Transitions and health trajectories of parents caring for children with intellectual disabilities

Little is known about transitions and lifetime health trajectories of parents caring for children with intellectual disabilities (ID). Parental health is important because of its far-reaching effects on parents themselves, their children, and society at large. The purpose of this qualitative study was to describe (1) how parents in mid- and later life (≥55 years of age) caring for children with mild to moderate ID narrate the transitions of this experience, and (2) parental perceptions of the influence of raising a child with ID on their health trajectories. Through a series of three in-depth, semistructured interviews, one of which included a lifeline illustration of their personal health trajectory, 6 couples and 6 additional mothers (n=18) shared their experiences raising children with ID and its relation to their life transitions overall. Parents narrated unique stories of resilience containing individual variations in both the content and prominence of the following challenges: (1) discovering, receiving, and accepting my child's limitations and diagnosis of ID, (2) caring for my child's health issues, (3) managing behavioral issues, (4) facilitating attainment of early developmental milestones, (5) ensuring a good education for my child, and (6) increasing my child's autonomy. In response to these challenges, parents initially took action to provide for their children. Over time, they learned to reflect over their experiences and utilize additional coping mechanisms for support. As parents adapted, they gained skills and learned lessons greatly enriching their lives. iv Parents could not link personal, physical health problems to their child's disability; however, they reported receiving benefits to their emotional, social, and spiritual health. Many parents initially experienced negative feelings, but over their lifespan, these feelings were replaced with increased love and gratitude for their child. Marriages and families became stronger as families worked together. Most parents found strength and/or meaning in their religious and spiritual practices. Based on the narratives of raising a child with ID, social actions can be undertaken to decrease risk factors and strengthen protective factors in order to maintain or improve parents' resilience and consequently their overall health. Early and continued professional and interpersonal support and resources are crucial.

TRANSITIONS AND HEALTH TRAJECTORIES OF PARENTS CARING FOR CHILDREN WITH INTELLECTUAL DISABILITIES by Alison Lee Eldredge A dissertation submitted to the faculty of The University of Utah in partial fulfillment of the requirements for the degree of Doctor of Philosophy College of Nursing The University of Utah May 2015 Copyright © Alison Lee Eldredge 2015 All Rights ReservedThe University of Utah Graduate School STATEMENT OF DISSERTATION APPROVAL The following faculty members served as the supervisory committee chair and members for the dissertation of Alison Lee Eldredge Dates at right indicate the members' approval of the dissertation. Lauren Clark , Chair 03/04/14 Date Approved Marjorie Pett , Member 03/04/14 Date Approved Michael Caserta , Member 03/04/14 Date Approved Mary Price , Member 03/04/14 Date Approved Barbara Mandleco , Member 03/04/14 Date Approved The dissertation has also been approved by Patricia Morton Chair of the Department of Nursing and by David B. Kieda, Dean of Graduate School. ABSTRACT Little is known about transitions and lifetime health trajectories of parents caring for children with intellectual disabilities (ID). Parental health is important because of its far-reaching effects on parents themselves, their children, and society at large. The purpose of this qualitative study was to describe (1) how parents in mid- and later life (≥55 years of age) caring for children with mild to moderate ID narrate the transitions of this experience, and (2) parental perceptions of the influence of raising a child with ID on their health trajectories. Through a series of three in-depth, semistructured interviews, one of which included a lifeline illustration of their personal health trajectory, 6 couples and 6 additional mothers (n=18) shared their experiences raising children with ID and its relation to their life transitions overall. Parents narrated unique stories of resilience containing individual variations in both the content and prominence of the following challenges: (1) discovering, receiving, and accepting my child's limitations and diagnosis of ID, (2) caring for my child's health issues, (3) managing behavioral issues, (4) facilitating attainment of early developmental milestones, (5) ensuring a good education for my child, and (6) increasing my child's autonomy. In response to these challenges, parents initially took action to provide for their children. Over time, they learned to reflect over their experiences and utilize additional coping mechanisms for support. As parents adapted, they gained skills and learned lessons greatly enriching their lives. iv Parents could not link personal, physical health problems to their child's disability; however, they reported receiving benefits to their emotional, social, and spiritual health. Many parents initially experienced negative feelings, but over their lifespan, these feelings were replaced with increased love and gratitude for their child. Marriages and families became stronger as families worked together. Most parents found strength and/or meaning in their religious and spiritual practices. Based on the narratives of raising a child with ID, social actions can be undertaken to decrease risk factors and strengthen protective factors in order to maintain or improve parents' resilience and consequently their overall health. Early and continued professional and interpersonal support and resources are crucial. This dissertation is dedicated to my son, Teancum and daughter, Ruby. May you always follow God's plan for you. TABLE OF CONTENTS ABSTRACT ....................................................................................................................... iii LIST OF FIGURES ............................................................................................................ x LIST OF TABLES ............................................................................................................ xi ACKNOWLEDGEMENTS ............................................................................................. xii Chapters 1. INTRODUCTION AND STATEMENT OF PROBLEM ..........................................1 Background and Significance .....................................................................................2 Growing Number of People with ID ..................................................................3 Widespread Effects of Poor Health among Caregiving Parents ........................4 Health Trajectories and Transitions ...................................................................6 Call to Build Nursing Theory ............................................................................9 Problem Statement ....................................................................................................10 Statement of Purpose and Research Questions .........................................................10 Research Questions ..........................................................................................11 Research Design Overview .......................................................................................11 Assumptions ..............................................................................................................11 The Researcher..........................................................................................................12 Definition of Key Terms ...........................................................................................15 2. REVIEW OF LITERATURE ...................................................................................18 Nature of Transitions ................................................................................................19 Developmental Transitions ..............................................................................20 Higher Stress among Parents of Children with ID .................................21 Stressors among Parents of Children with ID .........................................23 Behavioral Problems of Children with ID .....................................23 Transitioning to Adulthood ............................................................24 Unmet Expectations ......................................................................25 Stigma and Stereotypes .................................................................26 Finances ........................................................................................27 Time Burden ..................................................................................28 vii Traveling with and without Child with ID ....................................29 Situational Transitions .....................................................................................29 Health and Illness Transitions ..........................................................................30 Patterns and Properties of Transitions .............................................................33 Transition Conditions: Facilitators and Inhibitors ....................................................35 Personal Factors ...............................................................................................35 Community and Society Factors ......................................................................37 Patterns of Response .................................................................................................41 Progress Indicators ...........................................................................................42 Outcome Indicators ..........................................................................................45 Alternative Framework: Resilience Theory ..............................................................46 Chapter Summary .....................................................................................................48 3. METHODS ...............................................................................................................50 Research Design and Method ...................................................................................50 Research Participants .......................................................................................51 Demographics .........................................................................................54 Data Collection Methods .................................................................................56 Narrative .................................................................................................57 Life History .............................................................................................59 Lifeline Drawings ..........................................................................60 Study Protocol ...........................................................................................................60 Interview #1 .....................................................................................................64 Study Journal ...................................................................................................65 Interview #2 .....................................................................................................66 Interview #3 .....................................................................................................67 Data Analysis ............................................................................................................68 Data Analysis: Step by Step .............................................................................69 Research Question #1 .............................................................................70 Research Question #2 .............................................................................71 Issues of Study Trustworthiness ...............................................................................74 4. RESULTS .................................................................................................................76 Research Question #1 ...............................................................................................76 Discovering, Receiving, and Accepting My Child's Limitations and Diagnosis of ID ...............................................................................................78 Down Syndrome ....................................................................................79 Brain Damage ........................................................................................86 Autism Spectrum Disorder ....................................................................89 Asperger's Disorder ...............................................................................88 Reacceptance of ID ................................................................................93 Caring for My Child's Health Issues ..............................................................98 Summary of Routine Health Concerns ..................................................99 Health Concerns Impacting Parental Narratives ..................................100 viii Affecting My Child's Behavior ...................................................101 Learning from My Child's Health Issues ....................................102 Managing Behavioral Issues ..........................................................................105 One-Time Incidents .............................................................................105 Annoying Behaviors ............................................................................108 Rigid Routines ............................................................................118 Showing Inappropriate Affection ...............................................110 Misbehaving to Be Accepted ......................................................111 Behavioral Issues Unique to My Child .......................................112 Facilitating Attainment of Early Developmental Milestones ........................116 Ensuring a Good Education for My Child ....................................................119 Advocating for Additional Services and Opportunities ........................121 Advocating to Protect My Child ...........................................................125 Increasing My Child's Autonomy .................................................................128 Giving My Child Additional Responsibilities ......................................129 Pondering Independent Living ..............................................................132 Best Parts about Raising My Child with ID ..................................................134 Recognizing My Child's Positive Qualities ..........................................134 Exceeding Parental Expectations ..........................................................135 Opportunities Resulting from Raising My Child with ID ....................137 Parental Character Development ..........................................................138 My Child as an Important Family Member ..........................................139 Conclusion: Research Question #1 ................................................................140 Research Question # 2 ............................................................................................142 Influence of Child on Parents' Health Trajectories .......................................142 Physical Health .....................................................................................143 Emotional Health ..................................................................................144 Social Health .........................................................................................145 Relationship with Spouse ............................................................147 Relationship with Family ............................................................148 Relationship with Others .............................................................150 Asking for and Receiving Help from Others ..............................151 Spiritual Health .....................................................................................155 Health Trajectory Graphs ......................................................................157 Conclusion: Research Question #2 ................................................................163 5. SUMMARY AND CONCLUSION .......................................................................165 Discussion ...............................................................................................................165 Challenges and Stressors Experienced by Parents of Children with ID ........166 Discovering, Receiving, and Accepting My Child's Limitations and Diagnosis of ID .....................................................................................168 Caring for My Child's Health Issues ....................................................171 Managing Behavioral Issues .................................................................172 Facilitating Attainment of Early Developmental Milestones ...............173 Ensuring a Good Education for My Child ...........................................175 ix Increasing My Child's Autonomy .......................................................176 Best Parts about Raising My Child with ID ..................................................181 Influence of Child on Parents' Health Trajectories .......................................183 Physical Health .....................................................................................184 Emotional Health ..................................................................................184 Social Health .........................................................................................185 Spiritual Health .....................................................................................187 Health Trajectory Graphs ......................................................................190 Integrating Findings with Resilience Theory .................................................191 Conclusion .....................................................................................................192 Implications for Practice and Policy .......................................................................194 Reduce Risk Factors ......................................................................................194 Discovering, Receiving, and Accepting My Child's Limitations and Diagnosis of ID .....................................................................................195 Caring for My Child's Health Concerns ...............................................197 Managing Behavioral Issues .................................................................198 Facilitating Attainment of Early Developmental Milestones ...............199 Ensuring a Good Education for My Child ...........................................199 Increasing My Child's Autonomy ........................................................200 Strengthen Protective Factors ........................................................................200 Future Research ......................................................................................................202 Risk and Protective Factors ...........................................................................202 Experience of Raising a Child with ID ..........................................................203 Resilience and Transition Theories ................................................................204 Strengths and Limitations of the Study ...................................................................205 Conclusion ..............................................................................................................207 Appendices A. INITIAL INTERVIEW GUIDE .............................................................................210 B. REVISED INTERVIEW GUIDE ...........................................................................213 C. RECRUITMENT FLYER .......................................................................................217 D. RECRUITMENT SCRIPT AND FOLLOW-UP E-MAIL .....................................219 E. CONSENT AND AUTHORIZATION DOCUMENT ...........................................223 F. DEMOGRAPHIC FORM .......................................................................................227 REFERENCES ................................................................................................................232 LIST OF FIGURES 2.1 The Meleis Health Transition Model ........................................................................19 2.2 The Resiliency Model ...............................................................................................47 4.1 Negative Feelings Expressed by Parents ................................................................146 4.2 Coping Mechanisms Used by Parents ....................................................................146 4.3 Common Life Transitions for Parents ....................................................................158 4.4 Health Trajectories Graphs: Parents of Children with Down syndrome (Ds) ........160 4.5 Health Trajectory Graphs: Parents of Children with Other Types of ID ................161 LIST OF TABLES 1.1 Types of Health Trajectories Provided .......................................................................7 3.1 Inclusion Criteria ......................................................................................................52 3.2 Characteristics of Participants...................................................................................55 3.3 Example of a Transition Matrix ................................................................................72 5.1 Challenges from Literature Review and Study Findings ........................................167 5.2 Key Themes about Parents' Positive Perceptions ...................................................182 ACKNOWLEDGEMENTS I am grateful for the privilege to write this dissertation, and for the many exceptional people who have assisted me through the process. Frederick Q. Lawson and Sigma Theta Tau International supported me with their financing and generous research grants. Reviewers recognized my potential for teaching in nursing and the importance of studying the dynamics of parents raising children with ID. Dr. Lauren Clark, my committee chair, has been a mentor and a catalyst for this project. Her support has been paramount in completing this dissertation. My committee members read drafts and offered excellent suggestions that I incorporated into the document. Faculty members at the University of Utah College of Nursing gave me a strong foundation in the principles of research, and taught me to look at humanity and its unique situations with a multifaceted approach. My PhD cohort has provided friendship, understanding, and encouragement over many years, especially Deb Penney. I am most grateful to the parents who volunteered to share their intimate stories about raising children with ID. They inspired me to be better, taught me about love, and reminded me of the purpose of life. I am grateful to my family members and friends who provided me much support over the many years of pursuing this graduate degree. My parents have always believed in me and encouraged me to explore and develop my talents. Their love and friendship have been invaluable through my life's journey. Without friends and family members to help care for Teancum, encourage me, listen to xiii me, and provide ideas, I would not have been able to complete this process. I need to give special recognition to Jamie Lee for teaching me how to write and spending so much time and effort editing my papers. Lastly, I want to acknowledge my husband, Fred, who has patiently supported me and provided financial means for this to happen. We did it! CHAPTER 1 INTRODUCTION AND STATEMENT OF PROBLEM This narrative and life history study used narrative analysis techniques of Lieblich, Tuval-Mashiach, and Zilber (1998) to explore how older parents raising sons and daughters with mild to moderate intellectual disabilities (ID)1 identify and narrate the transition of raising their child with ID, and the influence of the child on their health trajectories. In-depth interviews and lifeline drawings made by participants to depict critical events and transitions in their lives (Gramling & Carr, 2004) were used as data collection methods. The results of this study lay the foundation for an understanding of the health trajectories of a specific population, and help build the science of health trajectory research. Once a thorough understanding is developed with additional studies, researchers 1 The term ID was selected for use in this study versus intellectual developmental disorder (IDD). A fact sheet about ID from the American Psychiatric Association (2013) explains that the DMS-5 changed the naming of mental retardation to intellectual disability (intellectual developmental disorder): IDD is a "parenthetical name...included in the text to reflect deficits in cognitive capacity beginning in the developmental period" (p. 1). Regier, Kuhl, and Kupfer (2013) state, "The joint naming convention reflects use of the term 'intellectual disability' in US law, in professional journals, and by some advocacy organizations, while the parenthetical term maintains language proposed for ICD-11" (p. 97). 2 may determine "how, when, and where to intervene" (Henly, Wyman, & Gaugler, 2011, p. S80) in supporting parents as they raise children with mild to moderate ID. Ultimately, this work may lay a foundation for understanding how to improve the health of parents caring for these children. In this chapter, I provide an overview of the research study. The first section outlines the background and significance of the study, and is followed by the problem statement, purpose, research questions, and an overview of the research design. Next, I provide my assumptions about the study and information about myself, the researcher, as related to the study. The chapter concludes with definitions of key terms used in the study. Chapter 2 is comprised of a literature review providing a foundation for understanding transitions and health trajectories for parents of children with ID. Chapter 3 explains methods employed in the study. Chapter 4 describes results, and Chapter 5 discusses what was learned, and implications for future studies. Background and Significance Why study the transitions and health trajectories of older parents of children with mild to moderate ID? In essence, the number of people with ID is growing at a steady rate, and caregivers in general are experiencing increased expectations and responsibilities while resources and support are dwindling (Feinberg, Reinhard, Houser, & Choula, 2011). The health of parental caregivers potentially affects the parents themselves, as well as their dependent children and society at large. Without these parents, additional means of caring for children with ID would need to be secured. This section begins with a description of the population, including information 3 about the growing number of people with ID and the widespread effects of poor health among their parent caregivers. Following the population description, health trajectories and transitions are defined and their benefits in relationship to parental caregivers explained. At the conclusion, I present a recent call to action urging nurse researchers to study transitions and health trajectories. Growing Number of People with ID Recent reports suggest ID affects 1 in 10 families in the United States (Administration on Intellectual and Developmental Disabilities, n.d.) or 2-5 % of the US population (Kerr & Norlin, n.d.). This number continues to grow because of increased life expectancies "related to improvements in neonatal care, nutrition, and socioeconomic conditions" (Krahn, Hammond, & Turner, 2006, p. 70). People with ID are now living well into adulthood and beyond as a result of medical, pharmacological, and biotechnological advances (McKeever, 1999). In addition to the increased number of people with ID and their longer lifespan, trends towards deinstitutionalization in the past half century and closure of long-term care facilities for this specific population add more responsibilities to parents (Feinberg et al., 2011; McKeever, 1999; McKeever, Scott, Chipman, Osterlund, & Eakin, 2006). In fact, the number of people with intellectual and developmental disabilities (IDD) living in public or private institutions in Utah has decreased from 25% in 1999 to 14% in 2009 (Smith, Lakin, Larson, & Salmi, 2011). In 2007, 70.2% of people with IDD in Utah lived in residential settings with 1-6 residents as compared with 4.9% in 1977 (Alba, Prouty, Scott, & Lakin, 2008). In 1998, 60% of people with ID in the United States lived with 4 family caregivers, and this number continues to increase. Although the number of people receiving residential and community services is increasing, government resources for serving parents and children are decreasing. Funding cuts exacerbate growing waiting lists, increasing the difficulty of obtaining services (Braddock, 1999; Feinberg et al., 2011). As a result, parents of children with ID are taking on added medical and caregiving responsibilities for their offspring (Heller, Stafford, Davis, Sedlezky, & Gaylord, 2010; McKeever, 1999). Widespread Effects of Poor Health among Caregiving Parents Family caregiving often comes at a high price for caregivers and their health (National Alliance for Caregiving, AARP, & Metropolitan Life Foundation, 2009; Schulz & Beach, 1999). Specifically, the increased workload and stress of parenting a child with ID results in negative physical, mental, emotional, and financial effects for parents (McKeever, 1999; Seltzer, Floyd, Song, Greenberg, & Hong, 2011; Yantzi, Rosenberg, & McKeever, 2007). Research on the long-term impact of raising a child with ID on a parents' health is beginning to emerge. Seltzer, Floyd, Song, Greenberg, and Hong (2011) found health of parents of young adults with ID (n=220) to be similar to parents of young adults without disabilities (n=1,042) during midlife; however, at about the age of 60, parents of these young adults tended to experience poorer physical and mental health than the comparison group. The health differences were even greater among parents whose young adults co-resided with them. Not only does the increased stress of raising a son or daughter with ID negatively 5 compromise parental health, it affects their parenting behaviors and ultimately the child (Hastings, 2002; Seltzer et al., 2011). Specifically, higher levels of stress and caregiver burden generally increase the risk of abuse (Rodriguez & Green, 1997; Svensson, Eriksson, & Janson, 2013; Whipple & Webster-Stratton, 1991), and are associated with higher risk of placing a person in a long-term care facility and/or utilization of formal in-home services (Gaugler, Kane, Kane, Clay, & Newcomer, 2005; Lu & Wykle, 2007). Conversely, parents with lower stress may be in a better position to help their children. For example, Merluzzi, Philip, Vacon, and Heitzmann (2011) reported lower stress levels and higher self-efficacy in caregiving tasks by caregivers of terminally ill family members who performed self-care behaviors. In addition, self-efficacy lowers stress, improves caregiver health, and decreases risk of burnout. Specifically, caregivers of family members with cancer or terminal illnesses who have increased self-efficacy are more successful in performing caregiving tasks and