Heart failure patients' descriptions of participation in structured home care

BACKGROUND: To strengthen the patient's position in health care, patient participation has been decreed in policy documents and legalizations. For patients suffering from heart failure, self-care is an important part of disease management and participation is crucial to succeed with this. OBJECTIVE: To examine how heart failure patients receiving structured home care described participation in the care. DESIGN: Qualitative study. SETTING AND PARTICIPANTS: Thirteen men and six women, aged between 63 and 90 years, were interviewed. The informants received structured home care at four home care units in Sweden. The interviews were analysed using qualitative content analysis. RESULTS: Five categories with associated subcategories describing participation in care were identified: communication between patients and health-care professionals (HCPs) including time and space for dialogue and exchange of care-related information, accessibility to care through awareness of the plan for home visits or feasibility to initiate home visits, active involvement in care by engaging in self-care and collaboration with HCPs, trustful relation with HCPs, with confidence in competence and individually adapted care, options for decision making, by making decisions or entrusting decisions. CONCLUSIONS: Patient participation could be strengthened through structured home care. Participation was facilitated when there was a balance between the patient's own preferences to influence care and the health-care professional's actions and values and the organization of care. Barriers to participation could depend on the health-care organization, lack of continuity and confidence in HCPs.