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The issues faced by providers of intellectual disabilities services when caring for older people with palliative care needs

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  • Full or part time
    Dr S Brearley
    Prof C Hatton
  • Application Deadline
    No more applications being accepted
  • Competition Funded PhD Project (European/UK Students Only)
    Competition Funded PhD Project (European/UK Students Only)

Project Description

Life expectancy for people with an intellectual disability (ID) has increased from 18 (1930) to 66 years (1993) and the increase is projected to continue (1, 2). As a result more people with ID are experiencing a prolonged period of dying, not only of cancer but of other illnesses (3) such as Alzheimer’s disease; other dementias (4); and cardio-vascular disease. This population have 2.5 times the health problems of their peers without ID (5) but do not access health screening services to the same extent (6). Little attention has been paid to this group and there is evidence of assumptions that people with ID are not able or ready to make decisions about their end of life care (7).

A recent White Paper identified this as a largely invisible population with invisible needs, and highlighted the need for research into end of life decision making for people with ID (8). There are indications that obstacles to this include service provider-issues such as staff training, staff anxiety and concerns about liability, but little is known about these or the experience of providing care for older people with ID and palliative care needs (3).

Aim
To explore the issues experienced by professionals working within intellectual disability services when caring for an older person with palliative care needs.

Methods
An ethnographic approach will enable insights into the social processes of ID service providers in their natural setting. There is scope for these methods to be informed by the PhD student. There are existing links with professionals in N.England.

Supervisors
Dr Sarah Brearley and Professor Chris Hatton have expertise in palliative care, intellectual disabilities and research methodologies. They are experienced supervisors with a commitment to student development and creating new knowledge in health inequalities.

Lancaster University
Lancaster is ranked in the top 10 of all three major UK university league tables and in the top 1% of universities globally. The city is ranked as one of the top 10 most vibrant urban centres.

Informal enquires about the project should be made directly to Dr Sarah Brearley. Applications are made by completing an application for PhD Health Research October 2017 through our online application system. Closing date, midnight 3rd April 2017.

Funding Notes

Awards are available for UK or EU students only for a maximum of three years full-time study. Awards will cover University Fees and Doctoral Stipend (2017-2018: £14,553).

References

1. Braddock D. Aging and developmental disabilities: Demographic and policy issues affecting American families. Mental Retardation. 1999;37(2):155-61.
2. P. Janicki M, Dalton AJ, Michael Henderson C, Davidson PW. Mortality and morbidity among older adults with intellectual disability: health services considerations. Disability and rehabilitation. 1999;21(5-6):284-94.
3. Tuffrey‐Wijne I, Hogg J, Curfs L. 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. Journal of Applied Research in Intellectual Disabilities. 2007;20(4):331-44.
4. Janicki MP, Dalton AJ, McCallion P, Baxley DD, Zendell A. Group home care for adults with intellectual disabilities and Alzheimer’s disease. Dementia. 2005;4(3):361-85.
5. van Schrojenstein Lantman-De HM, Metsemakers JF, Haveman MJ, Crebolder HF. Health problems in people with intellectual disability in general practice: a comparative study. Family practice. 2000;17(5):405-7.
6. Iacono T. Ethical challenges and complexities of including people with intellectual disability as participants in research. Journal of Intellectual and Developmental Disability. 2006;31(3):173-9.
7. McCarron M, McCallion P. End-of-life care challenges for persons with intellectual disability and dementia: making decisions about tube feeding. Intellectual and developmental disabilities. 2007;45(2):128-31.
8. Tuffrey-Wijne I, McLaughlin D. Consensus norms for palliative care of people with intellectual disabilities in Europe: EAPC White Paper. 2015.

How good is research at Lancaster University in Allied Health Professions, Dentistry, Nursing and Pharmacy?

FTE Category A staff submitted: 64.40

Research output data provided by the Research Excellence Framework (REF)

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