their dependents have greater health benefits and a higher level of well-being (Keefe et al., 2003; Merluzzi et al., 2011). In addition to affecting parents and children, parental health influences society at large since family caregivers are one of the greatest assets to our society. In 2009, over 65.7 million adults served as family caregivers to an adult or child in the United States (National Alliance for Caregiving et al., 2009), saving the healthcare system about $450 billion dollars that year alone (Feinberg et al., 2011). Parents may benefit society as they work with their sons and daughters with ID to reverse existing health disparities among this population. They are in an ideal position to help their sons and daughters establish healthy lifestyle behaviors and make sure they receive adequate health services, some of the goals established by the United States Surgeon General (Leavitt, 2005). In addition, 6 parents play an important role in encouraging and supporting their offspring to live in the community, an objective of Healthy People 2020 (Office of Disease Prevention and Health Promotion, 2014). However, how can parents effectively support their children and assist them in improving their health and well-being if their own health is deteriorating? The next section explains a first step in understanding parents' health, potentially leading to better outcomes for parents, their dependent children, and society. Health Trajectories and Transitions What is a health trajectory? Wyman and Henly (2011) defined a health trajectory as a pattern of health over time. The World Health Organization defines health as "a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity" (World Health Organziation, 2011, para 1). Henly, Wyman, and Findorff (2011) emphasized that health is "experienced over time" (p. S7) and is not a static state. I would add, achieving a state of complete health is most likely unattainable; however, this state can be used as an ideal to work toward. Health trajectory graphs, therefore, are useful tools for describing and measuring individual changes to a person's physical, mental, and social well-being, which together reveal an overall picture of health. Wyman and Henly (2011) differentiated health trajectories into five types. Table 1.1 lists the types of trajectories, as well as their definitions, and examples. Note that no specific examples for disability, end-of-life, and dying trajectories were provided by the authors. Transitions, as defined by Meleis (2010), are changes in "lives, health, relationships, or environments" (p. 52), which include changes in a person's physical, 7 Table 1.1 Types of Health Trajectories Provided (Wyman & Henly, 2011) Type Definition Examples Developmental Normal physiological changes and responses associated with typical stages of human development Puberty Menopause Aging Pregnancy and childbirth Retirement Death of a family member Caring for a child with a chronic illness or disability Acute illness Abrupt onset of illness with short course and/or exacerbations of chronic conditions Myocardial infarction Flare-up of multiple sclerosis Chronic illness Acute events resulting in irreversible damage and/or long-standing progressive diseases Stroke, spinal cord injury, Schizophrenia, Parkinson's disease Disability "Pathways to disablement that have the potential for being arrested or reversed through rehabilitation and other forms of interventions" (p. S2). End-of-life and/ or dying "Can occur across the life span and result from acute, chronic, and normal aging changes" (p. S2). mental, and/or social well-being. In this dissertation, transitions are the building blocks of parents' health trajectories; they are changes creating patterns. Without transitions, the health trajectory graph would be a flat line lacking deviation. Depending on the purpose of the health trajectory graph, the scope and magnitude can vary. An individual transition experience could be one of many in a health trajectory graph or that same experience could be the main focus made up of other, smaller transitions. For example, a divorce could be a single transition on a health trajectory graph representing a person's adult life or an entire graph could focus on the experience of the divorce with its accompanying transitions. 8 Over the past several decades, Meleis (2010) developed and refined a middle-range theory (connects general theories of social systems with empirically observable data (Merton, 1968)) and health transition model describing the nature, conditions, and patterns of response to transitions, and suggested the next step in transition research would be to define the "diversities and complexities in transition experiences through research with diverse populations in diverse types and patterns of transitions" (p. 64). This dissertation may add to the science as it describes a different type of transition among a population that has not been studied using the Meleis model. Her research is used as a framework in Chapter 2 for describing existing literature about parents raising children with ID, and is further discussed in Chapter 5 as I synthesize the findings from this study. With a greater capacity to understand and describe transitions and health trajectories, a foundation will be set in this dissertation for professionals and others to understand the experience of these parents. This understanding may assist in creating timely, appropriate, evidence-based interventions in the parent-child caregiving process, and create an improved awareness of the impact transitions have on health trajectories in terms of function and quality of life for these parents. Future studies could examine the efficacy of interventions in improving overall health trajectories. Particularly challenging transitions for this population could be anticipated, thus providing time for preparation that may curtail or ease adverse effects of the event. Individuals who may be at greater risk for decreased psychological functioning or physical health could be screened (Henly, Wyman, & Findorff, 2011). Eventually, individually tailored interventions based on transition and health trajectory research may 9 be developed and tested for effectiveness, with the ultimate goal of improving the health of parent caregivers. Knowledge gained from this study may also add to the creation and refinement of theories about transitions and overall health trajectories. Transition theory could focus on identifying transition sequences, the relative impact transitions have on health, and the overall pattern of healthful and risky transitions. Finally, the findings may endorse changes in current policies to provide parents additional support as they care for their children with ID. Call to Build Nursing Theory In 2011, a supplement to the journal Nursing Research with a special focus on health trajectory research was issued. In it, Henly, Wyman, and Gaugler (2011) challenged nurses to build the science of health trajectories and issued several calls to action. This study sheds light on their first call, which aimed to improve the ability to describe, measure, and use health trajectory graphs to improve health for all populations across the lifespan. In addition, the first call sought to better understand life transitions by identifying "patterns of transition outcomes and factors associated with successful transitions at the individual, family, and systems level" (p. S80). This study uses and describes health trajectories to create a starting point for identifying and describing transitions among parents raising children with ID. 10 Problem Statement Little is known about transitions and overall lifetime health trajectories of parents caring for offspring with mild to moderate ID. The health of these individuals is important because of its long reaching effects on parents, their children, and society at large. For example, parent caregivers may be experiencing poorer health as they age and assume growing responsibilities due to increased numbers and decreased mortality rates of people with ID, movement away from institutions into community care, and decreased amount of available funding and resources. Conversely, however, parent caregivers may also be exemplars of health as they overcome challenges and develop resilience. Knowing more about the transitions and health trajectories of these parents may be helpful "for knowing how, when, and where to intervene" (Henly, Wyman, & Gaugler, 2011, p. S80) in the parent and child caregiving process. Statement of Purpose and Research Questions The purpose of this study was to explore how parents caring for children with mild to moderate ID identify and narrate the transition of raising such a person, and describe the influence of this experience on parents' health trajectories. The results may be used to inform future research, and provide information for creating individually tailored interventions to support parents as they care for their children with ID, thus ultimately improving parental health. The health of their child may also benefit indirectly. In order to better understand the transitions and health trajectories, the following research questions guided the study: 11 Research Questions 1. How do parents caring for children with mild to moderate ID narrate the transition of raising such a person? 2. How does raising a child with ID influence parental health trajectories? Research Design Overview This narrative and life history study used in-depth interviews and lifelines to explore the transitions and health trajectories of parents aged 55 and above who were primarily responsible for the care and well-being of a son or daughter with a mild to moderate ID. Purposeful and snowball sampling were employed to select 6 fathers and 12 mothers to be interviewed three times each. Three approaches of narrative analysis from Lieblich et al. (1998) were used to analyze narrative data about the transitions parents experienced in their lives, particularly while raising a child with ID, and the influence of the said child on parental health trajectories. Assumptions Five assumptions influenced the creation of this research study. First, all human beings have the agency to choose for themselves who they want to become and the capacity to learn, grow, and make improvements in their lives; however, they may not have the resources or environment to support this trajectory. Second, every life contains transitions, because changes in "lives, health, relationships, and/or environment" (Meleis, 2010, p. 52) are unavoidable. These transitions are unique and complex among individuals. Third, caring for a son or daughter with ID is difficult and creates added 12 stressors and variations in transitions that parents of children without ID do not experience. Parents who care for a child with ID are at higher risk for experiencing decreased health and well-being (Ha, Hong, Seltzer, & Greenberg, 2008; Seltzer et al., 2011). Fourth, parents can teach healthcare professionals about their experiences and health trajectories so they can collaborate to identify beneficial interventions as they pass through transitions. The final assumption is that parents of children with ID could benefit from nursing interventions that assist them in experiencing healthier transitions, thus leading to improved health outcomes. The Researcher As a co-creator with participants in this study, it is necessary to disclose my background and experience as it relates to this study. I acknowledge my life experiences and beliefs influenced the way I designed this study, collected and analyzed data, and interacted with participants. This section provides personal information pertinent to this study. My nursing career began in 2002 when I graduated with a bachelor's degree in nursing. I worked in two inpatient units-rehab and ICU-before being employed in home health and hospice settings. In each place I worked, I interacted with a variety of family caregivers, and saw the triumphs and disappointments they faced while providing care. After a few years of working as a clinical nurse, I returned to school for a master's degree in Community Health Nursing. The program focused on assessing the needs of populations at risk and developing and evaluating programs building on population assets and addressing shared needs. Following graduation, I worked for about 13 a year as a teaching assistant before enrolling in a nursing Ph.D. program. The doctoral program provided didactic and hands-on experience in research. The courses I took provided me with skills necessary to conduct independent research. One of the most influential experiences was working as a research assistant studying healthy lifestyle interventions suited to overweight and obese young adults with ID and their parents. Prior to this experience, my exposure to people with ID and their parents was fairly limited. I had always known people with disabilities, but had not interacted significantly with them in my family, school, or community. As part of my role on the research team, I participated in preparing the Institutional Review Board (IRB) application, screening and recruiting research participants, study implementation, curriculum evaluation, and data entry and analysis. During the intervention, we challenged the young adults to go above and beyond what they and others thought they could do to care for their health. I loved watching them learn and excel as they worked on this challenge. Thinking about the young adults now makes me smile and chuckle a little. They were great! I remember one young man whose face would light up each time he saw me and he always wanted to give me a hug. He had paralysis in his arm and walked with a limp, which made exercise difficult, but that did not stop him. He was eager to try. I remember thinking I needed to encourage him to do more on his own, but his kind and appreciative personality made it hard to support his independence. Once a week while the young adults were learning about health and exercising, we met with their parents to talk about improving health in their families. I was impressed by their dedication to attend classes and enthusiasm to learn. Parents enjoyed 14 sharing ideas and experiences that worked, did not work, and appreciated the support. One group of parents even continued to meet together independently after classes ended. As we began meeting, I immediately detected parental fatigue and burnout. They tried many things over the years to improve their young adult's health, but now it seemed like too much work. In addition, they complained their bodies were wearing down and could not do as much as they could years ago. They loved their young adult and wanted the best for them, but were tired from years of providing continual care. Many, however, seemed rejuvenated with the classes and appreciated the extra support. As a result of this experience, I decided to focus my dissertation research on the health and well-being of parents of children with mild to moderate ID. Ultimately, I would like to develop programs for these parents building on their strengths and helping them reach their full potential as caregivers. In preparation for this study, I selected a chair and four committee members, each with unique expertise, to guide me through the dissertation process. The chair of my committee, Dr. Lauren Clark, is an experienced qualitative researcher and was the Principal Investigator for the healthy lifestyle intervention studies for the young adults with ID. My second committee member was Dr. Marge Pett, a social worker with an extensive background in family counseling and research. She was a co-investigator for the parent healthy lifestyle intervention. Other committee members included Dr. Michael Caserta, Dr. Barbara Mandleco, and Dr. Pollie Price. Their respective areas of expertise include older adults and healthy aging, children and young adults with disabilities, as well as qualitative research and narrative analysis. I began this study with over 5 years of marriage experience, so I knew some of 15 the struggles of being married. I did not have children at the time, but had helped friends and neighbors with their children and worked with children of varying ages at church. Many of my friends with children shared with me some of their challenges and triumphs. A few months prior to receiving clearance from the IRB to do the study, I found out I was expecting my first child. I finished all of the interviews, except for one, before my son was born. The study was completed about the time of my son's second birthday and the birth of my second child. My son helped me understand a tiny portion of the disruptions and joys parents in this study experienced. Although I am fairly new to research and working with people with ID, I felt my prior clinical experience, mentored research experience, educational background, and supportive environment assisted me in successfully carrying out this research study. Definition of Key Terms Key terms used throughout the dissertation listed in alphabetical order. 