Defining good health and care from the perspective of persons with multimorbidity: results from a qualitative study of focus groups in eight European countries

Abstract

ObjectivesThe 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.MethodsIn 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.ResultsOverall, 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.ConclusionA 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.

Patient participation during primary health‐care encounters among adult patients with multimorbidity: A cross‐sectional study

“…Studies mapping the experiences of multimorbid patients have identified several difficulties associated with this condition, for example contradictory 32 or insufficient information about their conditions and treatment options, 27,28,32 and the lack of holistic care, guidance 28 and decision‐making support, 26 along with poor communication, 26‐28 coordination 26,33,34 and continuity of care 28,34 . In addition, the patient and HCP do not always share a common view about care and health outcome priorities 35,36 . The self‐management required for everyday tasks is burdensome for most multimorbid patients; as such, many 37 will need extensive support for motivation 25 and understanding their own health situation 26,28,32,37 .…”

Quality of care assessment for people with multimorbidity

“…The search retrieved 435 documents after removal of duplicates (Fig. ), and after eligibility screening, a total of 87 documents were finally included (Appendix ).…”

Comparing patients’ and other stakeholders’ preferences for outcomes of integrated care for multimorbidity: a discrete choice experiment in eight European countries

“…These focus groups were organised in 2016 in the countries participating in the SELFIE project. 15 As the participants of these focus groups frequently mentioned the importance of outcomes that went beyond the traditional health outcomes such as physical functioning, we included enjoyment of life, social relationships and participation and resilience to represent aspects of well-being and 'positive health'. 16 They also frequently mentioned negative experiences related to the single-disease focus of each provider, misaligned treatment goals and advices and fragmentation or duplication of care.…”