How does it feel to be a problem? Patients’ experiences of self-management support in New Zealand and Canada

Background: The impact of long-term conditions is the “healthcare equivalent to climate change.” People with long-term conditions often feel they are a problem, a burden to themselves, their family and friends. Providers struggle to support patients to self-manage. The Practical Reviews in Self-Management Support (PRISMS) taxonomy lists what provider actions might support patient self-management. Objective: To offer providers advice on how to support patient self-management. Design: Semi-structured interviews with 40 patient-participants. Setting and participants: Three case studies of primary health-care organizations in New Zealand and Canada serving diverse populations. Participants were older adults with long-term conditions who needed support to live in the community. Main outcome measures: Qualitative description to classify patient narratives of self-management support according to the PRISMS taxonomy with thematic analysis to explore how support was acceptable and effective. Results: Patients identified a relationship-in-action as the mechanism, the how by which providers supported them to self-manage. When providers acted upon knowledge of patient lives and priorities, these patients were often willing to try activities or medications they had resisted in the past. Effective self-management support saw PRISMS components delivered in patient-specific combinations by individual providers or teams. Discussion and conclusions: Providers who establish relationships with patients can support them to self-manage and improve health outcomes. Delivery of taxonomy components, in the absence of a relationship, is unlikely to be either acceptable or effective. Providers need to be aware that social determinants of health can constrain patients’ options to self-manage.