions of their experience regarding care of the child with diabetes on a day-to-day basis. In this way, nursing interventions can be responsive to the developmental, cultural, social and emotional life of both the child with diabetes and his/her caregiver.  Parents’ Perceptions of Caring for Infant Diabetes 5 Children with Diabetes Over 900 children between the ages of 3 weeks and 17 years are followed on an annual basis by the Diabetes Management Program at B.C.’s Children’s Hospital. The Health Surveillance Annual Report indicated a prevalence rate of 564 children with diabetes in B.C. in 1977; this increased to 2,009 in 1982 and has continued to increase. Incidence rates for both Type I and Type U diabetes in B.C. was quoted as 150,000 adults and children in 1987 (Health Surveillance Annual Report, 1987). However, because registration is voluntary, it is predicted that these figures are minimal. The paediatric population with diabetes in B.C. in 1989 was quoted as a prevalence rate of 1/600 children, and the incidence rate at  8-16/100,000 per year is increasing (Couch, 1989, p. 57). Peak onset for insulin-dependent diabetes in children is late childhood or adolescence (Couch, 1989, p. 57). However, the recent increase in the incidence of insulin dependent diabetes in children under three years of age has been striking. From a total of 122 infants and toddlers under three who have been followed by the Diabetes Program at B.C.’s Children’s Hospital over the past 17 years, 32 were diagnosed before 1979 and 90 were identified and treated between 1980 and 1989 (Tze, 1989b, p. 52). During 1990 and 1991, the incidence rate has again risen dramatically and has included infants less than one month old. Young children under three years of age present with severe ketoacidosis and dehydration, as well as markedly elevated blood sugar levels of> 40 mmolIL. During the first year following diagnosis, these infants and toddlers are more prone to develop severe hypoglycemic episodes which are often associated with convulsions. Blood sugar levels and glycosylated hemoglobin are more difficult to maintain at satisfactory levels. Erratic eating patterns, activity levels and rapid growth all compound these problems. These young clients present a major challenge to health care professionals, and the diagnosis of diabetes in this early period of life is very serious for both the affected child and his/her parents. Intensified education, nursing intervention and support for parents are critical components of management, as parents are required to perform invasive  Parents’ Perceptions of Caring for Infant Diabetes 6 procedures such as insulin administration and blood glucose testing on their child on a regular daily basis; and, simultaneously, have the ability to respond to results (Tze, 1989a; Tze, 1989b). Because of the inability of these young children to communicate their own feelings and needs, the full responsibility for anticipating changes in diabetic control for the child lies with the parent or primary caregiver. These significant individuals are expected to have the knowledge and skills to anticipate any change in their child’s condition, predict patterns in blood glucose levels that could indicate the development of hypoglycemic episodes or hyperglycemia and ketonuria, plan appropriate actions to prevent such episodes, and maintain acceptable diabetic control for their child. These expectations are placed on parents and primary caregivers by health care professionals. However, the difficulties occurring both for the child and for the parents, due to the constant need for invasive procedures, have not been fully explored (Tze, 1989b), and the perceptions of parents surrounding their lived experience of caring for an infant or toddler with diabetes are largely untapped. Thus, the study described here was designed to explore and describe the perceptions of parents surrounding their experience of caring for a young child under three years with insulin dependent diabetes mellitus.  Information gained will contribute to understanding of this experience from the parents’  perspective, and provide insight for nurses and other health care professionals into how they can best intervene to provide support and education for these families over the long term.  Conceptual Framework The conceptual framework chosen to guide this study was developed by Kleinman (1978a) through work in the area of cross cultural medicine. Kleinman’s studies led him to conceptualize the health care system as being comprised of three different but interacting sectors, each with their own explanatory model of health and illness. These explanatory models and their significance in providing guidance for the study will now be discussed.  Parents’ Perceptions of Caring for Infant Diabetes 7 Western society’s view of the health care system and of illness has generally been dominated by the professional, medically orientated institutions, with a focus on scientific, biomedical and objective explanations of health and illness. However, background information on the problem identified for this study indicates that significant differences emerge when comparisons are made between the goals of medical professionals and the goals of parents in treating children with diabetes. It also acknowledges that the flu responsibility for the day-to-day care of any child with diabetes ultimately lies with the parent or primary caregiver; and that the ability to adapt to these responsibilities depends on that individual’s values, beliefs, past life experiences and ways of perceiving the situation (Anderson, Elfert & Lal, 1989; Hayes & Knox, 1984). Kleinman’s concept of explanatory models proposes that the health care system is much more inclusive than Western society’s view of the medically orientated institutions, and in fact represents a total, cultural organization of medically-relevant experiences, as well as an integrated system of social and personal perceptions, uses, and evaluations (Kleinman, 1978b, p. 414). Kleinman asserts that “most health care systems contain three structural arenas within which  sickness is experienced and reacted to” (1978a, p. 86). These are the professional (nursing, medical and other professions); popular (individual, family, social network, community), and folk (nonprofessional healers) arenas. Each domain of health care conceptualized by Kleinman is viewed as a sociocultural system with its own beliefs, values and norms, and its own explanatory model of health and illness (Anderson, 1985, p. 237). Within the context of this framework, a distinction is made between disease and illness. Disease is the malfunction or maladaptation of biological or psychological processes, whereas illness signifies the experience of disease. Illness is the way in which an individual, parent, family or social network perceives and responds to disease (Kleinman, 1978a). Therefore, illness is culturally shaped. How we perceive, experience and cope with disease is based on individual explanations specific to the social positions occupied and the meanings employed (Kleinman, 1978a, p. 86). Interactions between the nurse (professional arena) and parent or client (popular arena), are transactions between explanatory  Parents’ Perceptions of Caring for Infant Diabetes 8 models which differ in cognitive content, expectations and goals (Kleinman, 1978a, p. 86). Differences in explanatory models lead to varied interpretations of health and illness, and thus differing expectations and goals. Therefore, working within the framework of this model, the nurse is directed towards understanding the client’s explanatory model, and the encounter between the nurse and client (or parent) becomes one of sharing the explanatory models of the situation. Using Kleinman’s framework, Anderson (1985) explains that the nurse elicits from the client how he or she understands the situation, and then helps the client acquire knowledge and skills to cope with the situation in a way that is culturally acceptable to the client (p. 239).  The phases of nurse/client interaction (exploration/negotiation,  working/collaboration, and reflectionlco-ordinating) (Anderson, 1985, p. 239), fit with the assumption that parents of young children with diabetes are essential, participating members of the diabetic management team. For the purpose of this research study, the domain of inquiry is the popular arena of Kleinman’s (1978a) health care system’s explanatory models (see Figure 1). The popular arena comprises principally the family context of sickness and care, and between 70% and 90% of sickness is managed solely within this domain (Kleinman, 1978a, p. 86).  This arena encompasses beliefs, choices, decisions, roles,  relationships and interactions, and includes the parents’ subjective experience of their young child’s long-term illness of diabetes, and their perceptions of caring for the child and managing the required diabetic regimen. Because many of the tasks delegated to parents of children with diabetes are those initially performed by nurses, and because nurses teach the parents the necessary skills and knowledge to manage the child’s diabetic regimen, use of Kleinman’ s framework can direct nurses towards understanding that parents may view their caregiving management role in a sociocultural context different from their own. Generally, the long-term care of the infant or toddler with diabetes becomes a negotiated, collaborative and supportive role between health care professionals and the child’s parents.  Parents’ Perceptions of Caring for Infant Diabetes 9 Consequently it is important for those in the professional structural arena of the health care system to acknowledge, understand and respect the parents’ explanatory model, which is based on their personal experience within the popular structural arena (Kleinman, 1978a).  Professional sector  Folk sector  Roles Relationships Interaction settings Institutions  Boundary lines  interaction, and exit  Points of interaction, entrance and exit  Popular sector: (a) Individual based (b) Family based (c) Socia[ nexus based (d) Community based -  -  -  -  Health care system Fig. 1. Health care system: internal structure  Health Care Systems Model Adapted from ‘Concepts and a Model for the Comparison of Medical Systems as Cultural Systems”, by A. Kleinman, 1978, Social Science and Medicine, 12, p. 86.  Kleinman’s conceptual framework directed the researcher to design a study which explored parents’ perceptions regarding care of their infant or toddler with diabetes. Data elicited from the parents’ articulated experience can contribute to a deeper understanding of the explanatory models associated with day-to-day management of these young children over the long term.  The specific research problem  addressed in this study is developed from the previously stated questions, concerns and needs for knowledge and understanding identified at the beginning of this chapter.  Parents’ Perceptions of Caring for Infant Diabetes 10 The Problem Statement The general problem which this study addresses is the paucity of research available and subsequently the lack of knowledge about the perceptions of parents concerning their experience of caring for an infant or toddler under three years with diabetes. Over the past decade, there has been a significant increase in the incidence rate of insulin dependent diabetes in these young children. However, although previous studies show that the demands of the diabetic management regimen affect parents of diabetic children of all ages, experience with diabetes in the young child is rarely described (Tze, 1989b). No studies are available to provide insight into the lived experience of caring for an infant or toddler with diabetes as perceived and articulated by the parents, yet a parent’s attitude towards coping, their abilities to cope with the daily management regimen, and their fears, uncertainties, acceptance or over-protectiveness can affect the growth and development of the child, and influence the lifestyle and attitude of the child towards diabetes for the rest of his/her life (Lipman, Difazio, Meers & Thompson, 1989; Tze, 1989b). Nurses have the mandate to provide parents with the knowledge and skills necessary to care for their child on a day-to-day basis. However, in order for nurses to support and work effectively with parents, they must first gain an understanding of how parents perceive these experiences and responsibilities. Because the literature indicates that people interpret health and illness in many different ways, and that these various interpretations guide health care behaviours (Anderson et al., 1989; Kleinman, 1987a; Marteau et aL, 1987; Standen et al., 1985), the purpose of this study was directed towards gathering data that would help health care professionals understand the parents’ perspective regarding caring for their child with diabetes.  Parents’ Perceptions of Caring for Infant Diabetes 11 Purpose of the Study The purpose of this study will be to explore and to describe the lived experience of parents who  are caring for an infant or toddler under three years with insulin dependent diabetes, and to gain insight into an understanding of this experience from the parents’ perspective. It is anticipated that the insight and understanding gained from these parents’ articulated experience will provide data on how the nurse can best intervene to provide support and education for these parents and their children over the long term. In order to elicit the parents’ perceptions of these often complex and multifaceted daily experiences, the following specific questions will direct this study.  Research Questions 1:  What is it like for parents to have an infant or toddler under three years with insulin dependent diabetes mellitus?  2:  How do parents describe their lived experience of caring for such a young child who has insulin dependent diabetes mellitus?  3:  How do parents perceive the impact and effect of the daily diabetic management regimen on their child, on themselves, and on family life? Terms which could be subject to ambiguous interpretation are defined below in order to clarify  their use throughout this study.  Definitions of Terms DIABETES: For the purpose of this study, diabetes will refer to insulin dependent diabetes mellitus, a disorder involving lack of insulin production in the beta cells of the pancreas. Children with this disorder require multiple insulin injections on a daily basis to maintain blood sugar absorption by the body for energy. They must follow a specific diabetic diet.  Parents’ Perceptions of Caring for Infant Diabetes 12 YOUNG CHILD: Child under three years of age. Includes infants and toddlers. PARENT: Mother, father or guardian of the young child with diabetes. FAMILY: For this study the family includes parent(s), the young child with diabetes, siblings and any other significant individuals living in the household. FAMILY LIFE: The general functioning of all family members as interdependent parts of the family. Includes communication patterns, interaction patterns, activities, support systems and roles family members play. LIVED EXPERIENCE: Day-to-day living with the young child who has diabetes. May include routines, procedures, roles, diabetic management as depicted by the parent. DIABETIC MANAGEMENT REGIMEN: May include any procedures (e.g. insulin injections or blood glucose monitoring), or tasks (e.g. preparing a diabetic diet, treating hypoglycemia or ketonuria) performed by the parent on behalf of the young child with diabetes. Keeping in mind the identified problem, the purpose of the study and the specific research questions to be addressed, a qualitative, interpretive approach was used to guide this research. This methodology will now be introduced.  Introduction to the Methodology The phenomenological paradigm of qualitative research theory and methodology was used as the method of approach to this study.  A qualitative, interpretative approach that focuses on the study of  events as these are constructed in everyday social interactions was employed (Anderson, 1981). Qualitative research involves methods whereby characteristics, attributes and meanings of the phenomenon under study are identified, documented and interpreted (Leininger, 1985). These designs are typically selected when little is known about a phenomenon (Sandelowski, Davis & Harris, 1989). The literature review for this study presented in Chapter Two will reveal that the demands and stresses of the daily  Parents’ Perceptions of Caring for Infant Diabetes 13 management regimen on parents of children with diabetes has been recognized (Betschart, 1988). However, there is a paucity of research available regarding the perceptions of parents surrounding their lived experience of caring for a young child with diabetes. Because these perceptions of parents have not yet been identified, a qualitative research approach is appropriate for exploring this phenomenon. The specific method chosen is phenomenology. Phenomenology is the study of human experience, and its purpose is to understand the structure and meaning of the lived experience (Knaack, 1984). The aim of phenomenological inquiry for the nurse is understanding (Sandelowski, 1986). Phenomenology is an. inductive, descriptive research method that describes the lived experience from the subjective perspective of the person(s) who lived it (Omery, 1983). The task of the method is to investigate and to describe phenomena, including the human experience, in the ways these phenomena appear “in their fullest breadth and depth” (Omery, 1983, p. 50). The data gathered using this method are not limited to observable facts or objective empirical data. Instead, they include all available phenomena, together with the subjective meanings that these phenomena or experiences have for the participants in the study (Ornery, 1983). Because the objective of this study is to  “paint a picture’  and increase the nurse’s understanding of how parents perceive their lived experience  of caring for their infant or toddler with diabetes, the phenomenological research method will guide the researcher’s role, selection of participants, selection criteria, data collection procedures, sequencing of events in the study, measures to ensure reliability and validity (referred to as confirmability in qualitative research), data analysis and procedures for protecting human rights. Specific details relating to the manner in which this method was interpreted and implemented will he described in Chapter Three. For the purpose of this study, the following assumptions and limitations are acknowledged.  Parents’ Perceptions of Caring for Infant Diabetes 14 Assumptions The following basic assumptions are directly pertinent to this investigation. It is assumed: 1)  That parents of infants and toddlers with diabetes will have feelings and beliefs about caring for their child;  2)  That parents are willing to share their experience and will provide an accurate and honest reporting of their perceived experience;  3)  That issues surrounding diabetic management for their child will be of concern for these parents.  Limitations of the Study The depth and richness of the data for this study could be limited due to the time constraints of the researcher. The number of participants may be determined by the fact that the population of young children with diabetes living in the Vancouver area is small. Also, because all parents who participated in this study were elicited through the Diabetes Program at B.C.’s Children’s Hospital in Vancouver, Canada, these parents may represent a specialized subgroup of the population.  Summary This chapter has introduced the rationale for the study topic, the background to the problem, the conceptual framework chosen to guide the study, the purpose for the research, the specific questions used to direct the study and definitions of terms. The phenomenological paradigm of qualitative research theory and methodology has been briefly described and assumptions and limitations of the study acknowledged. Parents’ articulated concerns that lent credence to the need for this research were described, and the study was located within the context of nursing inquiry and within the domain of the popular arena of Kleinman’s (1978) health care systems explanatory models.  Parents’ Perceptions of Caring for Infant Diabetes 15 The following chapter will review selected literature related to care of children with diabetes, and is linked to the background and purpose of the study. Chapter Three will present a detailed description of the methodology used for this study. Chapter Four will present the findings of the study, and the participants’ accounts of their experience will be discussed. Chapter Five will discuss the findings of the study in relation to other authors’ published work on the topic. Chapter Six will provide a summary and conclusions of the study, and discuss the implications of the findings for nursing practice.  Parents’ Perceptions of Caring for Infant Diabetes 16 CHAPTER TWO Review of Selected Literature  Introduction The conceptual framework provides guidance for the literature review. Only a few studies are available on the chosen research topic, and no studies identified by the researcher specifically describe the lived experiences of parents who are caring for an infant or toddler under three years with insulindependent diabetes. However, several bodies of literature from areas that appear relevant and linked to the identified problem and purpose of the study will be reviewed. Both experiential and research-based articles will be examined in order to provide a broad overview and realistic understanding of the concepts underlying this study. Because illness is a socially and culturally located phenomenon and forms part of the human experience (Kleinman, 1978a), literature pertaining to the impact of any chronic long-term illness on the child, the parent and the family will be examined first. This will be followed by a review of literature that has been specifically selected because of its relevance to care and management of diabetes in children of all ages. A third body of literature will be examined because the author’s work can be linked to the unique problems and needs of young children with diabetes and their parents. The role of the literature review is to place this study in the context of work done by other authors, and provides a basis to guide the current research process. In Chapter Four of this report, the parents’ accounts of their experience of caring for an infant or toddler with diabetes will be presented, and in Chapter Five the findings of this study will be examined and discussed in relation to the findings of other researchers and authors.  Parents’ Perceptions of Caring for Infant Diabetes 17 The Impact of a Child’s Long-Term Chronic fliness on the Child, the Parents and Family Studies show that a child with a long-term chronic illness can have a devastating effect on family life. Changes in the health status of a child can alter family interaction patterns, roles, processes and functions (Banion, Miles & Carter, 1983). Freeman (1984) looks at how lifestyle modifications for the child and his or her family are necessary, and suggests that these changes may be easy to adapt to or may be extremely disruptive to family functioning.  Freeman also suggests that the parents or primary  caregivers are the most powerful subsystems in a family. Because these significant individuals create patterns into which the child fits, it is important for nurses to understand that modifications in lifestyle will depend primarily on the parents’ perceptions of their, child’s illness, and their acceptance of it (Freeman, 1984). In her interpretive study, Robinson (1983) found that families generally coped very well with the demands of a long-term illness in a child, which seemed to be a reflection of their attitude that coping is not a choice-making issue. However, Chan and Leff (1982) report that chronic illness not only interrupts the growth and maturation of the child, but also severely disrupts the growth and maturation of his/her parents. These authors suggest that diagnosis of a chronic long-term illness in a child causes stress for the entire family and can seriously affect family functioning. Whaley and Wong (1983) report that, because a family is a system of interdependent parts, a change in any one member of the system causes a corresponding change in every other member. For example, when illness occurs in a child, the child often becomes the principal directing force and, as such, causes major responses in each of the other family members. These responses are necessary in order that family members adapt and fit into a new and changed pattern (Freeman, 1984). Several studies indicate that the mother is the person most involved with the coordination of care for the chronically-ill child (Banion et al., 1983; Chan & Leff, 1982; Freeman, 1984). These authors suggest that, because the mother is so intimately bound to the details of the child’s illness and needs, any  Parents’ Perceptions of Caring for Infant Diabetes 18 problems that she has in coping with the daily management regimen may affect the entire family and alter parental roles and communication patterns within the family (Barilon et al., 1983).  How the parents  perceive their child’s illness is also a significant factor in how the child and family adapts (Chan & Leff, 1984). Robinson’s study (1983) suggests that illness will be interpreted differently by each member of the family and will be subjectively experienced in different ways by different individuals.  These  perceptions will be based on past experiences, family beliefs, values, and cultural orientation, and can change during progression of the child’s illness and the family’s adaptation.  Other studies confirm  Robinson’s findings by reporting that a parent’s or primary caregiver’s ability to adapt to the new responsibilities for their child’s care depends on that individual’s values, beliefs, past life experiences with coping with chronic illness, and ways of feeling about the situation (Anderson et al., 1989; Hayes & Knox, 1984). Other studies show that the extent to which a child’s illness affects the family also depends on the extent and nature of the illness and the required management regimen (Bouma & Schweitzer, 1990). For example, in their study involving 84 mothers of children with diabetes, Banion, Miles and Carter (1983) reported that major factors affecting the familial impact of chronic disease in a child are the amount of time spent in the home managing of the disease, and the amount of change in lifestyle that must be made. These authors reported that in a chronic illness such as diabetes, the daily care and monitoring of control at home necessitates large expenditures of time and effort by the parents.  The lifestyle and  interpersonal relationships of the entire family are affected, as members must rearrange and establish their lifestyle to accommodate the requirements imposed by the diabetic regimen and the treatment demands. Betschart (1988) and Tze (1989b) reported that the demands and stresses of managing the diabetic regimen for a child can contribute to severe stress and neurotic behaviour in parents that may require professional intervention to overcome. Parents of children with diabetes are expected to perform painful and intrusive procedures such as daily insulin injections and blood glucose monitoring. These procedures are essential  Parents’ Perceptions of Caring for Infant Diabetes 19 to the child’s long-term well-being and survival, but can evoke fear, anxiety, and feelings of helplessness and overwhelming guilt and resentfulness in those expected to undertake and perform such procedures (Hatton, 1988; Tze, 1989b). Severai theorists report that the majority of difficulties experienced by parents centre on extensive treatment regimens, and that these regimens may be so demanding that they pose greater problems for the family than do the symptoms of the child’s long-term illness (Bouma & Schweitzer, 1990; Chan & Leff, 1982; McCollum, 1981). Because diabetes has been recognized as a chronic, lifelong illness requiring a complicated daily management regimen (Betschart, 1988; Brink, 1987; Hatton, 1988; Hunt & Alojado, 1989; Krall & Beaser, 1989; and Tze, 1989b), it is important that researchers and health care professionals better understand the lived experiences of parents and children who are coping with the impact of this illness on a day-to-day basis.  The Impact of Diabetes in Children on the Parents and Family Several studies are available that discuss compliance or lack of compliance with the diabetic management regimen (Daneman, Siminerio, Transue, Betschart, Drash & Becker, 1985; Friedman, 1987; Hilton, 1986). However, few studies address the frustrations, stresses and demands on inner resources surrounding invasive procedures performed by the parents of children with diabetes, and few empirical investigations on coping behaviours of families struggling with these demands on a daily basis have been conducted (Betschart, 1988). MacMillan, Muraca and Murk (1988), in their study to evaluate a program implemented to teach nurses successful blood glucose monitoring techniques, concluded that this added component to an already complex and demanding diabetic management regimen stretched not only the resources of nurses, but would require inner strength and resourcefulness on the part of parents and children to perform this task on a daily basis at home.  