Factors impacting long-term care and retirement home populations' participation in immunity research: a qualitative study using the framework method.

BACKGROUND

The COVID-19 pandemic had a severe impact on Long-Term Care Homes (LTCH) and Retirement Homes (RH) in Canada. Urgent research was required to understand characteristics of COVID-19 transmission and immunity among this at-risk population, yet the pressures of the pandemic impacted LTCH and RH populations’ capacity to participate in research. We describe LTCH and RH populations’ experiences in and motivations to participating in a COVID-19 immunity study, and explored barriers and facilitators to conducting immunity research within these settings.

METHODS

We conducted semi-structured interviews with LTCH/RH staff, their household members, and residents’ caregivers in Ontario, Canada. Interviews were rooted in the Theoretical Domains Framework (TDF). Twenty-percent of data were double coded; the remaining transcripts were single coded and charted into a matrix to identify themes. The TDF was used to categorize factors impacting study participation. These factors were mapped to the Capabilities-Opportunities-Motivation and Behaviour (COM-B) model to recommend strategies to engage LTCH/RH populations in future research.

RESULTS

Twenty-four participants (12 staff and staff household members, 12 caregivers) completed an interview. Participants were motivated by a desire to understand their own immunity status and contribute to COVID-19 scientific advancements, particularly to protect themselves, their colleagues and loved ones in LTCH/RH. Trust in the study team, researchers’ demeanor, positive experience of past participants, convenience of data collection, and home leaders’ optimism for the research were facilitators to participation. Challenges included discomfort with sample collection, concerns about data privacy and confidentiality, challenges navigating lengthy study documentation, and long wait times to receive study findings. Factors impacting participation corresponded to 9 TDF domains. Barriers related to motivation were most commonly cited, followed by barriers related to opportunity and motivation to study participation.

CONCLUSIONS

This study provides valuable insights into the experiences of LTCH/RH populations participating in immunity research during the COVID-19 pandemic. Using a theoretically-rooted approach, we recommend the use of multi-pronged strategies to enhance research engagement among this population.