Raise Your Voice: How to Increase the Effectiveness of Resident and Family Councils in Long-Term Care Homes.

Abstract

The devastating impacts of the COVID-19 pandemic highlighted the missing voices of families and residents in long-term care (LTC) decision-making and policy processes. Family and resident councils constitute one method of raising these voices, but there is currently a gap in evidence of how to promote the effectiveness of these councils. We conducted five focus groups and two interviews with LTC home leaders, residents, family members, and advocates in British Columbia using a participatory approach integrating knowledge-users throughout the research process. Using a framework analysis, we found modifiable (communication, structure, recruitment/engagement, council leadership, culture/attitudes, and resources/supports) and non-modifiable factors (medical complexity of residents and short lengths of stay) affecting council effectiveness. We discuss strategies implemented by knowledge-users to address modifiable effectiveness factors and construct a preliminary tool (a 35-question survey) that operationalizes and identifies areas that can increase council effectiveness in practice to ensure that their voices are heard in LTC decision making.