A study conducted by Templeton, Burkhart, Anderson and Bacon (1988)  Parents’ Perceptions of Caring for Infant Diabetes 20 concluded that invasive procedures such as blood glucose monitoring provided parents and children with indications of “good” or “poor” diabetic control, helped to confirm hypoglycemia and hyperglycemia and allowed more flexibility in the dietary regimen and insulin administration. However, the perceptions of children and parents surrounding their experience and concerns with these procedures were not elicited. With regard to complexities of the diabetic management regimen, Kovacs and Feinberg (1982) dramatized this problem when they reported that no families in their sample initially were able to cope effectively without neurotic behaviour. Betschart’ s study (1988) was instrumental in directing this researcher towards the current study. Her descriptive survey involved 145 parents of children between the ages of 5 and 17 years with diabetes. Parents in the study each attended an educational seminar designed to review diabetes management for their child. During the seminar, parents wrote anonymous responses to specific questions dealing with a) their understanding of glycemic control, b) their feelings of guilt associated with various aspects of diabetes management, and c) their individual ways of coping with the struggles and frustrations of daily life. Analysis of the responses resulted in indications that parents and their children with diabetes face numerous difficult tasks every day, and that the process of accepting the diagnosis of diabetes in a child is similar to that of mourning (Betschart, 1988, p. 400). Betschart concluded that parents’ understanding of, and guilt over their children’s diabetic control frequently led to stresses and needs not currently being addressed or met by health care professionals. These stresses can contribute to parental behaviours of child abuse, psychological neglect, and inability to provide love and security for the child. Betschart also identified areas of stress and feelings of guilt for parents surrounding issues of inflicting pain and suffering on their child, and the inability to control the child’s blood glucose levels. Her results were reinforced by other studies which indicated that the stresses and demands of the diabetic management regimen on parents have long been recognized (Allen, Affleck, Tennen, McGrade & Ratzan, 1984; Etzwiler & Sines, 1962; Kovacs & Feinberg, 1982; Schafer, Glasgow, McCaul & Dreher, 1983).  Parents’ Perceptions of Caring for Infant Diabetes 21 In a study conducted to determine the association between knowledge and the level of self management in children with diabetes, Christensen (1983) surveyed 157 children attending a diabetic summer camp. The extent of knowledge about diabetes was detenuined by the children’s responses to a knowledge questionnaire. Scores were analyzed using a t-test and regression analysis. Results showed a significant association between the child’s knowledge base and level of self-management, and indicated that children with diabetes are more likely to achieve effective self-management when adequate knowledge of their illness is acquired. Appropriate knowledge and skills should be demonstrated by both the parents and child if the diabetes is to be effectively controlled (Christensen, 1983, p. 552). Henderson and Thompson (1992) explored the use of life-size body drawings and puppet play to  increase age-appropriate knowledge and enhance emotional adaptation in preschool and early school-age children with diabetes. These nurse educators described a program designed to encourage, validate and normalize the young child’s verbal expression of feelings. Invasive and painful procedures and loss and grief were common emotional issues explored and shared by parents, siblings and the young child with diabetes. Because nurses and other health care professionals are responsible for teaching the necessary knowledge and skills to both the child with diabetes and his or her parents, collaboration and understanding between family members and health care professionals should be fostered. When discussing the family and childhood diabetes, Lorenze (1991) stated that “few childhood diseases rival insulin-dependent diabetes mellitus in terms of the high degree of family involvement needed for day-to-day management” (p. 262). LaGreca (1991) reiterated that insulin dependent diabetes mellitus is a challenging and complex disease to manage effectively, and that the demands of insulin injections, blood glucose monitoring and dietary and activity programs have lifestyle implications that make this a disease requiring a high degree of family involvement (p. 269). This research found that during early childhood, parents typically assumed primary responsibility for the child’s diabetic care. However, findings also indicated that even throughout later childhood and adolescence, family members  Parents’ Perceptions of Caring for Infant Diabetes 22 remain involved in many aspects of the diabetes care. In fact, despite conventional wisdom that children should assume responsibility for their own diabetes care as early as possible, accumulating evidence strongly suggests that family involvement is both desirable and beneficial for youngsters with this chronic illness regardless of age (LaGreca, 1991, P. 269). LaGreca (1991) also reported that problems occur if children are left with a high degree of responsibility for their own care, and youngsters left entirely responsible for their own insulin administration and monitoring have been found to be in poorer metabolic control than those whose parents are consistently involved with assisting and supervising the diabetes regimen for their youngster (p. 269). In their study to assess family sharing of diabetes responsibility, Anderson, Auslander, Jung, Miller and Santiago (1991) found that children assume increasing responsibility with increasing age. However, health care professionals should not assume that parents and children communicate about the sharing of diabetes responsibilities in the family, or about changes in management as they occur (P. 263). In their study, these researchers used factor analysis on childrens’ and parents’ responses to a Diabetes Family Responsibility Questionnaire, in an attempt to determine the relationship between patterns of mother-child sharing responsibility for diabetes related tasks, and the adherence and metabolic control of the diabetic child. Results of this study supported those of LaGreca (1991), in that correlations were found between metabolic control for the child and the amount of involvement the parents retained in the diabetes management regimen. Because this study indicated that in mother-child dyads, lack of communication about who “takes responsibility” can significantly affect diabetic control for a child, these researchers recommended that health care practitioners should consistently help families to identify diabetes tasks for which no one in the family takes responsibility (p. 263). With very young children, shared responsibilities and open communication between both parents was also a factor in the achievement of good metabolic control for the child (Anderson et al., 1991). The study by Anderson and colleagues (1991) also examined socioeconomic status, educational and  Parents’ Perceptions of Caring for Infant Diabetes 23 occupational levels of the parents, marital status of the parents and age of the diabetic child. Multiple regression analysis indicated that these were all factors significantly influencing the overall amount of family involvement in the child’s diabetic management. These researchers recommended that studies undertaken to examine individual family members’ perceptions of who takes responsibility for the complex tasks of diabetes management would provide valuable information for health care professionals working with the family system around adherence and support issues (p. 265). Their findings emphasized the importance of ongoing family communication regarding expectations and responsibility for diabetes management tasks with children of all ages.  Although the mother-child dyad was emphasized, the  Anderson and colleagues’ study results also indicated that lack of communication and differences in expectations regarding the sharing of diabetes responsibilities also existed between the parents of diabetic children. Because of the long-term nature of the disease, this study indicated that in many families, the focus on diabetes management may decrease after the family stabilizes following a crisis period, such as diagnosis of an acute diabetes-related episode (Anderson et al., 1991, p. 267). In their longitudinal study that followed mothers of newly-diagnosed insulin-dependent diabetic children over a six-year period, Kovacs, Iyengar, Goldston, Orbrosky, Stewart and Marsh (1991) assessed the psychological functioning and levels of maternal depression experienced over time.  Self-report  symptom inventories were used and analyzed. Initial findings indicated that mothers initially reacted to the diagnosis of diabetes in their child with mild depression and overall distress, but that these initial reactions subsided in about 6 to 9 months.  Later findings indicated that after this initial phase of  adjustment, there were slight increments in maternal depressive symptoms over the duration of the child’s illness. Psychological distress, including symptoms of anxiety, somatization, anger, suspiciousness and dysphoria also increased with the duration of the child’s diabetes. These researchers also found that the degree of emotional upheaval mothers experienced at the time diabetes diagnosed in their child was a strong predictor of their later symptomatology (Kovacs et al., 1991, p. 276). The Kovacs et al. study is  Parents’ Perceptions of Caring for Infant Diabetes 24 still in progress, but revealed findings that appear to indicate that the maternal depression and distress was not associated with the child’s compliance or diabetic control. However, mothers who reported greater general distress also reported coping more poorly with their child’s diabetes.  In Jacobson’s (1991)  commentary on the Kovacs and colleagues’ study, it was suggested that the initial increase in distress and depression was consistent with a period of mourning that is likely to occur with the onset of a chronic, life-threatening illness such as diabetes; and that the slight increases in symptoms over the long term are consistent with other research findings about the effect of the course of diabetes in children and its influence on mothers’ lives. The fact that the initial degree of upheaval experienced by mothers at the time their child was diagnosed could be a predictor of their later symptomatology was seen by these researchers as an important point for health care professionals to consider.  Early psychological  interventions to identify sources of stress, reduce stress and improve coping could be beneficial to these mothers, their children and family functioning (Jacobson, 1971, p. 279). This study supports the work of other researchers such as Koski, Ahlas, and Kumento (1991) who report that past experiences, past history of depression, and family dynamics can play a major role in how mothers react to the diagnosis of diabetes in their child. In their longitudinal study of family functioning and its relationship to coping with diabetes in children, Koski and colleagues identified several family functioning styles such as conflictual, chaotic, or supportive of freedom for individual growth, that can significantly impact on the ability of family members to effectively manage a child with diabetes (Koski et al., 1991, p. 289). These authors indicate that in the past, more emphasis has been placed on quantitative methods of research using multivariate statistical models that attempt to mirror the complexity of family interactions and a child’s diabetes. They recommend that more qualitative studies should be undertaken in light of the fact that areas of family life that are critical in the management of diabetes in a child have not yet been fully identified (Koski et al., 1991, p. 289).  Parents’ Perceptions of Caring for Infant Diabetes 25 The majority of studies previously reviewed on children with diabetes and their families have involved adolescents or school-age children, and only a few studies include data pertinent to the unique management problems of young children under three years. Because the stresses and needs surrounding care of these toddlers and infants are quite different from those of older children, it is important for nurses and other health care practitioners involved in their care to recognize the characteristics and special needs of both these children and their parents (Tze, 1989a).  Diabetes in Infants and Toddlers under Three Years: Uniciue Problems and Needs Young children under three years of age who have diabetes are totally dependent on others for management of their disease. Consequently, how the parent adjusts to and copes with the day-to-day care of the young diabetic child can be a key factor in reducing the impact of the child’s diabetes on family life, and in enhancing the adjustment of the child (Banion et al., 1983). Wysocki, Huxtable, Linscheid and Wayne (1989) evaluated the adjustment to diabetes mellitus in preschoolers and their mothers. Mothers completed the child behaviour checklist, Parenting Stress Index, Parents’ Diabetes Opinion Survey and the Preschool Diabetes Behaviour Checklist constructed specifically for the study. Maternal attitudes were correlated with the children’s disease-specific behaviour problems. However, findings of the study revealed that psychological adjustment of the child was not predictive of diabetes-specific behaviour problems. In the previously cited study by Banion, Miles and Carter (1983), it was also found that the younger the child, the greater the maternal concerns about hypoglycemic reactions and availability of  support systems. These investigators reported that few studies are available that analyze the difficulties parents have in managing a child with diabetes.  They developed a Diabetic Management Concern  Questionnaire based on eleven aspects of diabetic care that could be of concern to mothers. These aspects  Parents’ Perceptions of Caring for Infant Diabetes 26 included injections, diet, control, testing, hypoglycemic episodes, finances, the amount of support and help available, time demands, feelings that the illness is a stigma, and fears for the future. Mothers with children ranging in age from 1 to 17 years completed the questionnaire rating each of the eleven aspects of care on a Likert-type scale. Results were analyzed using Duncan’s New Multiple Range Test, and analysis of variance for repeated measures. This study involved mothers of children with diabetes of all ages, and did not specifically address the perceptions or experiences of mothers with children under three years. However, a secondary purpose of the study was to explore how age and sex of the child, age at diagnosis, illness duration, marital status, and socioeconomic status of the mother were related to the mother’s perception of the problematic aspects of care. Results indicated that the three dimensions of diabetes management perceived as most problematic to all mothers were hypoglycemic episodes, diabetic control and concerns for the future. Mothers of lower socioeconomic status were more concerned about finances, availability of support, and the social stigma of diabetes. In age-related comparisons, the study results indicated that hypoglycemic episodes and availability of help and support were two aspects of care significantly correlated with age. For example, the younger the child, the greater the maternal concern about these two aspects of care. Results also indicted that the younger the child at time of diagnosis, and the shorter the duration of illness, the greater the mother’s concern with injections and maintaining diabetic control. The sex of the child had no effect on dimension scores (Banion et al., 1983). This study provided some information on maternal concerns related to managing a child with diabetes. However, the investigators acknowledged that further studies are required in order for health care professionals to better understand the perceptions of mothers concerning caring for their diabetic children. They suggested that understanding the parents’ experience could direct health care professionals towards providing better services to meet the physical care needs of the child, as well as the psychosocial needs of the entire family. Findings from this study further indicated that understanding the parents’  Parents’ Perceptions of Caring for Infant Diabetes 27 perceptions of day-to-day care of their child is of particular importance when diabetes is diagnosed at an early age, because young children are so dependent on others for their very existence (Banion et al., 1983). A literature search revealed no studies describing the experience of parents who care for infants or toddlers with diabetes on a day-to-day basis. However, in an article describing a developmental approach to diabetes in children, birth through preschool, Lipman and colleagues (1989) report that, for an infant who is just learning to trust those who provide comfort and love, diabetes can pose a stumbling block. Suddenly, the most tmsted person in the infant’s environment  —  the parent  —  must inflict pain  on him/her repeatedly. An infant’s tiny fingertips provide little surface area for repeated capillary blood tests, and the parents experience extreme anxiety at the thought of causing their infant pain. With preschoolers, Lipman and colleagues found that inflicting pain through insulin injections and blood glucose monitoring can affect parentlchild relationships. Although their article was not research-based, it directed this researcher towards the need for research in this area. Although not specifically linked to parents of infants or toddlers, fmdings from a study by Marteau and colleagues (1987) showed significant differences between the goals of medical personnel and the goals of parents in treating children with diabetes.  In the introduction to their study these investigators  acknowledged that most studies conducted to analyze treatment success for the child with diabetes are concerned largely with the extent to which the goals set by the doctor have been achieved. Disparity between goals set and goals achieved have been generally understood by health care professionals as a problem of patient compliance (Marteau et al., 1987). In these studies there has been an implicit assumption that doctors and parents are aiming to achieve the same goals for the child, and the fact that doctors and parents may not share the same goals has not been considered. In the Marteau and colleagues’ study (1987), the four related aims were 1) to compare the goals of treatment of doctors caring for a child with diabetes with the goals of parents, 2) to assess the extent to which the parent’s goals of treatment predict the level of blood glucose control achieved by the child,  Parents’ Perceptions of Caring for Infant Diabetes 28 3) to examine whether the concepts of control used by doctors coincide with the concepts of control used by parents, and 4) to examine the attitudes and beliefs that influence the formation of each respective goal. The investigators postulated that a disparity of goals between parents and doctors would arise from a disparity in beliefs and attitudes towards the child’s diabetes. The beliefs and attitudes of subjects were examined according to those outlined by Becker, Maiman, Kirscht, Haefner, Drachman and Taylor (1979) in the Health Belief Model. Subjects in the study were 65 sets of parents of children with diabetes aged between 5 and 16 years. They completed scales on their goals of treatment and their beliefs and attitudes towards diabetes. The parent’s scales were compared with those completed by 104 pediatricians, and 119 physicians with a particular interest in diabetes. The scales were designed to measure perceived seriousness of diabetes, perceived vulnerability of the child to short-term and long-term complications, perceived benefits of treatment and perceived barriers to treatment. Parents of the children with diabetes completed the scales individually at home. Pediatricians and physicians completed the scales making ratings for a hypothetical child with insulin dependent diabetes. Results indicated that parents preferred children to show higher glycemic levels than doctors. This preference was associated with the belief that hypoglycemic episodes were serious for their child and should be avoided. Parent’s goals were more related to hypoglycemia than hyperglycemia and were related to their experiences of dealing with such episodes. While the risk to life in childhood due to a hypoglycemic coma is considered low by doctors, for parents the event is frightening and frequently accompanied by fear of their child dying. In comparison, the doctors’ goals were found to be related more to beliefs about hyperglycemia. Doctors perceived hyperglycemic coma as far more serious and more difficult to treat than hypoglycemia. Their knowledge and past experience led them to a belief that diabetic ketoacidosis is a major threat to life for the child. Their goal of achieving normoglycemia for the child with diabetes was based on the potential benefits of reducing or avoiding long-term complications. Parent’s perceptions of diabetic  Parents’ Perceptions of Caring for Infant Diabetes 29 complications were lower than those of doctors and could reflect the fact that parents’ have less experience of people with diabetes, over the long-term (Marteau et al., 1987). These results indicate that doctors and parents do not always share the same goals in treating children with diabetes, and the researchers suggest that treatment failure for the child, and communication problems between health care professionals and parents, could result from these differences in perceptions and goals. They conclude that a more effective clinical alliance would result if the goals, beliefs and attitudes of parents were better understood by health care professionals. These findings are congruent with the belief inherent in Kleinman’s conceptual framework that guides this study. They also support findings of Banion and colleagues (1983) who reported that hypoglycemic episodes were perceived by mothers of children with diabetes as one of the most problematic aspects of diabetes management, and that the younger the child the greater the maternal concern expressed. In a recently published research article, Puczynski, Puczynski and Ryan (1992) provided new information about the acute and long-term effects of hypoglycemia in diabetic children on such cognitive functioning as learning, memory, reading and visuospatial skills. These researchers closely monitored 24 diabetic children at a summer camp and administered a battery of neuropsychological tasks to nonsymptomatic children and to children recovering from mild hypoglycemic episodes. Comparison of group scores demonstrated statistically significant lower scores in 5 out of 12 tasks in the group recently recovered from mild hypoglycemic episodes. The study results also indicate a deterioration in mental efficiency following periods of hypoglycemia in children.  The time required for cognitive recovery  following such episodes was not determined by this study. These same researchers also reported on a number of studies that suggest children who are diagnosed with insulin dependent diabetes at a young age are at increased risk for the development of mild to moderate cognitive impainnent (Ryan, Vega & Drash,  1985; Rovet, Ehrlich & Hoppe, 1988).  Parents’ Perceptions of Caring for Infant Diabetes 30 Ryan and colleagues (1985) administered a series of neuropsychological tests to adolescents with a history of insulin dependent diabetes and compared results with a group of healthy controls. Results demonstrated that children who acquired diabetes prior to the age of four years performed more poorly than did those with later onset diabetes or healthy controls in tasks of visuospatial ability, and measures of memory and intelligence. It was hypothesized by these researchers that the developing nervous system of the young child is particularly vulnerable to recurrent and/or undetected episodes of hypoglycemia. Because all children with insulin dependent diabetes are susceptible to episodes of mild or moderate hypoglycemia, it was suggested that “management of diabetes in young children is complicated by the parents’ efforts to distinguish symptoms of hypoglycemia from normal behaviour seen in these children during their infant, toddler and preschool years” (Puczynski et al., 1992, p. 152). Consequently, it was recommended that more frequent blood glucose measurements are necessary to prevent repeated and undetected episodes of hypoglycemia in young children. Puczynski and colleagues (1992) acknowledged that the management of insulin dependent diabetes in children is a challenging and often frightening task for children, their parents and school personnel (p. 151). They also implied that it is critical for health care professionals to communicate the effects of early onset disease, and the transient or long-term effects of acute hypoglycemia on a child’s cognitive functioning to the parents.  While acknowledging that medical emphasis is focused primarily on  maintaining optimal blood glucose levels to prevent the development of long-term complications associated with hyperglycemia in diabetes, Puczynski et al. (1992) also suggest that avoidance of acute hypoglycemic episodes is also critical in the overall management of young diabetic children.  This dichotomy of  expectations in diabetic management could pose a threat to the parents’ ability to cope with an already complex situation, and emphasizes the need for nursing interventions based on an understanding of the impact of the management regimen on the day-to-thy lived experience as articulated by the parents.  Parents’ Perceptions of Caring for Infant Diabetes 31 Summary The literature review has indicated that parents and primary caregivers experience their child’s diabetes according to their own values, beliefs, cultural and socioeconomic backgrounds. Few studies are available to indicate the impact of the complicated daily management regimen on parental adaptation, parental roles and family functioning, and no studies are available to provide nurses with an understanding of the parents’ perceptions concerning their daily experiences of caring for a young diabetic child. Because parents are the most powerful subsystems in the family system and create patterns into which the children fit, it is important for the nurse to view the parents and the child in the context of the family. Since an infant or toddler under three years with diabetes is dependent on the parents for his/her very existence, the perceptions of these significant individuals must be understood. From the literature it appears that the diagnosis of diabetes in an infant or toddler results in multiple stressors for the parents. These stressors are related to the difficulties parents have in managing a child with diabetes. Aspects of concern to parents included insulin injections, blood sugar testing, the child’s diet, controlling blood sugar levels, dealing with hypoglycemic episodes, the amount of support available and the extent to which parents were required to make changes in lifestyle. Results of studies also suggested that the younger the child was at the time of diagnosis, and the shorter the duration of diabetes in the child, the greater the concern over injections, hypoglycemia and maintaining blood sugar control. The literature also indicates that parents respond to their child’s diabetes with distress and depression consistent with a period of mourning.  It also suggests that the initial degree of upheaval  experienced by the parents at the time the child is diagnosed could be a predictor of future distress and ability to cope. Diabetes, by virtue of its chronic nature and complex management regimen, requires parents to cope with ongoing, day-to-day stressors and concerns, and to make numerous adjustments in their lives.  Parents’ Perceptions of Caring for Infant Diabetes 32 Parents of infants and toddlers are concurrently coping with the stressors of early development issues for their child, and the building of parent/child relationships.  Inflicting pain on their young child through  insulin injections or blood testing was seen as a factor affecting parent/child relationships. Although the literature indicated that the management of insulin dependent diabetes in children of any age is a challenging and often frightening task, little has been written about the experience of families having an infant or toddler with diabetes. Studies did indicate that, in very young children, shared responsibility and open communication between both parents could be a factor in the achievement of good diabetic control for the child. However, no studies reviewed were directed toward the initial impact of the acuity of the illness at the time of diagnosis for the young child, or the effect this impact had on parental relationships or interactions. The literature did suggest that significant differences between the goals of medical personnel and the goals of parents in treating children with diabetes did exist. It also indicated that, in order for health care professionals to provide appropriate support and quality care for these families, a better understanding of the parents’ perceptions of their child’s condition is crucial. This study was designed to add to that understanding.  Parents’ Perceptions of Caring for Infant Diabetes 33 CHAPTER THREE Methodology  Introduction As indicated in Chapter One, the phenomenological paradigm of qualitative research theory and methodology was used as the method of approach to guide this study. Phenomenology is a qualitative, interpretive method that provides a particular way of focusing, thinldng and acting. It concentrates on the subject’s experience rather than concentrating solely on subjects or objects (Munhall & Oiler, 1986, p. 57). Phenomenology directs the researcher to study the human experience. In applying this approach, the researcher seeks to see things from the subject’s point of view, and thus to understand the meaning attached to the experience by the subject (Giorgi, 1975; Munhall & Oiler, 1986). This chapter describes the manner in which the method was interpreted and implemented in the selection of participants, ethical considerations, data collection and data analysis.  