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Moral Distress in Carers for People with an Intellectual Disability Who Died during the COVID-19 Pandemic, a Template Analysis Extending the Barlem and Ramos Model of Moral Distress
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Kelly, Kathyan; Margaret, Haigh; McCarron, Mary; McCallion, Philip; Burke, Eilish; Wormald, Andrew David – Journal of Applied Research in Intellectual Disabilities, 2023
Background: This article aims to understand moral distress in carers of people with an intellectual disability during the COVID-19 pandemic. Method: Nine staff carers of seven people with an intellectual disability, who had been participants of the IDS-TILDA study in Ireland, who died during the COVID-19 pandemic participated in in-depth,…
Descriptors: Intellectual Disability, COVID-19, Pandemics, Death
Making Sense of Bereavement in People with Profound Intellectual and Multiple Disabilities: Carer Perspectives
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Young, Hannah; Hogg, James; Garrard, Brenda – Journal of Applied Research in Intellectual Disabilities, 2017
Background: People with intellectual disabilities are thought to have a reduced capacity for understanding death. Drawing on cognitive theory, researchers have suggested that those with profound intellectual and multiple disabilities mainly perceive loss as a mismatch between past and present experiences. However, very little research has…
Descriptors: Grief, Intellectual Disability, Death, Severe Intellectual Disability
Providing End-Of-Life Care in Disability Community Living Services: An Organizational Capacity-Building Model Using a Public Health Approach
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Grindrod, Andrea; Rumbold, Bruce – Journal of Applied Research in Intellectual Disabilities, 2017
Background: There is broad consensus within the disability field that the end-of-life care offered to people with intellectual disabilities should be of a quality consistent with that advocated by contemporary palliative care. In practice, however, various barriers are encountered when applying palliative care strategies to the end-of-life care of…
Descriptors: Foreign Countries, Death, Medical Services, Intellectual Disability
Care Staff Perceptions of Choking Incidents: What Details Are Reported?
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Guthrie, Susan; Lecko, Caroline; Roddam, Hazel – Journal of Applied Research in Intellectual Disabilities, 2015
Background: Following a series of fatal choking incidents in one UK specialist service, this study evaluated the detail included in incident reporting. This study compared the enhanced reporting system in the specialist service with the national reporting and learning system. Methods: Eligible reports were selected from a national organization and…
Descriptors: Foreign Countries, Death, Reports, Disclosure
The Experience of Carers in Supporting People with Intellectual Disabilities through the Process of Bereavement: An Interpretative Phenomenological Analysis
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Handley, Emily; Hutchinson, Nick – Journal of Applied Research in Intellectual Disabilities, 2013
Background: This study explored the personal experiences of family carers and residential care staff in supporting adults with intellectual disabilities through the process of bereavement. Method: A semi-structured interview was used to interview 11 carers on their experience of supporting adults with intellectual disabilities through the process…
Descriptors: Foreign Countries, Mental Retardation, Caregivers, Grief
Developing Guidelines for Disclosure or Non-Disclosure of Bad News around Life-Limiting Illness and Death to People with Intellectual Disabilities
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Tuffrey-Wijne, Irene; Giatras, Nikoletta; Butler, Gary; Cresswell, Amanda; Manners, Paula; Bernal, Jane – Journal of Applied Research in Intellectual Disabilities, 2013
Background: There is insufficient evidence to guide decisions around (non-)disclosure of bad news of life-limiting illness and death to people with intellectual disabilities. Aim: The aim of this study was to develop guidelines for decisions about (non-)disclosure of bad news around life-limiting illness and death to people with intellectual…
Descriptors: Guidelines, Disclosure, Diseases, Death
Caregiver Perceptions of the Understanding of Death and Need for Bereavement Support in Adults with Intellectual Disabilities
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MacHale, Rosemary; McEvoy, John; Tierney, Edel – Journal of Applied Research in Intellectual Disabilities, 2009
Background: Care staff are an important source of information and support for people with intellectual disabilities following bereavement. The purpose of this study was to explore staff perceptions of service users' conceptualizations of death, reactions to bereavement, required levels of support and staff confidence in providing post-bereavement…
Descriptors: Grief, Mental Retardation, Psychopathology, Caregiver Attitudes