Examining caregiving issues from a multigenerational, family life cycle perspective, this volume deals with the broad spectrum of chronic illnesses that necessitate family caregiving throughout the lifespan and discusses responses to these challenges by both caregiving families and caregiving systems. Part One addresses the caregiving paradigm and the relationship of family caregiving research to family life studies. Part Two examines conceptual aspects of caregiving, ranging from the expansion of the caregiving paradigm, caregiving processes and tasks, to the positive aspects of caregiving. Part Three emphasizes how family caregivers are affected by the connection (or lack of it) to macro-level systems.
Chapter 13: Caregiving Issues in Families of Children with Chronic Medical Conditions
Caregiving Issues in Families of Children with Chronic Medical Conditions
It's upsetting that they [autistic adults] must live with strangers. … Where are their families?
Mother of a 5-year-old with severe Pervasive Developmental Disorder after reading a newspaper article on group homes for autistic adults
This chapter presents a theoretical framework for understanding issues related to parenting and caregiving when a child has a serious, chronic medical condition. Building upon a social-ecological and systems model, this framework emphasizes individuals, and systems (e.g., parents, families, siblings, schools, hospitals) at multiple levels of analysis as they relate to caregiving demands. We organize empirical research, theoretical papers, and clinical examples related to caregiving in families with a disabled ...