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Defining good health and care from the perspective of persons with multimorbidity: results from a qualitative study of focus groups in eight European countries
  1. Fenna R M Leijten1,
  2. Maaike Hoedemakers1,
  3. Verena Struckmann2,
  4. Markus Kraus3,
  5. Sudeh Cheraghi-Sohi4,
  6. Antal Zemplényi5,6,
  7. Rune Ervik7,
  8. Claudia Vallvé8,
  9. Mirjana Huiĉ9,
  10. Thomas Czypionka3,
  11. Melinde Boland1,
  12. Maureen P M H Rutten-van Mölken1,10
  13. on behalf of the SELFIE consortium
  1. 1 Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands
  2. 2 Department of Health Care Management, Berlin University of Technology, Berlin, Germany
  3. 3 Institute for Advanced Studies, Vienna, Austria
  4. 4 NIHR Greater Manchester Patient Safety Translational Research Centre, University of Manchester, Manchester, UK
  5. 5 Syreon Research Institute, Budapest, Hungary
  6. 6 Healthcare Financial Management Department, University of Pécs, Pécs, Hungary
  7. 7 Uni Research Rokkan Centre, Bergen, Norway
  8. 8 Consorci Institut D’Investigacions Biomediques August Pi i Sunyer (IDIBAPS), Barcelona, Spain
  9. 9 Agency for Quality and Accreditation in Health Care and Social Welfare, Zagreb, Croatia
  10. 10 Institute for Medical Technology Assessment, Erasmus University, Rotterdam, The Netherlands
  1. Correspondence to Professor Maureen P M H Rutten-van Mölken; m.rutten{at}eshpm.eur.nl

Abstract

Objectives The prevalence of multimorbidity is increasing in many Western countries. Persons with multimorbidity often experience a lack of alignment in the care that multiple health and social care organisations provide. As a response, integrated care programmes are appearing. It is a challenge to evaluate these and to choose appropriate outcome measures. Focus groups were held with persons with multimorbidity in eight European countries to better understand what good health and a good care process mean to them and to identify what they find most important in each.

Methods In 2016, eight focus groups were organised with persons with multimorbidity in: Austria, Croatia, Germany, Hungary, the Netherlands, Norway, Spain and the UK (total n=58). Each focus group followed the same two-part procedure: (1) defining (A) good health and well-being and (B) a good care process, and (2) group discussion on prioritising the most important concepts derived from part one and from a list extracted from the literature. Inductive and deductive analyses were done.

Results Overall, the participants in all focus groups concentrated more on the care process than on health. Persons with multimorbidity defined good health as being able to conduct and plan normal daily activities, having meaningful social relationships and accepting the current situation. Absence of shame, fear and/or stigma, being able to enjoy life and overall psychological well-being were also important facets of good health. Being approached holistically by care professionals was said to be vital to a good care process. Continuity of care and trusting professionals were also described as important. Across countries, little variation in health definitions were found, but variation in defining a good care process was seen.

Conclusion A variety of health outcomes that entail well-being, social and psychological facets and especially experience with care outcomes should be included when evaluating integrated care programmes for persons with multimorbidity.

  • preventive medicine
  • qualitative research
  • person-centered
  • multi-morbidity
  • evaluation outcomes
  • integrated care

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

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Footnotes

  • Contributors FL, MB, and MPMHR-vM drafted the focus group procedure document and analysis instruction document and organised and were present at the Dutch focus group. VS, MK, SC-S, AZ, RE, CV, MiH and TC were involved in the translation and organisation of the focus groups in their respective countries and in the analysis of their focus group and reporting thereof. FL, MB and MPMHR-vM analysed the Dutch group; FL, MaH, MB and MPMHR-vM analysed all focus group reports and conducted the overarching analyses. FL, MaH and MPMHR-vM drafted the manuscript and the revision; all coauthors critically reviewed and contributed to the manuscript and revision, for example, by appraising themes and providing fitting quotes.

  • Funding The SELFIE project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement no. 634288.

  • Disclaimer The content of this publication reflects only the SELFIE groups’ views and the European Commission is not liable for any use that may be made of the information contained herein.

  • Competing interests None declared.

  • Patient consent Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement The recordings and available verbatim transcripts will not be made available to protect the anonymity of participants. Upon request to the corresponding author, we may consider in collaboration with the respective SELFIE-partner, whether a country-specific focus group report can be shared. Other findings from the overarching SELFIE study can be found on the SELFIE website (www.selfie2020.eu).

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