Selection of Participants Using phenomenology, participants in the study were selected on the basis of their experience with the phenomenon being studied and were considered “experts” in the area under investigation. A purposive sample was used for this study (Sandelowski et al., 1989). In purposive sampling, subjects are selected according to certain characteristics and knowledge each possesses; this ensures representativeness of the information required. The focal group sampled for this study was made up of parents who have young children under three years with insulin dependent diabetes. The phenomenon being studied was the lived experience of caring for such an infant or toddler as perceived by the parents. Consequently, sample selection was according to the subject’s ability and desire to provide information that contributed to understanding and insight in relation to the phenomenon being studied (Morse, 1986). Purposive sampling  Parents’ Perceptions of Caring for Infant Diabetes 34 rather than statistical subject selection is used in this method to ensure maximum variation of information obtained (Sandelowski et aL, 1989). Theoretically, the sample size should be determined by the quality, amount and completeness of the information offered by the subjects. Data collection and analysis occur simultaneously, and the need to further explore, confirm or refute the emerging themes or concepts determines the selection of the sample. Sampling and data collection cease when no new concepts are emerging from the data and theoretical saturation has occurred (Woods & Catanzaro, 1988). This occurs when the themes or elements appear complete, do not have gaps, make sense and have been confirmed (Morse, 1986). However, because of the length of the data-gathering interviews, and the detail of the complete description of data required in this type of study, sample size is usually small (Ornery, 1983). For this study, a sample of eight families was selected; eight mothers and five fathers from these families participated in the interviews. The sample was obtained through the Diabetic Program at B.C.’s Children’s Hospital.  Criteria for Selection The criteria for selecting parents who participated in this study included the following: 1)  The subjects were the parent(s) of an infant or toddler with diabetes.  2)  Each subject interviewed would form part of a two parent family.  3)  Both parents would be interviewed together, when possible, otherwise the mother of the young child with diabetes would be interviewed.  4)  The young child was under the age of three years at the time his/her diabetes was diagnosed, and was still under three and one half at the time his/her parent(s) were interviewed.  5)  A minimum of two months had elapsed since the time of diagnosis for the child.  6)  During the past two months or longer, the parent(s) had assumed full responsibility for the day-to day care and management of the child’s diabetic regimen.  Parents’ Perceptions of Caring for Infant Diabetes 35 7)  The subjects could communicate in English, were willing to be interviewed, and lived within the greater Vancouver area.  When considering the above criteria it should be noted that the seventh criterion was not met by one family selected for the study. This family moved Out of the greater Vancouver area shortly before the study commenced. However, because the infant with diabetes in this family had been diagnosed at a very early age (5 weeks), the researcher elected to travel the distance to the family’s new home in order to obtain the richness of data provided by those parents’ articulated experiences. It should be noted that only two-parent families were considered eligible for this particular study. Although it is recognized that many single parents care for children who have diabetes, the researcher was also cognizant of the fact that the lived experience of single parents could be very different from the lived experience of two parent families. Consequently, such differences might contribute to excessive variability in data. However, the researcher does recognize and advocate a need for further studies to explore the experience of single parents who are caring for an infant or toddler under three years with diabetes.  Selection Procedure Families were selected from a computer generated list of children under three years of age who  are followed by the Diabetes Program of British Columbia’s Childrens’ Hospital in Vancouver, Canada. The Program Director was aware and supportive of the proposed study and gave his permission for families meeting the criteria to be approached and enroled. Eligible parents were initially contacted by a member of the Diabetes Management Team, either during a clinic visit or by telephone. The purpose and objectives of the study were explained to them and a participant information letter (see Appendix A) containing detailed information about the study was subsequently mailed to each interested parent. Families wishing to participate in the study or requesting further information were asked to contact the Diabetic Clinic and leave their name and telephone number.  Parents’ Perceptions of Caring for Infant Diabetes 36 Because of her familiarity with the Diabetes Management Program, and with some of the families meeting the criteria for inclusion in this study, the researcher did not contact any potential subjects until they had made an independent choice to call the Diabetic Clinic for more information or to indicate their desire to participate in the study. This avoided any possibility of coercion on the part of the researcher. Once parents had responded and left their name and telephone number, they were contacted by the researcher. The study was then explained in more detail, questions were answered, and explanations of procedures for protecting human rights and maintaining confidentiality were provided. Appointment times for the first interviews were arranged with families who were eligible and willing to participate. Out of twelve families originally contacted by the Diabetes Management Team, two of the young children with diabetes no longer met the criterion of age. Although these children were under three years of age when diagnosed with diabetes, they were over three and one-half years when the parents were contacted by the researcher. Because these parents had indicated an interest in participating in the study, they were thanked sincerely for their interest, and advised by the researcher that they would be contacted again only in the event that insufficient families meeting the required criteria were found. Because of their enthusiasm and support, they were assured that should a similar study be conducted in the future, with criteria suitable to include their child, they would definitely be invited to participate. It was also gratifying for the researcher to receive several enquiries from the parents of other children with diabetes who had heard about the study and were interested in becoming participants. These parents were also thanked most sincerely for their interest and assured that they would be contacted in the future should further studies of this nature be considered. Of the remaining ten families who had initially been contacted by the Diabetes Management Team the researcher was unable to successfully contact one family despite several attempts, which included leaving messages with babysitters.  Although this family had originally indicated a willingness to  participate in the study, the researcher felt it was inappropriate to persist with attempts to contact them  Parents’ Perceptions of Caring for Infant Diabetes 37 once messages had been left to which the parents did not respond.  Each of the other nine families  selected by the Diabetes Management Team agreed to participate in the study. Initial interviews were arranged with seven of the families within a relatively short span of four to five weeks, and interviews with the two remaining families were arranged for later dates because of the Christmas vacation season which occurred during the interim. Prior to the first interview a written consent to participate in the study  was obtained from the parent(s) (see Appendix A). A copy of the signed form, which also explained the purpose and objectives of the study was left with the participating parent(s). Due to an unexpected snowfall it was necessary for the researcher to cancel the initial interview with one of the families.  During the telephone call to cancel and reschedule this appointment the  researcher and the mother of the young child with diabetes spoke at length. The mother shared many of her experiences of caring for her child during this telephone conversation, and addressed several of the initial research questions. Field notes were recorded by the researcher. Unfortunately the rescheduled interview with this family was also cancelled at the last minute due to a serious accident incurred by an older sibling in the family. During the ensuing telephone conversation the mother again shared many of her daily experiences of caring for her young diabetic child, as well as describing the added stress of caring for a teenage accident victim. Because of the family circumstances the researcher and mother agreed that it was not appropriate to reschedule another interview at that time. However, the mother suggested that any of her described experiences articulated during the telephone conversations could be used as data for the study if deemed appropriate. Although the researcher kept field notes, this family was not included in the demographics for the study and the mother’s experience was not used as part of the data collection or analysis. However, some of the mother’s significant statements, captured and recorded in the field notes, were used for reference and interest by the researcher when confirming and clarifying emerging themes and concepts from the participating parents’ described experiences.  Parents’ Perceptions of Caring for Infant Diabetes 38 Characteristics of the Participants A total of eight families participated in the study. Each was a two-parent family and each had a young child who had been diagnosed with insulin dependent diabetes before the age of three years. All the families were Caucasian although they came from a variety of cultural and ethnic backgrounds. The parents could communicate in English and were willing to be interviewed and to share their experiences. Most of the parents were Canadian born, although one father emigrated from Scotland at the age of 20 years, two parents were of Italian background, two of Jewish heritage, one of Eastern European descent, one of Scandinavian origin, and several came from families with roots in Great Britain, the United States and Australia.  The socioeconomic status, educational backgrounds, style of living and geographical  location varied among families. Three families lived in Vancouver, three in the greater Vancouver area and two in rural communities. Six families lived in private single family homes, two lived in town-house or apartment complexes. The occupations of the parents also varied. Table I provides a synopsis of the demographic data for the families participating in the study. However, the following discussion provides more detailed information on the young children with diabetes, their siblings and their family history of diabetes.  Young Children with Diabetes The infants and toddlers involved in this study ranged in age from 5 weeks to 2 years, 5 months at diagnosis, with an average age of 17 1/2 months at the time of onset of diabetes. The length of time since diagnosis ranged from 5 months to 2 years, 2 months, with an average time since diagnosis of 13 1/2 months. All the children except one were still under 3 years of age when their parents entered the study and were interviewed for the first time.  One child was just 3 years. Two additional children  reached their third birthday during the course of the study.  •  •  • •  •  •  Three mothers were teachers. One mother returned to teaching six months after the child’s diagnosis. Two became full-time homemakers following the child’s diagnosis. One mother worked in advertising, but became a full-time homemaker following the toddler’s diagnosis. One mother was a doctor’s receptionist. One mother was a registered nurse. Both returned to part-time work several months after their child was diagnosed. One mother was a librarian and returned to full-time work following the toddler’s diagnosis. One mother was a full-time homemaker.  MOTHERS’ OCCUPATIONS  •  •  •  •  •  •  •  •  Accountant Librarian: World Health Organization Printer: daily newspaper; night shift Dentist Shipping and handling; night shift Bus driver Boat builder and designer Writer and editor in advertising  FATHERS’ OCCUPATIONS  • •  29 months •  •  23 months  25 months  •  •  •  6 months  •  22 months  •  •  •  5 weeks  •  • •  15 months 19 months  •  •  Age at diagnosis  6 months  11 months  5 months  22 months  14 months  26 months  7 months  17 months  0  Time since diagnosis  INFANT OR TODDLER WITH DIABETES  TABLE I: FAMILY DEMOGRAPHICS  Parents’ Perceptions of Caring for Infant Diabetes 40 Siblings In five of the families participating in the study the young child with diabetes was the only child in the family. However, this changed in one family in which the mother delivered a baby girl several weeks after the study commenced. In another family the mother became pregnant with her second child during the course of the study. In the other three families two of the infants or toddlers with diabetes had younger siblings. One sibling was born just two weeks before the researcher’s first interview with the parents. Another sibling was a year old and was born prior to the onset of diabetes in her two year old brother. In one family the young child with diabetes had a five year old sister. No family in the study had more than two children.  Family History of Diabetes Of the eight sets of parents participating in this study only one family had no known history of diabetes. One family reported a distant maternal great aunt who developed Type II diabetes in old age. However, little significant connection is made between this type of non insulin dependent diabetes and early onset Type I (insulin dependent) diabetes in children (Tie, 1989a).  The mother in this family  reported the experience of giving insulin injections to a diabetic pet owned by her parents. In another family the mother developed gestational diabetes during her pregnancy with the toddler who later developed diabetes. A distant, elderly, paternal cousin was also reported to have Type II (non insulin dependent) diabetes by this family. In the fourth family a maternal great grandfather was diagnosed with insulin dependent diabetes, and the mother participating in the study experienced episodes of hypoglycemia. In the fifth family the maternal grandfather developed Type II diabetes initially but became insulin dependent at the age of 50 years. The remaining three families each reported a history of Type I diabetes with early onset in close extended family members. For example, in one family a paternal uncle (father’s brother) was diagnosed at 13 years of age. In another family a paternal first cousin (father’s  Parents’ Perceptions of Caring for Infant Diabetes 41 brother’s child) developed Type I diabetes at 12 years of age. In the final family two maternal first cousins (mother’s brother’s children) were diagnosed at 2 years and 12 years respectively. The maternal grandmother in this family also had Type I diabetes. This section has described the selection of participants for the study, and provided some demographic data on the families selected. These demographics are useful in that they provide insight into the environments from which the parents perceived their experience. Past experience with diabetes in a close family member, particularly Type I diabetes, appeared to have some impact on the parents perceptions of diabetes in their own infant or toddler, and this will be described later during discussion of the analyzed data.  Procedures for Protecting Human Rights Prior approval for this study was obtained from the University of British Columbia’s Screening Committee, and British Columbia’s Children’s Hospital’s in-Hospital Research Review Committee. Rights of the participants were protected by: a) providing a full description and explanation of the study and the researcher’s expectations to all participants prior to obtaining their written consent; b) assuring parents that non-participation in the study or withdrawal from the study would in no way jeopardize their child’s care, or the parents’ relationship with the Diabetes management team; c) reminding parents of their right not to participate or their right to terminate an interview or erase a tape at any time; d) informing participants of anonymity and confidentiality of data, and that taped data would only be shared with members of the thesis committee, and would be erased immediately following completion of the study; e) informing participants that no names or identification would appear in any written reports; f) assuring parents that the study involved no expected risks for themselves or their child; g) obtaining written consents to participate from all subjects; h) and explaining the potential benefits and outcomes of the study  —  such  as nurses better understanding the parents’ perspective. In the event that unmet needs were identified  Parents’ Perceptions of Caring for Infant Diabetes 42 during the interviews, the researcher arranged for counselling or education sessions for parents requesting these services. Time was also set aside for answering questions following each interview.  Researcher’s Role Because of the in-depth method of data collection used for this study, the researcher’s role was also explained to participants before the first interviews were conducted.  The major assumption of  phenomenology is that knowledge of social facts is best attained when the researcher gets inside the natural setting and attempts to understand the phenomenon as the subjects do. Phenomenology intertwines the observer with the phenomenon (Duffy, 1985).  Because the researcher had a specific interest in  families with children who have diabetes, and had some expertise and possible preconceived ideas regarding the phenomenon to be studied, the practice of bracketing (Munhall & Oiler, 1986; Sandelowski et al., 1989) was used. Instead of using a priori or preconceived ideas about the phenomenon to be studied, the researcher sought meaning of the phenomenon from the participants’ perspective, and data were collected and analyzed in the natural language of the subjects (Duffy, 1985).  Data Collection Procedure Although the process of data collection will be discussed separately in this section, it should be noted that no clear line between data collection and data analysis generally occurs in qualitative research (Munhall & Oiler, 1986). For this study the two processes were intertwined, and data was analyzed throughout the data collection period. Data were collected through a series of in-depth, unstructured or minimally structured interviews (Sandelowski et al., 1989), conducted in the privacy and comfort of the participant’s own home. Nondirective trigger questions were used, for the most part, in order to elicit “informant-generated questions” (Evaneshko & Kay, 1982, p. 52). However, a set of sample questions was developed for the purpose of  Parents’ Perceptions of Caring for Infant Diabetes 43 providing a loose structure for the initial interview (see Appendix B for sample questions).  These  questions were constructed using the popular arena of Kleinman’s (1978) health care system’s explanatory models as a guide. This arena encompasses the family context of sickness and care, and includes the parents’ beliefs, choices, decisions, roles, relationships, interactions and subjective experience of caring for their young child with diabetes. The content of the questions arose from both the available literature reviewed in Chapter Two, and from the researcher’s prior experience of working with diabetic children and their families. The sample questions (Appendix B) served only to initiate interaction with the parents and not all questions were asked of every participant. Indeed, the researcher found that once rapport was established with parents and data collection had begun, the participants in this study required little prompting in order to paint a vivid, verbal picture of their perceived experienced During the initial interviews, the researcher attempted to create an environment of mutual respect and understanding, where the participants felt comfortable and openness and trust was quickly established. Taking a small gift for the infant or toddler with diabetes and any siblings helped the researcher to develop a friendly and trusting relationship with the young children in the family. This also initiated a short period of conversation and “play time” that reduced any stress or apprehension on the part of the parents. Each of the families visited by the researcher offered tea or coffee and refreshments prior to commencement of the interview. This appeared to have been planned in advance and formed an important aspect of the family’s welcoming the researcher into their home and into their lives. During this period of socializing and sharing, the researcher collected demographic information and addressed any questions or concerns regarding the study. Parents spoke freely during this interlude and shared many experiences that were not always repeated during the taped interviews.  Parents’ Perceptions of Caring for Infant Diabetes 44 Because these parents all had small children and excessive demands in their life, interview times were limited to approximately one hour.  However, since the researcher was familiar to most of the  families participating in the study, time was also set aside to answer questions and observe parents giving insulin or performing blood glucose monitoring on their child if the family so requested. The child’s co operation or problems during these procedures was a source of pride or concern for these parents, and data collected from interactions and explanations during these question or observation periods added depth and richness to the parents’ accounts, and were captured in field notes. Creating a comfortable environment was an important aspect for these parents, who had openly expressed their desire to share their experience. For example, the first interview with one family was conducted just two weeks following the birth of the second son. The father had taken time off from work to participate in the interview, because he felt it was important not only to support his wife, but also to provide a father’s perspective. When the researcher arrived at the home, both parents were exhausted, but fairly relaxed. The mother had just nursed the new baby, who was sleeping, and the father had settled the two-year-old with diabetes down for a nap. However, prior to beginning the taped interview the new baby awoke crying. This caused considerable stress and anxiety for both parents, who had planned so carefully for the uninterrupted interview time, and expressed genuine concern about the disruption. To ease the situation, the researcher offered to comfort the crying infant. The baby soon settled and slept in the researcher’s arms throughout the interview. The father took charge of operating the tape recorder and the mother relaxed enough to share her experience. During the course of the interview, the toddler with diabetes awoke. It was necessary to stop the tape recorder while the parents performed a blood test and provided a snack for their child. The toddler then settled on his mother’s knee and played with the new toy brought by the researcher until the interview was completed. Similar incidents occurred in other families participating in the study. Infants awoke from naps or required attention from their parents during the course of the interview. In each instance, the parents  Parents’ Perceptions of Caring for Infant Diabetes 45 expressed concern about the disruption to the interview, and explained how important they felt it was to share their experience. The researcher took time to reassure the parents, and used the interruptions as an opportunity to observe interactions between the parent and child, and to better understand how the child’s needs were met. These incidents confirmed some of the complexities and multifaceted experiences of caring for a young child with diabetes, as articulated by the parents in the tape-recorded interviews. The first interview for all families was initiated by the question, “What is it like for you, as a parent, to have a young child under three years with insulin dependent diabetes?” This question was usually followed by the researcher asking, “How would you describe your experience of caring for such a young child with diabetes?” The informant’s own dialogue then generated the next question. However, non-directive trigger questions such as “Why do you think this might be?”, “Can you tell me more about this?”, “Can you describe why you might feel this way?”, or”Could you describe this further for me?” were used either to clarify or confirm what parents had said, or to further the researcher’s understanding of a particular aspect of the described experience. Reflective statements ensured that the accounts were validated as the parents’ stories unfolded. Sample questions (Appendix B) were utilized as a guide to facilitate exploration of particular aspects of the parents’ experience, if those aspects were not discussed spontaneously during the parents’ accounts. Analyzed material from one interview also influenced subsequent data collection processes. For example, as the data collection phase progressed, areas of concern for the parents were added, deleted or confirmed. Themes that emerged as significant from the perspective of one informant family would be used to facilitate further exploration within those themes during subsequent interviews. The data were constructed through a series of 14 interviews conducted with the parents of eight families over a five-month period. Eight mothers and five fathers described their experience. When both the mother and father participated in the study, they were interviewed together. Some of the unanticipated  Parents’ Perceptions of Caring for Infant Diabetes 46 advantages of these joint interviews, such as the parents’ understanding of each other’s feelings and concerns for the first time, will be described in depth during presentation of the analyzed data. Interviews were tape-recorded. Each lasted from 45 minutes to 1½ hours, and a total of 15 hours, 10 minutes of dialogue were tape-recorded and transcribed. However, many of the researcher’s visits with the families extended beyond the taped interview time, and total contact time with the families approximated twenty-five hours. As previously described, many parents shared significant facets of their experience prior to the tape recorder being turned on. Others remembered significant experiences they had forgotten to share once the tape recorder was turned off. Many parents provided extra information just as the researcher was leaving the house. As a parting gesture, these parents would say, “You know, I forgot to tell you all about this part of our experience, and maybe it is important to your study.” The substance of these conversations was recorded in field notes made by the researcher immediately after leaving the interview. Although Field and Morse (1985) suggest that the presence of a tape recorder might affect the participant’s ability to interact normally during interviews, this did not appear to be a deterrent for the parents in the study. Parents were told in advance that interviews would be tape-recorded and each gave their consent for this mode of data collection. Two mothers did explain that they had never participated in a tape-recorded interview before, and requested a replay of part of the interview in order to hear their own voices. These parents seemed surprised by the ease with which they shared information, and by their lack of inhibition in the presence of a tape recorder once the interview had begun.  Another mother  explained that she had done a lot of taped interviews with medical students and consequently felt comfortable with the procedure. She explained it this way: “Well, you know, I have done a lot of these types of interviews with medical students so that they can practice interviewing skills and listen to themselves afterwards. I do this through a friend. However, I’ve never talked about ‘G’ [toddler with diabetes] before, so this interview will be very good for me, very therapeutic. It’s good to talk about your own child.”  Parents’ Perceptions of Caring for Infant Diabetes 47 Most families in the study appeared to forget all about the tape recorder once the interview was in progress. There were no requests either to stop the tape recording or to erase any portion of the conversation. When parents were informed that the tapes would be erased immediately following the study, many of the participants requested a copy of the interview before it was erased. These parents wanted to retain the taped conversations, which they felt would be interesting to listen to later. They wanted to compare their early experience with their experience in the future. Some parents thought the young children with diabetes might benefit from listening to the tapes when they were older. None of the parents suggested that the presence of the tape recorder had any adverse effect on their ability to discuss their experience. In one instance, a mother did require reassurance that the tape would not be listened to by hospital staff in the emergency and intensive care units. This mother had vividly described incidents that occurred when she was experiencing stress and emotional breakdown at the time her toddler was diagnosed. She had blamed hospital staff for much of her stress, and explained that she was not in total control of her emotions at that time. During the course of another interview, a mother described an extremely sensitive experience shared by her husband and herself immediately prior to, and just following the diagnosis of diabetes in their young child. Because her husband was not present during the taped interview, this mother asked that the information she had provided be used only with the strictest confidentiality and anonymity. She tearfully confided that her husband might not feel comfortable about the intimate information she had shared, but that this information might help nurses to better understand what parents go through. In some of the interviews where both parents were participating, conflicts due to differing values, goals and expectations of the parents were often exposed and discussed. In these instances, the parents generally asked the researcher if other participants in the study experienced similar frustrations, anger and conflicts.  