Meaningful Engagement of Older Adults in Long-Term Care: A Call for Action

Long-term care (LTC) has reached a critical time due to the demographic shift in our aging population. As the baby-boom generation (i.e., people born between 1945 and 1965) retires (Gibbard, 2017) and as older adults outnumber children under 14 years of age (Statistics Canada, 2016), attention to LTC has never been more urgent. This is because the demographic shift in society is associated with a significant increase in demand for LTC (Gibbard, 2017). LTC homes are complex adaptive systems (Anderson et al., 2003) in which change and quality improvement occur at the microsystem level (i.e., care unit) (Nelson et al., 2002). So, how can we effectively improve quality of care at the care unit level? While there is an agreement that engaging older adults (i.e., residents) of LTC homes and their caregivers (e.g., family, friends) in meaningful ways is key to providing high-quality person-centered care, there seems to be lack of clarity on what constitutes meaningful patient engagement (Manafo et al., 2018). In this opinion editorial, I will briefly explore the meaning of patient engagement in LTC and provide suggestions for future research directions.

Health Quality Ontario (2016) defines patient engagement as involving patients, family and other informal caregivers, and health-care professionals in active collaboration to improve the quality of care. In patient-oriented research, patients (i.e., individuals with personal experience of a health issue and informal caregivers) are actively engaged as partners in the research process to improve health outcomes and the health-care system (Canadian Institutes of Health Research [CIHR], 2014). Several frameworks exist for patient and public involvement in research and have been summarized in the literature (Greenhalgh et al., 2019). In Canada, the CIHR’s Strategy for Patient-Oriented Research (SPOR) Patient Engagement Framework outlines four guiding principles for meaningful engagement of patients as partners in research: inclusiveness, support, mutual respect, and co-building. Other examples of strategic plans for patient engagement in research include those outlined by the Patient-Centered Outcomes Research Institute (PCORI, 2013) in the US and the National Institute for Health Research (NIHR, 2019-2020) in the UK. Recent review articles have specifically explored engaging older adults and their caregivers in health research (Bethell et al., 2018; Holroyd-Leduc et al., 2016; McNeil et al., 2016). These studies resulted in a summary of barriers and enablers to patient engagement (Bethell et al., 2018), guiding principles (Holroyd-Leduc et al., 2016), and a patient engagement framework (McNeil et al., 2016).

There are opportunities to use such frameworks and guiding principles to develop new and innovative approaches to involve residents and their caregivers more proactively in activities such as care planning and research. In the LTC setting, patient engagement could involve co-designing strategies for meaningful engagement with all stakeholders (e.g., residents, families, health-care providers) and in partnership with residents in particular. Such innovative approaches could result in more relevant strategies that meet residents’ needs. For example, co-designed strategies could include shared approaches to decision-making through more effective communication and collaboration (Cranley et al., 2020). While many residents in LTC homes have some form of cognitive impairment (Canadian Institute for Health Information [CIHI],2018–2019), such impairment should not preclude their involvement in care activities or research (Holroyd-Leduc et al., 2016). Instead, patient engagement provides an opportunity to individualize activities for all residents so that they are meaningfully participating in their own care decisions when they are able to and are empowered. Engagement practices, however, require systematic structures, processes, and leadership to support the incorporation of these new practices in LTC.

Engaging patients in research promotes an integrated knowledge translation approach to new knowledge development (Banner et al., 2019). Future research should, therefore, focus on ways to optimize the creation of person-centered environments (McGilton et al., 2016). Based on my research experience with LTC, I offer the following three key directions for future research in the area of patient engagement in LTC. First, I argue that we need research that explores new methods and strategies to meaningfully engage residents and their caregivers, the types of activities that would be meaningful to them, and approaches to involve residents as partners in co-designing strategies for meaningful engagement. This is especially important in light of the many lessons that we learned from the COVID-19 social and physical distancing experience and the impact that social isolation has on LTC residents and their caregivers. Second, we also need research to examine what types of patient engagement strategies are effective in LTC. This is because understanding how patient engagement can be implemented in LTC and the effectiveness of such strategies is essential for the uptake of evidence-based practice. Finally, I suggest that research is needed to explore the impact of patient engagement on health-care outcomes in LTC. Specifically, we need to examine the impact of engaging residents in research and care activities on their decision autonomy, empowerment, and satisfaction with care and quality of life. It is my opinion that such research directions could advance patient engagement in LTC, ultimately providing a much needed evidence-base for the development of best practices for patient engagement and for the provision of high-quality resident- and family-centered care.