Whom Do I Trust to Represent Me? Long-Term Care Resident and Family Perspectives on Legitimate Representation

Public engagement in long-term care policy making in Canada has primarily focused on "intermediary agents" who speak on behalf of long-term care (LTC) residents and their family caregivers. Yet the legitimacy of these intermediaries, as perceived by those they represent, has gone largely unexplored. This study examines LTC resident and family perspectives on who can legitimately represent them in LTC policy making.

We used an interpretive description design, drawing on semi-structured interviews with LTC residents and family caregivers in Ontario, Canada. Data were analyzed using inductive thematic analysis.

Eighteen interviews were conducted with 19 participants. Three key characteristics of legitimate representatives were identified: (1) willingness to act in the best interests of residents and families, (2) having the necessary skills and capacity to participate in LTC policy making and (3) engaging directly with residents and families.

Governments and civil society organizations seeking to establish and maintain legitimacy in the eyes of LTC residents and family members can pursue this goal by supporting intermediaries who mirror the identities or experiences of those they represent, who are dedicated to serving their interests and who routinely and directly engage with them to understand the realities of LTC.