1. Child with ID: A study participant's biological, adopted, or step son or daughter to who has a mild to moderate form of ID. This term refers to the relationship, rather than the age of the person with ID. At the time of the study, the children were mainly young adults as they ranged in age from 16 to 54 years (Geiger & Castellino, 2011); however, the study focuses on the lifespan of the child. The terms person, son or daughter, and offspring are used synonymously with child. 2. Health: "State of complete physical, mental and social well-being and not merely the absence of disease or infirmity" (World Health Organization, 2011, para 1). 3. Health trajectory: "Pattern of health over time" (Wyman & Henly, 2011, p. S1) 16 composed of a series of individual transition experiences. 4. ID: Intellectual disability. "Characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18" (Definition of Intellectual Disability, 2011, para 1). A major tool for measuring intellectual functioning is the IQ test. Test scores below or around 70-75 indicate limitations in intellectual functioning. Adaptive behavior can be measured with standardized tests and is comprised of three skill types: conceptual, social, and practical. No testing for ID was done; parents reported whether their child was officially diagnosed with ID, had "below-average in intelligence," or "attended special education classes" (p. 482). These were criteria based on a study about health differences among parents raising children with ID performed by Seltzer et al. (2011). 5. Narrative: "Any prosaic discourse… [or] text that consists of complete sentences linked into a coherent and integrated statement" (Polkinghorne, 1995, p. 6). Narratives in the form of stories will be used. 6. Story: "Special type of discourse production… [where] events and actions are drawn together into an organized whole by means of a plot" (Polkinghorne, 1995, p. 7). 7. Stress: "A physiological response of the body to a perceived threat, either real or imagined" (Miodrag & Hodapp, 2010, p. 407) 8. Transition: "Change in lives, health, relationships, or environment" (Meleis, 2010, p. 52) including changes in a person's physical, mental, and/or social well-being. 17 Transitions create the patterns in parents' health trajectories. An individual transition experience could be one of many in a health trajectory graph or that same experience could be the main focus of a healthy trajectory graph and be divided into other, smaller transitions. CHAPTER 2 REVIEW OF LITERATURE The goal of this chapter is to provide background information for understanding the findings about the transitions and overall health trajectories of parents caring for children with mild to moderate ID presented in subsequent chapters. The discussion in this chapter focuses on individual transitions, the building blocks of health trajectories. The Meleis health transition model (Meleis, 2010), a well-known nursing transition model, was selected as a framework for presenting available, yet limited, information about parental transitions. A brief description of an alternative framework of resilience is presented at the end. In studying the lives of parents of children with ID, it is important to remember the experience of raising such a child is unique for each parent, but some commonalities and patterns may exist. For example, one transition may be difficult for one person and have little or no effect on another. The Meleis health transition model (Meleis, 2010) contains three parts-Nature of Transitions, Transition Conditions: Facilitators and Inhibitors, and Patterns of Response-leading to the development of nursing therapeutics/interventions (Figure 2.1). The chapter is divided into these three sections to explain each and provide information 19 Figure 2.1. The Meleis Health Transition Model Note. From Transitions theory: Middle-range and situation-specific theories in nursing research and practice, by A. I. Meleis, 2010, p. 56. Copyright 2010 by Springer Publishing Company. Reprinted with permission. about parents caring for sons and daughters with ID. Nature of Transitions The first part of the Meleis health transition model (Meleis, 2010), Nature of Transitions, appears to be the most developed, and is divided into Types, Patterns, and Properties of transitions. A review of literature focused on parents of children with ID yielded many examples of types of parental transitions, but little information about the patterns and properties of these transitions. As shown by Figure 2.1, Meleis (2010) suggests there are four basic types of transitions people experience during their lives-Developmental, Situational, Health/Illness, and Organizational. The first three transition 20 types are covered in this section followed by a brief explanation and examples of transition patterns and properties. Meleis used organizational transitions to represent "changes in environments that pertained to nurses" (p. 4), so they are not applicable to these parents. Developmental Transitions Developmental transitions are the first type of transitions listed in the Meleis health transition model (Meleis, 2010). She describes the following examples of transitions that may make people vulnerable: "pregnancy, childbirth, parenthood, adolescence, menopause, aging, and death" (p. 52). Parents in this study who are over the age of 55 and raising young adults with ID are most likely not directly concerned with pregnancy, childbirth, and adolescence. However, they almost assuredly grapple with the other four areas-parenthood, menopause, aging, and death. Literature related to these four areas related to the study population was limited. Most studies focused on stressors involved in continually providing care for a dependent child with ID. The remainder of this section focuses on the stressors of parents raising children with ID. It begins with a definition of stress and presents studies revealing higher levels of stress existing among parents of children with ID as compared to parents of children without ID. The section conclusion highlights several potential stressors these parents may encounter throughout their lives. 21 Higher Stress among Parents of Children with ID Although much debate exists over the definition of stress, the phenomenon and its effects are becoming clearer (Miodrag & Hodapp, 2010). For the purposes of this study, stress is defined as "a physiological response of the body to a perceived threat, either real or imagined" (Miodrag & Hodapp, 2010, p. 407) . This definition is based on the work of Hans Selye (1965), who is known internationally for his contributions to the definition of the concept of stress. Selye explained that stressors, either pleasant or unpleasant, speed up the intensity of life and can increase "the wear and tear exerted upon the body" (p. 97). Thus, increased quantity and intensity of stressors wear out the body over time. According to the Mayo Clinic Staff (2013), life today is perceived as a series of nonstop threats activating the stress response on a continual basis. When acute stressors accumulate, they develop into a condition of chronic stress. A handful of studies confirm higher stress levels among parents of young children with ID versus parents of similar children without disabilities (Dyson, 1996; Gallagher, Phillips, Drayson, & Carroll, 2009; Pelchat et al., 1999); however, most sample sizes are small. More recently, studies have examined stress among parents of young children with Autism Spectrum Disorder (ASD) compared to children without ASD. Research discussing stress levels of parents of older children with ID is limited. These studies are described in the section about health and illness. An example of a study comparing stress levels among parents of children with a disability compared to parents of children with no apparent disability was performed by Pelchat et al. (1999). The authors compared 144 fathers and mothers of 72 6-month-old infants, and found significantly higher scores for parental stress, stress appraisal, and 22 psychological distress among the parents of infants with a disability. Among these parents, mothers experienced more stress related to role restriction, felt more threatened and stressed by their parental role, and reported a greater level of psychological distress than fathers. Another researcher, Dyson (1996), studied stress levels of parents of children between the ages of 7 to 14. She found a significant group difference between 19 parents of children with learning disabilities and 55 parents of children without learning disabilities. In fact, the mean parental stress level for parents of children with learning disabilities was 2 ½ times higher than the comparison group. Gallagher, Phillips, Drayson, and Carroll (2009) compared 30 parents of children/adolescents from the ages of 3-19 with developmental disabilities and 29 parents of youth the same age without disabilities. These researchers focused on parents' antibody response to vaccination in order to determine stress levels and ability to fight viral and bacterial infections. Participants were also scored on standard measures of depression, perceived stress, social support, caregiver burden, and child problem behaviors. The antibody response of parents raising youth with disabilities was significantly diminished in relation to the comparison group, meaning they were experiencing higher levels of stress affecting their immune response. Stress also affects parental sleep. For example, Gallagher, Phillips, and Carroll (2010) studied the sleep patterns of 67 parents of children between the ages of 3 to 19 years with developmental disabilities and 42 parents of youth the same age without disabilities. They found parents of youth with developmental disabilities reported and met criteria for poor sleep quality. They were also more likely to be poorer sleepers, and 23 reported more parental stress, more child problem behavior, and less social support compared to the comparison group. Stressors among Parents of Children with ID In Chapter 1, I described the increasing responsibilities and expectations placed upon parents as a result of the changing trends in demographics and care of people with ID, who are living longer than ever before, and requiring parents to assume more of their care. The increase workload and stress negatively effects parents' health and well-being. The next section discusses additional parental stressors, including behavioral problems of children with ID, transitioning to adulthood, unmet expectations, stigma and stereotypes, finances, time, and traveling with/without a child with ID. Behavioral Problems of Children with ID Behavioral problems exhibited by children with ID can be extremely difficult for parents. In fact, Gallagher et al. (2009) found child behavioral problems appeared to be one of the main contributing factors to a diminished antibody response among parents of people with disabilities. Behavioral problems have also been linked to increased psychological distress (Pinquart & Sorensen, 2003), increased incidence of infectious illness (Dyck, Short, & Vitaliano, 1999), and the onset of cardiovascular disease (Mausbach, Patterson, Rabinowitz, Grant, & Schulz, 2007). 24 Transitioning to Adulthood Another concern for these parents is that the children are now living longer and thus facing issues of adolescence and adulthood. These developmental stages are transformative and can be difficult for both parents and children regardless of intellectual capacity. In fact, Schneider, Wedgewood, Llewellyn, and McConnell (2006) claimed disability tends to compound major developmental challenges already faced by typically developing adolescents. They wrote "depending on their level of impairment, adolescents will differ in their ability to achieve many of the cognitive, communicative, social and behavioral milestones of their typically developing peers" (p. 927). This period is a time when people with ID "become more aware of their differences, develop feelings of inadequacy or become frustrated when they are unable to keep up with peers. This can be exacerbated by being stigmatized, teased or rejected by peers" (Schneider et al., 2006, p. 927). Physically, adolescents with ID continue to grow in size, thus creating a larger gap between their "physical size and intellectual capacity.…Becoming adult-sized may result in increased daily care needs for their families as they become more difficult to physically assist or lift, or harder to control and discipline" (Schneider et al., 2006, p. 927). Another challenge for parents and young adults during this time period in the state of Utah is the loss of eligibility for state-funded education when young adults with ID turn 22 years old. The young people lose the relative structure and safety of a school environment, and parents resume full responsibility of their care. Some families are able to secure a form of adult services; however, even when services are available and funded through state programs, parents must either continue to advocate for and oversee their 25 young adult's day-to-day activities, safety, and health or delegate that responsibility to a guardian or care agency. Consequently, parents who maintain custody and/or guardianship of their son or daughter struggle with the developmental task of facilitating independence for the young adult with ID, as well as assuring the young adult's health and safety during these transitional years (Bianco, Garrison-Wade, Tobin, & Lehmann, 2009). Some young adults with ID get married and have children. When they give birth, the new parents often require additional support, most of which comes from their own parents (Weiber, Berglund, Tengland, & Eklund, 2011). Becoming a grandparent to a child born to a son or daughter with ID may be an additional responsibility resulting in further stress. Unmet Expectations People with ID do not generally meet the same developmental milestones or have the same accomplishments as those without ID. Parents exhibit many emotions initially and experience a feeling of loss extending across the lifespan (Patrick-Ott, 2011). They not only feel "sadness and sorrow, but also fear, helplessness, anger, frustration, and other feelings characteristic of grief" (Eakes, Burke, & Hainsworth, 1998, p. 179). Larson (1998) described a paradox of emotions and feelings experienced by mothers of children with disabilities. She suggested mothers felt tensions between "loving the child for who he or she was and wanting to erase the disability," dealing with incurability while seeking solutions, and "maintaining hopefulness for the child's future while being given negative information and battling their own fears" (p. 865). These are tensions between the parent's initial expectations and the reality of the situation. 