About the Project
People with learning disabilities in the UK generally die 15-20 years younger(1) and have 2.5 times the health problems of people without learning disabilities(2). They do not access health screening services to the same extent (3), have a larger proportion of avoidable deaths related to poorer healthcare(4) and are more likely to experience the socio-economic determinants of poor health(5). Changes in life expectancy (from 18 years in 1930 to 66 years in 1993, with projected increases (6, 7)), mean that people with learning disabilities are experiencing a prolonged period of dying, not only of cancer but of other illnesses (8) such as Alzheimer’s disease; other dementias (9); and cardio-vascular disease.
Little attention has been paid to this group and there is evidence of assumptions that people with learning disabilities are not able or ready to make decisions about their end of life care (10). This group has been identified this as a largely invisible population with invisible needs about which more needs to be known. (11). 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 experiences (8).
Aim
To explore the issues experienced by professionals working within learning disabilities services when caring for someone with palliative care needs.
Methods
An ethnographic approach is congruent with the aim as it will enable insights into the social processes of learning disabilities service providers in their natural setting (12). Data collection will consist of ethnographic fieldwork (participant observations and interviews), with scope for these methods to be informed by the PhD student. There are existing links with professionals in north west England with scope to expand.
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.
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 2018 through our online application system. Closing date: midnight 28th February 2018.
References
1. Hatton C, Glover G, Emerson E, I B. People with learning disabilities in England 2015. London; 2016.
2. 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.
3. 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.
4. Heslop P, Blair PS, Fleming P, Hoghton M, Marriott A, Russ L. The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. The Lancet. 2014;383(9920):889-95.
5. Emerson E, Hatton C. Health inequalities and people with intellectual disabilities: Cambridge University Press; 2013.
6. Braddock D. Aging and developmental disabilities: Demographic and policy issues affecting American families. Mental Retardation. 1999;37(2):155-61.
7. 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.
8. 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.
9. 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.
10. 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.
11. Tuffrey-Wijne I, McLaughlin D. Consensus norms for palliative care of people with intellectual disabilities in Europe: EAPC White Paper. 2015.
12. Punch KF. Introduction to social research: Quantitative and qualitative approaches: Sage; 2013.
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