What is important to people with multimorbidity and their caregivers? Identifying attributes of person centred primary health care from the user perspective

Abstract

Introduction: Health systems worldwide are striving to provide care that is ‘person centred’—aligned with the needs and values of those receiving it. Partnerships and linkages between care settings such as primary care and the community sector (i.e., community based primary health care) has the goal of enabling better care and outcomes for people. It is unclear; however, if within these models, patients and caregivers perceive their care to be person-centered. In this study we capture what matters most to people with complex care needs and their caregivers (i.e., outcomes of importance) and second, we outline the conditions and activities associated with these outcomes. Methods: This is a qualitative descriptive study entailing one-to-one interviews with older adults with complex care needs receiving CBPHC in Ontario, Quebec and New Zealand and caregivers of these types of patients. The data were analyzed using inductive and deductive approaches by four researchers. Core categories were identified from the interviews, each representing an outcome of importance. Results: The majority of patients were female, 65+, with an average of 5 health conditions. A proportion spoke English as their second language. The majority of caregivers were female, a family member or partner of the patient and living in the same household. The outcomes of importance were: feeling heard, appreciated and comfortable; having someone to count on; understanding how to manage health and what to expect; being independent; feeling safe; and easily accessing health and social care. There were a number of activities associated with each outcome including (and not limited to): being treated like a friend; having the contact information of a dedicated and responsive provider; being given clear explanations of different treatment options and why these treatment options were being recommended; having the opportunity to partake in meaningful hobbies; having homes adapted to support physical limitations; and being accompanied to activities (ranging from doctors’ appointments to grocery shopping). Discussion: Through a large international collection of interviews of culturally diverse patients with multi-morbidity and their caregivers, we outline what person centered care means to people as well as specific activities that support these outcomes. Conclusion (w/ key findings): The importance of comfortable and reliable relationships, being independent, having access to social care resources and the trade-offs that patients and caregivers make as their needs change need to be considered as health care systems seek to better coordinate and integrate care for vulnerable populations and their families. Lessons Learned: Key attributes of good care extend beyond the management of disease. While we focused on the experience of patients and caregivers receiving CBPHC, their experiences extended to other sectors and providers because not all care was available within the models studied. Limitations: We did not conduct a comparative analysis of attributes (e.g., ethnicities, geographies, etc.) which would help to answer important implementation questions including, what works for whom and in what conditions? Suggestions for Future Research: Examining how key attributes vary by sub-groups will provide insight into how to further tailor models of community base d primary health care.

Keywords

• patient experience
• caregiver
• qualitative
• primary care
• integration