26 When these negative feelings reappear over time, they are known as chronic sorrow, a concept introduced in the early 1960s. Such feelings are initially very intense and often decrease as time goes by; however, each time a developmental milestone is not attained or a parent sees a child without a disability achieve a milestone, feelings of loss may return to varying degrees (Eakes et al., 1998). Stigma and Stereotypes Today, stigma surrounding people with disabilities can result in parents experiencing guilt, shame, and rejection. Traditionally, mothers are assigned responsibility for the outcomes-both good and bad-of their sons and daughters, and thus may often feel responsible or at fault for their child's disability or illness (McKeever & Miller, 2004; Risdal & Singer, 2004). For example, McKeever and Miller (2004) reviewed three qualitative studies in which the participants were 66 mothers of children with chronic illness or disability. They found mothers felt pressure to "conform to traditional ideologies of care" (p. 1184) in which they selflessly devoted themselves to caring for their children, and felt an expectation to modify or forfeit employment to provide care for their children. Based on these findings, McKeever and Miller claimed society expects mothers of children with disabilities to invest everything in providing care for their children; however, these efforts are devalued because their children remain "socially unproductive and burdensome to society" (p. 1182). Not meeting the standards of society may leave parents feeling guilty and lead to increased levels of stress. 27 Finances Another stressor for parents is the added financial cost of raising a son or daughter with ID. Providing medical care, therapy, and ensuring needs are met is expensive. For example, in 2003, the average lifetime cost for one person with ID was estimated to be $1,014,000 greater than the cost of living for a person without a disability. In 2012, the annual lifetime cost of an individual with ASD was estimated to be $2.3 million, whereas caring for people without disabilities cost about $1.4 million per year (New research finds annual cost of autism has more than tripled to $126 billion in the U.S. and reached £34 billion in the U.K., 2012). The estimated "lifetime costs for all people with intellectual disabilities who were born in 2000 would total $51.2 billion" (Centers for Disease Control and Prevention, 2005). In addition to the high cost of raising a son or daughter with ID, caregivers often have a decreased financial earning potential because they must sometimes quit their jobs or seek part-time employment (Gordon, Rosenman, & Cuskelly, 2007; Gould, 2004; Johnson & Sasso, 2006; McKeever, 1999). Promotions and other career advancing opportunities are often sacrificed as well (Abel, 1995b; Gordon et al., 2007; McKeever, 1999). Parish, Rose, and Swaine (2010) described the precarious financial situation among 753 households containing a child over the age of 5 with a developmental disability. By examining 2001 to 2004 panels of the Survey of Income and Program Participation (SIPP), which is administered by the U.S. Census Bureau and includes a nationally representative sample of uninstitutionalized civilians living in the U.S. They found elevated poverty levels across the lifespan of parents of sons and daughters' with developmental disabilities. Poverty levels decreased somewhat during the parents' 28 midlife when income levels were higher, but increased again in their later years. Additionally, parents had few financial reserves in case of crisis. In order to help ease the financial burden on people with disabilities, the U.S. government established various means-tested programs for eligible Americans with disabilities, including Supplemental Security Income (SSI), Medicaid, and food stamps. These safety nets are helpful, but often insufficient to cover all needs, thus resulting in continual financial strain on families. These programs may or may not benefit families caring for children with ID, since qualification is not determined by family but by individual applicant. Some programs are means-tested, while others depend on the severity of the condition. All have an application process, wait time, and are subject to bureaucracy and complex rules of eligibility. The complex application process and rigorous rules for documentation, recertification, and ongoing compliance may result in fewer people receiving needed benefits. In most cases, responsibility for obtaining these benefits rests upon parental caregivers. Time Burden Providing care for a son or daughter with ID requires time. Haverman, Berkum, Reijnders, and Heller (1997) found the fewer the adaptive skills of a child with ID, and the more behavioral and physical health problems the child has, the more time demands are placed on parents. These time demands may limit what parents are able to do. For example, mothers may have less time available to be employed outside of the home, significantly decreasing earning potential (Gould, 2004). In addition, time influences caregiver burden or overall stress (McManus et al., 2011). 29 Traveling with and without Child with ID Going anywhere with or without a person with a disability, especially in their younger years, can be taxing. The challenge increases if there are additional medical needs or behavioral concerns. The thought of moving medical equipment and supplies or finding someone competent and willing to care for the person while parents are not home can be daunting. In addition, while parents are out with their son or daughter, behavioral issues can be disruptive. In fact, Yantzi et al. (2007) found these factors may lead parents to isolate themselves because staying home may simply be easier. These caregiving responsibilities extend throughout the lifespan of parents, requiring them to continually balance their own physical, social, and emotional needs while supporting their children (Thorin, Yovanoff, & Irvin, 1996). It is no wonder that with all of these added stressors parents of children with ID had significantly worse physical and mental health than the general population (Seltzer et al., 2011). Situational Transitions Situational transitions, the second type of transition, are "triggered by events that require spatial or geographic changes… and/or relationship changes" (Meleis, 2010, p. 85), such as discharge from hospitals, relocation to rehabilitation or elder care homes, immigration, homelessness, addition or loss of a family member through birth or death, changing professional roles, widowhood, and family caregiving. These transitions are specific to individuals and vary tremendously in scope and magnitude from person to person. Many examples of situational transitions may pertain to parents in this study. For example, a parent could lose his or her job, get divorced, move, or add an additional 30 family member. I was unable to locate any studies exploring situational transitions in the lives of parents of children with ID. Most articles were specific to children or young adults with ID and occasionally included information about the impact of the transition on parents. The most common transitions discussed were related to preparing people with ID to transition within and out of the school system (Bull, 2008; Kraemer & Blacher, 2001; Wehman, Kregel, & Barcus, 1985). Health and Illness Transitions Research on health and illness among parents of children with ID discusses the effects of increased stressors in parents' lives, including the negative effects excessive stress has on various body systems, including the brain (Lupien, McEwen, Gunnar, & Heim, 2009), heart (Low, Salomon, & Matthews, 2009), and immune system (Gallagher et al., 2009). In addition, the Mayo Clinic (2013) suggests increased stress impacts the body, mood, and behavior, resulting in headaches, chest pain, fatigue, anxiety, restlessness, overeating, and social withdrawal in people who experience high levels of stress. The higher levels of stress associated with raising offspring with ID could explain why these parents' physical and mental health is poorer than parents who raise offspring without ID (Mayo Clinic Staff, 2013). For example, Ha, Hong, Seltzer, and Greenberg (2008) examined data from the MIDUS (Midlife in the United States) study, a nationally representative probability sample of English-speaking, uninstitutionalized adults between the ages of 25 and 74. They compared data from a sample of 162 parents of children with 31 developmental disabilities and 133 parents of children with mental health disabilities to a comparison group of 1,393 parents of typically developing children. Parents of children with disabilities had higher levels of negative affect and a greater number of somatic symptoms than the comparison group. In addition, parents of children with developmental disabilities showed poorer psychological well-being than either group. They also found the effects of raising a young person with a disability on parents' well-being attenuated with parental age. Raising a greater number of children with developmental disabilities was also associated with significantly higher levels of negative affect and marginally greater somatic symptoms. The study found no significant gender differences in health between parents raising a child with disabilities and the comparison group. On the positive side, parents of children with developmental disabilities who were older when their children were diagnosed and/or whose children had a longer duration of disability had lower levels of negative affect and better psychological well-being than the younger parents of children with developmental disabilities. Seltzer, Floyd, Song, Greenber, and Hong (2011) compared "parental patterns of attainment, social participation, psychological functioning, and health in midlife and early old age" (p. 479) in 220 parents of adult children with intellectual and developmental disabilities and 1,042 parents of adult children without disabilities. The group comprised of parents of adult children with disabilities was further divided into those who co-resided with their adult child and those whose adult child lived elsewhere. Similar findings across variables in these three groups were reported at midlife; however, as parents reached early old age (mid-60s), parents of adult children with disabilities tended to experience poorer physical and mental health. Differences also were found at 32 this time between the two groups of parents of people with disabilities. Parents whose offspring co-resided with them tended to still be married to their first spouse and have poorer health than the other two groups; people with Down syndrome were more commonly found residing at home. Parents with adult children who lived outside the home tended to be divorced, and their health was more similar to the comparison group, though the adult child's diagnosis varied. All results mentioned were significant except for diagnosis type, which was not examined. Risdal and Singer (2004) performed a meta-analysis of six studies to evaluate the impact of children with developmental disabilities on marriage. The overall weighted effect size for marital adjustment between parents of children with developmental disabilities and parents of typically developing children was negligible (d=.21). Although the difference between groups was small, a positive effect size indicated the presence of a disability was positively correlated to marital strain. The six studies analyzed showed an average increase of 5.97% in divorce rates among couples raising children with developmental disabilities. In discussing parental health and stress, it is important to remember variability exists over time and among parents of offspring with ID. Some parents are able to adapt better than others. In fact, Ha, Hong, Seltzer, and Greenberg (2008) noted little is known about factors affecting specific parents who have poor health or parents who demonstrate greater resiliency. However, they found type of disability, family resources, "perceptions and beliefs regarding the disability, and the social context of the family" (Ha et al., 2008; Pelchat et al., 1999, p. 378) influenced parents' ability to adapt. Although differences exist among parents, some patterns may be present. 33 Patterns and Properties of Transitions Patterns of transitions include the timing and relationship among transitions. Specifically, transitions can occur one at a time, in multiples, sequentially, and/or simultaneously. Some transitions are related to each other, while others are not (Meleis, 2010). For example, a parent may be diagnosed with diabetes and learn about the death of a sister in the same week, or a parent may become employed after staying home for a long period of time and find that his or her child's behavior problems escalate. Therefore, mapping patterns of transitions by looking at health trajectory graphs may help determine when interventions would be most appropriate and necessary. Transitions are also made up of several interrelated and essential properties (Meleis, 2010), including levels of awareness, engagement, change and difference, time span, and critical points and events. Levels of awareness may vary and influence levels of engagement in the transition process, and is depicted as "perception, knowledge, and recognition of a transition experience" (p. 57). If a person is not aware of a transition occurring, he or she will likely not make any changes. Awareness makes a person more apt to be actively involved or engaged in the transition. The next property is engagement, activities people actively participate in as a result of a transition in their lives. Some examples of engagement may include the following for parents raising children with ID: learning about Down syndrome, talking to other mothers of a child with Down syndrome, and preparing for a child's graduation from high school. The final concepts, change and difference, are arguably somewhat vague and few examples were found in the literature. Meleis (2010) said the terms are similar, but not 34 interchangeable or synonymous with transition. She differentiated between a change and a transition by saying, "all transitions involve change, whereas not all change is related to transition" (p. 57). A change may occur, but a person may judge it as insignificant or may not be willing or ready to adjust to it. In this case, no transition occurs and the person continues as before. Meleis further explained, "a change may be related to critical or disequilibrating events, to disruptions in relationships and routines, or to ideas, perceptions, and identities" (p. 58). Some examples of changes leading to a transition include receiving a diagnosis of ID in a young person, starting school, losing a job, or the passing of a loved one. If a change results in a transition, the person "adapt[s] to new roles and situations, come[s] to terms with the [change], and eventually result[s] in new meanings and a sense of mastery over an extended period of time when… the ‘whole picture'" (p. 57) is understood. Thus, "transitions are both the result of change and result in change" (p. 58). A difference is "exemplified by unmet or divergent expectations, feeling different, being perceived as different, or seeing the world and others in different ways" (Meleis, 2010, p. 58). An example could be a person diagnosed with cancer and undergoing treatments. The person may feel different than peers because of the diagnosis. The chemotherapy treatments could result in hair loss and fatigue, thus subsequently resulting in differences of appearance and expectations. If these differences affect the person, a transition will occur. Another property of transitions explained by Meleis (2010) is that transitions occur over time. Establishing beginning and end points may be difficult, because some transitions can be dormant for a time and resurface later. The parents of the son or 35 daughter with ASD may think they have adapted to the change of raising person with ASD, but may then go to a high school graduation of another young person and still feel sad