Maneuvering the care puzzle: Experiences of participation in care by frail older persons with significant care needs living at home

PURPOSE: Despite evidence that older persons want to be involved in care, little is known about how frail older people with significant care needs living at home experience participation in care provided by different stakeholders. This study investigates the experiences of participation in care by older people following their involvement in an intervention of a health care model called Focused Primary care (FPC). METHODS: Individual semi-structured interviews were conducted with 20 older persons in five municipalities in Sweden. RESULTS: The results show that older persons highlighted opportunities and limitations for participation on a personal level i.e., conditions for being involved in direct care and in relation to independence. Experiences of participation on organizational levels were reported to a lesser degree. This included being able to understand the organizational system underpinning care. The relational dimensions of caregiving were emphasized by the older persons as the most central aspects of caregiving in relation to participation. CONCLUSIONS: Primary care should involve older persons more directly in planning and execution of care on all levels. An ongoing connection with one specialized elderly team and a coordinating person in Primary care who safeguards relationships is important for providing participation in care for frail older persons with significant care needs living at home.