Many parents used the forum of the interview to better  understand each other’s perspective, and their verbal interactions added to the depth and richness of the data.  Parents’ Perceptions of Caring for Infant Diabetes 48 Most participants in the study described how important and how therapeutic it had been for them to share their experiences. As one father explained: “It’s the first time we’ve really talked about this, about how we felt, about how we feel now. It’s like a big burden has been lifted because someone bothered to listen to our story, and someone brought us together to listen to each other. I think we have benefited more than you [researcher], we understand each other better. It’s been so therapeutic, so enlightening, I hope we provided you with the information you needed too!” Other parents were concerned about their ability to provide the right information for the study. One parent asked: “Is this what you want to hear? Is this really important? Am I describing our lived experience? It’s important to me as a parent, but is it what you are looking for?” When assured by the researcher that this was indeed important and interesting information, the parent relaxed and explained: “You see, most people are not really interested in how we manage, not anymore anyway, they tend to back off, it’s too complicated for them, they are afraid of everything we have to do so it’s good to have someone to listen, it’s good to be able to share our experience and to know it might help some other families too”. ...  Another valuable source of data was dialogue shared with parents over the telephone during the course of planning and arranging interviews. Significant facets of their experience were often described by parents during these conversations. Some parents also used this method of communication to call and describe a new experience that had not been discussed during a tape recorded interview. Telephone dialogue was also used by the researcher to clarify, confirm and validate beginning conceptualizations with the parents of one family when a second interview could not be arranged. Field notes were recorded following all telephone conversations. The original intent of the researcher was to conduct first interviews with all eight families in the study prior to beginning any second round interviews. This would provide the opportunity to look for common themes across all the parents’ accounts before proceeding with clarifying, expanding and  Parents’ Perceptions of Caring for Infant Diabetes 49 validating beginning conceptualizations. However, sequencing of interviews deviated slightly from this initial plan. First interviews were conducted with six of the eight families over a relatively short time span of four to five weeks. However, due to an intervening Christmas and New Year vacation session, interviews with the two remaining families were arranged for dates two or three months after completion of the first six interviews. During this interim, analysis of data from the completed interviews provided the researcher with some beginning conceptualizations of the parents’ articulated experiences. This time of reflection also resulted in a more specific focus for the investigation, and second round interviews used to clarify, expand and validate emerging themes, were conducted with two of six families already interviewed. Although this process of data collection would appear to exclude the two remaining families from contributing to the data that shaped the researcher’s beginning conceptualizations, this was not truly the case. In fact, the depth and richness of these parents’ accounts complemented in every way the accounts provided by the first six families interviewed for the study. Establishing rapport and interviewing the parents of these two families for the first time so late in the data collection ultimately proved to be an advantage. While relating their own vivid stories that contributed to the variability in data, these parents also spontaneously expanded on and validated many of the beginning conceptualizations of the researcher. Their accounts also clarified themes emerging from significant statements made by other parents in earlier interviews. Although unplanned, the fortuitous timing of these parents’ accounts lent credibility to the initial interpretations and tentative analysis of previously collected data. They also clarified and guided the open minded, enquiring approach required by the researcher going into the second round of interviews with the remaining families.  Parents’ Perceptions of Caring for Infant Diabetes 50 Analysis of Data As previously described, data analysis intertwined with the data collection process, and the two processes ran concurrently until the data collection was complete. During this time, data were categorized and clustered into related concepts and themes. However, relabelling and reorganizing of concepts and categories occurred many times throughout the analytical process. Once data collection was complete, the analysis entered a final stage of bringing together and confirming previously developed ideas (Sandelowski, 1986). Throughout this study the researcher also utilized the techniques of bracketing and reduction mentioned earlier in this chapter. Bracketing involves setting aside what the individual thinks she or he knows about the experience in order to achieve reduction (Munhafi & Oiler, 1986). Reduction is a process of choosing to perceive from the participant’s vantage point.  “It is a reflective turn back toward  experience with a conscious effort to bracket what is known, and a creative process of intuiting and analyzing human experience” (p. 82). Data from the parents’ articulated experiences were subjected to the following treatment. Tape recorded interviews were transcribed verbatim. Because the researcher transcribed all but one interview herself, she quickly became familiar with every facet of the data. Audible cues captured on the tapes but not transcribed were noted by the researcher, and taped interviews as well as transcripts were shared with members of the thesis committee. Transcripts from each interview were subjected to phenomenological analysis using Colaizzi’s steps as outlined in Munhall and Oiler (1986). Giorgi (1975), who described central themes, structure and style, also influenced analysis and interpretation.  Parents’ Perceptions of Caring for Infant Diabetes 51 Stage I Analysis 1) All transcripts were read in their entirety in order to acquire a feeling for the subject’s descriptions. Audible cues captured on the tapes were considered during the reading of the transcripts. 2) A second and third reading were conducted and significant statements about the phenomena were extracted, and categorized.  Stage II Analysis 3) Meaning units were then formulated from each of the significant statements. The meanings arrived at were inextricably connected to the original descriptions of the parents. 4) Clusters of themes were organized from the aggregate formulated meanings allowing the emergence of themes common to all parents’ descriptions.  These clusters of themes were then validated and  discrepancies between and/or among clusters were noted. The researcher returned to the subjects at this point for a second interview to verify meanings or elements, and to clarify, expand and validate the researcher’s conceptualizations. 5) Significant statements of parents captured and recorded in field notes were also used for reference by the researcher when confirming and clarifying emerging themes and concepts from the parents’ described experiences.  Stage III Analysis 6)  An exhaustive description of the phenomenon was then formulated through integrating and synthesizing, the results of the analysis. The exhaustive description, including verbatim quotes from the participants’ accounts, summarized the essential structure of the lived experience of parents who are caring for a young child under three years with diabetes. A summary of the exhaustive description was provided.  Parents’ Perceptions of Caring for Infant Diabetes 52 7)  The validation process continued throughout the entire data collection and analysis phase.  8)  Because it was the researcher’s intent to present data which enhance understanding of the shared experiences of parents participating in the study, analysis involved constant comparison among the participants’ accounts.  Auditability and Confirmability The conventional scientific criteria of rigour (reliability and validity) used in quantitative research is not applicable to a qualitative design.  Instead, the criteria of rigour for achieving credibility and  ensuring the truth value and applicability of a qualitative study is described as confirmability (Sandelowski, 1986). Several measures to ensure rigour of this study were adopted. Auditability was a criterion of rigour. Auditability is achieved when the researcher leaves a clear “decision trail” concerning the study from its beginning to its end. This involved the members of the thesis committee clearly following the “decision trail” left by the researcher, and ultimately arriving at similar or comparable meaning units and themes using the same data, and understanding the researchers’ perspective and situation (Sandelowski, 1986). Auditability is specifically achieved by a clear description, explanation and justification of how the researcher became interested in the subject matter of the study, how the researcher viewed the topic being studied, the specific purpose(s) of the study, how subjects and pieces of data were included in the study, how the data were collected, the impact that the researcher and participants had on each other, the nature of the setting(s) in which the data were collected, how data were reduced, transformed, interpreted, and presented, and the specific techniques used to determine the truth value and applicability of data (Sandelowski, 1986, p. 35). Auditability was considered when writing the final report. Other strategies used to achieve credibility and fittingness of the study included prolonged contact with the parents, during which time continuous validation of data was sought. These strategies included  Parents’ Perceptions of Caring for Infant Diabetes 53  checking with participants in the study and with experts on the thesis committee for representativeness of data and fit between themes or meaning units, and seeking advice and guidance from these experts on the evolving themes and on analysis and interpretation of data. Confirmability, which is the criterion of neutrality in qualitative research, was sought when auditability, creditability and fittingness of the study had been established (Sandelowski, 1986, P. 35). Internal validity, or “fittingness” with subjects’ accounts occurred when the results of the study presented a faithful description of the experience of caring for an infant or toddler with diabetes that could be immediately recognized by the parents as part of their own experience (Sandelowski, 1986, p. 35). An interesting example of this “fittingness” occurred when parents from four different families in the study independently described caring for their toddler with diabetes as caring for 1½ or more children. Each parent described their need to meet the demands of a normal toddler, plus their added responsibility of handling the complexities of the diabetic regimen for their child. Other parents in the study immediately recognized and validated this description as part of their own experience.  Summary The phenomenological method of qualitative research used to study the experience of parents caring for an infant or toddler with diabetes was described in this chapter. A brief introduction to the method was provided. This was followed by a description of how participants for the study were selected. Criteria for selection, selection procedures, and demographic information used to describe the characteristics of the participants were included. Procedures used for protecting human rights were described in this chapter, and the role of the researcher was explained. The processes of data collection and data analysis were discussed in detail. Although it was noted that these two processes intertwine and occur concurrently in qualitative research, each was described separately to enhance clarity of the methodology. An in-depth description of the  Parents’ Perceptions of Caring for Infant Diabetes 54 process used for conducting the taperecorded interviews was provided. Methods used for transcribing the interviews, interpreting results, and clarifying, validating and expanding concepts and themes were discussed. Auditability and confirmability, used as criteria to ensure rigour of the study, were described. The chapter concluded with an example of “fittingness” of the results. This occurs when findings of the study present a faithful description of an experience that can immediately be recognized by parents as part of their own experience.  Parents’ Perceptions of Caring for Infant Diabetes 55 CHAPTER FOUR Findings: Parents’ Perceptions of Their Experience  Introduction This chapter will present the parents’ accounts of their experience of caring for an infant or toddler under three years with insulin dependent diabetes mellitus. Because these infants and toddlers generally present with an abrupt progression of acute diabetic ketoacidosis, then face a lifelong chronic condition, the impact of both the initial and long-term effects of their child’s diabetes were described by the parents. Each parent presented their experience in a unique way, and each made a special contribution to the data by offering a different perspective of the experience according to family circumstances, beliefs, values and personal philosophies.  Each infant and toddler with diabetes was also unique, with his or her own  characteristics, personality and individual ways of dealing with the situation. Thus, a kaleidoscope of emotions and realities were described by the parents. However, despite considerable variability in data, certain themes did occur repeatedly across all the parents’ accounts. Because it is the intent of this study to present data which enhance understanding of the shared aspects of the parents’ experience, this chapter will be organized according to common or unifying themes that emerged from the parents’ accounts. Experiences described by the parents will be organized into three distinct phases, which are linked to a timeframe and were identified by the researcher as the data were analyzed and compiled.  Each phase will be organized into three major conceptual categories  containing common themes extracted from significant statements made by the parents during the interview process. The three distinct phases and three conceptual categories in each phase will provide a structural framework for the parents’ accounts, and will be described in more detail later in this introduction. There is an old saying which proclaims that “it is impossible to truly understand another person’s experience until you have walked a mile in their shoes”. This study was designed to explore and to  Parents’ Perceptions of Caring for Infant Diabetes 56 describe the parents’ experience, and to provide insight and understanding into the phenomenon from the parents’ perspective. Consequently, this chapter presents data perceived from the parents’ vantage point and, as such, provides the means through which to “walk a mile or more in the parents’ shoes.”  Phases of the Experience From the articulated experiences of the parents, related in the tape-recorded interviews, it became apparent to the researcher that families go through three distinct phases in the process of coping with diabetes in their infant or toddler. These phases appear linked to a series of events occurring in the parents’ lives, and follow a timeframe described by all the families interviewed for the study. The first phase of the experience began with the initial crisis related to the diagnosis of diabetes in their infant or toddler. This phase included the acute onset of diabetes, the young child’s admission to hospital, the parents’ experience in emergency departments and intensive care units, and the events surrounding learning how to manage their young child’s diabetes in the hospital setting. This emotionladen and vividly recalled sequence of events marked the beginning of the parents’ perceived experience and was the point at which most parents began their accounts. The second phase of the experience began when the infant or toddler was discharged from hospital and the parents began the task of caring for their young child with diabetes at home.  The parents’  perceptions of their experience of coping with this often stressful, frightening and frustrating situation spanned a period of six to seven months post-diagnosis, and for some families lasted even longer. Parents described this time as being one of strictly surviving rather than living. A time when they felt riveted to a totally inflexible regimen that ruled their very existence. Only the passage of time, and the parents’ ability to gain knowledge and understanding of their child’s condition, allowed them to move into the third phase of the experience.  Parents’ Perceptions of Caring for Infant Diabetes 57  The third phase was related to the process of adapting and incorporating the infant’s or toddler’s diabetic management regimen into family life over the long term. Parents described this phase as being less stressful. They had learned to relax and to incorporate vigilance and flexibility into their child’s daily care.  Increased knowledge and understanding, and familiarity with their child’s diabetes, served to  empower parents and allowed them to take control. However, new stressors and recurring or sustained struggles were vividly described by parents, and these evoked emotional responses and reactions that had to be dealt with. Increased confidence in their own abilities, teaching others and accepting the realities of their child’s long-term condition were all strategies that helped parents manage their situation. Because the beginning of this third phase of the parents’ experience was not as clearly defined as the beginning of either phase one or two, an explanation of the transition from the parents’ perspective will be provided in the introduction to this phase. Significant changes in attitude that justify the parents’ belief that they had moved into a new level of understanding and acceptance of their child’s condition will be described. Much of the variability in data from the parents’ accounts can be directly linked to events such as the length of time since diagnosis for the young child with diabetes, or the age of the infant or toddler when the parents were interviewed. One of the fortuitous advantages of collecting data from parents over a five-month period was the ability of the researcher to identify, then validate and confirm the presence of these three distinct phases in the parents’ experience. Interviewing two families for the first time late in the data collection process (see Chapter Three) also helped the researcher to clarify and expand on this concept.  These parents described their experience of recently and intuitively moving into the third,  adaptation phase of caring for their young child with diabetes. However, they could also vividly recall, relate and compare their earlier experience during the first two phases. The three distinct phases linked to a timeframe and a series of events occurring in the parents’ lives will be discussed consecutively in this chapter, as conceptualized facets of the described experience.  Parents’ Perceptions of Caring for Infant Diabetes 58 Conceptual Categories Significant to Each Phase of the Experience Three major conceptual categories which seem most significant in terms of how parents understand and describe their experience have been termed “perceived stressors”, “reactions and emotional responses to identified stressors” and “coping strategies employed by parents to manage the situation”. These three broad conceptual categories span all three phases of the parents’ articulated experience, and will be introduced as each phase is presented. When describing the perceived stressors that impacted on their lives due to their infant’s or toddler’s diabetes, the parents also identified their reactions and emotional responses to these stressors and the strategies employed to deal with stress and to manage the child’s condition.  Thus, the parents’  accounts described the complex and multifaceted nature of caring for such a young child with diabetes. The perceived stressors, the responses to these stressors, and the actions taken to manage the situation were interwoven through the parents’ accounts and were related to their individual perception of the experience. Although each family articulated their experience in a unique way, it is the intention in this chapter to present data which enhance understanding of the shared experience of all families in the study. Consequently, the researcher has extracted significant statements from each parent’s story and regrouped these statements into themes which are composites of data from the combined experiences of all families. Each theme will be organized under one of the three major conceptual categories identified, and then placed within the appropriate phase of the parents’ experience. Because the three distinct phases of the parents’ experience occur on a continuum, several prominent themes persist to one degree or another throughout all three phases. Many of the stressors identified by parents involved their struggles with giving injections, getting the child to eat, attempting to stabilize their infant’s or toddler’s blood sugar and dealing with the constant fear of hypoglycemia. These and other commonly-recurring themes from the parents’ accounts will sometimes be described as  Parents’ Perceptions of Caring for Infant Diabetes 59 a continuum through two or more phases to avoid repetition. When this occurs, an explanation will be provided in the researcher’s narrative. In this chapter, each phase of the parents’ experience will be introduced and summarized, and the themes within each conceptual category will be identified and explained. Verbatim quotes from the parents’ accounts will be used to illustrate the researcher’s narrative under each theme. An outline depicting the framework of the themes organized from the parents’ accounts can be found in Appendix C.  Capturing Emotions It has been suggested that the written word can never fully capture the emotion expressed during a spoken interaction. The researcher admits that audible cues provided by parents during the tape-recorded interviews will be difficult to capture in this presentation of their accounts. During some interviews parents wept when attempting to describe particularly painful or disturbing experiences. Other parents were often close to tears or displayed emotions of anger, frustration, sadness, or helplessness in facial expressions.  Often periods of silent reflection were required during interviews as parents calmed  themselves or collected their thoughts.  Some parents required comfort and reassurance from the  researcher. Others appeared very calm, relaxed and self-assured. In presenting the parents’ stories, an attempt will be made to provide a true and vivid verbal picture of the shared experiences. Although the initial crisis involving the diagnosis of diabetes in the infant or toddler spanned a relatively short period of time, it was recalled and described as an acutely stressful experience by most of the parents in the study. Consequently, the parents’ accounts will begin here.  Parents’ Perceptions of Caring for Infant Diabetes 60 Phase One: The Diagnosis of Diabetes Because the infants and toddlers involved in this study were so young when they developed diabetes, the time of diagnosis and the initial crisis of the hospital experience was vividly recalled by most of the parents. Indeed, because of the relatively short time since the child’s diagnosis for most parents in the study, the recent experience of events culminating in their child’s hospitalization were recounted with deep emotional reactions. It appeared necessary for all parents to start their accounts at the beginning in order to justify their later responses and actions. Despite unique and individual ways of describing their experience, certain themes remained consistent across all parents’ accounts. Although these themes can be partially organized under the three conceptual categories of “perceived stressors”, “reactions and emotional responses to perceived stressors”, and “coping strategies employed by parents to manage the situation”, it must be noted that some overlap and intertwining of conceptual categories and themes occurs when presenting the parents’ accounts of this phase of their experience. Because the critical time involving diagnosis of diabetes in their young child resulted in disequilibrium, extreme anxiety and disorganization for most families, the parents’ initial reactions and emotional responses to the perceived stressors were inextricably interwoven throughout their accounts. Consequently, many of the parents’ perceived stressors and emotional reactions to these stressors will be discussed simultaneously throughout both conceptual categories. Parents also described some of their initial behaviours as reactions to shock, exhaustion and feeling totally overwhelmed by the situation. Consequently, although some of these behaviours could also be identified as coping strategies used by parents during this initial phase of their experience, they will be presented as reactions or responses to perceived stressors for the purpose of this study.  Parents’ Perceptions of Caring for Infant Diabetes 61 Perceived Stressors The initial stress for parents began with the diagnosis of diabetes in their child. Because most infants and toddlers generally present with an abrupt progression of acute diabetic ketoacidosis, they are extremely ill when first admitted to hospital.  Consequently, the experience of the diagnosis and  hospitalization for the child was extremely stressful for all parents in the study, and many parents described these experiences as devastating. The events that created the most stress for parents were receiving the diagnosis, the hospital experience and learning the diabetic management regimen. Common stressors related to these events included the acuity of their child’s initial condition, the multiple invasive procedures required, the shock of a lifelong chronic condition in their child, and the complexity of the management regimen required to maintain their child’s life and health. Parents’ descriptions of a buildup of stressors also reveals the magnitude of the stress experienced by these families. Receiving the diagnosis Initial reactions to their child’s diagnosis were generally those of shock, disbelief and devastation. The following quotes illustrate the impact of the diagnosis on parents. One parent who had never heard of diabetes in a child described his experience as frightening and one of absolute disbelief. He explained: D: Well, we were just we were well, it was the disbelief. happened to my son. It was frightening. ...  ...  NOTE: In the following accounts, M  =  mother (mom)  D  =  father (dad)  R  =  researcher  When initials or names are cited in the accounts, they are fictitious.  I didn’t want this to have  Parents’ Perceptions of Caring for Infant Diabetes 62 Other parents described how their life had been turned upside down, and feelings expressed were those of shock and being stunned. The mother began the description this way: M: I want you to know that when ‘R’ was diagnosed, I was absolutely devastated. I couldn’t face it all. D: You know it falls like a thunderbolt out of the sky, right onto your house DIABETES you think (mom taking up the sentence) -  -  and  ...  M: Why me! Oh! Why him, why us? Oh God! Why? D: Yes, it’s like this sudden shock. One day everything is going along smoothly, and the next day everything was upside down and we were standing on our heads our world changed. ...  M: We were totally stunned. Variability in parents’ perceptions and reactions to the diagnosis in their child resulted from their past experience with diabetes. For some parents, their past experience helped them to be more calm, while for others, their past experience caused them to be more frightened, as the following parent relates. R: You said you had an inkling that ‘R’ had diabetes. Do you know someone else who had a child with diabetes then? M: Yes, ‘H’s [dad’s] niece who was visiting from Australia. We had watched the insulin and the blood testing and everything, and also the worry that the parents had. I remember one day she wandered off and was moody and irritable before she left and the parents were frantic. We didn’t fully understand then, but we could never forget their panic. Never! When we heard the diagnosis for ‘R’ we felt the same panic, the same fear. ...  Other parents had no experience with diabetes, which in some instances led not only to a delay in diagnosis but also to the parents being very frightened, as the following quote indicates: M: It was awful really. From January to March ‘G’ had been irritable, dragging around, hanging around me, miserable, and I was getting so angry with her. I thought it was the “terrible two’s” coming early because she wasn’t even two And I used to get mad I thought it was me that was having a breakdown, that I couldn’t cope, that I needed therapy. I almost went to the doctor for myself. I didn’t once think it was ‘G’ who was sick. She was very thirsty because she started drinking from a cup. I thought how smart she was not to want a bottle anymore then it was all the peeing she’d lie on the chesterfield and she’d be soaked all through her diaper and the furniture I thought it was all the drinking, but I should have guessed. You see, I’ve always been borderline hypoglycemic and I thought one day I might develop diabetes so I read all about it but I couldn’t see it in another person, not in ‘G’, not in my own child ...  ...  ...  ...  ...  ...  Parents’ Perceptions of Caring for Infant Diabetes 63 R: I understand. M: After almost three months of her being irritable and thirsty, etc.; we took her to the doctor she was very limp not my little girl at all can you imagine we took so long before having her seen then the doctor said to take her immediately to emergency right away, I couldn’t believe it I was sure she had leukemia or something terrible like that, I thought she might die. In the emergency they put up all the I.V.’s and things. I was very, very scared. ...  ...  ...  -  ...  Other parents, whose young child had showed few symptoms prior to diagnosis but who became acutely ill quite suddenly, explained the initial impact of their child’s diabetes this way: D: Yes! to begin with you are in total shock, total denial. This cannot be not us not our child what did we do to bring this on ourselves, on our child he was so healthy, so happy, so precious, our only son ...  ...  ...  ...  These parents described feelings of denial, while others experienced horror, terror, anger and sadness. When her young son lay motionless one mother began to feel totally overwhelmed by the experience. She expressed her reaction to the initial crisis this way: M: I was horrified and terrified. I’m afraid of hospitals and I couldn’t believe this was happening to our son. He just lay there with tubes and monitors everywhere I was angry and sad and totally overwhelmed by the whole experience. ...  For another family, blocking out the experience appeared to be a strategy used by the parents to eliminate some of the initial stress, shock and disbelief that was almost unbearable. In this family, where the infant was only five weeks old at the time of diagnosis, all the parents could say was: D: It was hell, an absolute hell, we were so stressed out and so absolutely in shock that we hardly remembered a thing. Our baby was so sick we were convinced he would die so we just blocked it all out. The mother of this infant explained her reaction: M: Oh! it’s so difficult to go back. I was so lonely then so all alone with this small baby with diabetes it’s almost a blur something I’d rather forget. ...  ...  ...  R: It’s hard to go back isn’t it? D: Yes, but there was so much stress then, incredible stress, it’s like this black wall came down and blocked it out  Parents’ Perceptions of Caring for Infant Diabetes  64 These parents then went on to describe current issues, concerns and stressors in their Lives which will be discussed later. However, just by providing a description of their efforts to block this experience out, these parents had identified feelings of utter loneliness, shock and incredible stress when their infant was  diagnosed. Previous experience with diabetes in the family could also affect the parents’ perceptions of their child’s condition. One mother’s stress was heightened because she described her knowledge of some of the long-term implications of the disease when her toddler was diagnosed: M: Well, it had a major impact on us. But I think I secretly knew before he was diagnosed and I lay awake all night thinking it was diabetes. You see, my father had diabetes; he was diagnosed in his 50’s. He’s on insulin now but his condition is deteriorating. All I could do was imagine all the complications and I prayed, “Oh! God, don’t let it be diabetes not in my son he’s so liffle.” But the next day we went to the hospital and it was diabetes. I wondered “What has he done to deserve this what have we done to deserve this?” ...  ...  ...  ...  In contrast to most parents one mother initially viewed her son’s diabetes quite calmly. Having a niece, a nephew and a mother with diabetes helped to ease the situation. The mother explained: M: In the beginning I think I managed fairly well. You see my brother has two children with diabetes and one was only two years old when she was diagnosed. My mom also has diabetes so somehow I almost expected it My mom saw the symptoms in ‘A’. She said you must take him to the hospital. So we caught it very early and ‘A’ wasn’t as sick as most little children are. His blood sugar was 46 [mmolIL] and he did have ketones, but not ketoacidosis. So in the beginning it wasn’t as overwhelming. I thought it was only one injection a day. Now I realize I didn’t understand at all. I knew nothing about diabetes management. ...  For another mother, who had gestational diabetes when pregnant with her young son, the initial shock was tempered by her belief that the diabetes could be “fixed” and would go away. Because her gestational diabetes had been transient, she had no reason to believe her son’s condition would not be the same. She described her initial reaction, then went on to explain her reactions of shock and disbelief when she was informed that her toddler’s diabetes would be a lifelong health problem. M: Even in the hospital I didn’t really understand. You see, we were in Emergency Then this intern came and said ‘C’ had diabetes but I still didn’t really understand. I thought it would just be a medicine to fix it and we could then go home, but then he began telling us this would be a life-long disease and he’d need shots every day for life. It was a shock as you can imagine. You see, I’d had gestational diabetes with him and I needed insulin just for a ...  Parents’ Perceptions of Caring for Infant Diabetes  65 month, then it was gone. I thought his would be the same. I couldn’t believe such a young child could need insulin for life. The stress and disbelief was incredible. Another mother who had a medical problem of her own described the diagnosis of diabetes in her sixmonth-old as being less of a worry than her own blood clotting problem. She described her ultimate fear as being that of her son bleeding to death, and not fear of him having diabetes. She explained: M: When we got to the hospital and they said diabetes I thought poor little beggar as if he doesn’t have enough to put up with. You see I have this blood clotting problem and ‘S’ had inherited the gene, and I was more worried about that, more worried about him clotting or bleeding to death so I thought diabetes no big deal. ...  ...  Although this mother initially considered her infant’s diabetes to be no big deal, this was not the case with the majority of parents in this study. As the magnitude of the diagnosis began to dawn on some parents, they contemplated the future for themselves and for their child. The realization that their child had a lifelong illness left parents feeling trapped. Because they knew their child would be dependent on them for their life and sustenance for many years to come, parents realized that life would never be the same. They wondered if they could ever be happy again, and also questioned their own ability to care for a child with complex needs. The beginning realization of both the initial and long-term needs of their child was described as a total nightmare by most of the families. One of the mothers explained: M: When I heard it was diabetes, I knew just knew it was like a sentence I’d be trapped like a prisoner sentenced to a life of insulin injections, testing and diet restrictions. With such a young child, who would be totally dependent on me for her very life and existence for so many years, I knew I was trapped, and that things would never be the same again. ...  ...  Another mother described the devastating realization this way. M: Yes, and I remember thinking I can never truly be happy again because always in the back of my mind was that realization that my son was diabetic, that all our hopes and dreams were in a bubble that had burst and that we’d never laugh or be the same again. The initial crisis experienced at the time of their child’s diagnosis was only heightened by the hospital experience, and the procedures required to save their infant’s or toddler’s life and restore health.  Parents’ Perceptions of Caring for Infant Diabetes 66 Descriptions of the stressors, frustrations, fears and struggles encountered by parents during their child’s hospitalization constitute the next theme. The hospital experience As parents related their accounts of the first few days of their child’s hospitalization following diagnosis, they identified a number of stressors with which they were faced. These included the taking of blood from their infant or toddler with diabetes, the testing of blood sugar levels, the need for intravenous solutions, the hospital environment which included the tubes, monitors and invasive procedures, the need to give insulin, their own lack of understanding about diabetes, the amount of information that had to be learned, a lack of privacy and no time to be alone to think or to grieve, and the exhaustion of sleeping beside their child in the hospital environment. Each of these stressors will be described as part of the overall experience related in the parents’ accounts. Taking blood from the infant or toddler was an event that resulted in extreme stress for most parents. Because most infants and toddlers were acutely ill at the time of diagnosis, they required constant monitoring of blood sugar levels in order to determine fluid replacement and insulin requirements. Most children were initially cared for in the emergency or intensive care units, and the constant monitoring and the invasive procedures required to obtain blood from the child were a source of intense stress for most parents. The following parents’ accounts graphically illustrate some of the fears, frustrations, sadness and anger directed towards lab technicians who were required to take blood from the child. The parents also described feelings of helplessness, and being out of control, which culminated from the overwhelming stress of the situation. A mother explained: M: ‘G’ of course was very sick she went to that I.C.U. place where it’s all open and all those nurses and the lab. people doing blood tests every 5 minutes on her poor little fingers. I couldn’t stand that her fingers were blue Why couldn’t they take it from an arm vein or the 1.V. or something then a lab. tech. dropped a vial and I flipped. I shouted and got very upset The nurse got upset because ‘G’ kept crying I had to go out and the nurses comforted me ...  ...  ...  ...  ...  ...  One father who had little experience with hospitals explained his reaction this way:  Parents’ Perceptions of Caring for Infant Diabetes 67 D: All the nurses and technicians. They kept trying to take blood out of his arm and I’d never seen blood taken before and here I was trying to hold ‘D’ down on a hospital gurney while everyone poked at his little aims or his fingers. The lab. techs. were using those sharp things that actually cut into his finger and suddenly I was feeling anger and hatred towards the lab. techs. You don’t want to feel that way but you do. He’s so little and didn’t understand all this and we became very protective of him. During that first week, every time he saw a lab. tech. coming he started to scream. This type of hospital experience seemed to impact dramatically on parents because yet another father angrily explained: D: It was total disbelief We got angry with the doctors we thought they didn’t know what they were doing you see they were taking all this blood out of his aims out of his fingers and although I’m usually quite a rational person I felt sick. Why were they doing this. They tried to explain the nurses the doctors but I couldn’t listen. We didn’t understand not like we do now. I think we were a lot of trouble, very bad parents, but we felt helpless and Out of control. ...  ...  ...  ...  ...  ...  ...  ...  Because the diagnosis of diabetes is unexpected, few parents had time to prepare themselves for the hospital experience. Parents found themselves sleeping beside their infant or toddler and the lack of sleep contributed to exhaustion, and increased the parents’ level of stress, as the following comment illustrates: M: We took it in turns to sleep beside her or stay with her. We never left her for a moment day or night. But as you know for the first few days ‘S’ was in isolation with a rash. We couldn’t even leave the room, and she was so whiny and demanding. And when the nurse came to teach us how to do things ‘S’ was still there, clinging to us crying We were totally and utterly exhausted. ...  ...  Despite feeling exhausted and totally stressed by the events surrounding their young child’s diagnosis and hospitalization, parents were also expected to learn how to manage the diabetic regimen. The magnitude of the tasks of learning how to care for their child were vividly described by parents. These stressors constitute the next theme constructed from the parents’ accounts. Learning the diabetic management regimen The impact of the child’s required management regimen was described as a major source of stress by all parents. The necessity to learn how to give injections, how to do blood tests, and how to control the diet were stressors that impacted on parents’ emotions in a number of ways.  Parents’ Perceptions of Caring for Infant Diabetes 68 The mother who had initially described herself as managing fairly well because her brother’s children both had diabetes, described her husband’s reaction which was totally different from her own: M: For ‘6’ [the infant’s father] it was a totally devastating experience. He was an emotional wreck, he couldn’t handle it. During the teaching with the Nurse Clinician he couldn’t even look at the injections or the blood tests. He’d turn absolutely white, almost faint and have to leave the room. He is also a gourmet cook, so when the Dietitian began to talk about food restrictions he just broke down. He couldn’t take it. So I had to learn it all myself, and suddenly I realized the implications for us all, our lives would change forever. When describing blood testing and the need to give insulin, the impact of her son’s diabetes was realized even more by this mother: M: Now I had trouble poking those poor little fingers, they were so tiny and bled and bruised so easily. My brother never had to do this for his child so it was a shock and it was all up to me. For ‘A’ it wasn’t as bad as the insulin. But those things really hurt you know, when I tried it on myself I was shocked, it really hurt! For some parents, the need to perform invasive procedures such as injections or blood tests on their child evoked physical symptoms such as feeling faint or feeling ill. Parents who practised procedures on themselves before injecting insulin or pricking their child’s finger to obtain a blood sample described how painful each procedure was. In particular these invasive procedures evoked stress responses from parents when bruising or excessive bleeding occurred. One mother explained her fear of needles, and how the hospital experience impacted on her future emotions.  Although it had been 14 months since her young son’s diagnosis when the interview was  conducted, this mother still vividly recalled the impact of trying to give her first injection: M: Oh! it was so very hard; you can’t believe how hard it was for me. You see I was terrified of needles then, in the hospital I mean, and the fear has never gone away. It really all started when the nurse said we couldn’t go home until I’d done a shot in ‘C’s stomach. He was so little and I was so scared, and he had no fat on his stomach. But ‘S’ [dad] said “Come on, just do it” because we all wanted to go home. So I did, but I’ll never forget it. It was so traumatic for us both, it scared me so much.  Parents’ Perceptions of Caring for Infant Diabetes 69 The previous stress of giving injections to herself also haunted one mother. Although this parent was an R.N. and comfortable with giving injections to others, it was different when considering the magnitude of giving injections on a daily basis to her six-month-old son. She explained: M: It was so hard, so traumatic. I’m used to injections, I give myself injections every day but oh! God, it was different giving it to my own baby he was only six months old and I wasn’t quite prepared for that. ...  ...  For other parents, the total experience of learning to manage their child’s diabetes was fraught with anger and frustration. Stress resulted from a lack of understanding the disease as well as the need to learn all the necessary procedures. An added stress was a lack of privacy, a lack of time to be alone, to relax, or even to comprehend what was going on. The following accounts emphasize these stressors: I): Well it wasn’t just the finger pokes, it was everything else. We found it difficult to understand the disease itself and what was going on. So together with the anger and frustration, we were watching videos, or taking lessons, learning all about the disease and we became so overwhelmed. R: There is a lot to learn when you are experiencing so much stress. M: Yes, in fact I think we were too busy because we weren’t left alone for a minute to stop and just think and wonder what’s going on here. You see, even in the Emergency the day we came in, from morning till night we were never alone. There was someone there all the time and we didn’t have a moment to talk or even to think clearly, to understand what was going on. Even when we got to the ward there were people checking him and checking us. I felt like saying, “Please give us just a minute to be alone, to catch our breath, to comprehend what’s going on here.” R: It must have been a very difficult time for you. D: It was. But then again, if we hadn’t had all the concentrated teaching day by day, we wouldn’t have got Out of there and boy did we want to get out, to get home. If only there was a manageable way someone could come to our house to teach us instead so we could sleep in our own beds and relax a bit. These parents had identified a need requiring nursing intervention. They described a perceived source for reducing stress by explaining that teaching the concepts of management in the home environment instead of in the hospital setting could relieve anxiety, reduce exhaustion and, by so doing, enhance learning.  Parents’ Perceptions of Caring for Infant Diabetes 70 Other parents described situations in which the young child’s behaviour impacted on the teaching situation and became a barrier to the parents’ learning. Toddlers who were totally stressed by their own traumatic experience placed excessive demands on the parents. Consequently, parents became too exhausted to learn or comprehend even if support was offered to care for the child during teaching sessions. The child’s entire life had been disrupted by the hospital experience and this disruption was reflected in the child’s behaviour. The parents described their dilemma this way. M: Our daughter’s behaviour affected our ability to learn and added to our stress. Although we tried to use nap time for the education sessions it didn’t work you see her whole routine was disrupted, she was only 15 months old and this whole experience was totally traumatic for her. She’d scream even when we were trying to practice injections on an orange just the sight of the needle freaked her out... ...  ...  My Mom and Dad came to help out but she wouldn’t go to them It was really too much for all of us. There was so much to learn, so much to comprehend and we were exhausted The nurses were so good and they offered to babysit while we had our teaching, but it didn’t work in the beginning. ‘S’ would just scream. Later, when she could go to the playroom, it was better. We could relax a little, but we never completely relaxed ever! ...  ...  ...  Another father described his experience this way: D: You are totally overwhelmed, they are telling us all about needles, injections, insulin, poking fingers for blood tests 4 times a day and you are thinking this cannot be, we won’t be able to do this, we’ll never cope... You spend all day at the hospital and you become exhausted sleeping on that little bed and you just want to take your child home, but you know you can’t until you’ve learnt all this stuff then you realize things are never going to be the same even when you do get home. ...  Another major source of stress for parents was the stress experienced by grandparents and other relatives. Some grandparents did try to become involved in the learning process. However, they also became totally overwhelmed by the magnitude of the complex management regimen. As one mother explained: M: My parents visited daily and tried to listen but learning all about this was too much for them and for me. There was so much to learn they felt sorry for us and for ‘S’ [toddler] and that made it worse. My sister came but she couldn’t even look [at blood tests, etc.] so that just made things worse. ...  ...  Parents’ Perceptions of Caring for Infant Diabetes 71 It appeared from this parent’s account that family members who had been relied upon for support in the past were too stressed themselves to offer adequate support during the toddler’s hospitalization. Although the stress of their child’s diagnosis and hospitalization was compounded by the stress  of having to learn a complex management regimen, some parents described an even greater buildup of stressors that impacted on their ability to learn. Buildup of stressors For many parents the perceptions of their child’s diagnosis and hospitalization were described as a culmination or continuation of a multitude of stresses already being experienced in their lives. When asked about their hospital experience the father of a two-year-old boy explained: D: I already had a lot of stress at work, and ‘M’ [mom] was just recovering from a bad car accident and then this diabetes. It just doubled the stress, but I think I was so stressed already that the amount of stress I had was so large that this just added to all the rest. It was too much on top of the other stresses I already had, so my mind went into shock. ...  This father described multiple stressors impacting on the family prior to their young son’s diagnosis of  diabetes. The added stress of the child’s diagnosis contributed to the father’s distress and affected his ability to function. In another family, the father had just lost his job and the stress of that prior situation made it even more difficult for the parents to deal with their son’s diabetes.  The mother explained:  M: Well ‘G’ [dad] had been made redundant and that was bad enough but when ‘A’ got sick it was hard on us both but unbelievably hard on ‘G’. He took it all very hard and had a very difficult time with it all. Of course he was unemployed at the time ‘A’ was being diagnosed and with just having lost his job too, this was far too much for him to handle (Mom began to cry) ...  ...  ...  R: I understand. M: Well (crying), poor guy, he did suffer an awful lot at the time. He was also very fragile. He couldn’t bear the needle. So all ‘A’s care was left to me (sobbing). I had the stress of a husband out of work, a toddler with diabetes, and only me to learn everything alone it seemed too much too many stresses together. ...  ...  ...  For another family, the buildup of stressors involved a recent move and a new job for the father. As the parents explained:  Parents’ Perceptions of Caring for Infant Diabetes 72 D: You know, there is so much frustration over this thing. So much frustration, a lot of anger involved in this, you get so angry because it’s a time in your life when you’re just building your family, just thinking of buying a house or getting a car, and suddenly you are affected by this huge monster called diabetes. M: Yes you see, we were fairly new in town. We’d just moved here, we also had little ‘K’ at home and all the demands and stress of worrying about ‘D’ and being at the hospital with him. We didn’t have anyone out here to take care of ‘K’, so we landed up flying ‘A’s [dad’s] parents out here, but ‘K’ didn’t know them and it was stressful for everyone. ...  This family also described a stressor related to the care of siblings. As well as recently moving to a new city, this family was obliged to rush their two-year-old son into hospital and abandon the care of their second child. ‘K’ was a six-month-old sibling, and much of the parents’ articulated stress was related to leaving this little one at home in a strange city with grandparents who were virtual strangers. D: And of course, with a little baby at home, I was so worried about her, could the grandma manage this baby she hadn’t met. R: How did the grandparents feel, do you think? M: Well, it was very hard on my family, especially on my dad, because he has diabetes and he could identify all the problems and heartaches this little boy would have. For this- family, the mother also explained how stressful their son’s diabetes would be for his grandfather. The grandfather also had diabetes and was experiencing some complications due to his disease and, therefore, could identify all the problems and heartaches faced by his grandson in the future. The anticipation of possible complications was also an added stressor for some parents who had prior knowledge or experience with diabetes. One mother described her own stress as well as that of her husband when they realized how much their young son would rely on them for prevention of future complications. M: We read so much and read all about the complications and of course read that in some people, however well controlled they are, complications can occur. So that really troubled us because ‘A’ is so small Then I thought about kidney failure, being on dialysis and all those things I find very frightening, and I had one major emotional attack Because I realized ‘A’ was totally reliant on me for his survival and yes, I found that frightening. ...  ...  ...  Parents’ Perceptions of Caring for Infant Diabetes 73 These multiple stressors experienced by parents were perceived as a combination of prior stressors in the families’ lives, stress related to past experience with diabetes, and the current stress caused by their child’s immediate situation and complex needs. Thus, the parents’ accounts revealed that these families experience several coexisting stressors at the time of diagnosis and hospitalization for their infant or  toddler, and that their early experiences were dramatically shaped by these multiple stressors. Overlapping and intertwining emotional responses to these multiple stressors have been described as part of the parents’ multifaceted experience.  Reactions and Emotional Responses to Perceived Stressors Parents’ perceptions of events surrounding their young child’s diagnosis and hospitalization evoked varying degrees of emotions and feelings.  Emotion-laden responses to the situations parents found  themselves in included shock, disbelief, fear, devastation, panic, anger, grief, guilt, sadness, horror, terror, worry, stress and sometimes relief. Parents also described feeling helpless, exhausted, upset, depressed, frustrated, trapped, incompetent, out of control, unable to function and totally overwhelmed.  They  explained their loss of objectivity, their need to block out the experience and their battle for their infant’s or toddler’s survival. Some parents described the experience as hell or total nightmare, and most blamed themselves or others. Many described crying, praying or shouting as emotional reactions to the stressful situations. Many described a loss of reality and automatic functioning. Functioning like robots The absolute shock of their infant’s or toddler’s diagnosis left some parents in a position where they could not function normally, make decisions, nor be fully responsible for their own actions. Sometimes this reaction was perceived as beneficial because it protected parents from the intense stress of the moment. One father described his situation this way: D: I functioned like a robot, it wasn’t reality, and it really wasn’t until 3 or 4 months later that I gained some retrospective objectivity of the whole thing. I was in shock, I can tell you  Parents’ Perceptions of Caring for Infant Diabetes 74 (laugh) and I think the shocked state helped me to function, to at least learn the basics and get the job done. I can’t remember how I did it it’s like a haze, a mental block. ...  This father perceived his reaction as a protective mechanism to help him through the learning process, and  to guide him through the trauma of his son’s hospitalization. For other parents, this type of reaction left them feeling incompetent, inadequate and unable to identify their own needs or the needs of their child. As one father explained: D: We were both physically and mentally exhausted and overwhelmed. We must have behaved like very incompetent parents there was so much to learn, but we didn’t even know what we needed to learn and we were so afraid we couldn’t cope. ...  The mother in this family described it this way: M: That’s true, we were literally two incompetents. I was anyway. I was totally incompetent. All my reserves had been used up and I couldn’t cope at all. The father continued: D: So we functioned like robots. After 10 days of sleeping on a cot in a hospital ward and waking every 3 to 4 hours to check your little one’s blood sugar levels, you become so exhausted you just function like a zombie You don’t really think it’s like a haze you do panic if you see a high or a low blood sugar but you don’t remember what to do. You want to learn so that you can go home but you have no confidence the stress blocks Out your ability to think to make rational decisions you think you’ll never be able to understand or recognize your own child’s needs. ...  ...  ...  ...  ...  ...  Most parents attributed their “robot like” behaviour to shock or sheer exhaustion. Whatever the parents attributed this behaviour to, they felt unable to take control at that time and relied heavily on health care professionals for support and guidance. In particular, these parents relied on the nurses who taught them how to handle their infant’s or toddler’s regimen. Although this behaviour could be identified as a coping strategy implemented by parents during this initial phase of their experience, it is also described as a reaction or response to perceived stressors for the purpose of this study. Denial “Denial” was another response or reaction linked to the above theme of “functioning like robots”.  