about the diagnosis and unmet expectations, demonstrating they still have work to do in adapting to the ASD diagnosis. The final property of transitions is critical points and events. According to Meleis (2010), critical points and events occur when awareness of change or difference heightens or engagement in the transition experience increases. Critical points related to raising a person with ID would most likely be diagnosis, early interventions, school years, and transitioning into the community (Abrams & Goodman, 1998; Bianco et al., 2009; Bull, 2008; Calhoun, Calhoun, & Rose, 1989). However, critical points over the lifespan of parents have not been identified. Transition Conditions: Facilitators and Inhibitors This section describes the middle part of the Meleis health transition model (Meleis, 2010): conditions, defined as personal, community, and societal factors facilitating and inhibiting transitions. Community and societal factors are discussed together and include a brief historical overview of disability and ID in order to provide insight into the cultural beliefs and attitudes prevalent today. Little information supporting concepts in this and the final part of the model was discussed in the literature. Personal Factors The first transition condition, personal factors, includes meanings, cultural beliefs and attitudes, preparation and knowledge, and socioeconomic status. First, the meaning 36 assigned to a particular event may facilitate or hinder healthy transitions (Meleis, 2010). For example, parents may associate parenting with happiness or drudgery. This association or meaning may change from minute to minute, day to day, or year to year. Different parents can vary in their meanings of parenting, and each unique meaning creates a different transition experience. Some meanings facilitate a healthy transition, while others inhibit the transition. Meleis (2010) also suggests that culture influences beliefs and attitudes, and attaches stigma to different events by acting as a facilitator or an inhibitor to an emotional response. For example, parents of offspring with ID may often believe they are the cause of the disability (McKeever & Miller, 2004). This belief may result in grief or depression, and hinder a healthy transition. Conversely, a belief about the importance of self-care may facilitate a healthy transition. Meleis (2010) claimed low socioeconomic status often negatively affects healthy transitions. She suggests low socioeconomic status increased the likelihood of negative psychological symptoms. According to Emerson (2003), who studied economic status and psychological impact among 245 mothers of children with ID and 9, 841 mothers of children without ID, families raising children with ID were more often economically disadvantaged than their counterpart. Additional factors facilitating a transition are being prepared and having knowledge (Meleis, 2010). For example, a parent could prepare his or her youth for graduation from the public school system by discussing and visiting different vocational and volunteer sites. This knowledge and preparation will help the transition to be smoother and less difficult (Bull, 2008). 37 The notion of being prepared could also include a person's coping skills. These skills can be taught prior to the transition, and provide parents with tools and resources to use throughout the transition process. Several studies discovered relationships between personality types, coping skills, and well-being (Kim, Greenberg, Seltzer, & Krauss, 2003; Seltzer, Greenberg, Floyd, & Hong, 2004). For example, Glidden, Billings, and Jobe (2006) studied parents of children with developmental disabilities and found some coping strategies were related to higher levels of subjective well-being. Thus, teaching parents effective coping strategies may help them achieve successful transitions. Community and Society Factors The community in which a person resides can inhibit or facilitate transitions (Meleis, 2010). Specifically, Wodehouse (2009) studied the helpfulness of community services for parents of people with developmental disabilities and behavior problems, and discovered parents had the following complaints about community services: information was difficult to obtain and commonly haphazard, providers lacked understanding of their situations and blamed them for their children's behaviors, respite was limited and often not a true break, and obtaining helpful specialty services for behavior problems was difficult. The author concluded that many excellent resources could be found in communities, but for various reasons, they were not helpful or accessible to parents. In other words, the authors believed community resources should have been facilitators, but instead were inhibitors, and recommended forming partnerships between parents and care providers to make resources more helpful. Along with community factors, societal beliefs can also inhibit or facilitate 38 transitions (Meleis, 2010). These beliefs are formed over time, so a brief history of disability and ID with regard to society is included. References to disability and ID are found very early in the history of mankind with a variety of rationales. The first reference to ID occurred in the Egyptian Papyrus of Thebes in 1552 B.C. (Harbour & Maulik, 2010). Ancient Greeks and Romans felt children with ID "were born because the Gods had been angered" (p. 1). Similarly, others viewed disability as an "immutable condition caused by supernatural agency" (Longmore, 2003, p. 42). Conversely, others felt people with severe ID were "capable of receiving divine revelation" (Harbour & Maulik, 2010, p. 1). For the most part, however, people generally view disability negatively throughout history and hypothesized about its causes. At times, people with disabilities were deprived of basic human rights and blamed for evils in society due to fear, curiosity, and/or hatred (Longmore, 2003). The Bible states people who were lame, blind, crippled, mute, contagious, or mad were not allowed to participate in temple rituals (Stiker, 1999). Ancient Greek and Roman infants with severe ID were often allowed to die of exposure (Harbour & Maulik, 2010). Attempts to cure people of physical disabilities are listed throughout history, but were rarely successful. For example, Longmore (2003) described some treatments professionals used on the physically disabled to try to "fix" their infirmities. For example, paralyzed limbs were amputated. In addition, medical experiments were performed on deaf students to restore hearing. These experiments included "bleeding, blistering, leeching, fracturing the skull just behind the ear with a hammer, or piercing the eardrum, inserting a probe through the nose in the Eustachian tube and working it back and forth, 39 all inflicting excruciating pain, all with no effect" (p. 46). When efforts to cure people with disabilities were not effective, society began segregating and institutionalizing people with disabilities in order to provide them with efficient care and keep them away from people without disabilities (Harbour & Maulik, 2010). In addition, in the early 1900s, researchers began learning more about genetics and encouraged sterilization of people with disabilities in order to stop them from reproducing (Pham & Lerner, 2001). In fact, by 1944, sterilization laws were adopted in 30 states. Between 1907 and 1944, 42,000 people in the U.S., mostly women, were involuntarily sterilized "in an attempt to eliminate the presumed genetic sources of diseases including feeblemindedness" (Harbour & Maulik, 2010, p. 3) Nazi atrocities, additional genetic research, civil rights movements, and feminism led to disapproval of sterilization in the 1940s (Harbour & Maulik, 2010; Pham & Lerner, 2001), but 22,000 more people were sterilized between 1943 and 1963 (Harbour & Maulik, 2010; Pham & Lerner, 2001). In 1978, guidelines were established forbidding the use of federal funds for sterilizing incompetent or institutionalized people. Today, laws make involuntary sterilization difficult. The 20th century also brought increased rights and services to people with disabilities. Political changes for the disabled community started in 1918 when the first federal vocational rehabilitation legislation was established for disabled veterans. In 1920, the policy was extended to disabled civilians. The U.S. elected their first president with a disability, Franklin D. Roosevelt, in 1933; however, he hid his paralysis and cheerfully created a public image for himself masking any signs of dependency on others (Longmore, 2003). 40 From that time onward, victories for people with disabilities continued to rise. Several organizations were formed and legislation specifically enacted. In 1935, the League of Physically Handicapped was started, and the Social Security Act was enacted. The National Association of Parents and Friends of Mentally Retarded Children was formed in 1950. In 1952, legislation was enacted in 46 of 48 states to educate people with ID. President John F. Kennedy established the President's Panel on Mental Retardation in the early 1960s, and "President Johnson's War on Poverty and establishment of Project Head Start sought to address some of the environmental causes of intellectual disability" (Harbour & Maulik, 2010, p. 5). In 1973, Rehabilitation Act 504 was enacted to protect the disabled from discrimination in federally-funded programs. In 1975, "The Education for All Handicapped Children Act secured a free public education for children with ID" (Harbour & Maulik, 2010, p. 5). The Americans with Disabilities Act was passed in 1990, increasing equal access to school, work, public transportation, and public places for people with disabilities (Longmore, 2003). "In 1994, the United Nations passed the Standard Rules on Equalization of Opportunities for Persons with Disabilities, providing international standards for programs, policies and laws for those with disabilities" (Harbour & Maulik, 2010, p. 5). A history of disability would not be complete without some mention of their tireless caregivers. Most people with disabilities require varying levels of care throughout their life. Looking back on the history of caregiving illuminates some conditions currently surrounding transitions for parents of people with ID. Women have been the primary caregivers for families, friends, and neighbors. When a person was sick or had a 41 disability, a woman (mother, step-mother, grandmother, daughter, or sister) often assumed responsibility for the care. Women throughout time sacrificed sleep, time, health, energy, school, and career opportunities to care for those in need (Abel, 1995a). Today, responsibilities of caregivers constantly change as the number of people needing care and the severity of diseases increase (Scharlach, 2008). At the turn of the century, 22.4 million families were caring for adults, and 4.4 million families were caring for children (Sullivan-Bolyai, Sadler, Knafl, & Gilliss, 2003). In 2009, over 65.7 million adults served as family caregivers to an adult or child in the U.S. (National Alliance for Caregiving et al., 2009). This number continues to climb as the numbers of older people and people with disabilities increase (Administration on Aging & Department of Health and Human Services; Krahn et al., 2006). Even more caregivers are needed because many long-term care facilities have closed. In addition, less care is being provided in hospitals, so family caregivers are required to perform complex caregiving tasks for ill family members. In fact, today, many women and an increasing number of men are giving time and physical and emotional energy to care recipients (Scharlach, 2008). Patterns of Response Patterns of response is the last area of the Meleis health transition model (Meleis, 2010). Meleis said patterns, characterized by certain progress indicators and outcomes, mark the end of a healthy and successful transition leading to improved well-being. 42 Progress Indicators Few details are provided by Meleis (2010) to explain the four progress indicators: feeling connected, interacting, location and being situated, and developing confidence and coping. An example of feeling connected may include a parent feeling a deeper connection with his or her family and friends, or forming a special bond with healthcare professionals following a difficult transition. Being situated could include accepting the place a person resides following the transition, and could be physical or symbolic. Being situated could mean the person is able to comfortably switch back and forth from talking about life before and after the transition (Meleis, 2010). For example, parents may talk about situations and life experiences before and after their child was diagnosed with ID. Developing confidence and coping skills are further indicators a healthy transition is taking place, and may be seen in parents who understand the transition process, increase resource utilization, and develop strategies for managing transitions. A possible concept tying the four progress indicators together for the parents is integrating the child's disability into the parents' lives. Boström, Broberg, and Hwang (2010) defined such integration as the merging of the disability into the background of their life so they were no longer preoccupied with it. These authors used semistructured interviews to elicit narratives from 17 parents about their perceptions and subjective experiences of raising a child with ID. Parents ranged from 24 to 43 years-of-age with a mean age of 32. At the time, the children in the study were between the ages of 5 months and 5 years old. The authors described the range of integration parents displayed while describing their experiences of raising children with ID. The parents ranged from being 43 preoccupied by the diagnosis (thoughts about the diagnosis played a dominant role in everyday life) to accepting and integrating it into their lives (the disability merged with the background). The authors noted struggling with thoughts of the diagnosis and having it be a central element in their everyday lives produced negative emotions. They found most parents provided a balanced description of the diagnosis and were preoccupied with the diagnosis and its consequences; however, some parents had already integrated it into their lives despite the short time period since the diagnosis. The authors also suggested positive parental emotions may have been protective factors promoting parents' ability to cope. Integration did not mean the diagnosis was simply ignored because there were certain factors affecting a person's ability to achieve integration. For example, Boström, et al. (2010) described the range of emotional expressions exhibited by parents regarding their child and his or her ID, and their experiences with the disability. The authors claimed most parents gave balanced and affectionate descriptions of their children characterized by the following four elements. First, the parents described their child positively and with love and affection. Second, they shared positive and negative characteristics of their child with an emphasis on the positive. Third, parents described "well-functioning routines and parent-child interactions" (p. 96), and fourth, they spoke of "the child as an individual person" (p. 96). The concept of integration may provide greater understanding of the positive possibilities in parents' lives. In contrast, a few parents in their study spoke of their child in a distant or hostile manner or idealized them. In other words, their descriptions were overly negative or positive. Lutz and Bowers (2005) also described disability as being integrated into a 44 person's life, but their focus was on people with disabilities themselves instead of the caregivers. They discovered people with disabilities perceived their disability "as a multifaceted, complex experience that is integrated into and, ultimately, becomes part of their lives" (p. 1042). The authors went on to describe three categories of disability-related factors influencing a person's ability to integrate disability into their lives. These were "the fundamental effects of the disabling condition, others' perceptions of disability and its influence, and the need for and use of multiple resources from multiple sources" (p. 1042). Time and experience allowed people to adapt and become comfortable with their disability. They were able to learn more about it, shift expectations, and find new opportunities. The more these factors hindered their ability to live their lives, the more difficult it was to adapt to the disability. Therefore, integration of the disability could be a way parents manifest a reformation of their identity. Another study that does not specifically discuss integration could also be used as a progress indicator. Grant, Nolan, and Keady (2003) mapped the lives of parents with children with ID, and described six caregiving stages. Their first and second stages include preparation for caregiving responsibilities and becoming aware of the disability. Next parents accept the realities of the disability and work through it. Their final stages are reaching the end of the caregiver journey and starting a new beginning. Towards the end, parents often report increased reciprocal relationships between with their children with ID, as well as a "heightened sense of caregiving enrichment" (p. 348). If parents ‘let go' of their children during this stage, there can be a new beginning for parents and their children. However, many parents continue to care about their child and maintain varying degrees of involvement. 