End of life, palliative care and intellectual disability
Research type
Research Study
Full title
Palliative Care in Intellectual Disability in older adults across Ireland: The experiences of family/paid carers
IRAS ID
181755
Contact name
Laurence Taggart
Contact email
Sponsor organisation
Ulster University
Duration of Study in the UK
0 years, 6 months, 31 days
Research summary
The study of end of life issues for people with learning disability or intellectual disability (ID), it is a subject that has a limited but growing body of literature. To date, there is not a clear picture of the scale and breadth of the problems that are experienced by people with ID and their carers at end of life. It has been suggested that the link between evidence based policy and the need for research to influence policy in order to impact on practice is imperative.
The aim of this study is to explore the perceived experience of reaching end of life as an older adult with ID, by speaking with family and paid carers through holding structured 1-1 interviews with the VOICES questionnaire and at the same time audio-recording these interviews.
This study intends to identify 15-20 family or paid family carers of an older person with ID (aged 40yrs plus) who has died in the last 2yrs in the NHSCT, and undertake a 1-1 interview with them using the VOICES questionnaire. This interview format has been recently piloted in Ireland and has been be slightly amended for use within a N Ireland context.
REC name
HSC REC B
REC reference
15/NI/0134
Date of REC Opinion
23 Sep 2015
REC opinion
Further Information Favourable Opinion