title: 'From activating towards caring': shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians.
abstract: BACKGROUND
  Professionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people with ID. This paper describes the shifts in care approaches and attitudes that relatives and professionals perceive as the death of a person with ID approaches, as well as the values underlying these shifts.
  
  
  METHODS
  A qualitative design was used to reconstruct the cases of twelve recently deceased people with ID. Relatives and professionals who were closest to the person at the end of their life were interviewed. Interviews were transcribed verbatim and data were analyzed inductively, using elements of thematic analysis.
  
  
  RESULTS
  Five shifts were found: 1) adapting to a new strategy of comforting care, taking over tasks and symptom relief, 2) interweaving of emotional and professional involvement, 3) stronger reliance on the joint interpretation of signals expressing distress and pain, 4) magnified feeling of responsibility in medical decisions, 5) intensified caring relationship between 'two families': relatives and care staff. Six relational values were behind these shifts: 'being there' for the person with ID, 'being responsive' to the person's needs, 'reflection' on their own emotions and caring relationships, 'attentiveness' to the ID person's wishes and expressions of distress, 'responsibility' for taking joint decisions in the best interests of the person, and 'openness to cooperation and sharing' the care with others.
  
  
  CONCLUSIONS
  End-of-life care for people with ID involves curtailing expectations of participation and skill acquirement, and an increase in teamwork featuring intensified comforting care, symptom management and medical decision making. Three caring relationships need to be fostered: the relationship with the person with ID, relationships among professionals and the relationship between relatives and professionals. ID care services should invest particularly in the emotional support and expertise level of care staff, and in the collaboration between relatives and professionals.
authors.affiliation: NIVEL, Netherlands Institute of Health Services Research, P.O. Box 1568, 3500 BN, Utrecht, The Netherlands. n.bekkema@nivel.nl.
authors.forename: Nienke
authors.initials: N
authors.lastname: Bekkema
authors.affiliation: NIVEL, Netherlands Institute of Health Services Research, P.O. Box 1568, 3500 BN, Utrecht, The Netherlands. a.deveer@nivel.nl.
authors.forename: Anke J E
authors.initials: AJ
authors.lastname: de Veer
authors.affiliation: Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, P.O. Box 7057, 1007 MB, Amsterdam, The Netherlands. cmpm.hertogh@vumc.nl.|Expertise Center for Palliative Care Amsterdam, VU University Medical Center, Amsterdam, The Netherlands. cmpm.hertogh@vumc.nl.
authors.forename: Cees M P M
authors.initials: CM
authors.lastname: Hertogh
authors.affiliation: NIVEL, Netherlands Institute of Health Services Research, P.O. Box 1568, 3500 BN, Utrecht, The Netherlands. a.francke@nivel.nl.|Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, P.O. Box 7057, Amsterdam, 1007 MB, The Netherlands. a.francke@nivel.nl.|Expertise Center for Palliative Care Amsterdam, VU University Medical Center, Amsterdam, The Netherlands. a.francke@nivel.nl.
authors.forename: Anneke L
authors.initials: AL
authors.lastname: Francke
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D003142:Communication; D003299:Cooperative Behavior; D003657:Decision Making; D004645:Empathy; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008607:Intellectual Disability / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D010820:Physicians / Q000523:psychology*; D011368:Professional-Family Relations; D036301:Qualitative Research; D012189:Retrospective Studies; D013315:Stress, Psychological / Q000523:psychology; D013727:Terminal Care / Q000523:psychology*; D055815:Young Adult