45 Outcome Indicators Meleis (2010) identified two outcome indicators resulting from healthy transitions. The first is "mastery of the skills and behaviors needed to manage their new situations or environments" (p. 63). An example could be a parent mastering the skill of communication with their child with ID. The second outcome is a reformation of parental identity that is fluid in nature and changes with taking on the identity of "parent of a child with ID." Little research has been performed regarding identity among parents of children with ID, and there appears to be variability in parents' ability to accept the identity of being a parent of a child with ID. In addition, different events in time may trigger parents to question their identity. Todd and Jones (2005), for example, found some mothers struggled with their own identity during their child's adolescent years. They interviewed 30 mothers (34 to 56 years of age) of adolescent children with ID about their experiences of parenting during the middle years of life. Mothers described their identity as ordinary and maternal in nature during the early years of caring for their children. However, their child's disability had a larger impact on the mother's identity during the child's adolescence as the responsibilities of the disability prolonged their maternal role. One group of mothers strongly treasured their role as mother and wished others could see the same value and respect for motherhood. The second group "feared becoming engulfed by their maternal role and that something of value to them was threatened" (p. 399), and clung to aspirations of the past and questioned if and how those would happen. Another author, Morgan (2010), described how 17 parents (56 to 82 years of age) of offspring with ID identified themselves as special parents, which further allowed them 46 to take on the identity of long-term caregivers. Alternative Framework: Resilience Theory An alternative framework for explaining the transitions of parents raising children with mild to moderate ID is the resilience theory. Waite and Richardson (2004) defined resilience as "the process and experience of being disrupted by change, opportunities, stressors, and adversity and, after some introspection, ultimately accessing gifts and strengths…to grow stronger through the disruption" (p. 178). Resilience is not a static trait (Greeff & Nolting, 2013; Haan, Hawley, & Deal, 2002; Luthar, Cicchetti, & Becker, 2000) or "a quality… that is always present in every situation….Rather, resilience is defined by the context, the population, the risk, the promotive factor, and the outcome" (Fergus & Zimmerman, 2005, p. 404). In this study, resilience was depicted similarly. The Resiliency Model by Richardson and Waite (2002) describes the process of adapting to stressors, adversity, or life events. Figure 2.2 graphically depicts the process. According to the model, individuals begin in a state of homeostasis during which they feel comfortable with their life situation. Then, life events and resilient prompts occur resulting in a disruption or "a risk or adversity that carries a significant threat for the development of a negative outcome" (Windle, 2011, p. 158). Following the disruption, individuals generally reintegrate in one of four ways. First, they reintegrate dysfunctionally by "resort[ing] to substances, destructive behaviors, or other means to deal with the life prompts" (Richardson, 2002, p. 312). Second, they reintegrate with loss by "giv[ing] up some motivation, hope, or drive because of demands from life prompts" (p. 312). Third, they reintegrate back to their 47 Figure 2.2 The Resiliency Model. Note. From "Mental health promotion through resilience and resiliency education," by G. E. Richardson & P. J. Waite, 2002, International Journal of Emergency Mental Health, 4(1), p. 67. Copyright 2002 by Routledge. Reprinted with permission. comfort zone not having changed from the event. Fourth, they reintegrate resiliently, learning from the event and growing as a result of the process. Resilience and reintegrating resiliently are used synonymously in this study. Other literature added to this model provide clarity and understanding. For example, Windle (2011) described a process of "negotiating, adapting to, or managing [the] significant source of stress or trauma" (p. 163), which is another way of describing reintegration. Luthar, Cicchetti, and Becker (2000) described reintegration process as a process of balancing risk and protective factors. Risk factors, as defined by Bekhet et al. (2012), are "factors that predispose people to physical and mental health problems 48 because they affect how a person adapts to stress (p. 651)." One goal of resilience, therefore, is to maintain or promote improved health. Protective factors, also known as compensatory factors or assets, are defined by Bekhet et al. (2012) as "factors that promote resilience by diminishing effects of risk and decreasing the negative reaction to it, thereby allowing [people such as] caregivers to achieve positive outcomes" (p. 651). Examples of protective factors in family members of children with ASD include social support, locus of control, and religious beliefs and spirituality (Bekhet et al., 2012). In studying resilience in families of young children with ID, Gerstein, Crnic, Blacher, and Baker (2009) found "marital quality was a clear compensatory factor" (p. 992) for parents. Resilient reintegration is the ideal culmination of the resilience process. Richardson (2002) described it as "growth, knowledge, self-understanding and increased strength of resilient qualities" (p. 310). Bekhet et al. (2012) described this phase with indicators of resilience-"predictors of resilience" (p. 652)-and outcomes of resilience-"positive health outcomes" (p. 653). The resilience indicators found in their literature review discussing family members of children with ASD included self-efficacy, acceptance, sense of coherence, optimism, positive family functioning, and enrichment. Positive health outcomes included less depression, better marital quality, greater psychological well-being, and greater life satisfaction. Chapter Summary This chapter presented the well-known Meleis health transition model (Meleis, 2010) and concluded with a brief summary about resilience theory. Information about the 49 transitions parents of children with ID experience was incorporated throughout. A fair amount of literature (Risdal & Singer, 2004; Schneider et al., 2006; Seltzer et al., 2011; Yantzi et al., 2007) is available to describe the different types of transitions parents of children with ID potentially could experience. However, little information about the other parts of the Meleis health transition model (Meleis, 2010) was found, thus affirming the need for more research. Lacking a scientific basis to differentiate transitions for parents caring for children with ID, healthcare professionals are unable to understand parents' experiences or respond with precision to different kinds or magnitudes of transitions in a systematic, evidence-based way. This study will provide researchers and healthcare providers with information that may be helpful in beginning to create and test interventions to better support parents through transitions encountered over a lifetime. Theories about transitions and health trajectories can be developed and refined. Policies can then be created to give parents more support as they care for their sons and daughters and are called on to assist in eliminating health disparities among this population. CHAPTER 3 METHOD The purpose of this study was to explore how parents narrate the transition of raising a child with mild to moderate ID, and how that person influences parents' overall health trajectories. The methods of the study are reviewed in this chapter, beginning with the research design. Discussion of the research design includes information about participants, demographics, and the methods of narrative and life history data collection. The study protocol then outlines steps undertaken in the study and describes individual interviews. A description of data analysis follows, including narrative analysis and a step-by-step guide used in analysis. The chapter concludes with potential risks and benefits to participants and issues of study trustworthiness. Research Design and Method A qualitative method was selected for this study in order to explore in depth an underdeveloped phenomenon-transitions and health trajectories of parents raising children with mild to moderate ID-from their own perspective. Because parents of children with mild to moderate ID know the most about their own lives, transitions, and health, I wanted to explore their experiences in an open manner, thus allowing them freedom of expression in discussing aspects of their lives and experiences they felt were 51 most important. The qualitative data collection of narrative in the form of life history allowed participants to share life experiences in their own words with little guidance. Through a series of three in-depth, semistructured interviews, parents shared their life stories. The first interview dealt with the experience of raising a child with ID from the beginning. Guiding questions were used to elicit additional memories from different time periods (e.g., elementary school or junior high school). The second interview consisted of a series of follow-up questions regarding experiences shared in the first interview; some questions were derived from the Meleis health transition model a priori (Meleis, 2010). In the third interview, parents explained their lives using the lifeline drawings they created as a visual guide. Questions similar to those asked in the second interview were used. See Appendices A and B for interview questions asked. This section describes the research participants and provides greater detail about the data collection methods and study protocol. Research Participants A sample of up to 20 research subjects was approved by the Institutional Review Board (IRB) at the University of Utah, although only 18 were needed to constitute a complete dataset. Purposeful and snowball sampling were employed to select 18 parents (6 fathers and 12 mothers) who met five inclusion criteria. See Table 3.1 for a list of inclusion criteria. Following the table is a description of the inclusion criteria and demographic information. The goal of the sample size was to allow for a rich, full exploration of the topic with a diverse sample (Coyne, 1997). This sample size provided enough information to describe parental health trajectories and transitions in depth, but 52 Table 3.1 Inclusion Criteria # Inclusion Criteria 1 ≥55 years-of-age 2 Adoptive or birth parent of a child with a mild to moderate ID 3 Parent reports primary responsibility for the care and well-being of his or her child with ID for the majority of the child's life 4 Speaks English 5 Able to draw and explain a lifeline drawing did not produce so much information that analysis glossed over details (Sandelowski, 1995). There was no subject attrition. First, parents aged 55 and above were selected. According to Seltzer, Floyd, Song, Greenberg, and Hong (2011), the health of parents of children with ID remains similar to parents of typically developing children until about the age of 60. At and following this age, several negative effects, including an increased amount of depression, greater obesity and functional impairments, poorer health-related quality of life, and less frequent visits with friends and family are noted. The second criterion was the parental relationship. Originally, I required either the participant or his or her spouse/partner to be the birth parent. Participants could be married or partnered. Adoptive parents were to be excluded from participation as I had imagined their experiences to be different and suitable for a separate study. This criterion was explained to each participant prior to enrollment in the study; however, upon beginning one interview, the mother informed me she adopted her son shortly after birth from an agency, and knew the child had Down syndrome prior to adoption. Despite the variation from the inclusion criteria, I continued with the interview to test my assumption that her experience could be different than birth parents. I did not believe the interview 53 would put her at risk. This participant did not receive additional support or resources, and never mentioned contacting the birth mother. In these regards, her experience seemed similar to other participants'. Following her interview, a deviation report and an amendment to the original proposal allowing adoptive parents to participate was sent to and approved by the IRB. As part of the second criterion, the children of the parents participating in the study were required to have a mild to moderate form of ID as reported by the parents. No testing for ID was done; instead I relied on parents to tell me whether their child was officially diagnosed with ID, had "below-average intelligence," or "attended special education classes" (p. 482). These criteria were designed to be similar to those used in a study about health differences among parents raising children with ID by Seltzer et al. (2011). Participants were raising children with ASD, Down syndrome, or brain damage. Asperger's disorder falls along the ASD continuum; however, I chose to keep this diagnosis separate as participant parents referred to their daughter as having Asperger's disorder, and their experience was distinctly different from other parents. These parents, as well as all other parents, told me their child had below-average intelligence and attended special education classes. Third, parents were required to self-report being primarily responsible for the care and well-being of their child with ID for the majority of the child's life. One indicator of this primary caregiving relationship was that the child resided with the parent for the majority of his or her life and spent minimal time in a long-term care facility and/or group home. According to Seltzer el al. (2011), the parents of children with ID who co-54 reside with them tend to experience more physical and mental health problems than parents of children with ID whose children live elsewhere or do not co-reside with them. Lastly, participants were required to