End of life care for people with a learning disability

Morton-Nance, Sandra; Schäfer, Tim

doi:10.7748/ns2012.09.27.1.40.c9270

Cited by 9 publications

(38 citation statements)

References 20 publications

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“…While the term “advocate” is widely used in standards for practice and codes of conduct, it is not necessarily well understood by nurses or even clearly defined in the literature (Blackmore, ; Llewellyn & Northway, ). Nevertheless, the role of the specialist ID nurse in addressing inequity and to advocate for partnerships between ID nurses and other specialities has been well recognised (Lloyd & Coulson, ; Morton‐Nance & Schafer, ; While & Clark, ). Developing decision‐making guidelines for ID nurses when they are unable to ascertain a person's preferences may assist in supporting them in the role of advocate.…”

Section: Resultsmentioning

confidence: 99%

An exploration of the practice, policy and legislative issues of the specialist area of nursing people with intellectual disability: A scoping review

et al. 2018

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The specialist field of intellectual disability nursing has been subjected to a number of changes since the move towards deinstitutionalisation from the 1970s. Government policies sought to change the nature of the disability workforce from what was labelled as a medicalised approach, towards a more socially oriented model of support. Decades on however, many nurses who specialise in the care of people with intellectual disability are still employed. In Australia, the advent of the National Disability Insurance Scheme offers an apt moment to reflect upon these decades of specialised nursing care as the context of this nursing care will continue to evolve. A review of the published literature was conducted to explore what has shaped the field in the past and how this might inform the future of this speciality area under new policy and service contexts. People with intellectual disability have specific health and support needs that require a specialised workforce. Specialist nurses continue to be needed for people with intellectual disability.

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Section: Resultsmentioning

confidence: 99%

An exploration of the practice, policy and legislative issues of the specialist area of nursing people with intellectual disability: A scoping review

et al. 2018

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“…Some of the highest ranked ideas were around involvement, support and preparation for death. Likewise, Morton‐Nance and Schafer () interviewed three learning disability nurses and three district nurses who were caring for people with learning disabilities at the end of their life. When reflecting on good experiences of care, favourable recollections were of ones where patients, their family and staff were all informed and prepared for death.…”

Section: Resultsmentioning

confidence: 99%

“…When reflecting on good experiences of care, favourable recollections were of ones where patients, their family and staff were all informed and prepared for death. They spoke of a “good death” (Morton‐Nance & Schafer, , pg. 43) where patients had choice over aspects of their care, contributed to decisions regarding treatment options and place of death, all whilst maintaining patient dignity.…”

Section: Resultsmentioning

confidence: 99%

“…These judgements around protection appeared to stem from staff’s own beliefs and emotions around the situation rather than an assessment of what would be in the best interest of the person with a learning disability. In that order, Morton‐Nance and Schafer () found an attitude of paternalism with staff often withholding information from the person with a learning disability in the belief that it would protect them from harm and prevent distress. Likewise, Tuffrey‐Wijne et al.…”

Section: Resultsmentioning

confidence: 99%

“…Morton‐Nance and Schafer () found that both district and learning disability nurses cited problems around communication as a barrier to disclosure. They felt that they had no experience, skills or tools to effectively communicate a diagnosis to a person with a learning disability.…”

Section: Who Is Disclosingmentioning

confidence: 99%

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Breaking bad news to people with learning disabilities: A literature review

Brownrigg

2018

Brit J Learn Disabil

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Accessible Summary A literature review was undertaken to explore reasons why relatives, staff and healthcare professionals choose to tell or not tell people with learning disabilities bad news. People with learning disabilities’ views on being told bad news are discussed. The author looks at who should tell people with learning disabilities bad news. The author found that relatives, staff and healthcare professionals have different reasons for telling and not telling people with learning disabilities bad news. The author suggests talking about bad news is important. Abstract BackgroundThis article provides a literature review exploring reasons for disclosure and nondisclosure of bad news to people with learning disabilities. Connections are made to current policy, law and ethics to highlight the complexity of this issue. MethodsThis review examines literature on disclosing bad news to people with learning disabilities from 2007 to 2017. A total of 13 articles were found with nine articles having a direct focus on breaking bad news. ResultsThe main themes identified from this review are maintaining rights and dignity, upholding duty of care, underestimating resilience, protection from harm and capacity to understand. Exploration of who should disclose is examined in reference to relatives, staff and healthcare professionals. ConclusionsTrends surrounding disclosure of diagnosis and prognosis to people with learning disabilities have not kept pace with the trend to disclose with the general population. People with learning disabilities are frequently not informed of their terminal diagnosis and often die without this knowledge. Equally, bad news concerning a friend or relative may also be withheld.

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End‐of‐life care research on people with intellectual disabilities: Challenges for proactive inclusion in an Irish context

Cithambaram

Duffy

Courtney

2018

Brit J Learn Disabil

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Accessible Summary• People with intellectual disabilities are living longer than ever before.• Although people with intellectual disabilities are living longer, they still suffer from many illnesses. This may reduce their lifespan, and they may die earlier than other people and therefore require good end-of-life care whatever age they die.• Views and opinions of people with intellectual disabilities are important in determining what is good care at the end of life.• Ethical and practical guidelines in relation to recruitment, obtaining consent, and having conversation around sensitive issues are clearly discussed in this paper. AbstractBackground: In recent times, people with intellectual disabilities are increasingly included in research studies; however, their participation in sensitive research such as palliative and end-of-life care is less frequent. The reasons for not including people with intellectual disabilities in these kinds of research studies are issues in relation to obtaining consent, difficulty of recruiting, and engaging and collecting relevant information. This paper aimed to provide insight into how people with intellectual disabilities could be proactively included in research which is sensitive to their unique needs.Method: This study included 13 people with mild and moderate intellectual disabilities and explored their end-of-life care needs from their perspectives. After obtaining appropriate ethical approval, the research process was commenced. Applying the constructive grounded theory approach, data were collected and analysed by using the constant comparative method. A story from the book Am I Going to Die was used to enhance the understanding of the concepts of death and dying while collecting data.Findings: Participants with intellectual disabilities were recruited by establishing a close relationship with service providers. Capacity to consent and informed consent were fostered by carefully explaining the research process through easy-to-read information, and the data collection process was successfully completed by having a person-centred approach.Conclusion: People with intellectual disabilities can be successfully included in research. This is possible when their diverse needs are carefully considered, and appropriately developed protocols which meet their needs in relation to their capacities and abilities are utilised. This approach requires a flexible and inclusive research process. | 71CITHAMBARAM eT Al.

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End of life care for people with a learning disability

Abstract: Modifications to existing palliative care services, involving joint working, improved co-ordination and reasonable adjustments, is recommended. This aims to address any inequalities in care provision for people with a learning disability who are at the end of their lives.

Cited by 9 publications

References 20 publications

An exploration of the practice, policy and legislative issues of the specialist area of nursing people with intellectual disability: A scoping review

An exploration of the practice, policy and legislative issues of the specialist area of nursing people with intellectual disability: A scoping review

Breaking bad news to people with learning disabilities: A literature review

End‐of‐life care research on people with intellectual disabilities: Challenges for proactive inclusion in an Irish context

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