Experiences of care partners and residents with the Long-Term Care Palliative Toolkit during the COVID-19 pandemic: A multiple methods study

Background: With a large burden of suffering and death in 2020 due to COVID-19 in long-term care (LTC) homes resulting in restrictions of visitations, there is a need for a formal virtual intervention to support families/friends (i.e., care partners) and residents around palliative care, including planning for end-of-life when outbreaks like these occur. The LTC Palliative Toolkit includes informational resources for care partners, residents, and healthcare providers about the trajectory of life-limiting chronic illnesses (i.e., frailty, dementia, heart failure, kidney disease, lung disease) and Palliative Care Conferences (PCCs). Objective: To evaluate the impact of the LTC Palliative Toolkit on preparedness for end-of-life and satisfaction with information and to explore the experiences of care partners and residents with the virtual delivery of the components of the LTC Palliative Toolkit (i.e., informational pamphlets and PCCs). Methods: A multiple methods design was employed. Three LTC homes, one from each province (Ontario, New Brunswick, and Saskatchewan, Canada), were selected to reflect diverse contexts (e.g., ownership, staff turnover, facility size, and location). Caring Ahead surveys focusing on actions, dementia knowledge, communication, and emotions and support needs were conducted with care partners before and after PCCs to evaluate how prepared they felt about their relative or friend’s end-of-life and their satisfaction. Some care partners and residents completed telephone semi-structured interviews to explore their experiences with care received. Results: Survey findings revealed only one statistically significant improvement after the intervention period, an improvement in the emotion and support needs domain following PCCs, with baseline and follow-up mean scores of 6.08 (SD = 1.06) and 6.35 (SD = 1.16), respectively ( p  = 0.016). Qualitative interviews identified that the LTC Palliative Toolkit was a valuable intervention for both care partners and residents. Conclusion: The LTC Palliative Toolkit is suitable for use in any context and demonstrated high acceptability during the COVID-19 pandemic.