Parents described this as a defense or protective mechanism to help them through the initial trauma of their  Parents’ Perceptions of Caring for Infant Diabetes 75  child’s hospitalization. Parents explained that this response of thinking, “if I don’t know how to do it, I won’t have to do it” was a form of defense that eased them into the situation slowly. A mother explained: M: I knew we needed to learn all these things but secretly I didn’t want to. Initially I thought if I don’t know how to handle this then it won’t need to be done we can just forget it I guess it was denial really a defense mechanism and maybe that was good because we still didn’t know what we were getting ourselves into not until we got home and maybe that’s just as well, in retrospect. ...  ...  ...  ...  ...  Although the complexity of their child’s needs led parents towards a response of denial, each parent concluded that there was no viable alternative; they were trapped and had to learn. The parents’ description of these feelings constitutes the next theme. Feeling trapped The realization that “there is no way out and we have to do this” was the parents’ perception of the situation that led to an emotional response that generally guided parents towards coping with the demands of managing their infant’s or toddler’s diabetic regimen. However, this realization was fraught with emotional resistance for as long as possible. Most parents described struggling with their emotions. They tried to listen to educators, but couldn’t hear, couldn’t comprehend, and resisted as long as possible. Eventually they realized there was no choice. One mother explained her initial emotional response this way: M: There was so much to learn, so much to do I couldn’t comprehend it all to begin with people were talking, explaining but I couldn’t listen I didn’t hear what they said. All I was thinking was that I cannot handle this, I cannot cope Then I realized there was no I had choice to after all, this was my child. ...  ...  ...  ...  ...  Another mother explained: M: Well, we really had to do it  ...  there was no choice  ...  our child’s life depended on us.  Despite realizing there was no choice, one mother still described her feelings of disbelief at the enormity of what she was expected to do for her child.  Parents’ Perceptions of Caring for Infant Diabetes 76 M: My initial reaction was one of disbelief. All this testing, injecting, meal planning as well as caring for all the other needs of our baby I was overwhelmed. But we knew she had to have it [insulin] and we knew we had to do it or she’d get sick or die so there no alternative really I HAD TO DO IT. ...  ...  ...  ...  ...  This important perception of having no alternative, or no choice in the matter of learning the complex  diabetic management regimen, could be considered a coping strategy employed by parents to manage their current stressful situation. However, because it is inextricably tied to the parents’ emotional responses and feelings of being trapped, it is presented as part of this articulated experience. Many parents also explained the guilt and pain associated with learning the required regimen. When describing her difficulties with managing her young son’s diabetes at home, one mother referred back to her hospital experience this way: M: But it brings back all the guilt and the pain. You see, when we were in the hospital and the nurse was trying to teach us, I wanted to say “Go away, I’m not ready to do this, I can’t do this, I won’t do this.” I wanted it all to go away, but as the days went by I realized I had no choice, I had to do it. This was my child, he needed this to stay healthy so I’d better listen, I’d better be able to do it or else. A father said: D: We had no choice  ...  but we felt trapped. We wanted a choice  Parents wanted a choice, hut there was no way out.  ...  but it wasn’t there.  This realization left parents feeling vulnerable,  trapped and wanting to escape from the entire situation. One mother explained: M: Initially I felt some control. That was very brief because seconds later they were putting I.V.’s into her and she then had to stay in the hospital for a week. I just felt like someone had shackled me all these people were telling me I had to do these things and I just felt really scared and I wanted to go home. My initial desire was to escape I wanted to go home but I knew I couldn’t. I had to stay with ‘G’ and then the first night at Children’s Hospital was hideous because I kept on visualizing all the things I’d have to do for ‘G’ for the rest of my life! ...  ...  Initial feelings of wanting to escape, wanting to go home and wanting to avoid all the people who were telling them what to do were shared by all parents in the study who described their hospital experience. Often multiple stressors experienced by the parents evoked feelings states that resulted in anger and blaming.  Parents’ Perceptions of Caring for Infant Diabetes 77 Blaming Once parents got over the initial shock of their child’s diagnosis, they often became angry and began questioning why such a thing could have happened to them. In searching for a cause, most parents  initially blamed themselves or someone else, and coming to terms, or accepting their child’s condition, was sometimes marie more difficult by grandparents who were struggling with the same thing. Physical and emotional exhaustion were described by parents as stressors that evoked friction and anger and led them into the emotion-laden state of blaming. Blaming each other or blaming themselves appeared to result from the parents’ anxiety and stress related to events occurring during the young child’s hospitalization. One mother who had just finished describing her experience of spending a night in the LC.U. with her 19-month-old daughter explained her reactions: M: When ‘C’ [dad] came back the next morning I just laid into him poor thing, everyone must have thought what a terrible woman I was my poor husband who felt so terrible as well, I just laid into him, blaming him and it wasn’t his fault. I think he felt worse than me. It really strained our relationship. ...  ...  R: It must have been a very difficult time for you both M: Yes! Then ‘G’ got a little better and went to the cardiac ward not the diabetic ward but the cardiac ward! and within 24 hours she was up and walking around, a different child the I.V.’s were gone. I had my little girl back and we were in a room with all these other little children with tubes everywhere, and surgery and I felt so ashamed because I’d been out of control but it was the stress of course I haven’t blamed myself since I know I mustn’t I didn’t know and I was under all this stress, but I blamed myself then. —  ...  ...  ...  ...  ...  ...  Another mother described her difficulty with resolving self-blaming that was initiated in the hospital setting, but then was sustained throughout each phase of her experience. M: Our relationship was so strained. You see, we come from Italian families, and this was our only son. The grandparents didn’t believe such a little child could get diabetes they wanted to know why. I know they blamed me because I had gestational diabetes they blamed ‘S’ [dad] and me and I think ‘S’ blamed me. He doesn’t blame me anymore (14 months post diagnosis), I know that but I think he did at the hospital, and I will never forget that feeling ...  ...  ...  ...  ...  Parents’ Perceptions of Caring for Infant Diabetes 78 Of course, the doctors and nurses told us it was no-one’s fault but then they couldn’t fully explain how ‘C’ got his diabetes either so I still blame myself, the feeling’s always there I think it always will be. ...  ...  One father explained how depressed and down he got in the hospital. D: You get so down and blame each other. It was very bad in the hospital, you know, we were so angry. I think the nurses must have thought we were terrible, incompetent parents You see, we blamed them. We blamed the doctors. We blamed the lab techs. Sometimes we even blamed our little boy when he cried. ...  These parents not only blamed themselves and each other, but they blamed hospital staff, especially those who performed painful procedures on their child. Other parents also blamed medical staff, particularly when it was difficult to make a diagnosis in a six-month-old infant. The family whose infant was admitted to a small community hospital at the time of diagnosis described their reactions this way: M: I blamed the doctors. I thought they were a bunch of incompetents. One said he thought it was meningitis, another said it’s gastroenteritis then they phoned Children’s Hospital and came back and said it could be diabetes. I didn’t know who to blame. ...  D: He could have died, but then they sent him to Children’s. Blaming often resulted from the parents’ feelings of guilt or anger over their own actions, and these feeling states will be presented in the next theme. Guilt and anger Although guilt and anger are two distinct and different feeling states, parents often intermingled and interrelated the two when relating their stories. Guilt often evoked feelings of anger, and anger often resulted in parents feeling guilty. Consequently, both responses will be described together. Many parents felt guilty about their treatment of irritable toddlers prior to the diagnosis. Many described how angry they had been with a whiny, clinging child and how badly they felt when they realized how ill their child was. One mother vividly described how angry she had been with her toddler before the diagnosis was made, and how guilty she felt following the diagnosis.  Parents’ Perceptions of Caring for Infant Diabetes 79 M: So one day I got very, very angry with her because she was so whiny and so clinging and so bad! I threw her into her crib I almost hit her, can you believe that, I almost hit my little girl, and I am a fairly calm and rational person generally so I could see how another Mom say a single mom or someone without support, might be tempted to hit their child I called ‘C’ [dadi and told him I’d almost hit ‘G’,it does strain the relationship, you know and I went outside in the garden and chopped and chopped at the tree. That tree still reminds me of how upset I got, but I hit the tree, not little ‘G’ ...  ...  ...  R: Yes, I understand. M: And next week, she was limp and lifeless in the hospital so ill the day I threw her in her crib. I feel so guilty.  ...  and she must have been feeling  This mother also described how easy it was to become angry with a toddler who was displaying the symptoms of hyperglycemia, and how driven to despair and frustration a parent could be. This mother had realized there was something wrong with her toddler, but ignored the symptoms for some time. She had difficulty coming to terms with the fact that her daughter was ill. M: Oh yes and afterward it’s the guilt. When you are in the hospital with all the other things to contend with, it’s so difficult to get rid of the guilt. What did we do to this little kid, she was so ill and yet we got so angry with her, you never get over that guilt. ...  R: So you felt very badly that you had ignored ‘G’s symptoms and that you had lost patience with her, even though you didn’t know she had diabetes at the time? M: Well, you see, I couldn’t believe we didn’t notice, didn’t clue into the symptoms. I kept telling the nurses in the hospital I nearly hit her. Do you know I nearly hit my child? And I thought if I kept telling other people, it would make it all better, be a catharsis for me, cleanse me of my guilt. I really felt I was a terrible, neglectful mother, and yet this little kid had been so whiny, so unreasonable, so miserable. R: Did talking to people about your feelings help? M: Urn I think by the time we got out of the hospital, maybe even in the hospital, I began to accept it and people at the hospital were absolutely wonderful. ...  This parent had attempted to ease her guilt by talking it out with the nurses at the hospital. Like other parents she was having difficulty coming to terms with her actions, and saw herself as a neglectful mother who needed reassurance from health care professionals in order to dispel the intensity of her emotions.  Parents’ Perceptions of Caring for Infant Diabetes 80 Guilt was also described in terms of parents blaming themselves for their infant’s or toddler’s diabetes. A mother who had a traumatic pregnancy and delivery with her young son, who later developed diabetes, explained her feelings of guilt this way: M: Well I felt guilty and responsible for ‘R’s diabetes, I wondered if it was the trauma when I was pregnant. I also felt this tremendous burden of responsibility. I felt I had to do everything in the beginning, before I became so depressed I felt I had to do everything. After all, I was the mother, this was my child, I’d given birth to him. You see, he’s our only child, he’s very special and I feel so guilty, as if I’ve ruined his life and maybe could have prevented this. Later in the interview, this particular mother referred to her feelings of guilt again: M: Unfortunately, I still feel it’s my fault. I think maybe it was environmental, something I did, something I ate, and because no-one really knows the cause, I guess deep down I will always think it’s my fault, even though no-one has said so. Maybe one day some research will establish the exact cause, and then I’ll know it wasn’t me. R: And what about you, ‘H’ [dad], how do you feel? D: I didn’t blame ‘M’ [mom], never did and never will, because my brother’s child has diabetes too and it could be that connection, but no one is to blame. Because of the complex etiology of diabetes, it is difficult to convince parents that they are not responsible for the onset of their child’s illness. The guilt, the blaming, the fears and frustrations were described by parents as recurring on a continuum through all phases of their experience. However, the overriding and pervasive need to take their child home provided parents with the impetus and strength to struggle with their emotions and carry on. These accounts of the parents’ experience have explained and described multiple emotion-laden reactions and responses to events surrounding their infant’s or toddler’s diagnosis and hospitalization. Parents described feelings such as shock, anger, fear, disbelief, devastation, helplessness, exhaustion, being out of control or totally overwhelmed by their situation. These feelings were evoked by multiple stressors experienced by the families during their child’s hospitalization. Some coping strategies employed by  Parents’ Perceptions of Caring for Infant Diabetes 81 parents to handle their stressful situation were intertwined and described simultaneously with the parents’ emotion-laden responses.  Coping Strategies Employed by Parents to Manage the Situation Coping behaviours identified by parents in their accounts were both positive and negative and either contributed to or detracted from the parents’ level of adaptation. Because of the initial acuity of the young child’s condition at the time of diagnosis, followed by a rapid stabilization period and apparent return to normal health and activity for the child within the hospital, parents described a variety of reactions and responses. Coping strategies such as being assertive, learning to manage the young child’s condition, seeking support, understanding and describing the child’s condition, looking for a cause and clinging to hope were utilized by parents to deal with the child’s hospitalization, and also in anticipation of taking the child home. The ultimate goal of parents was to provide adequate care for their infant or toddler with diabetes at home. Being assertive One of the major emotional responses described by parents was their feeling of being out of control and totally overwhelmed by the hospital experience.  Trying to be assertive was a coping  behaviour used in an attempt to restore some control over their situation. During the early hospital experience one of the fathers explained his assertiveness this way: D: We started putting our foot down, saying no more lancets, no more blood tests. I think they thought we were very bad, we wanted to do it ourselves. We were very adamant in the end. It was our son, our little boy. We were in this strange clinical environment and all our little boy had was us to lean on for love, support and guidance. He was only two and it was a very trying time for us. I’m sure the hospital staff were very tired of us and our demands.  The child’s stress over blood sugar testing called for intervention on the parents’ part. The parents’ level of stress was related to their child’s situation. Consequently, by reducing the amount of stress for their child, these parents also reduced some of their own stress and frustration. The parents took into account  Parents’ Perceptions of Caring for Infant Diabetes 82 the clinical environment, the benefits of their intervention for their son, and the level of control they had a right to assert as parents. In being assertive the parents also took on some of the responsibility for their child’s care. In another situation, the need to he assertive was related to the mother’s total exhaustion through lack of sleep and constantly feeding her baby. Finally, the mother told hospital staff that she couldn’t cope anymore. As a consequence, action was taken to reduce the toddler’s feeds and insulin, and both infant and mother slept much better. The mother explained her actions this way: M: You see there was all this stress, incredible stress. We used to feed him all night. We were trying to force feed him every three hours because they said he might go low. We were up all night doing blood tests and feeding. I was afraid to go to sleep in case we missed a feed. Then one night I said, “No more, I can’t take it.” I was in tears of frustration. The doctors and nurses said okay and we reduced the insulin and he slept and I slept better, and he didn’t go low that night...I felt so relieved. Another mother who admitted to having to take full responsibility for her young son’s care because her husband couldn’t cope described her response: M: The main problem was the needles, because he was so small he didn’t understand at all. It was such a struggle. He’d procrastinate think of every reason under the sun not to have it and that was very difficult. Also, his dad had a hard time. He’d procrastinate too, saying, “Why don’t you just leave the injection today.” Then it was the two of them against me. The nurses were very sweet. There was a special little room and we used to go in there. I used to say it has to be done I knew it had to be done so we just go on with it and it was over. But I had to be very assertive and just get on with it. ...  ...  ...  In this second situation, the mother’s assertiveness was directed towards the father of the child. Both the child and father procrastinated over insulin injections, which undermined the mother’s position. In this case, nurses were supportive of the mother’s assertiveness and this provided her with the confidence in her own abilities when it was time to take the toddler home. She explained the benefits of her actions this way: M: It helped when we got home because even then it was two against one, both procrastinating, saying “Don’t do it today. Let’s leave it,” and me just getting on with it no nonsense. Two-year-olds are very accepting though, and very forgiving, which makes that part easier. ...  Parents’ Perceptions of Caring for Infant Diabetes 83 Another mother explained how being assertive about food for her child helped initially, but not entirely: M: Even before the diabetes we had a fussy eater. Then in the hospital they told us what he had to eat and I knew he wouldn’t eat it. My thought was how can this be? Is this how life is going to be, is this what we’ve come to? I can’t cope. I’ve got to get out of here, it’s too much for me Then I decided; I’m his mother I know he can’t eat all this so I told them I told the dietitian and we gave him cereal and milk but I didn’t understand enough then not about nutrition anyway We didn’t really understand our little boy’s needs. ...  ..  ...  ...  For this family, the assertiveness was necessitated because of the toddler’s prior eating behaviours. Only the mother understood the nuances of her young son’s fussy eating pattern.  She realized that the  expectations of hospital staff were impossible for her child to meet, and saw the need to intervene. At the time of her assertiveness on behalf of her son, this parent was unaware of her child’s total nutritional needs.  However, her knowledge base improved as she learned how to manage her toddler’s dietary  regimen in the hospital setting. In order to take their infant or toddler with diabetes home, all parents were required to obtain a basic level of competence in handling the day-to-thy regimen.  Consequently the parents’ accounts  described the learning process leading to this competency. Learning to manage the young child’s condition Because the parents’ ability to manage their infant or toddler’s diabetic regimen at home depended on what they learned in the hospital setting, this learning experience impacted dramatically on the parents’ total perception of caring for a child with diabetes. Major issues and concerns surrounding the daily management will be discussed in phases two and three of the parents’ experience. However, the initial learning experience and its implications were described quite dramatically by parents.  One mother  explained about her problems with needles: M: Even before we went to the hospital with ‘G’ I had this phobia about needles and my fear of needles was accentuated in the hospital when I heard I had to give them to my own little girl Also, I didn’t know how I’d ever manage the inflexible regimen they taught us I’m pretty organized generally, but to be so inflexible with a 19-month-old seemed near to impossible it filled me with panic. But then I thought this is my child, she really needs my ...  ...  ...  ...  Parents’ Perceptions of Caring for Infant Diabetes 84 help now so I’d better learn how to do it for her sake. I read all the books and asked so many questions. This mother’s ability to overcome her fear of needles and to learn was initiated by her feeling of responsibility toward her daughter.  Asking questions and reading books about diabetes were coping  strategies employed by this mother, as well as by other families in the study. It appeared from the data that the parents’ perception of the teaching, learning situation also impacted significantly on their ability to learn. Some parents explained that the technical approach to teaching, and the specific and precise instructions given filled them with panic. They described feelings of resentment toward health care professionals because they were not treated as responsible parents able to rationalize and make decisions. Ironically, these parents had previously described themselves as feeling incompetent, unable to make decisions and functioning like robots. These contradictory statements within accounts were fairly common to most parents. However, comparing the need for rigidity as opposed to flexibility for a young child’s future lifestyle was a matter of concern to most parents. Parents who felt they were given no leeway or flexibility had more difficulty coping.  The  following account from the parents of a two-year-old illustrates how stress affected their ability to cope, and how a different approach by health care professionals might have helped them cope better. The father began the description this way: D: Well, I think our experience in the hospital might be significant. I know we were stressed, hut we are also fairly intelligent. We were taught things so technically, so exactly, like you’ve got to do it this way, there is no leeway, and because of this we became panic-stricken and felt we must do it this way and could never deviate. I think if someone had told us there was just a bit of flexibility it might have been easier. M: I think I would have felt better if I had been treated as ‘R’s parent, as a responsible human being with some ability to rationalize and make decisions. But I didn’t feel that way at the time. It was as if I were being told, you must do this and you must do it this way. Then you go home and the full responsibility for the child is yours, day in, day out, but no one understands that. They cannot imagine what it’s really like and how it affects you. R: So you really felt that you were given no leeway at all?  Parents’ Perceptions of Caring for Infant Diabetes 85 D: Not at that time. Now it could have been our inability to understand or our limitations at the time in light of our levels of stress. R: And do you think if you had been told all about the flexibility that it would have helped and eased your stress? M: Well, in retrospect, I realize now why they are so precise and so specific because these at least are specific guidelines to follow. D: However, I would have felt more comfortable and less afraid, I think, if I had been treated as an equal, or at least had some leeway explained to me. You see, we were so busy learning technical things to do with the day-to-day management that we had little time to deal with our emotions, and no one really warned us about the emotional impact They were more concerned about the logistics of blood tests, instilin and meals and snacks on time. To be honest, I didn’t understand the emotional impact either I was like a robot kind of dead inside, going through the motions, and it wasn’t until 5 or 6 months later that I realized the terrible impact this had on us so maybe it would be a good idea to set up an interview for parents after the child’s diagnosis just to ask them how they are feeling emotionally not how are the blood sugars, or how is the diet, but how are you, how are you managing emotionally? ...  ...  ...  ...  M: You see, parents themselves don’t know how they feel. They are too caught up in the daily management, trying to get everything done. They have no time to feel! R: I understand. D: You know, if we’d had someone like you come to talk to us then, just sit and listen and let us talk, it would be so therapeutic you’ve no idea how therapeutic it is just to sit here today and talk. ...  These parents explained that what they really needed was someone to understand their emotional needs, someone who included them in the decision-making process, and someone who would listen to them instead of telling them what to do. However, these parents also admitted that due to all the stress of learning how to manage their child’s condition, parents themselves lost perspective, and did not always have the ability to make rational decisions. The parents’ inability to comprehend any room for flexibility in their child’s daily regimen also heightened their confusion and increased their stress. Although these parents were describing their learning experience, they also identified a need that was expressed over and over again by all parents in this study. The need for empathy, understanding and  Parents’ Perceptions of Caring for Infant Diabetes 86 someone to listen to their story was described by parents as a source of reducing stress and was referred to throughout all three phases of their experience. For other parents the learning experience in the hospital was quite different.  These parents  perceived the acquisition of simple, factual knowledge as a means of reducing their stress and providing them with the confidence and ability to manage their young child’s regimen at home. They preferred the technical and specific approach to teaching. This approach met their learning needs, and the fact that much of the decision-making was taken out of the learning process for them was perceived as beneficial. These parents described an ability to remember exactly what they had been taught when they received the information in a precise and simple manner. One mother explained what a novice she was and how secure she felt when told exactly and precisely what to do. She viewed health care professionals as supportive and found the teaching, learning situation beneficial. She described the experience as follows: M: Once we started learning it was like a miracle. It gave you a wonderful sense of security because you were told exactly and precisely how to do everything. People at the hospital were wonderful and so supportive we were such novices, such greenhorns but they went over things again and again almost like we were children, not adults at all but everything was so new we needed that. ...  ...  ...  We learned everything together ‘C’ [dad] and I and ‘G ‘s grandparents. We came out with a very good attitude, and I think before we left the hospital we felt pretty comfortable with the whole thing The training they provided was excellent and when you got home just remembering exactly and precisely what you had been taught made it simple and invaluable. The decision-making was taken out of it for us and lessened the stress. ...  Different approaches and attitudes toward the teaching, learning situation, and different expectations of health care providers and educators, contributed to varying perceptions of the hospital based learning experience for parents in the study. Levels of stress experienced during the initial teaching experience were also reflected in the parents’ accounts which described their ability to manage their child’s complex regimen at home. For some parents, learning was enhanced by their prior knowledge of the situation. For others, lack of prior knowledge was an impediment to learning.  Parents’ Perceptions of Caring for Infant Diabetes 87 One mother described differences of approach to the learning between herself and her husband: M: Well ‘A’ [dad] is a dentist. He was used to injections and medical terminology and he understood and learned more quickly than me. Nothing seemed to bother him but it really bothered me so we were at different levels ...  ...  In this family, the mother’s stress was increased because the father’s medical background allowed him to understand and cope better. The mother was at a different level of comprehension and ability. She went on to explain that, in particular, the injections and need for blood glucose monitoring on a 15-month-old bothered her, and she felt inadequate because of her husband’s competence. Some of this frustration and feelings of inadequacy continued at home, and the mother perceived her husband as accepting their young daughter’s condition much more philosophically than she could.  