Improving Health for People Living With Heart Failure: Focus Group Study of Preconditions for Co-Production of Health and Care

Abstract

Background Co-production of health and care involving patients, families of patients, and professionals in care processes can create joint learning about how to meet patients’ needs. Although barriers and facilitators to co-production have been examined previously in various health care contexts, the preconditions in Swedish chronic cardiac care contexts are yet to be explored. This study is set in the health system of the Swedish region of Jönköping County and is part of system-wide efforts to promote better health for persons with heart failure (HF). Objective The objective of this study was to test the usefulness of the Capability, Opportunity, and Motivation Behavior (COM-B) model when assessing the barriers to and facilitators of co-production of health and care perceived by patients with HF, family members of patients with HF, and professionals in a Swedish chronic cardiac care context as a guide for subsequent initiatives. Methods Data collection involved 1 focus group interview (FGI) with patients with HF (n=5), 1 FGI with family members of patients with HF (n=5), 1 FGI with professionals in primary care (n=7), and 1 FGI with professionals in cardiac care (n=4). In addition, patients with HF kept diaries of their thoughts regarding co-production. Using a deductive approach to content analysis, underpinned by the COM-B model, barriers and facilitators were categorized into capabilities, opportunities, and motivations to co-produce health and care. Results The participants showed limited understanding of co-production as a practice. They appeared to view it as a privilege to be offered to patients on top of traditional care and rarely as an approach for improving health care processes. The interviews revealed the limited health literacy among patients and the struggle of professionals to convey health information to these patients. Co-production was considered to be more resource-intensive than traditional care. Different expectations of stakeholders’ roles were revealed: professionals expected older patients not to want to co-produce health and care, and all participants expected professionals to be in charge of health care services. The family members’ position involved trying to balance their desire to support their relatives with understanding when, how, and with whom to co-produce. Presumed benefits motivated stakeholders: co-production was recognized to motivate patients to improve self-care. However, the participants recognized that motivation to get involved in health and care decisions varies over time among stakeholders. Conclusions Co-production can be facilitated by the stakeholders’ motivation. However, varying levels of understanding of co-production, patients’ limited health literacy, unease with power sharing between patients and professionals, and resource constraints are barriers that need to be managed to promote co-produced care and better health for persons living with HF. Further research is warranted to explore how to co-produce health care services with patients with HF and how leaders can facilitate the inevitable cultural change it requires and represents.

Improving heart failure care with an Experience-Based Co-Design approach: what matters to persons with heart failure and their family members?

“…However, there are challenges to PWHF being equal partners to healthcare professionals. PWHF may experience a poor physical capability, making it difficult to cope with life, which can be a barrier to being engaged in healthcare services [ 2 ]. Furthermore, cognitive decline [ 3 ] and low health literacy (HL) among PWHF [ 1 , 4 – 9 ], may make it difficult for them to understand and engage in healthcare service activities.…”

Using stakeholders’ experiences to redesign health services for persons living with heart failure: a case study protocol in a Swedish cardiac care setting

“…The district’s hospital and PCCs serve an ageing population, with chronic heart disease being a major cause of morbidity and mortality. This context, with its long tradition of healthcare quality improvement activities,16 32–36 has an ambition to incorporate patients’ and family members’ involvement in care improvement initiatives as a part of routine care 37. Also, the health district and the region’s municipalities and university have agreed to collaborate in research and education.…”

“…Although the study context has a long tradition of healthcare improvements,16 32–36 structured involvement of patients, family members and citizens is not yet widespread. Therefore, in this particular context, both patients, family members and healthcare professionals, need to colearn how to take each other’s perspectives into consideration in healthcare quality improvement projects and research.…”

“…Clinical HF guidelines promote recognising PWHF as coproducers of their own care, for example, by inviting them to engage in monitoring and self-management of HF 1 2. However, the research from Suutari et al 16 implies that PWHF, their family members and professionals have limited understanding of patients being codesigners or coproducers of health and care as a practice and appear to view it as an ‘add-on’ to traditional care and rarely as an approach for improving healthcare processes. These results are in line with research by Holland Hart et al ,17 indicating that clinicians and the public view coproduction as ‘the patient’s involvement in decisions about their own care rather than involvement in the planning, delivery and improvement of the service as a whole’.…”

Exploring Co-Production in Residences with Special Services for Children and Adolescents with Intellectual Disability in Sweden

“…A semi-structured interview guide (Table 2) was designed for the focus group interviews. In accordance with Suutari (2021), the word ' co-production' was considered unclear, both semantically and as a previously unfamiliar concept in the Swedish context. To translate the concept of co-production into meaningful and operationalizable terms for the staff, the more commonly used concept of ' collaboration' was used in the interviews.…”