title: The perceived impact of public involvement in palliative care in a provincial palliative care network in the Netherlands: a qualitative study.
abstract: OBJECTIVE
  Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care.
  
  
  METHODS
  The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals.
  
  
  METHODS
  This study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein's involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis.
  
  
  CONCLUSIONS
  The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process.
authors.affiliation: Research Centre Autonomy and Participation for Persons with a Chronic Illness, Zuyd University of Applied Sciences, Heerlen, The Netherlands.
authors.forename: Frederike
authors.initials: F
authors.lastname: Haarsma
authors.affiliation: Research Centre Autonomy and Participation for Persons with a Chronic Illness, Zuyd University of Applied Sciences, Heerlen, The Netherlands.|Centre of Expertise in Innovative Care and Technology, Heerlen, The Netherlands.|Care and Public Health Research Institute, Maastricht University, Maastricht, The Netherlands.
authors.forename: Albine
authors.initials: A
authors.lastname: Moser
authors.affiliation: Sounding Board Groups Palliative Care Networks, Limburg, The Netherlands.
authors.forename: Manon
authors.initials: M
authors.lastname: Beckers
authors.affiliation: Sounding Board Groups Palliative Care Networks, Limburg, The Netherlands.
authors.forename: Henk
authors.initials: H
authors.lastname: van Rijswijk
authors.affiliation: Care Consumers, Limburg, The Netherlands.|House of Care, Sittard, The Netherlands.
authors.forename: Esther
authors.initials: E
authors.lastname: Stoffers
authors.affiliation: Research Centre Autonomy and Participation for Persons with a Chronic Illness, Zuyd University of Applied Sciences, Heerlen, The Netherlands.|Centre of Expertise in Innovative Care and Technology, Heerlen, The Netherlands.|Care and Public Health Research Institute, Maastricht University, Maastricht, The Netherlands.
authors.forename: Anna
authors.initials: A
authors.lastname: Beurskens
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003256:Community Participation; D003657:Decision Making; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010166:Palliative Care; D010344:Patient Advocacy; D011050:Policy Making; D036301:Qualitative Research
keywords: advocacy; barriers; decision-making; facilitators; impact; palliative care; public involvement