End-of-Life Care for a Man with Developmental Disabilities

Lohiya, Ghan-Shyam; Tan-Figueroa, Lilia; Crinella, Francis M.

doi:10.3122/jabfm.16.1.58

Cited by 13 publications

(19 citation statements)

References 8 publications

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“…(25)(26)(27)(28). These are complex issues, and involve not only issues of law that will differ in each country, but also emotive issues, particularly if the family or carers don't agree with the medical staff or with the patient's wishes (29).…”

Section: Literature Reviewmentioning

confidence: 99%

Providing palliative care to people with intellectual disabilities who have cancer

Tuffrey‐Wijne¹,

Curfs²,

Hollins³

2008

International Journal on Disability and Human Development

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The population of people with intellectual disabilities (ID) is ageing, and growing numbers are dying of age-related illnesses, including cancer. Objective·. This paper explores the issues that affect the delivery of optimal palliative care to people with ID who have cancer. Methods: The literature is reviewed and pertinent issues are highlighted. As an illustration and to expose further relevant issues, we describe a case of a man with severe ID who died in a group home. He was a participant in an ethnographic study of the experiences of people with ID who have cancer. Results·. The review of the literature around palliative care and ID shows a range of issues, including late diagnosis, difficulties around the presentation and assessment of pain and other symptoms, problems with communication, issues around disclosure of diagnosis and prognosis, ethical issues around consent to treatment and end-of-life decision making, service planning, staff training, and the patient's own wishes. From the case study, further issues emerge, including the need to acknowledge a persons people's life experience when they are dying, and the need to recognize the important place of families in their lives. Conclusion: The authors conclude that people with ID have a right to receive the best possible palliative care at the end of their lives, and that it is crucial to listen to their own needs and wishes.

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Section: Literature Reviewmentioning

confidence: 99%

Providing palliative care to people with intellectual disabilities who have cancer

Tuffrey‐Wijne¹,

Curfs²,

Hollins³

2008

International Journal on Disability and Human Development

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“…1999; Cavanaugh 2005; McEnhill 2005), several USA ethical case reports are concerned with the rights of people with intellectual disabilities to refuse treatment, and the dangers of treating them longer than is warranted, compromising their quality of life (Douglas et al. 2000; Lohiya et al. 2003).…”

Section: Ethical Issues: End‐of‐life Decision Makingmentioning

confidence: 99%

End‐of‐Life and Palliative Care for People with Intellectual Disabilities Who have Cancer or Other Life‐Limiting Illness: A Review of the Literature and Available Resources

Tuffrey‐Wijne¹,

Hogg²,

Curfs³

2007

Research Intellect Disabil

101

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Background As patterns of morbidity and mortality are changing, more people with intellectual disabilities develop cancer or other life-limiting illness. This paper reviews the literature around the need of people with intellectual disabilities for palliative care. Methods A range of databases and the World Wide Web were searched for relevant papers, book chapters, training and information materials, unpublished materials and policy guidelines. Publications from 1995 to 2005 are included. Findings Although there has been a steady increase in published materials in recent years, research data around the palliative care needs of people with intellectual disabilities remain scarce. Case reports are the most prevalent method of exploring pertinent issues. The paper presents an overview of issues identified in the literature, with a particular focus on pain and symptom assessment, ethical issues, service planning and training needs. Conclusion There are significant gaps in current knowledge. The authors make recommendations for future areas of research and development.

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“…Though DCWs generally do not participate in the formal palliative care decision‐making process to produce the final advance directives document, it is important that they are familiar with advance directive concepts (Lohiya, Tan‐Figueroa, & Crinella, ). Their conversations with family members may be critical as the advance directives are constructed (Guinn & Winston, ).…”

Section: Introductionmentioning

confidence: 99%

Palliative care needs of direct care workers caring for people with intellectual and developmental disabilities

Kim

2020

Brit J Learn Disabil

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Accessible summary• Palliative care is a holistic model of care that lessens suffering and improves quality of life for individuals who are very sick.• As people with intellectual and developmental disabilities (PWIDD) get very sick, direct care workers (DCWs) are more likely to provide palliative care.• Researchers need to know more about what palliative care training DCWs need.• One hundred and forty-nine (149) DCWs filled out surveys about their palliative care training needs. • The research showed that DCWs need more training in certain areas, such as cultural competence, effective communication, post-death logistics and legal matters. Abstract Background: Direct care workers (DCWs) caring for people with intellectual and developmental disabilities (PWIDD) provide palliative care, but research indicates DCWs are ill-equipped to do so. This study aimed to assess DCWs' palliative care experience and training and their perceived training needs. Materials and Methods: Staff trained as DCWs (n = 149) in organisations that serve PWIDD were surveyed in suburban and rural areas of a U.S. Midwestern state. Descriptive statistics were run, including t tests, analysis of variance, Scheffe's tests for pairwise comparison, Pearson's correlation, Fisher's exact tests and chi-square tests.Results: Participants reported limited experience in legal matters, yet had substantial experience in assisting PWIDD with pain, distress and bereavement. Training was inadequate but desired for cultural competence, effective communication, post-death logistics and legal matters. Rural DCWs reported less palliative care experience and training than suburban counterparts. Conclusions: The results demonstrate the need for specific types of palliative care training among DCWs caring for PWIDD and that such training should be prioritised in rural agencies. Future research can explore ways to maximise training effectiveness. K E Y W O R D S direct care workers, intellectual and developmental disabilities, needs assessment, palliative care, training How to cite this article: Gray JA, Kim J. Palliative care needs of direct care workers caring for people with intellectual and developmental disabilities. Br J Learn Disabil. 2020;48:69-77.

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End-of-Life Care for a Man with Developmental Disabilities

Cited by 13 publications

References 8 publications

Providing palliative care to people with intellectual disabilities who have cancer

Providing palliative care to people with intellectual disabilities who have cancer

End‐of‐Life and Palliative Care for People with Intellectual Disabilities Who have Cancer or Other Life‐Limiting Illness: A Review of the Literature and Available Resources

Palliative care needs of direct care workers caring for people with intellectual and developmental disabilities

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