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.

Promoting a sense of security in everyday life-A case study of patients and professionals moving towards co-production in an atrial fibrillation "learning café".

BACKGROUND: An improvement initiative sought to improve care for atrial fibrillation (AF) patients; many felt insecure about how to cope with AF. OBJECTIVE: To reveal AF patients' and professionals' experiences of pilot-testing a Learning Café group education programme, aimed at increasing the patients' sense of security in everyday life. DESIGN: Using an organizational case study design, we combined quantitative data (patients' sense of security) and qualitative data (project documentation; focus group interviews with five patients and five professionals) analysed using inductive qualitative content analysis. SETTING: AF patients and a multiprofessional team at a cardiac care unit in a Swedish district hospital. IMPROVEMENT ACTIVITIES: Two registered nurses invited AF patients and partners to four 2.5-hour Learning Café sessions. In the first session, they solicited participants' questions about life with AF. A physician, a registered nurse and a physiotherapist were invited to address these questions in the remaining sessions. RESULTS: AF patients reported gaining a greater sense of security in everyday life and anticipating a future shift from emergency care to planned care. Professionals reported enhanced professional development, learning more about person-centredness and gaining greater control of their own work situation. The organization gained knowledge about patient and family involvement. CONCLUSIONS: The Learning Café pilot test-exemplifying movement towards co-production through patient-professional collaboration-generated positive outcomes for patients (sense of security), professionals (work satisfaction; learning) and the organization (better care) in line with contemporary models for quality improvement and with Self-Determination Theory. This approach merits further testing and evaluation in other contexts.

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

INTRODUCTION: Clinical guidelines promote recognising persons with heart failure (referred to as PWHF) as coproducers of their own care. Coproduction of healthcare-involving PWHF, families and professionals in care processes-aims to promote the best possible health. Still, it is unclear how to coproduce heart failure (HF) care. This study explores whether and how Experience-Based Co-Design (EBCD) involving PWHF, family members and professionals can be undertaken online, in a Swedish cardiac care setting, to codesign improved experiences of HF care. METHODS AND ANALYSIS: In EBCD, stakeholders' experiences are solicited to redesign healthcare services. First, we will undertake a thematic analysis of field notes from consultations and filmed/audio-recorded interviews with PWHF (n=10-12). This analysis will identify 'touchpoints' (emotionally positive/negative events that shape overall service experiences), edited into a 'trigger film'. Next, a thematic analysis of family members' (n=10-12) and professionals' (n=10-12) interviews will identify key themes mirroring their experiences. Separate feedback events with each stakeholder group will confirm identified touchpoints and key themes and identify areas for HF care improvement. At a joint event, prompted by the 'trigger film', stakeholders will agree on one area for HF care improvement. A team including PWHF, family members and professionals, led by an improvement adviser, will then plan, design, implement and evaluate an improvement activity addressing the identified problem area. A deductive thematic analysis of field notes, project documentation and stakeholder focus group interviews, underpinned by MUSIQ, will identify how organisational conditions influence the process. Quantitative measurements, describing the results of the improvement activity, will be integrated with qualitative data to strengthen the case. To reduce resource intensity, we will use online tools during the process. ETHICS AND DISSEMINATION: The Swedish Ethical Review Authority approved the study in May 2021. The results will be disseminated through seminars, conference presentations and publications.

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

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.

Salmonella enteritidis causing myocarditis in a previously healthy 22-year-old male.

Myocarditis is mostly caused by viral infections and rarely caused by bacterial pathogens, especially in immunocompetent individuals. Bacterial myocarditis due to Salmonella is rare, especially in countries with improved sanitation that minimize contamination of Salmonella typhi serotypes. We here present a case of a previous healthy 22-year-old male that came to the emergency room with chest pain. His symptoms occurred after a period of profuse diarrhea, fever and hematochezia. Magnetic resonance imaging confirmed the diagnosis of myocarditis. Stool culture was positive for Salmonella enteritidis. Myocarditis due to Salmonella is rare but may still occur in western countries. The inter-individual response to the pathogens and its virulence mechanisms and male gender is factors for developing myocarditis. We here add to the numbers of cases with myocarditis due to S. enteritidis. A higher suspicion and more frequent ECG and troponin testing might result in an increase of patients with subclinical myocarditis.