The difference in levels of  comprehension and ability led to differences in opinions about the child’s daily management at home. For other parents, learning together was an important aspect in the process of coping. Including fathers in the education sessions eased the mother’s apprehension, and contributed to continuation of shared responsibilities once the young child with diabetes was discharged from hospital.  A father  explained: D: They insisted that fathers took time from work and participated in the teaching sessions. This was so helpful. It felt good to be included, and of course I began to realize how important it was for us both to know all these things in order to help ‘D’. I quickly understood that ‘Sh’ [mom] couldn’t handle all this alone that it would take two of us working together to manage all the injections and “pokes” and other responsibilities and because the nurses stressed this sharing of responsibility, it really stuck in my mind and I remembered it. ...  ...  M: I couldn’t have coped alone. I needed ‘A’ [dad] beside me. It took one to hold and one to inject with the insulin also we both needed to know about handling the blood sugars and the food so we sat together, did everything together, and tried to help each other understand. ...  ...  The realization that both parents would be needed to ensure the continued management of the child at home resulted in adjustments being contemplated and planned even in the hospital. A mother explained:  M:  When we sat together in the teaching sessions and ‘C’ [dad] was so calm and accepting, it calmed me. I thought, ‘It can’t be so bad we are in this together, so I won’t have to do it all alone. ‘C’ [dadi will help.’ ...  Parents’ Perceptions of Caring for Infant Diabetes 88 The mother of a young infant described her experience this way: M: I knew it was too much for me to handle. ‘T’ [dad] was there with me, helping and supporting yet I felt so lonely, so devastated. I thought ‘T’ will never be able to go back to work I can’t cope alone. Then ‘T’ arranged to work just part-time until we got this all together, until I could cope better. You see, our baby was so young I thought I might go into postpartum depression with all this to do, and no support. So, when I knew ‘T’ would be home part of the time, I felt better. ...  ...  The need for help and support in handling the regimen for such a young child with diabetes was recognized by most parents, and adjustments to lifestyle were initiated in the hospital setting. Some of the variability in approach to the learning situation appeared to be related to the presence of multiple stressors in the parents’ lives, prior knowledge of diabetes or other health care problems, and the parents’ perceptions of the support systems available. Seeking support While in the hospital, most parents described looking to nurses, doctors or other health care professionals for support. They also looked to each other. Some parents described their experience of becoming too reliant on health care professionals and experiencing panic at the thought of going home and managing alone. One mother explained: M: The nurses were so supportive. I almost became too reliant on them, thinking I’d never manage without them at home. But there was a counsellor who assured me I’d manage, and it gave me confidence. ‘C’ [dad] was so good. He was feeling so awful, worse than me, but he appeared calm. I leaned on him a lot. I honestly don’t know how a single mother could manage. It takes two of you to do everything, one to hold and one to poke Counselling helped parents to cope with the fears of going home and managing alone. However, the need for parents to support each other was paramount. One mother who received little or no support from her husband relied heavily on her own mother. She explained the advantages of having a mother who was a diabetic herself, and could understand the situation. M: I couldn’t have got through this without my mom. She was supporting me, then taking care of ‘G’ [dad], who was experiencing acute anxiety. With two other diabetic grandchildren, my mom was quite a pro.  Parents’ Perceptions of Caring for Infant Diabetes 89 Most parents looked to their extended families for help, but did not always receive the anticipated support. Grandparents were reported as being equally stressed and as afraid as the parents. They were unable to comprehend the situation, or deal with the complex needs of their diabetic grandchild. Parents were often too busy, or stressed, or preoccupied to spend time with extended family and explain the situation to them. Consequently, the extended family became upset and were not very supportive. Most parents described their child’s diagnosis and hospitalization as being one of the loneliest and most stressful times in their lives. Many did not obtain the support from those on whom they had relied in the past and, instead, turned to other parents who had young children with diabetes and who could understand the situation. Most parents explained that, unless you have experienced a similar situation, there is no way you can possibly understand. The following accounts explain the parents’ perceptions of seeking support and the problems they encountered. M: Well, everyone came to visit, then left us. They were too afraid and I think we were too stressed and too busy to explain things properly to them. They were very upset. The parents of the five-week-old infant described their experience. D: Our family was not very supportive. They didn’t understand. They hadn’t gone through it. They were afraid. They didn’t want the responsibility they were even afraid to visit it caused a lot of heartache. ...  ...  M: Later, this other mom who was still breastfeeding her diabetic infant came in to visit. She was the only one who understood, because she had been through it. She became my major support. Later, we kept in touch by phone. One family had just moved from another city and explained their experience. D: Well, we’d just moved here into a new neighbourhood, then ‘D’ got sick. All our family were in other cities. We’ve never felt so lonely, and so in need of support. Another family described a similar lack of support. M: Well, diabetes happens so suddenly, and our family doesn’t live here, so it was a devastatingly lonely time for us. I’ve often thought that hail another parent with a small child with diabetes come to visit us, we would have felt much better someone who could listen as well as share their experiences You need support, but you need someone who understands, not a sympathetic grandma who says “don’t hurt him,” because you know you have to hurt him. And someone who doesn’t understand just adds to your grief and your guilt. ...  ...  Parents’ Perceptions of Caring for Infant Diabetes 90 Support from people who understood, and not from people who would be too sympathetic toward the child was stressed. Too much sympathy was perceived as counter supportive, and many parents in the study offered to provide this empathetic support for other families. In general, parents looked to each other as major support systems at this time of crisis. However, although parents described their need to support each other, many acknowledged difficulty doing this. D: We knew we had to support each other, but it wasn’t easy. We had breakdowns in communication, misunderstandings. We saw in each other all those combinations of inflicting pain and restrictions on our child. It was easier to blame each other than to support But in the end, we got it together, and then we tried to explain our son’s condition to our family. ...  Conflicts and misunderstandings over their child’s condition and management also contributed to breakdowns in communication and the parents’ difficulties in supporting each other. Parents perceived an ability to explain their child’s condition to others as being an effective way of gaining support. Understanding and describing the child’s condition A need identified by parents was their ability to understand and to describe their child’s condition to others. Parents perceived the necessity to explain diabetes to friends and relatives in order for them to understand and to provide support. One father drew a verbal analogy to explain his understanding of diabetes and how he would try to explain it to others. D: I knew I had to understand diabetes for myself. Then I tried to think about how I could explain diabetes to other people R: (silent pause as the father gathered his thoughts) D: I’d like to explain to you how I feel about this, and an analogy I try to draw for myself so I can understand. You see, I look on diabetes as a wood burning fire and heating the house with a wood stove. Instead of having a draft on it, that’s open all the time the open draft is the insulin working all the time, and the logs you put on are the food, so you have to feed that tire all day long to keep it going. You might put on two big logs in the morning (that’s breakfast), then two smaller ones for snack, two big ones for lunch, and so on. You can never leave that fire when the draft is open, you have to keep on feeding it day in and day out, or the fire dwindles and goes out. So, I explain ‘R’s diabetes to friends like this to try to help them understand, and you know, I had to find a space in my head to monitor all this and to understand how to keep this fire going. It was difficult to push all this other stuff aside in my head because it was pretty much full, but I have done. ...  Parents’ Perceptions of Caring for Infant Diabetes 91 The father used a great deal of energy in order to equate his son’s diabetes with a familiar domestic situation that could be easily understood by others. However, he explained that in his attempt to do this, he had blocked Out many of his previous thoughts, and had become excessively preoccupied with his son’s diabetes. In another situation, the mother of an infant diagnosed at 5 weeks of age explained that it was  impossible to describe her son’s condition to others because she didn’t even understand what was happening herself. She explained: D: We really blocked the whole thing out. You see, ‘T’ was our first baby, and we couldn’t even understand the normal things a baby should do so to try to explain what to do for a baby with diabetes was overwhelming. We tried to explain to other people but it was tough so confusing. ...  Another mother who tried to explain the required treatment regimen explained how difficult it was in the beginning, due to her own confusion. M: Even trying to explain to others like my sister it was very hard. She didn’t even want to learn she was so afraid so in the end I didn’t try I found it confusing myself anyway even I didn’t fully understand. ...  ...  ...  ...  ...  ...  Because of the multifaceted nature of diabetes and the diabetic regimen, parents found it difficult to describe their child’s condition to others. They also found it was difficult for others to accept. As one mother explained: M: Well, you see, no-one in our family could understand or accept it. We didn’t know anyone who had diabetes. My mother said, ‘he’s much too young, diabetes is only for old people, he’ll grow Out of it, just you see.” And I wanted to believe my mother, I didn’t want to believe the doctors, I wanted the doctors to be wrong. After all, we couldn’t explain it. We didn’t know the cause. Parents also had difficulty because there was no one specific cause for their child’s diabetes. Looking for a cause Trying to establish a cause for the diabetes was a pursuit undertaken by some parents, even though it had been explained to them by health care personnel that there was no known or no specific cause. This pursuit for a cause was a coping behaviour used by some parents in an attempt to resolve guilt and  Parents’ Perceptions of Caring for Infant Diabetes 92 blaming, and to reduce stress.  In one family the father’s preoccupation in looking for a cause was  perceived by the mother as a method of absolving himself from responsibility. The mother explained: M: Well, ‘G’ [dad] just read and read. Being a librarian, he was sure he would find the cause. Maybe it was because we were both older parents. ‘G’ was 50 and I was 43 when ‘A’ was born. Maybe it was the food we fed our son, because both ‘A’ and his dad loved sweet and rich food. All ‘G’s energy went into looking for a cause, instead of helping me to take care of ‘A’ However, this mother also accepted the possibility that genetics played a large part in her son developing diabetes. Because of a strong family history of diabetes, this mother almost expected it. M: Of course, despite what they told me about viruses and immune systems, I knew part of it was genetic. I’d almost expected it with my brother’s two children being diabetic and my mother too. In another family, where the father could trace no family history of diabetes, finding a cause was important to his peace of mind. He explained: D: Well, we have absolutely no diabetes at all in our family none. And of course, ‘K’s [mother’s] father has diabetes So I was tempted to say, yes, that’s the cause. But the doctors say there is no one cause. It would have been easier for me to have a definite reason why this happened. I think I could have accepted it better. ...  ...  For another family, the parents’ own personal philosophy about life helped them to accept their child’s condition without fully understanding the reason why. The mother philosophically explained her views this way. M: Well, if we are looking for a cause, I expect we are both to blame. You see, ‘S’ inherited the diabetes gene from his dad, but he inherited the protein deficiency gene from me, and maybe either or both could kill him. But we gave him life, he’s our son. He’s very close to his dad There is a definite and special bond between them. Maybe because ‘B’s [dad’s] brother also has diabetes, and ‘B’ well, he feels very close to them both. ...  As for me, or as for us, who needs to know the cause. He’s a great little guy. Sure, he has diabetes and that’s a hassle we have to watch him carefully but hey we could all be blown up tomorrow anything could happen, so why worry about something you can’t change We just accept it, even if we don’t fully understand why. ...  ...  ...  ...  ...  ...  All parents did not share this philosophy. Many had difficulty understanding and accepting their child’s condition. As one mother explained:  Parents’ Perceptions of Caring for Infant Diabetes 93 M: You see, there is no diabetes in our family. I tried to trace it back, but couldn’t, then I thought it must have been me. I’d given it to him because of my gestational diabetes. I went all over town asking every doctor, “Did I give this to my son?’ I was sure it was me, but the doctors said not, it wasn’t me, it was nothing to do with gestational diabetes. But that didn’t stop everyone saying, “it’s her, she gave it to him.” Even in the hospital, when they began to tell us all about this, the shots, that it was a lifelong illness, I just cried and cried every day. I thought, “Oh God! his poor little boy, all his life, he can’t eat, he can’t play sports, his whole life is ruined” and I couldn’t think straight in the beginning. Most families did look toward a family history of diabetes as the cause, even though it had been explained to them that there was no one specific cause but, instead, a combination of factors that conthbuted to diabetes in children.  This searching helped to reduce some of the guilt and sadness  experienced by the parents. Considering alternatives Another strategy used to reduce these guilt feelings of despair was to consider their child’s diabetes against alternatives. Although shocked and taken aback by the diagnosis of diabetes in their young child, many parents used the coping strategy of comparing their child’s condition with alternatives. This comparison involved considering diabetes relative to other chronic conditions, and most parents described diabetes as a favourable alternative. One mother who had been told her child might have leukemia was even relieved at the diagnosis. She explained: M: I was terrified  ...  imagining the worst  ...  she looked so ill and pale.  Then they said she had diabetes. I WAS SO RELIEVED, CAN YOU BELIEVE THAT, I WAS ALMOST HAPPY I KNEW I COULD HANDLE DIABETES I thought I can handle that as long as my baby isn’t going to die can you believe, I was relieved. I thought of all the other things it could have been ...  ...  ...  Other parents compared their toddler’s diabetes to different conditions they encountered in other young children at the hospital. M: Initially the whole impact hadn’t hit instead we thought of the other things it could have like other horrible diseases and we preferred this to the alternatives. been ...  ...  ...  D: Yes, it’s so hard to deal with. But one thing, when we were in the hospital we saw so many other kids with most terrible things, we were even feeling so lucky that it was only diabetes for ‘D’ and we could at least deal with that. You see, before the diabetes, we had never even  Parents’ Perceptions of Caring for Infant Diabetes 94 thought about the Children’s Hospital or what went on there. Until something like this touches your life, you are totally ignorant of all the suffering and the children with cancer you just shut it out. I think parents of healthy kids should all go the Children’s Hospital and just see all the pain and suffering thai goes on there, it’s a real eye-opener! This downward comparison of diabetes was based on the parents’ perceptions of other children with  chronic long-term illnesses. During their own child’s hospitalization the parents were exposed to multiple health problems that they had never encountered before. Consequently, their own child’s diabetes was perceived as being less onerous. Another parent drew a similar comparison, but this time to more specific diseases. M: On the ward with ‘G’ there were all these children with chest tubes and needing heart surgery and things like that and there were children with cystic fibrosis. I don’t think I could thump my child’s chest 4 or 5 times daily like parents of children with cystic fibrosis and I know ‘G’ isn’t going to die, she’s going to live and that makes a big difference to me. I can handle this. ...  ...  However, this mother also explained how difficult it was to see her child pricked and wondered how she would handle it. M: Of course, for ‘G’ there were all the I.V.’s and monitors, to begin with. Then people doing finger pokes 4 or 5 times a day. And sometimes I couldn’t stand it. I just walked out and cried and prayed I wanted her to be cured when we went home. It was hard. ...  The father of a six-month-old infant who had initially been diagnosed with possible meningitis explained his ambivalent feelings this way:  D: When he was first diagnosed they said it could be meningitis. Then, when they told us it was diabetes, I was relieved I thought diabetes was better than meningitis. But I’m not so sure now. You see, he’d be over meningitis by now but diabetes, it never goes away. ...  ...  This father had grown up with a brother who developed diabetes at 13 years of age. Consequently, he  was aware of the many long-term implications of the disease. However, the mother interjected at this point, explaining: M: Oh! sure, hut he could also be brain damaged or dead, had it been meningitis. He’s certainly not brain damaged and he’s very much alive. ....  Parents’ Perceptions of Caring for Infant Diabetes 95 During their infant’s or toddler’s hospitalization, parents tended to compare diabetes with other acute or chronic conditions. Later, during phase three of their experience, a comparison was drawn between the young child and older children with diabetes. As well as comparing their child’s condition against others, parents also compared the modern management of diabetes with the treatment of the disease in the past. They considered all the advances in technology and management that would ensure a healthy future for their child.  This looking to the future is described by the parents as an important strategy utilized  frequently in their day-to-day experience. Clinging to hope During their child’s hospitalization, most parents had received education and information about developments in diabetic research. They expressed an almost false optimism for an early cure, and used this optimism and hope as a coping strategy and a motivating factor to struggle on. One mother summed up most of the parents’ articulated feelings this way: M: You see, in the hospital they told us all about the research, and I believe they must be this close [mum put her hands close together] to a cure. Without that hope, what have we got? We believe there will be a cure for ‘G’ before she is a teenager. How I look at it, 100 years ago she would have died, 25 years ago there were no glucometers so they are whittling away at this what we have to do is to keep her well until the cure comes. That’s the least we can do. ..  ...  After a pause, this mother continued: M: At the hospital, they gave us faith and hope. That’s what we needed; it’s what kept us going and sustained us. A father agreed: D: We were given a lot of hope that a cure would be found. And with him being so small, we know that even if it isn’t a total cure, there will be new things to make it easier for him as he gets older. Our job is to prevent complications while he’s small so that when a cure comes along he will be ready. We went home with a lot of hope and determination to keep him well until a cure was found.  Parents’ Perceptions of Caring for Infant Diabetes 96 This hope for the future was a motivating factor that enabled parents to get on with the job of caring for their young child’s needs in the hospital setting. It also provided the parents with determination and confidence when they faced the stress of taking their child home.  Summary Because most infants and toddlers are extremely ill when first diagnosed with diabetes, the experience of the diagnosis and hospitalization of their child was described as extremely stressful for all parents in this study. In their accounts the parents described multiple stressors, their reactions and emotional responses to these stressors and coping strategies used to deal with the stressful situation. The initial stressor described by the parents was the diagnosis of diabetes in their child, and for most parents this was a devastating and frightening experience. The child’s emergency admission to hospital, time spent in intensive care units, the constant need for invasive procedures, and the alien hospital environment were all events or sources of stress contributing to feelings of shock, loneliness, disbelief, fear, helplessness, exhaustion and loss of control over their situation for parents. On top of this the magnitude of the task of learning how to care for their young child and manage the diabetic regimen was described by parents as overwhelming. Lack of understanding of their child’s condition, lack of privacy and the perceived loss of family supports for some parents exacerbated their level of stress. For other parents their past experience with diabetes influenced their ability to accept their child’s condition and adapt to the situation. Despite the magnitude of this stressful situation, the parents also identified coping strategies utilized to deal with their child’s condition and hospitalization. Their accounts also outlined strategies used to accept and acquire management skills required to care for their infant or toddler at home.  Parents’ Perceptions of Caring for Infant Diabetes 97 Phase Two: Caring for the Young Child at Home This phase of the parents’ experience spanned a period of from six to seven months post diagnosis for most families, but some parents described it as lasting even longer. During this time period, the parents assumed full responsibility for the day-to-day care of their diabetic child. They struggled to achieve an appropriate standard of competence that would ensure the provision of safe, effective care and management for their infant or toddler, and they began to understand the widespread implications and the pervasive influence that diabetes could have on the child and on each member of the family. Some of the variables that impacted on the parents’ experience were the age of the infant or toddler at diagnosis, the presence of other siblings in the family, and the length of time since diagnosis. Some families were still struggling with this phase of their experience when first interviewed. Others had to recall the events that comprised this experience. However, regardless of the timeframe, issues and concerns arising from their efforts to manage their diabetic child’s condition at home were consistent across all parents’ accounts.  Perceived Stressors Many of the stressors identified by the parents involved their struggles with events happening in their lives over which they had little control. The major themes extracted from the parents’ accounts described the stress associated with taking the child home, necessary changes in lifestyle, perceived losses, the uncertainty and unpredictability of blood sugar levels, hyperglycemia and hypoglycemia, confrontations over food, giving injections, taking blood tests, and developmental issues for the child. When describing the stress associated with the impact of their young child’s diabetes on their lives, the parents identified this stress in terms of issues and concerns that impacted on their situation. Most parents began their description with the coming home experience.  Parents’ Perceptions of Caring for Infant Diabetes 98 Taking the infant or toddler home Going home was described as a frightening experience by most families. Although the child was now well and active, the magnitude of the task of caring for their child without the support of hospital staff was overwhelming to most parents. Being totally responsible for their child’s management and very existence was perceived by parents as an awesome and frightening task. The fear of hypoglycemia was already perceived as a major stressor in the parents’ lives. They were unable to relax or even sleep at night due to fretting and worrying in case their infant’s or toddler’s blood sugar levels fell low. Parents were apprehensive about taking their child home and described this as being a frightening new phase in their lives. A phase when they were in charge but not necessarily in control, and a phase they had looked forward to with confidence initially, but which proved to be a nightmare experience. Parents did not feel ready for this responsibility. One father described the event quite graphically: D: After 10 days, we were ready to go home. At least they said we were ready. We didn’t feel ready. But by this time, ‘R’ was lively, putting on weight, and we knew we had to take on the responsibility and go. M: Yes, and we came home and I was saying to myself, “I don’t want to do this, I don’t know what to do, I cannot do it.” I remember I couldn’t sleep, I was terrified he’d go low in the night, I was up testing his blood sugar 3 or 4 times a night, I was so anxious. Then he started going low all the time because he was beginning to honeymoon, and he was on so much insulin, almost 9 units, and he hasn’t even got back up to that dose again yet. We didn’t know about changing the insulin then, so we spent all day, every day, trying to feed him. It was a nightmare, and I did a blood test and he was 4 and he wouldn’t eat and we didn’t know what to do. Another family described it this way: M: We had just wanted to get Out of there and back home into our own beds to relax, to sleep. We were excited and felt confident. But the impact of the total responsibility for our son’s life and very existence suddenly hit me. Instead of sleeping, we were up all night fretting and worrying in case his blood sugar went low. At the hospital they said we didn’t need to do a blood test at night, but we did for reassurance. Another mother described the event of leaving hospital and beginning to care for their child at home as moving on to a new experience.  Parents’ Perceptions of Caring for Infant Diabetes 99 M: It was like leaving all the security and support behind. A new phase to our lives. We were in charge now. ‘C’ was our responsibility. But we also knew there was no going back to how life was before ‘C’s diagnosis. Almost everything would be different. As well as the stress associated with taking the child home, parents also described their realization that life would never be quite the same as it was before. Everything would be different. Struggles with the stress of necessary changes in lifestyle was the next theme identified from the parents accounts. Changes in lifestyle The initial impact of their child’s diabetes was described in the context of immediate changes required in lifestyle, due to the imposed management regimen. The stress associated with changes in lifestyle revolved to a great extent around the imposed management regimen.  Trying to fit all the  necessary injections, blood tests and dietary requirements into their day consumed parents’ thoughts and their time. Some parents’ work schedules had to be changed in order to accommodate the giving of insulin or the testing of blood. Fathers were required to give up social pursuits in order to be home to handle certain aspects of their child’s required care. The imposed and rigid regimen led the parents to frustration and exhaustion, and fears that they would never handle this situation.  The parents’ lives  revolved around their child’s need and the parents saw no way out. The very specific instructions provided for parents in the hospital created anxiety because of their inflexibility. Most parents believed implicitly that they could not deviate in any way from the imposed schedule without causing extreme harm to their child. Parents perceived no room for flexibility and the schedule became the backbone to their very existence. The impact of the required regimen on their lives was perceived differently by individual families, but the outcome remained constant. A major change in lifestyle was required. The following extracts from the parents’ accounts illustrate the extent of this stressor. One mother explained: M: When we came home from hospital it was so hard, so incredibly hard. I used to look at him and say, ‘This can’t be happening to us, no way.” For one thing, ‘S’s [dad’sJ and my relationship changed. Our life changed.  