speak English and have the ability to draw and explain a lifeline diagram. Demographics Participants included 18 birth or adoptive parents ages 55 and over caring for children with mild to moderate ID. See Table 3.2 for more details. Prior to the study, I knew 11 of the 18 participants; 5 participated in We Can Too! and the others were acquaintances. All participants were currently married; however, 4 had been previously divorced and this was a second or third marriage. Only half the husbands were interviewed, so there were 12 mothers and 6 fathers. See the section titled Study Protocol for more details about sample selection. All parents reported raising 1 child with a mild to moderate ID except for 1 mother who was raising 2; the older child had Down syndrome and the younger ASD. Parents were raising 13 children with ID. Functional level of the children was not measured. As described by parents, 2 sons, 1 with ASD and the other with Down syndrome, seemed to be more severely affected, both physically and in terms of communication limitations, than the 11 other children. The daughter with Asperger's disorder seemed to function at a higher level than the other children, as she graduated from college, was married and divorced, and had four children. All participants' children with ID were currently living with their parents, except a deceased son who lived with parents until his death. One son with Down syndrome 55 Table 3.2. Characteristics of Participants Child Parent Gender/age Diagnosis Mother/Father Age Education Employment 1. Female/ 54 Brain damage Mother: Anita Father deceased 79 High school Homemaker 2. Male/ 28 Down syndrome Mother: Betty Father: Bernard 69 69 College degree Graduate degree Homemaker 31-40 hours/wk 3. Male/ 25 ASD Mother: Catherine 59 College degree 31-40 hours/wk Father: Clifford 60 Partial college Retired 4. Male/ 38 Down syndrome Mother: Dorothy Father declined 60 Partial college 21-30 hours/wk 5. Male/ 27 Down syndrome Mother: Evelyn Father: Eddie 64 63 Partial college Graduate degree Retired 41-50 hours/wk 6. Male/ 29 Down syndrome *Mother: Gail Father not interviewed 72 Graduate degree Retired 7. Male/ 22 Down syndrome Mother: Helen Father not interviewed 57 Partial college Homemaker 8. Male/ 16 ASD Same as child #7 Same as child #7 9. Male/ 20 ASD *Grandmother: Jean 66 College degree 31-40 hours/wk Grandfather deceased 10. Male/ 34 Down syndrome Mother: Kathleen Father: Kenneth 75 78 Graduate degree Graduate degree Retired Retired 11. Male/ 30 Down syndrome Mother: Linda Father not interviewed 59 Partial college Retired 12. Male/ deceased Brain damage Mother: Martha Father: Martin 64 58 College degree Partial college 41-50 hours/wk 41-50 hours/wk 13. Female/ 43 Asperger's disorder Mother: Nancy Father: Norman 66 71 Graduate degree Graduate degree 1-5 hours/wk Retired All names are pseudonyms *Indicated child adopted. 56 lived in a basement apartment in his parents' home. The daughter with Asperger's disorder lived away from parents for approximately 10 years while attending college and living with her spouse. Her parents visited her regularly while she was in college to help her with homework. She moved in with her parents for about a year while she was married, and was ordered by the court to again live with her parents following her divorce. She currently has custody of her daughter and relies heavily on her parents for assistance. Two parents were adoptive parents. The first adopted her son from an agency at birth knowing beforehand that he had Down syndrome. The second adopted her grandson with ASD when he was about 10 years old. She claimed to have taken the most active caregiving role in his life, and prior to adoption, watched him during the day most of the week. One participant spoke English as a second language; however, she was English proficient. I believe all participants were capable of creating lifeline drawings on the provided butcher paper; however, 4 were not prepared at the third interview with their lifelines. Therefore, I created lifeline drawings in a word processing document with them during the interview so we would have material to discuss. Data Collection Methods Data were collected from three different sources: digital recordings and transcripts of narrative interviews with an emphasis on life histories, lifeline drawings created by participants, and a study journal. The study journal is comprised of my meticulous notes type written during the interviews as well as other notes recorded with regard to the 57 study. The lifeline drawings were photographed and later returned to participants. Narrative Polkinghorne (1995) defined narrative as "any prosaic discourse… [or] text that consists of complete sentences linked into a coherent and integrated statement" (p. 6). It "draws together diverse events, happenings, and actions of human lives into thematically unified goal-directed processes" (p. 5). Riessman (1993) pointed out that some researchers define narrative broadly to the point of including almost anything, whereas other scholars use much more restrictive criteria. Narrative can be found everywhere; some examples include autobiographies, diaries, health records, paintings, comics, news items, and fables (Riessman, 2008). Clandinin and Connelly (2000) wrote, "life is filled with narrative fragments, enacted in storied moments of time and space, and reflected upon and understood in terms of narrative unities and discontinuities" (p. 17). Elliott (2009) described three key features of narratives. First, narratives are chronological. They organize and connect events to form a whole. The events within a narrative highlight individual lives within a social context. Polkinghorne (1995) also added that narratives are not temporally linear, but told with a coherence unified by a plot or theme. The segment of time discussed in a narrative can range from being boundless to short episodes lasting under an hour, and is presumed to move from the past to the present in a unilinear direction. Riessman (2008) suggested narratives are stories containing a beginning, middle, and end with a plot and characters. This chronological ordering of events and narrative structure may be a part of the analysis process. Second, narratives are meaningful. Elliott (2009) suggested narratives convey the 58 meaning of events, behaviors, and experiences from the teller's point of view, thus creating greater understanding of the participant. They also provide a place for a teller to share his or her feelings and point out significant events. Narratives offer "insight about the world and/or people's experiences of it" (p. 3). Of course, meaning can change over time as people have experiences and develop new ideas. Crotty (2003) pointed out that people act differently according to the meaning they assign to certain phenomena and adapt and modify that meaning to meet their needs. In fact, creating meaning may occur for participants as they present the narrative. Third, narratives are inherently social. They are produced for specific audiences and told differently to diverse audiences. I acknowledge participants tailored their stories to me-a White, middle class, pregnant female student. Some initially participated, I believe, to help a student in need. All tried hard to understand my questions and share information they thought would be helpful. During interviews, participants may have been leery to be overly negative about their experiences because I was pregnant. One mother acknowledged she tamed her language because she knew my religious background. Also, the manner in which I asked questions and listened shaped both the manner and matter of their narratives. For example, letting parents know I was interested in what they said encouraged them to share more information. Riessman (2008) suggested that narratives serve many functions for individuals and groups; they allow people to tell their stories and help make sense of events and experiences occurring in their lives, especially those that are challenging and/or traumatic (Riessman, 1993). People tell themselves and others who they are and who they are not by stories they tell. A major purpose of narrative is to construct identities. The 59 participants in this study may have crafted stories about their experiences raising a child with ID to convince themselves and others they were successful at raising a child with ID. Lieblich et al. (1998) further explained "narratives provide us with access to people's identity and personality" (p. 7). They continued, Stories imitate life and present an inner reality to the outside world; at the same time, however, they shape and construct the narrator's personality and reality. The story is one's identity, a story created, told revised, and retold throughout life. We know or discover ourselves, and reveal ourselves to others, by the stories we tell. (p. 7) Evidence of culture is also seen in stories, as are gender inequalities, racial oppression, and other practices of power. Finally, narratives allow individuals to "remember, argue, justify, persuade, engage, entertain, and even mislead an audience" (p. 8). Thus, narratives, collected through interviews, were helpful in developing a deeper understanding of the lives, transitions, and health of parents through their own perspectives. Life History Mandelbaum (1973) defined life history as "the account of a life, completed or ongoing" (p. 177). As parents shared their life histories through creating and narrating visual lifeline diagrams, we became collaborative partners in exploring, discovering, understanding, and constructing an account of their lives (Haglund, 2004). Through this process, I was able to "examine changes over time" (Haglund, 2004, p. 1309) in the parents. Some changes occurred quickly, while others spanned months, years, and even an entire lifetime. 60 Lifeline Drawings Gramling and Carr (2004) presented the lifeline drawing as a way for participants to share life histories. They claimed lifeline drawings helped guide participant stories and jogged their memory of past events. These investigators provided participants in their study with various art supplies, and asked them "to draw a chronological display of their lives. The display was to consist of a line, horizontal or vertical, filled with events the participants considered significant in their lives from birth to the present" (p. 208). Participants were able to talk with one another as they created their lifeline drawings. For the purposes of my study, I utilized lifeline drawings but modified the method. Participants were asked to create their lifeline drawings individually and on their own time, thereby allowing them additional time to think about and create a more meaningful product. The procedures are outlined in the study protocol section and the initial and revised interview guides in Appendices A and B. Study Protocol Upon approval of the IRB, recruitment flyers were distributed widely via e-mail and hard copy to acquaintances, colleagues, contacts in the disability community, and participants from We Can Too! I attended a meeting hosted by a community-based service agency for parents of children with ID, and left 20+ flyers (Appendix C) with the instructor who said he would distribute them among his clients. I also recruited at Murray Greenhouse, a nonprofit organization teaching independent living and employment skills to people with disabilities. I followed up with people who contacted me with interest in participating in the study within 24-48 hours. The first participants were people I knew. 61 My goal was to interview 20 participants; however, after 18 interviews, I felt confident data were sufficient in scope and depth to sufficiently answer my research questions. While contacting potential participants, I used the recruitment script (Appendix D) to determine eligibility. If the person was eligible and willing to participate, I scheduled a first interview. The consent form (Appendix E) was sent via e-mail when possible to allow participants time to read it prior to the interview. If a person was unsure about participating, I asked whether he or she would like me to e-mail the consent form and follow up at a designated time. If the potential participant was uninterested, he or she was thanked and asked for potential referrals to the study. Four additional parents met inclusion criteria, but did not want to be involved in the study. Participants were interviewed in the order in which they were recruited or according to their availability. Originally, I wanted to finish interviewing one participant before moving to the next in order to keep individual stories together. Quickly, I learned this was unrealistic and interviewed participants when they were available. All individuals who expressed interest in the study were screened for eligibility. Initially, all who met inclusion criteria were enrolled. The purpose of the recruitment strategy was to discover a core shared narrative about the experience of raising children with ID, not necessarily to find a heterogeneous group of parents (Sandelowski, 1995). Once 5-10 participants were enrolled, interest in the study heightened, so I decided to be more selective about which participants I consented to include in the study. Periodically, I stopped recruiting altogether, so I could complete interviews. There were some commonalities among participants' stories, so I chose participants from my recruitment pool I thought may have a slightly different perspective. For example, characteristics 62 such as older age, living in a rural location, various ethnicities and religions, and having children with different diagnoses were considered for participation in the study. Some mothers participated without their husbands, so an attempt was made to recruit fathers without participant wives to compare the genders separately. However, recruitment was typically initiated and supported by the wife, so this plan was not followed and some wives and their husbands participated together. The wives wanted to participate with their husbands. As part of the process of being selective about participants, three husbands of participants were not recruited. Prior interviews had shown the fathers' stories to be fairly similar to their wives'. Interestingly, no parents who were currently divorced volunteered to participate; some had been remarried and were still married to the mother or father of the child with ID. Once the 18 participants had been interviewed, I felt comfortable declaring the data were saturated with rich stories containing similar characteristics that would permit me to answer study research questions (Sandelowski, 1995). Once participants were enrolled, I planned to do the three individual interviews fairly close together to increase continuity between sessions. The ideal was to schedule them no more than 1 week apart. On the other hand, I wanted at least a day or 2 between interviews to provide time to review notes from the previous interviews and prepare questions and comments for upcoming interviews. In the end, interviews were generally conducted 1 to 2 weeks apart; however, some were conducted months apart due to scheduling conflicts. As a result of changes in the initial interview guide, interviews did not build on one another. As a result, I believe additional time between interviews did not affect information shared by participants. 63 Individual participants were interviewed three times with some exceptions. One couple was interviewed only twice out of convenience for all of us, with interviews two and three being condensed into a single session. One participant was interviewed four times to allow time for assistance in creating her lifeline drawing. When scheduling interviews, I requested they be held at times and in places as free from distractions as possible. Fathers and mothers were interviewed separately with one exception. A husband who did not participate in the study sat next to his wife and listened to the interview. He seem