title: Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: a mixed methods study.
abstract: BACKGROUND
  The lack of access to good quality palliative care for people with intellectual disabilities is highlighted in the international literature. In response, more partnership practice in end-of-life care is proposed.
  
  
  OBJECTIVE
  This study aimed to develop a best practice model to guide and promote partnership practice between specialist palliative care and intellectual disability services.
  
  
  METHODS
  A mixed methods research design involving two phases was used, underpinned by a conceptual model for partnership practice.
  
  
  METHODS
  Phase 1 involved scoping end-of-life care to people with intellectual disability, based on self-completed questionnaires. In all, 47 of 66 (71.2%) services responded. In Phase 2, semi-structured interviews were undertaken with a purposive sample recruited of 30 health and social care professionals working in intellectual disability and palliative care services, who had provided palliative care to someone with intellectual disability. For both phases, data were collected from primary and secondary care in one region of the United Kingdom.
  
  
  RESULTS
  In Phase 1, examples of good practice were apparent. However, partnership practice was infrequent and unmet educational needs were identified. Four themes emerged from the interviews in Phase 2: challenges and issues in end-of-life care, sharing and learning, supporting and empowering and partnership in practice.
  
  
  CONCLUSIONS
  Joint working and learning between intellectual disability and specialist palliative care were seen as key and fundamental. A framework for partnership practice between both services has been developed which could have international applicability and should be explored with other services in end-of-life care.
authors.affiliation: School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK d.mclaughlin@qub.ac.uk.
authors.forename: Dorry
authors.initials: D
authors.lastname: McLaughlin
authors.affiliation: Institute of Nursing and Health Research, School of Nursing, University of Ulster, Newtownabbey, UK.
authors.forename: Owen
authors.initials: O
authors.lastname: Barr
authors.affiliation: Institute of Nursing and Health Research, School of Nursing, University of Ulster, Newtownabbey, UK All Ireland Institute of Hospice and Palliative Care, Dublin, Ireland.
authors.forename: Sonja
authors.initials: S
authors.lastname: McIlfatrick
authors.affiliation: Institute of Nursing and Health Research, School of Nursing, University of Ulster, Newtownabbey, UK.
authors.forename: Roy
authors.initials: R
authors.lastname: McConkey
mesh_terms: D000328:Adult; D003299:Cooperative Behavior; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D008607:Intellectual Disability / Q000628:therapy*; D007400:Interprofessional Relations; D008297:Male; D008875:Middle Aged; D008962:Models, Theoretical; D010166:Palliative Care / Q000458:organization & administration*; D017410:Practice Guidelines as Topic; D011795:Surveys and Questionnaires
keywords: Partnership practice; intellectual disability; interview; palliative care; questionnaires