Parents’ Perceptions of Caring for Infant Diabetes 100 ‘S’ [dadj was so good, so patient, but he had to change his shift. You see, he still does all the needles and finger pokes. The hospital experience was too traumatic for me. So now ‘S’ works from 11 p.m. to 7 a.m. graveyard, so he is home all day. I’ve braced myself and can do needles if I have to, but ‘S’ is much better. So I do all the food, ‘S’ does all the needles. It was hard for us to believe we had to do all this for our little boy. Another family described the impact of the teaching and instructions provided while their child was hospitalized. D: I think initially I was so concerned about the specific instructions we were given in the hospital, and how we could manage that inflexible regimen, which seemed virtually impossible in a two-year-old. It was set out as extremely important. I was so anxious and worried when we first came home. The mother agreed. M: Now, in the beginning, when we came home I said, “How can I manage this child?, I can’t do it, how can I change my whole life to revolve around this imposed schedule?” and having a two-year-old who doesn’t know what’s going on, and doesn’t understand needles, and doesn’t want to eat, I thought I just can’t do this, I cannot, it was just frustrating. ...  Many parents described the difficulty they had with deviating from any aspect of the learned regimen. One father put it this way. D: Difficult? It was to us. You see, we heard all this “you must do this, and you must do that” and this schedule became the backbone to our very existence. There was no flexibility in our world, we couldn’t see a way out and every detail had to be followed. Another mother explained: M: In the beginning, we didn’t change a thing. I became convinced that sugar was poison didn’t dare deviate in any way at all.  ...  I  It was Halloween, just after he was diagnosed, and he was so little, he was happy just opening the door. But you know, he just sat there on the stairs and he had to hold this chocolate bar in his little hand and he wouldn’t let go. It was quite pathetic, but I had to say “No, you can’t eat” and he said “I just hold it”. It began to melt but he just held on to that until he fell asleep, just as if he had to he a part of it, and I felt so bad. But I couldn’t even let him have a taste. This strict regimen also created an issue surrounding food for another family.  Parents’ Perceptions of Caring for Infant Diabetes 101 M: It took us a while to get used to this, you see, he can’t even have an off day, we seem to be eating and feeding him all the time. Sometimes we just seem to sit at the table all day, and if he’s had his insulin dose, I know he’s got to eat Then at other times, he’s hungry but it’s not mealtime. One mother explained how the imposed restrictions had changed their life by taking some fun out of events for both herself and her young diabetic child. She described how even the simple pleasures of preparing meals or cooking together had to be changed because of dietary restrictions for the child. The resulting stress caused reactions of anger and despair for this mother. M: Before ‘D’ had diabetes, it used to be fun. He’d help me bake or, when I was cooking, he could taste or have a carrot stick or as many cookies as he liked. Now we can’t do that, it’s all stopped. All those spontaneous things we used to do, we can’t do them anymore. This schedule has taken so much fun out of life, but I’m afraid to change anything it could do ‘D’ harm. ...  A father explained how his life had changed because of his feeling of responsibility to his wife and young son. Night school classes were dropped because diabetes consumed his every moment and his every thought D: I was enroled in French. I love the language, but then ‘R’ developed diabetes and my whole life was in turmoil. My head was so full of ‘R’s needs and what he had to do all day and every day that there was no room left for French. I gave it up. I gave everything up. The stress even at work was unbelievable I would imagine what was happening and I wanted to be there at home with ‘R’ [child with diabetes] not at work. ...  ...  ...  Another father explained. D: I was so stressed out I developed stomach pains. I think it’s an ulcer. You see my work is so stressful so demanding usually it occupied, my thoughts, then I’d come home, relax and play with my kids. Now that’s all changed. When I come home we don’t play anymore, it’s blood tests or insulin or worrying about blood sugar levels. I never relax. ...  ...  For most parents the pleasure of playing with their children after work had been exchanged for blood tests, injections and worries about blood sugar levels. In general, some of this total absorption with their child’s diabetes and total inflexibility on the part of the parents did ease before the end of the phase of their experience. However, the imposed changes in lifestyle remained and had to be dealt with. One parent explained it this way.  Parents’ Perceptions of Caring for Infant Diabetes 102 M: In the beginning the stress was so great we couldn’t relax at all or even think about ourselves. We were riveted to what had been taught in the hospital. There was no leeway, no deviating, no ability to be flexible or to make any decisions. We thought this was how life would always be this was our new life the only way to handle our child. ...  ..  The parents’ perceived need to implicitly and vigilantly follow the imposed management regimen resulted in losses that the parents at this point saw as irretrievable. These losses comprise the next theme. Perceived losses All the families in the study described losses in their lives due to many changes imposed by their child’s diabetic management regimen. These losses were perceived as extremely stressful and disruptive, and induced periods of mourning.  The parents described losses of spontaneity, flexibility, freedom,  support systems and other intangible losses. No family could see a way to overcome these losses. The loss of flexibility was perceived as inherent in the rigidity of the child’s management regimen. Loss of spontaneity was perceived in the need to always plan, always prepare and be constantly vigilant in thinking, feeling and anticipating for the child. Loss of freedom was described as feeling trapped and always tied to the child and the regimen. It included a fear to leave the child with others. Loss of support systems resulted in social isolation. Intangible losses were difficult to describe, but parents attributed these losses to themselves and to their child. When describing loss of flexibility the parents stressed their need to follow the same routine day in day out, with deviation. They perceived any attempt at flexibility as leading to a crisis situation in the form of low blood sugar levels for their child. One mother explained. M: There is no flexibility. It must be the same food at the same time every day. There is no more sleeping in on weekends. Insulin is due at 7 am. Everything must go like clockwork. At 11 a.m. whatever we are doing we have to stop. It’s blood test time, then lunch. If you try to be too flexible the blood sugar drops and ‘C’ is in a crisis situation. Every nap time I have to waken him right at 2 p.m. poor thing can’t even have a full nap. ...  Because of the loss of flexibility little time is left between meals and testing for spontaneous outings or the decision to do something different. Everything had to be planned. Loss of spontaneity was attributed to the demands of the daily management regimen. One family explained.  Parents’ Perceptions of Caring for Infant Diabetes 103 M: I had no idea how demanding this diabetes would be. In these six months since ‘D’ developed it I’ve noticed we haven’t been as spontaneous as a family anymore. D: We can’t just go out and let the kids run and when they are tuckered out, bundle them back into the car like we did before or like other families do. We can’t do that anymore, everything must be planned, what food to take, how active he is or when the next meal or blood test is. M: That’s true, it’s affected us as a family. But also little ‘D’ can’t be spontaneous anymore. We’ve just been going through a phase when he can’t or won’t eat, he’s had a cold and flu and doesn’t want to eat. But unfortunately he has to eat and I feel so sad. I feel I’m not feeding ‘D’ anymore, I’d feeding the insulin and I’d give anything to just let him be a normal little boy and not have to eat if he isn’t hungry. Another father described loss of spontaneity at the frustration of taking his toddler to the park, but having to stop in the middle of a game and think about the child’s next meal or snack.  He compared his  restrictions to the freedom of other families, and mourned the loss of both freedom and spontaneity. He explained the changes since his son’s diagnosis. D: I find it’s like hell. I used to enjoy going to the park. Now I feel a lack of freedom, a total loss of being ourselves I have to think about the next meal the next snack or if we’ve been running too much, I have to wonder if ‘S’ is too low yet he’s been doing what a normal little guy should do. Sometimes we have to rush home we can’t stay there like the other kids, and it’s so frustrating. You’re always afraid. ...  ...  ...  ...  ...  Loss of freedom was interrelated with loss of spontaneity. Parents described feelings of being trapped or tied like a prisoner to their child with diabetes. The demands of the management regimen also resulted in the loss of freedom of choice. Parents no longer had the option or choice with regard to the foods their child could eat. They also had no choice as far as insulin was concerned; they could not omit or delay it even for a day. One mom explained: M: It’s like being trapped you can never get away, never be free again. Like a prisoner, only the prison is diabetes; and the chains are insulin, or blood tests. ...  Another mother explained: M: For the first few months after ‘T’ was diagnosed, I didn’t go anywhere. By the time I got him fed and dressed and in the stroller, it was feed time again or time for another blood test. So I’d stay put, but I didn’t just lose my freedom, I lost my friends, too. I was afraid to visit and afraid to leave my baby.  Parents’ Perceptions of Caring for Infant Diabetes 104 Being trapped and a fear to go out, or to leave their child with others, created a situation that led to loss of support systems for families. Parents were often so tied up and busy caring for their child’s needs they and no time for friends or for socializing. One mother described her situation: M: I was utterly lonely, but I had no time for anyone else. diabetes.  I was consumed by my baby’s  Other parents described situations where they became so busy and so wrapped up in their child’s needs that they didn’t take time to teach others how to care for their infant, and they didn’t attempt to go out. Fear on the part of relatives and friends to get involved also contributed to the loss of support systems. They saw how all-consuming the child’s regimen was and they felt they couldn’t handle it. Parents themselves were often too exhausted to socialize. As one mother explained, M: It’s too difficult to describe really, but I was so busy that other people were afraid to call my family were afraid to visit, I had so much to do so I wouldn’t see a soul all day until ‘T’ [dad] got home then I was too exhausted to socialize I’d go to bed while ‘T’ took over. ...  ...  ...  Sometimes parents would make the effort to get a babysitter in or attend a family function. However, the child’s management regimen posed a stumbling block, and others were not willing to cope, or care for the child. M: The babysitter said she would come, then changed her mind. She was afraid of all that had to be done. Another mother explained: M: Even my sister won’t do a blood test, don’t ask me why. She’ll care for ‘J’ for short periods only, but won’t cope with tests I can see it’s a big responsibility. ...  A father explained: D: We are really still afraid to go out. You see, even relatives are afraid to be left M: Yes, and even though it’s lonely as hell, I feel safer when I’m there out but it’s more stressful to leave him. ...  ...  it’s stressful not to go  Parents’ Perceptions of Caring for Infant Diabetes 105 One mother who wanted to obtain support and return to work on a part-time basis found it impossible to get the support she required. As this mother explained, other people did not consider a toddler with diabetes to be a normal child. M: I wanted to return to my job, just two days a week. We interviewed sitters; one was afraid of liability one told an acquaintance (not us) that she preferred to care for a normal child. It really hurt. You see, we try to look at ‘S’ as a normal little girl, but it made us realize that she’s not. ...  Only one mother was truly philosophical about the loss of support systems, and she described her feelings this way: M: Well, after all, he is only very young and on top of that he has diabetes you see, I figure that mothers of new babies don’t trust other people with their infant much, anyway. When you have a child so young, you usually do most of the care so diabetes or not, I probably wouldn’t have got out as much anyway, and I wouldn’t have felt comfortable leaving him for long either not until he’s older, anyway. ...  ...  ...  Generally, socialization was a problem for parents during the early months of their experience, and loneliness was a major source of stress. From the parents’ accounts, it appeared that the younger the diabetic child, the greater the amount of loneliness experienced. The parents of a young infant explained: M: I feel so isolated, so cut off, so utterly alone sometimes. You can’t find a babysitter because no one will care for a baby with a health problem. D: Once I go to work, all M [mom] has are the four walls to stare at. It’s very lonely for her. Parents of older toddlers did take their children to the park, to play groups and to grandparents’ homes. Nonetheless, all families experienced changes in socialization patterns. A father explained: D: Well, we do go out, but we usually take ‘Ch’ with us. It’s different now we never get time just for ourselves [parents], and something is lost we’ve lost a spark, an energy, a joy we had before. ...  ...  Like this father, other parents also described intangible losses for themselves or for their child. These losses were difficult to explain, difficult to truly identify, but something was gone from their lives. Sometimes the loss was described as the loss of a normal child, the loss of opportunities for the parents,  Parents’ Perceptions of Caring for Infant Diabetes 106 or the loss of opportunities for the child. Sometimes the parents wistfully mourned the loss of happiness or loss of the joy of life. The following parents’ accounts describe these losses. M: It’s so difficult to describe, to define you see, she’ll never have the opportunity to try things the new foods and tastes a 15-month-old should experience. She was just beginning to get excited about food now she will never have the pleasure. ...  ...  Another mother tried to explain: M: It’s like a part of you and your life has gone forever., it’s difficult to explain, but we were just beginning to really enjoy being parents, planning or dreaming of ‘R’ as a hockey star it was a feeling of lost opportunities for him. ...  Parents of an infant described it this way: D: Well, he was so tiny, and something inside of him had gone so very wrong it didn’t seem fair we felt sorry because we’d never know what it could have been like had he been normal. ...  ...  M: It’s as if I’ve lost something, some part of me has gone forever. Yet another mother explained: M: She lost something a toddler should have, but I can’t describe what gone, I think a bit of her joy of life.  ...  a bit of her spark has  ...  The father of a two-year-old summed it up this way: D: It seems to me ‘D’s lost so much for such a liffle child. It’s his freedom, his independence all that’s gone. His life is ruled by tests and needles even his moods seem ruled by his blood sugar levels he can lose control so quickly, and that’s not his fault. I feel sad he’s lost so much. ...  ...  All the losses identified by parents were related in some way to the child’s diabetic management. This imposed regimen was intended to minimize or control fluctuations in the young child’s blood sugar  levels. However, blood sugar levels in these infants or toddlers could become a major source of stress to most parents. Unpredictable blood sugar levels The unpredictable nature of diabetes in this young age group was a major factor contributing to the stress experienced by parents participating in the study.  Parents described the pervading and  Parents’ Perceptions of Caring for Infant Diabetes 107 overriding stress of unpredictable blood sugar levels as contributing to intense emotional responses of fear and frustration. Fear of low blood sugar levels and hypoglycemia led to changes in attitude, an inability to trust others and loss of support systems.  Fear of complications due to high blood sugar levels  contributed to depression and psychosomatic reactions in some parents. Rapid fluctuations in blood sugar levels caused stress and concern for all families. The stress associated with constantly changing blood sugar levels in the young child were not limited to the parents’ early experience of managing the diabetes. Instead, this dichotomy between the fear and frustration of both hyperglycemia and hypoglycemia resulted in sustained ambivalence and confusion through both phase two and phase three of the parents’ experience. Consequently, although the major description of the parents’ struggles with these stressors will be presented here, it should be noted that this theme must be considered on a continuum through both this and the long-term phase of the parents’ experience. The recurring or sustained stress arose from the parents’ perceived struggle to both recognize and prevent the acute and frightening onset of hypoglycemia, while at the same time being cognizant of the need to prevent long-term complications associated with hyperglycemia. Dealing with the toddler’s or infant’s mood swings and irritability associated with rapidly swinging blood sugar levels was a constant source of stress. Controlling their own emotions was another struggle identified by parents. Accepting and attempting to understand rapidly fluctuating blood sugar levels was an ongoing struggle. The following parents’ accounts illustrated the pervasive nature of this stress. D: You see, there is lots of stress and concern, particularly if his blood sugars are too high or too low and to be able to stay in control of your own feelings is the hardest part, because he isn’t always in control of his feelings, and to be able to show love and understanding all the time to an infant who is out of control because of high or low blood sugars that’s the hardest part as a parent, to control our emotions. ...  ...  M: I need to hold back on my emotions and feelings. These up and down blood sugars drains the emotions, and causes constant stress. It’s a constant battle.  ...  it  D: Yes we know his mood swings are due to high or low blood sugars and it isn’t fair to discipline that’s when he needs all our love and patience. ...  ..  Parents’ Perceptions of Caring for Infant Diabetes 108 M: But sometimes I run out of patience, and I get very, very tired with all these constant mood swings. The parents then tried to explain the complexity of determining the cause or causes of their young child’s mood swings. Not knowing the cause was another source of stress for parents. D: Well, we have to think about so many things, has he had enough sleep, is he tired, did he eat enough, did he eat too much, is it snack time? M: But his own feelings, just whether he is deciding to be a little beggar or whether he’s high or just excited. But he is often totally uncontrollable. When he’s very low, he’s very irritable. But when he’s high, he’s also very irritable, so it’s difficult for us to know if he’s high or low. He’s so little, he can’t explain and we are not experts enough to pick up on it. The mother of a two-year-old explained her frustrations this way: M: Oh! dear, the blood sugars. I get so frustrated. It’s impossible to predict those blood sugar readings and they swing all over the place. During the first few months following diagnosis, some children enter a honeymoon or remission phase of their diabetes. The beta cells of the pancreas begin to pick up and produce insulin again. This endogenous insulin, coupled with the insulin by injection, can contribute to low blood sugar readings, and is a confusing concept for parents to grasp.  For the mother of a two-year-old who had previous  experience with diabetes in her own father, this honeymoon phase was a major source of stress. It was difficult to understand that an adult’s diabetes is considerably more easy to stabilize than is a toddler’s. In this case, the past experience with diabetes was not helpful in providing information to ease the parents’ stress. M: When we first came home, he went into the honeymoon phase and kept going low, and I kept thinking it isn’t working for ‘D’, the insulin isn’t right for him and we’ll never get him under control. You see, with my dad, he has this neat little package of testing, and insulin, and food, and exercise they all balance out. Whereas for ‘D’, there is no neat balance, he’s totally unpredictable, all over the place and his activity is so erratic. ...  For other parents, the utter frustration of being unable to control their infants’ or toddlers’ blood sugar levels led them to ask, “What have I done?” or “Why can’t I control this?” Even after days when the parents had conscientiously handled every aspect of their child’s care exactly as they had been taught,  Parents’ Perceptions of Caring for Infant Diabetes 109 the blood sugars fluctuated by extreme levels, which were difficult for parents to comprehend. One mother described her frustration this way: M: This is what’s so frustrating about diabetes the sugars go up and down, up and down and sometimes for no reason. You see, we always try to do the same exercise, the same nap, and one day the blood sugars are high, the next too low, and I can’t get a handle on it. Even when I seem to have done everything right, it makes no difference and the other night she was 4 (mmoLIL) at supper, then 20 (mmolJL) at bedtime and I get so frustrated, why does this happen, what have I done? ...  ...  The stress of seeing their toddler’s blood sugar level rise from 4 to 20 mmoIJL in a matter of four hours was apparent in the way parents articulated their story. For very young infants, the swings in blood sugar  levels could be even more dramatic. The parents of an infant who had been diagnosed at just six months described a drop in blood sugar from 25 to 3 mmolslL in a matter of 30 minutes. This was described as a frightening experience that created considerable stress for the parents. D: Sometimes he’s very irritable and we think it’s the blood sugar. Mind you, he can be irritable most of the time, so that’s not really a sign, so often we don’t know. His sugars can skyrocket for no apparent reason, and he can suddenly go very quiet and be low for no apparent reason; it’s very distressing. R: Yes. I understand. M: The blood sugar can drop from 25 to 3 mmol/L in a matter of half an hour. It’s very confusing, and quite terrifying. You don’t know what to do to prevent it in such a young child. While health care professionals tended to caution parents against the dangers of consistently high blood sugar readings, most parents identified an equal or more pervading fear of low blood sugar levels. Hyperglycemia and hypoglycemia The fear of consistent hyperglycemia and the threat of long-term complications for the child caused panic and physical symptoms in some parents.  The information provided by health care  professionals, which outlined the long-term effects of hyperglycemia, was interpreted by parents as the means towards compromising their young child’s future. The stress of seeing even one high blood sugar reading caused parents to visualize the many complications associated with diabetes for their child. Due  Parents’ Perceptions of Caring for Infant Diabetes 110 to the stress of their child’s diagnosis, parents initially misinterpreted information provided by health care professionals, or else could not understand or comprehend everything that they were told. This lack of comprehension added to their stress. The parents of a two-year-old discussed their initial stress during the very early months following their child’s diagnosis. M: Well yes, I was so worried about high blood sugars and long term complications for ‘R’. You see, with him developing diabetes so young, what are his chances for the future, I worry about all the secondary effects, all those complications. D: Yes, and I’d like to add to that, because in the hospital they told us all about the dangers and long-term effects of high blood sugars, so when we came home, every time I saw a high reading of 20 (mmol/L) or more, I’d get this terrible knot in my stomach every time. M: Yes, and I’m sure they did explain that to us about occasional high sugars, but we were too stressed to hear, or else we couldn’t understand, or couldn’t comprehend. It used to be “Oh! what can we do?, how can we deal with this, it’s high again!” D: I will never, ever forget that terrible knot in my stomach Past experience with diabetes in the family could also influence a parent’s perception of the situation.  Parents who were already experiencing diabetic, complications in an elderly relative were  particularly concerned about the diagnosis of diabetes in their very young child. One mother experienced considerable stress when she could not control high blood sugars in her two-year-old. M: I feel badly because I can’t control the blood sugar. You see, my father already has eyesight problems and circulatory problems, and ‘D’ is in this a lot longer than my dad. I always imagine the harm high and low blood sugars are doing to ‘D’ inside. This concern was shared by other families, in particular by one father whose brother had been diagnosed at 12 years and was already suffering some long-term effects at only 28 years of age. D: ‘S’ is so young, we’ll need to protect and care for him. I don’t want him to run into the problems my brother has not kidney problems. ...  Although concerned about consistently high blood sugar readings, some parents expressed less concern about the long-term future for their child. Instead, they were focusing their hopes on a cure for diabetes. One mother rationalized her lack of concern aboutlong-term complications by explaining that she expected a cure for her daughter within 10 years.  Parents’ Perceptions of Caring for Infant Diabetes 111 M: Oh yes! I’m concerned when you think about all the complications and side effects of diabetes and I try not to think about them now and we are worried when she comes in with the odd high blood sugar but we are hoping that there will be a cure in 10 years time and that we won’t have to worry about that. So, we are not really trying to worry about that right now (laugh). ...  ...  Many parents expressed less concerns about the future but, instead, described the intense and constant fear they had of hypoglycemia.  Apprehension and anxiety about their inability to detect  hypoglycemia in their child were major stressors described by all families in the study. Sometimes parents overlooked high blood sugar readings in order to avoid hypoglycemic episodes which they found extremely frightening. The following accounts expressed the parents’ fears: M: I am so afraid, so stressed out about low blood sugar reactions that I often let the blood sugars run high. I have to forget the future and live for today.. my goal is to avoid lows, avoid seizures it’s the threat of a seizure that causes the stress. ...  The parents of an infant diagnosed at 5 weeks explained their fears this way: D: It is absolutely terrifying for us the thought of him going low Because we are more worried about lows, we tend to keep his blood sugars a little higher. Not enough for him to have ketones or anything like that, but high enough so that ‘K’ [momi isn’t constantly concerned about seizures or severe reactions. If he’s low, that is constantly a very high stress level for us. ...  ...  M: Yes, you see our stress level is very high if he is low. Even during the day, he can just suddenly drop if his blood sugar drops, it’s crisis time he becomes unmanageable.. I can’t feed him and I’m usually alone when it happens, and I think he might die right then and there. So I really worry about lows more than highs. ...  ...  ...  D: We keep his blood sugars in a higher range than we should, but it’s the only way to manage our stress. Keeping the blood sugar high was a coping strategy used by these parents to manage stress. However, other coping behaviours employed by parents to prevent and manage hypoglycemia will be discussed under the third conceptual category of this phase of the experience. Parents went to great lengths to avoid hypoglycemia in their children, and these coping behaviours reduced stress. However, to further illustrate the fear and panic experienced by parents with regard to this stressor, the following parents’ accounts are provided.  Parents’ Perceptions of Caring for Infant Diabetes 112 M: One day I remember I went out shopping and it was time for his insulin so ‘H’ [dadi did a blood test and it was 3 something, but he went ahead and gave all the insulin anyway because it was just before supper and he thought ‘R’ would eat. Then ‘R’ refused to eat and ‘H’ was totally paralysed with fear and panic. D: Yes, and that is when we had no idea what to do except to feed him like we’d been taught. It was a 24 hour nightmare, up all night feeding little bits of juice or honey. The mother went on to explain their actions. M: You see we remember being told maybe only 10 minutes without food and a low blood sugar could result in a coma and we hung on to that. We saw no room for leeway and so were extremely anxious. ...  Some parents in the study had been forced to hospitalize their children due to severe hypoglycemic reactions. Consequently this recurring, sustained or absolu