title: Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities.
abstract: OBJECTIVE
  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.
authors.affiliation: School of Nursing and Midwifery, Queen's University, Belfast, Northern Ireland, UK School of Nursing, Institute of Nursing and Health Research, University of Ulster, Newtownabbey, Northern Ireland, UK.
authors.forename: Dorry
authors.initials: D
authors.lastname: McLaughlin
authors.affiliation: School of Nursing, Institute of Nursing and Health Research, University of Ulster, Newtownabbey, Northern Ireland, UK.
authors.forename: Owen
authors.initials: O
authors.lastname: Barr
authors.affiliation: School of Nursing, Institute of Nursing and Health Research/All Ireland Institute of Hospice and Palliative Care, University of Ulster, Newtownabbey, Northern Ireland, UK.
authors.forename: Sonja
authors.initials: S
authors.lastname: McIlfatrick
authors.affiliation: School of Nursing, Institute of Nursing and Health Research, University of Ulster, Newtownabbey, Northern Ireland, UK.
authors.forename: Roy
authors.initials: R
authors.lastname: McConkey
mesh_terms: D000328:Adult; D017028:Caregivers / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel / Q000193:education / Q000523:psychology; D006801:Humans; D007859:Learning Disabilities / Q000523:psychology* / Q000628:therapy; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology*; D065126:Palliative Medicine / Q000193:education*; D019989:Persons with Intellectual Disabilities / Q000523:psychology*; D036301:Qualitative Research; D013727:Terminal Care / Q000379:methods / Q000523:psychology
keywords: Education; Family Carers; Learning Disability; Palliative Care