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

BACKGROUND: Heart failure is a chronic heart condition. Persons with heart failure often have limited physical capability, cognitive impairments, and low health literacy. These challenges can be barriers to healthcare service co-design with family members and professionals. Experience-Based Co-Design is a participatory healthcare quality improvement approach drawing on patients’, family members’ and professionals’ experiences to improve healthcare. The overall aim of this study was to use Experience-Based Co-Design to identify experiences of heart failure and its care in a Swedish cardiac care setting, and to understand how these experiences can translate into heart failure care improvements for persons with heart failure and their families. METHODS: A convenience sample of 17 persons with heart failure and four family members participated in this single case study as a part of an improvement initiative within cardiac care. In line with Experienced-Based Co-Design methodology, field notes from observations of healthcare consultations, individual interviews and meeting minutes from stakeholders’ feedback events, were used to gather participants’ experiences of heart failure and its care. Reflexive thematic analysis was used to develop themes from data. RESULTS: Twelve service touchpoints, organized within five overarching themes emerged. The themes told a story about persons with heart failure and family members struggling in everyday life due to a poor quality of life, lack of support networks, and difficulties understanding and applying information about heart failure and its care. To be recognized by professionals was reported to be a key to good quality care. Opportunities to be involved in healthcare varied, Further, participants’ experiences translated into proposed changes to heart failure care such as improved information about heart failure, continuity of care, improved relations, and communication, and being invited to be involved in healthcare. CONCLUSIONS: Our study findings offer knowledge about experiences of life with heart failure and its care, translated into heart failure service touchpoints. Further research is warranted to explore how these touchpoints can be addressed to improve life and care for persons with heart failure and other chronic conditions. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-023-09306-w.