Participatory Quality Improvement of Complex Relationships in Long-term Care: balancing self-management support and a caring approach

Runtime: April 2016 - April 2018
Client: ZonMw

Project description

Assisted-living services for people with severe mental illness, intellectual disabilities and the elderly are increasingly organized within the community. This increases the complexity of the care relationship as providers have to foster self-determination and an independent lifestyle for service users on the one hand and care for these often vulnerable individuals on the other. Professionals, service users and family members thus face dilemmas between different views on what ‘good care’ is. Quality improvement work in assisted living services becomes more complex when ‘good care’ is not straightforward.

Quality improvement methods that encompass storytelling seem particularly fit for addressing the complexity of the care relationship. This is specifically so when they entail a process of co-designing quality improvement actions that emerge from sharing experiences between different stakeholders. Experience based co-design (EBCD) is one method that has led to quality improvement informed by service users’, providers and family member’s experiences. However, it has not been adopted to the context of assisted living services and dealing with dilemmas between different ideas on good quality care.

To adjust EBCD to the context of assisted living services we conducted a literature review to gain insight into the dilemmas in the care relationship. These dilemmas are further explored through ethnographic fieldwork (semi-structured interviews, observations and focus groups) in three teams working in assisted living services for people with severe mental illness, intellectual disability and elderly. In collaboration with a community theatre group, short films are made based on these dilemmas. These films are the input for dialogue about the dilemmas in the care relationship and co-designing quality improvement. This method is evaluated and further adjusted in three other care teams. Furthermore, we conduct research into how the instrument can be disseminated across health care organizations and how it can be used in decision-making on the national level (e.g. guideline development, supervision).


ESHPM: Marjolijn Heerings, Hester van de Bovenkamp, Roland Bal, Hogeschool Rotterdam: Mieke Cardol , Zorgbelang Zuid Holland: Huib Hoogendijk, Marielle van Esch


  • Poster presentation on dilemma’s in care for people with Serious Mental Illness, October 3th 2017, ISQUA
  • Participation and presentation in the workshop ‘Reconfiguring Care Infrastructures: Austerity and Innovation in European Welfare Services’, November 15th 2017, University of Sussex
  • Presentation on quality improvement in assisted living services for people with intellectual disabilities, December 2nd 2017, International Disability Studies Conference
  • Organization of invitational conference on experience based codesign, March 14th 2018, ESHPM
  • Presentation on adjusting experience based codesign to the context of assisted living services for people with Serious Mental Illness or Intellectual Disabilities, June 23th 2018, EHMA