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This book on end of life examines how to include people with intellectual and developmental disability in the inevitability of dying and death. Comprising 17 chapters, it addresses challenging and under-researched topics including suicide, do-not-resuscitate, advance care planning, death doulas and accessible funerals. Topics reflect everyday community, palliative care, hospice and disability services. The book proposes that the rights of people with disabilities should be supported up to and after their death. Going beyond problem identification, the chapters offer positive, evidence-supported responses that translate research to practice, together with practice examples and resources grounded in lived experience. The book is applicable to readers from the disability field, and mainstream health professionals who assist people with disability in emergency care, palliative care or end-of-life planning

Intro -- Foreword -- Reference -- Preface -- About This Book -- Praise for End of Life and People with Intellectual and Developmental Disability -- Contents -- Notes on Contributors -- List of Figures -- List of Tables -- 1 Current and New Developments in Death, Dying and End-of-Life Care Policies and Practices -- Introduction -- Death, Dying and Place of Death in the Twenty-First Century -- What Is Palliative Care? -- Palliative Care in the Community -- Public Health Approaches to End-of-Life Care -- Advance Care Planning -- End-of-Life Decision-Making -- Assisted Dying and Palliative Sedation -- Conclusion -- References -- 2 Experience of End-of-Life Issues by People with Intellectual Disability -- Introduction -- The Experiences of People with Intellectual Disability -- What People with Intellectual Disability Say, Feel and Do About End-of-Life Issues -- Exclusion from End-of-Life Discussions and Activities -- The Death of Others -- Your Own Death -- Disclosure and Non-disclosure -- Reasons for Non-disclosure -- Dealing with Disclosure Issues -- Staff Readiness to Provide Support -- Active Participation in End-of-Life Research -- What People with Intellectual Disability Understand About End of Life? -- How Do People with Intellectual Disability Respond Emotionally to Discussing End of Life? -- Measurement Instruments Designed or Adapted Specifically for People with Intellectual Disability -- Commentary -- Reflection -- Reflection Questions -- Resources -- Self-Report Instruments -- References -- 3 Suicide and Autism: A Lifespan Perspective -- Autism -- Risk and Prevalence of Suicide Behaviour in Autism -- Intellectual Disability/intellectual Developmental Disorder and Suicide Risk -- Correlates, Risk and Protective Factors -- Dimensional Constructs -- Risk Assessment and Instruments -- Prevention and Service Access.

AbstractBackgroundThe right of people with disability to be self‐determining, to live a life of their choosing, is increasingly recognized and promoted. For adults with intellectual disability, support to enable self‐determination may be required. This is often provided by family, yet little is understood about the experience of providing such support.MethodsAn interpretative phenomenological analysis (IPA) of eight individual, semi‐structured interviews with mothers was conducted, to understand the meaning given to their experience of supporting self‐determination of their adult son or daughter with intellectual disability.ResultsThree superordinate themes were identified: (a) support context; (b) continuum of support roles; and (c) mother's personal concerns.ConclusionMothers of adults with intellectual disability experience an ongoing sense of responsibility to balance competing rights and concerns as they support self‐determination. This complex, interdependent relationship results in roles that may facilitate, guide, influence and at times restrict choice and control.

AbstractBackgroundCaregivers often avoid involving people with intellectual disability in end‐of‐life discussions and activities. One reason is fear that the person may become upset or psychologically harmed.MethodsPre and post a 6‐month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention (n = 24) and comparison (n = 20) participants with intellectual disability. End‐of‐life 'encounters' (conversations/activities about end of life) were monitored, including comfort ratings.ResultsOverall, 79% of encounters were rated very comfortable/somewhat comfortable. Participants initiated 69% of encounters. There was no significant pre–post change in depression or fear of death. Anxiety improved significantly.ConclusionsThis is the first controlled, longitudinal study providing robust evidence about whether discussing end of life leads to emotional discomfort or psychological harm. Data showed adults with intellectual disability can safely engage in conversations/activities about end of life. The high percentage of participant‐initiated encounters showed participants wanted to talk about end of life.