Invisible Agency in the Search for Healing: Patient and Family Roles in the Care of Hard‐to‐Heal Wounds in Primary Healthcare

ABSTRACT

This study aimed to explore how persons living with a hard-to-heal wound and their family members experience care. The inclusion criteria for patients were wounds that had persisted for more than 6 weeks or hard-to-heal wounds that had recently healed. The study included 16 participants (13 patients and 3 family members) from primary healthcare services in Örebro County, Sweden. The interview data were transcribed and analysed using reflexive thematic analysis. One overarching theme was generated: Navigating an uncertain path towards healing, along with three subthemes: (1) Striving to be an active agent, (2) Being part of collaboration efforts and (3) Being a bystander in the search for the right treatment. Together, these themes illustrate how patients and family members engaged in an uncertain care process as they sought to understand the condition and manage care in everyday life. These everyday efforts reflected forms of invisible agency, as participants did not always recognise them as meaningful contributions to wound care. The findings highlight the importance of person-centred approaches that recognise and value patients' and family members' everyday contributions to wound care and support self-management through partnerships among patients, family members and HCPs.