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Disclosure and Plan of Care at End of Life: Perspectives of People with Intellectual Disabilities and Families in Ireland
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Cithambaram, Kumaresan; Duffy, Mel; Courtney, Eileen – British Journal of Learning Disabilities, 2020
Background: Recently, more and more people with intellectual disabilities have been dying from life-limiting conditions, and on many occasions, people with intellectual disabilities have not been informed of this. There is limited evidence concerning the views and opinions of this cohort regarding the information that is needed in order for…
Descriptors: Disclosure, Foreign Countries, Intellectual Disability, Death
Caring for a Child with a Life Limiting Condition: The Experiences of Nurses in an Intellectual Disability Service Provider
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Connor, Eilis O.; Corcoran, Yvonne – Journal of Intellectual Disabilities, 2022
This study elicited the experiences of nurses caring for children with life-limiting conditions and their family, within a community based intellectual disability service. A qualitative descriptive research approach was adopted where purposeful sampling recruited 10 participants. Data was collected using one to one semi-structured interviews and…
Descriptors: Nurses, Children, Intellectual Disability, At Risk Persons
"Being There": The Experiences of Staff in Dealing with Matters of Dying and Death in Services for People with Intellectual Disabilities
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Todd, Stuart – Journal of Applied Research in Intellectual Disabilities, 2013
Background: Research on staffed housing for people with intellectual disability has identified the challenges in achieving positive quality of life outcomes. However, a less well considered dimension of such services is that they are places of living and dying. This paper looks at the experiences of staff in dealing with issues of death and dying.…
Descriptors: Mental Retardation, Death, Caregivers, Coping
The Factors Affecting End-of-Life Decision-Making by Physicians of Patients with Intellectual Disabilities in the Netherlands: A Qualitative Study
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Wagemans, A.; van Schrojenstein Lantman-de Valk, H.; Proot, I.; Metsemakers, J.; Tuffrey-Wijne, I.; Curfs, L. – Journal of Intellectual Disability Research, 2013
Background: The aim of this study was to investigate the process of end-of-life decision-making regarding people with intellectual disabilities (ID) in the Netherlands, from the perspective of physicians. Methods: This qualitative study involved nine semi-structured interviews with ID physicians in the Netherlands after the deaths of patients with…
Descriptors: Foreign Countries, Death, Mental Retardation, Physicians
End-of-Life Decisions: An Important Theme in the Care for People with Intellectual Disabilities
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Wagemans, A.; van Schrojenstein Lantman-de-Valk, H.; Tuffrey-Wijne, I.; Widdershoven, G.; Curfs, L. – Journal of Intellectual Disability Research, 2010
Background: While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing residential care for 335 people with IDs. Method: A…
Descriptors: Residential Care, Mental Retardation, Decision Making, Self Determination
Models of Care
Wilson, Dottie C.; And Others – Death Education, 1978
This section describes hospice or palliative care programs for terminally ill patients and their families. The programs described are in Montreal, Quebec; Halifax, Nova Scotia; New Haven, Connecticut; Marin County, California; Tucson, Arizona; and Springfield, Illinois. (Author/JEL)
Descriptors: Death, Family Involvement, Foreign Countries, Individual Needs