Determinants of primary and non‐primary informal care‐giving to home‐based palliative care cancer care‐recipients in Ontario, Canada

Background: Informal care plays an important role in the care of care‐recipients. Most of the previous studies focused on the primary caregivers and ignored the importance of non‐primary caregivers. Moreover, little is known about the provision of informal care in the context of home‐based palliative care. Objectives: The purpose of this study was to examine the provision of primary and non‐primary informal care‐giving and their respective determinants. Primary caregivers assume the main responsibility for care, while non‐primary caregivers are those other than the primary caregiver who provide care‐giving. Methods: A longitudinal, prospective cohort design was conducted and data were drawn from two palliative care programs in Canada between November 2013 and August 2017. A total of 273 caregivers of home‐based palliative care cancer care‐recipients were interviewed biweekly until the care recipient died. The outcomes were the propensity and intensity of informal care‐giving. Regression analysis with instrumental variables was used. Results: About 90% of primary caregivers were spouses and children, while 53% of non‐primary caregivers were others rather than spouses and children. The average number of hours of primary and non‐primary informal care‐giving reported for each 2‐week interview period was 83 hr and 23 hr, respectively. Hours of home‐based personal support workers decreased the intensity of primary care‐giving and the likelihood of non‐primary care‐giving. Home‐based nursing visits increased the propensity of non‐primary care‐giving. The primary care‐giving and non‐primary care‐giving complement each other. Care recipients living alone received less primary informal care‐giving. Employed primary caregivers decreased their provision of primary care‐giving, but promoted the involvement of non‐primary care‐giving. Conclusions: Our study has clinical practices and policy implications. Suitable and targeted interventions are encouraged to make sure the provision of primary and non‐primary care‐giving, to balance the work of the primary caregivers and their care‐giving responsibility, and to effectively arrange the formal home‐based palliative care services.