Abstract

Background: Family involvement in care often continues after the admission of an older adult to a long-term care home. However, family caregivers' specific contributions to care-related tasks, including the time they dedicate to the care of a resident in long-term care, are not very well-understood.

Objective: To investigate how adult children and spouses/partners differ in their patterns of caregiving in long-term care, including in the frequency of visits and care tasks they perform.

Methods: The study sample included adult children and spouse/partner caregivers (n=191) in Ontario, Canada, who provided care to a long-term care resident prior to the COVID-19 pandemic. This timeframe was selected since the pandemic had significantly limited the ability of caregivers to regularly visit and provide care to residents in long-term care homes. Eligible caregivers completed an online survey between April 8 and June 11, 2021. The survey included questions pertaining to their sociodemographic characteristics (e.g., age, sex at birth, gender, ethnicity, and employment status), frequency of visits, as well as specific tasks performed during a visit (e.g., helping the resident get in or out of bed, bathing them, driving them to appointments, and helping with meals).

Results: Spouses/partners (n=32, 57.6% female and 42.4% male) had a median age of 75.9 years (IQR 61.8-93.9) and adult children (n=159, 84.3% female and 14.5% male) had a median age of 61.8 years (IQR 26.9-76.8.9). Most participants were married or in a common-law union (81.8% of spouses/partners and 74.3% of adult children). Both groups were primarily Caucasian (90.9% of spouses/partners and 88.1% of adult children). Spouses/partners were more likely to visit in the afternoon and stay for supper (27.3%) while adult children were less likely to have a set schedule for their visits (34.6%). Spouses/partners were more likely to visit daily (57.6%) while adult children tended to visit on a weekly basis (66.7%). Both groups were equally likely to provide social-emotional support (spouses/partners: 100%, adult children: 99.3%), monitor the residents' care (spouses/partners: 100%, adult children: 98.7%), and participate with the residents in leisure activities (spouses/partners: 96.9%, adult children: 93.0%). However, the two groups also had differences in their form of caregiving, with spouses/partners more focused on direct care, such as monitoring the residents for adverse reactions to medications (spouses/partners: 83.9%, adult children: 44.5%) and helping the care team manage the residents' behaviours toward other residents or staff (spouses/partners: 58.1%, adult children: 34.4%). Adult children were more involved in indirect care, such as helping residents stay in touch with family (spouses/partners: 64.5%, adult children: 74.7%) or keeping up with current events (spouses/partners: 67.7%, adult children: 82.4%).

Conclusions: Findings from this survey highlight the roles of, and differences in, caregiving tasks undertaken by spouses/partners and adult children to residents in long-term care homes. These findings provide insight into the types of training and resources unpaid family caregivers may need to support long-term care residents safely and effectively.