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Expecting the unexpected: measures, outcomes and dying trajectories for expected and unexpected death in adults with intellectual disabilities in social care settings in the UK
- Authors:
- BERNAL Jane, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(2), 2021, pp.594-605.
- Publisher:
- Wiley
Background: Considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered. Method: This paper forms part of a larger cross‐sectional study of deaths in a defined population of adults with intellectual disabilities. Data from VOICES‐SF were obtained from intellectual disability service providers for each death within their supported population over 18 months, 149 decedents in all. Results: Only 34.2% of deaths were anticipated, death was often sudden or followed a short illness. Four dying trajectories were identified, and categorized by length of illness, service use, care outcomes, symptom control and cause of death. Conclusions: Recognition that most deaths in this group were unanticipated implies a need for better preparation for less expected dying and better anticipation. A descriptive epidemiology of dying among people with intellectual disabilities is needed. (Edited publisher abstract)
Doing research on people with learning disabilities, cancer and dying: ethics, possibilities and pitfalls
- Authors:
- TUFFREY-WIJNE Irene, BERNAL Jane, HOLLINS Shelia
- Journal article citation:
- British Journal of Learning Disabilities, 36(3), September 2008, pp.185-190.
- Publisher:
- Wiley
There has been increasing recognition of the fact that people with learning disabilities can and should be involved as active participants in research. However, in the area of cancer and palliative care, they continue to be protected and excluded from contributing to expanding our knowledge base and the shaping of care provision. This paper explores the issues involved in including people with learning disabilities as participants in research around cancer, death and dying. It stems from the authors' own experience of conducting research around cancer and palliative care, where people with learning disabilities were the key informants. Methodological issues include the choice of methodology and problems around recruiting a sample. Ethical issues include informed consent, participants' requests to forego anonymity, observation of sub-optimal care and issues around the boundaries between the roles of researcher and clinician.
Secure in-patient services for people with learning disability: is the market serving the user well?
- Authors:
- YACOUB Evan, HALL Ian, BERNAL Jane
- Journal article citation:
- Psychiatric Bulletin, 32(6), June 2008, pp.205-207.
- Publisher:
- Royal College of Psychiatrists
Psychiatrists can help in the development of better local services for people with learning disability by clearly defining the client group and their needs, involvement in the process of commissioning such services, and learning from colleagues in other service areas such as forensic psychiatry. This should help enable people with learning disability with very high needs to have similar access to services as others have.
Tourette's Syndrome and challenging behaviour: a case study
- Authors:
- FINLAY W. Mick L., BERNAL S. Jane
- Journal article citation:
- British Journal of Learning Disabilities, 24(2), 1996, pp.80-83.
- Publisher:
- Wiley
Tourette's Syndrome, although often undiagnosed, is one of the remediable causes of challenging behaviour in people with learning disabilities. The social consequences for the sufferer when the disorder is unrecognised can include rejection, blame and isolation. This paper describes the diagnosis of Tourette's Syndrome in a man with learning disabilities, and the effectiveness of medical and social interventions.