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

Abstract

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.

Use of Human-Centered Design Methodology to Develop a Digital Toolkit to Optimize Heart Failure Guideline-Directed Medical Therapy

“…27,28 The patients also discussed the importance of both family and peer social support; similar to other research, they indicated how critical family support was but how social support networks were often lacking. 27,28 The patients and caregiver felt that virtual support groups or recordings of other patients should be leveraged to build comradery, provide an opportunity to ask questions, and learn about others' experiences with HF. The patients and caregiver also spent much of the conversation discussing the challenges in managing dietary restrictions, both for HF but also in tandem with those of other chronic conditions.…”

“…The patients also discussed how important it was for them to regain their independence and quality of life, but as a motivator to GDMT uptake. Other research has noted that patients with HF and family members often struggle with poor quality of life and that patients have a difficult time with the loss of independence and need to rely on others 27,28 . The patients also discussed the importance of both family and peer social support; similar to other research, they indicated how critical family support was but how social support networks were often lacking 27,28 .…”

“…Other research has noted that patients with HF and family members often struggle with poor quality of life and that patients have a difficult time with the loss of independence and need to rely on others 27,28 . The patients also discussed the importance of both family and peer social support; similar to other research, they indicated how critical family support was but how social support networks were often lacking 27,28 . The patients and caregiver felt that virtual support groups or recordings of other patients should be leveraged to build comradery, provide an opportunity to ask questions, and learn about others' experiences with HF.…”

Pilot Testing Educational Videos for Black Caregivers Receiving Home Hospice Care

“…Four videos were developed based on the experience-based co-design model, an approach that engages caregivers and health care staff in partnership to develop and improve care 14 . Using this model, which has been adopted in other care settings, 15-17 the research team brought Black family caregivers who received hospice care and hospice staff together to share their experiences and identify common priorities. The first phase in the development of the story-based video topics consisted of conducting small group discussions with bereaved Black caregivers who received hospice care 9 .…”