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Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities
  1. Dorry McLaughlin1,2,
  2. Owen Barr3,
  3. Sonja McIlfatrick4 and
  4. Roy McConkey5
  1. 1School of Nursing and Midwifery, Queen's University, Belfast, Northern Ireland, UK
  2. 2School of Nursing, Institute of Nursing and Health Research, University of Ulster, Newtownabbey, Northern Ireland, UK
  3. 3School of Nursing, Institute of Nursing and Health Research, University of Ulster, Newtownabbey, Northern Ireland, UK
  4. 4School of Nursing, Institute of Nursing and Health Research/All Ireland Institute of Hospice and Palliative Care, University of Ulster, Newtownabbey, Northern Ireland, UK
  5. 5School of Nursing, Institute of Nursing and Health Research, University of Ulster, Newtownabbey, Northern Ireland, UK
  1. Correspondence to Dr Dorry McLaughlin, School of Nursing and Midwifery, Queen's University, Room 327, Level 6, Medical Biology Centre, 97, Lisburn Road, Belfast, Northern Ireland BT9 7BL, UK; d.mclaughlin{at}qub.ac.uk

Abstract

Background and objectives Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Methods A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.

Results Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.

Conclusions This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

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  • Received 1 November 2013.
  • Revision received 7 January 2014.
  • Accepted 19 January 2014.
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