title: Perspectives of people with mild intellectual disabilities on care relationships at the end of life: A group interview study.
abstract: Care relationships are crucial in tailoring the end-of-life care of a person with intellectual disabilities (ID) to their needs. Yet, almost all studies on end-of-life care for people with ID have been conducted among caregivers. The views of people with ID about care relationships at the end of life have not been a specific focus of research.
  
  
  
  To explore relevant dimensions of the care relationships in end-of-life care from the perspectives of people with mild ID in the Netherlands.
  
  
  
  Group interviews were conducted using nominal group technique. Interviews were inductively analysed by two researchers.
  
  
  
  Seven groups participated (33 people). Inclusion criteria were as follows: having mild ID, being able to decide about participation and give informed consent, and not receiving end-of-life care. All groups were interviewed twice.
  
  
  
  Two dimensions of care relationships were found: (1) 'Ascertain, record and honour wishes' of the ill person. Adequately dealing with care wishes, 'last wishes' and funeral wishes was of central importance: 'it's about their life'. We found an emphasis on control that seemed to reflect the participants' experience that respecting autonomy does not always happen. (2) 'Being there': Ill people need people who are there for him or her, practically, as well as emotionally, socially and spiritually. Participants placed specific emphasis on providing positive experiences.
  
  
  
  The views of people with mild ID highlight the high demands which end-of-life care imposes on relational qualities of caregivers. This study shows the added value and potential of involving people with ID in studies on end-of-life care.
authors.affiliation: Netherlands Institute of Health Services Research (NIVEL), Utrecht, The Netherlands n.bekkema@nivel.nl.
authors.forename: Nienke
authors.initials: N
authors.lastname: Bekkema
authors.affiliation: Netherlands Institute of Health Services Research (NIVEL), Utrecht, The Netherlands.
authors.forename: Anke Je
authors.initials: AJ
authors.lastname: de Veer
authors.affiliation: Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Cees Mpm
authors.initials: CM
authors.lastname: Hertogh
authors.affiliation: Netherlands Institute of Health Services Research (NIVEL), Utrecht, The Netherlands Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, The Netherlands Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Anneke L
authors.initials: AL
authors.lastname: Francke
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001293:Attitude to Death; D017028:Caregivers / Q000523:psychology*; D006233:Persons with Disabilities / Q000523:psychology*; D005190:Family / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D006801:Humans; D008607:Intellectual Disability / Q000523:psychology*; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010358:Patient Participation / Q000523:psychology; D057240:Patient Preference / Q000523:psychology*; D026684:Personal Autonomy; D010817:Physician-Patient Relations; D036301:Qualitative Research; D013727:Terminal Care / Q000523:psychology*
keywords: Palliative care; family relations; focus groups; intellectual disability; professional–patient relations