Supporting People with Intellectual Disability at End of Life: Moral Distress Among Staff Caregivers During COVID-19

McCarron, Mary; Kelly, Kathyan; McCallion, Philip; Burke, Éilish; Haigh, Margaret; Wormald, Andrew

doi:10.1007/978-3-030-98697-1_9

Cited by 1 publication

(3 citation statements)

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“…Looking at moral distress as intended here may illuminate further the unforeseen consequences of COVID-19 lockdowns and inform future training to support staff carers who are meeting obstacles in the care of people with an intellectual disability at the end of life. In trying to create a "good death" carers have a moral and ethical framework in place, challenges to this framework are more acute raising the risk of moral distress (McCarron et al, 2022). This research aims to investigate the experiences of carers of people with an intellectual disability who died during the COVID-19 pandemic through the Barlem and Ramos (2015) conceptual model for moral distress.…”

Section: Intellectual Disabilitymentioning

confidence: 99%

“…End‐of‐life care for people with an intellectual disability can be particularly challenging, and difficulties can arise around uncertainty of needs, communication and pain management (Adam et al, 2020; McCarron et al, 2022; Voss et al, 2019). End‐of‐life care in this group includes shared decision‐making, open communications, physical, psychological, bereavement and spiritual support for the person and their carers (Bekkema et al, 2014; McCarron et al, 2022; Moro & McGinley, 2021). End‐of‐life experiences for people with an ID in Ireland are individualised and people tend to be either live as part of an extended family or within ID residential services and access services dependent on their needs (McCarron, Burke, et al, 2017).…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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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

Kelly

Haigh

McCarron

et al. 2023

Research Intellect Disabil

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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, semi-structured telephone interviews. Template analysis was used to analyze the interviews.Results: Obstructions in performing their duties left carers feeling powerless and experiencing moral conflict distress, moral constraint distress and moral uncertainty distress. Most managed to connect to the moral dimension in their work through peer support, understanding they fulfilled the wishes of the deceased, and/or thinking about how they or others did the best they could for the person they were caring for.Conclusions: This research demonstrates that while restrictions may have been effective in reducing the spread of COVID-19, they were potentially damaging to carer wellbeing.

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Section: Intellectual Disabilitymentioning

confidence: 99%