Nursing home (NH) residents leading their own care planning is a key feature of the emerging person-directed culture of long-term care. The U.S.—like some European, Scandinavian, and Pacific Rim nations—supports NH residents to direct their own care through policy, specifically identifying residents “as the locus of control” in care planning and delivery. In alignment with this shift toward a person-directed culture of care, we sought to understand how NH residents can become the leaders of their own care planning. Using the Complexity Theory-based Adaptive Leadership Framework as a conceptual guide, we conducted a two-part study of PDCP: (1) a scoping review of the literature on individuals’ involvement in care planning, widely inclusive of different demographic populations and care settings; and (2) a two-part series of exploratory and confirmatory engagement sessions about care planning with residents, families, and staff (24 sessions, 67 unique participants) in two North Carolina NHs. Using a coding scheme informed by the Adaptive Leadership Framework, our multi-disciplinary team systematically analyzed the literature and engagement session transcripts, identifying two separate sets of themes. We have now cross-validated and integrated these into one set of themes. The integrated themes highlight key aspects of engaging individuals in their own care planning, as well as adaptive and technical challenges to such engagement. Engagement session findings expanded upon some findings from the scoping review. The following themes were identified and substantiated: essential elements of PDCP, engagement across multiple levels, formal/informal PDCP, follow-through, and barriers and outcomes of PDCP.
