Just a story? Leadership, lived experience and integrated care

Abstract

Background: Integrated care is based around values of involvement and shared decision-making, but these are not often reflected within planning and implementation. Barriers include continued emphasis on professional and managerial perspectives, skills gaps on how best to engage people and communities and insufficient investment in involvement infrastructure. Despite such challenges, people with lived experience have still led changes in policy and services.

Design: Qualitative study involving 25 participants with lived experience from 12 countries. Participants shared their background stories and engaged in semistructured interviews relating to leadership identity, experience of influencing and personal learning. Transcripts were analysed through a framework approach informed by narrative principles.

Results: Participants were motivated by their own experiences and a wish to improve care for future individuals and communities. Sharing their story was often the entry point for such influencing. Participants gained skills and confidence in story telling despite a lack of support and development. Many felt comfortable being described as a leader while others rejected this identity and preferred a different title. No common alternative term to leader was identified. Influencing services required considerable personal cost but also led to new networks, skills development and satisfaction when change was achieved.

Discussion: Leadership within integrated care is often awarded to those with structural power related to management or clinical seniority. People with lived experience are though uniquely placed to identify what needs to change and can develop inspiring visions based around their personal stories. Claiming identity as leader can be challenging due to traditional notions of who is eligible to lead and unwillingness by professionals and managers to grant such identity.

Conclusions: People with lived experience should be recognised as leaders of integrated care and have access to developmental opportunities and practical support to strengthen their skills, including that of storytelling. PATIENT AND PUBLIC CONTRIBUTION: The research was instigated on the request of a community advisory board of people with lived experience who shaped its design, contributed to the analysis and informed the conclusions and implications.

Keywords: citizen leaders; integrated care; leadership; stories; storytelling.