Does informal care impact utilisation of home-based formal care services among end-of-life patients? A decade of evidence from Ontario, Canada

Abstract

Understanding how informal care impacts formal care utilisation for home‐based end‐of‐life patients is an important policy‐ and practice‐relevant question. This paper aims to assess the relationship between informal and formal home care among home‐based end‐of‐life patients and how this relationship has changed over the last decade and over the end‐of‐life trajectory. We focus on informal care provided by family members or friends, and three types of home‐based formal care services: care by personal support workers, physician visits, and nurse visits. Using survey data collected in a home‐based end‐of‐life care programme in Ontario, Canada from 2005 to 2016, we build a two‐part utilisation model analysing both the propensity to use each type of formal care and the amount of formal care received by patients. The results suggest that informal care is a substitute for care by personal support workers, but a complement to physician visits and nurse visits. In the case of nurse visits, an increased complementary effect is observed in more recent years. For home‐based physician and nurse visits, the complementary effect grows with patient's proximity to death. These results highlight the complexity of the relationship between informal and formal care among home‐based end‐of‐life patients. Decision‐makers need to take into account the relationship between informal care and different types of formal services when introducing future policies.

The relationship between formal and informal care among Chinese older adults: based on the 2014 CLHLS dataset

“…A majority of available international studies indicate the complexity of the relationship between informal care mainly provided by families,and formal care provided by professionals [1, 3–5, 10, 15, 19]. The studies on the relationship between informal and formal network care services have developed two important models to understand such interaction.…”

Men who care too much do not work: a systematic review and meta-analysis of the effect of unpaid caregiving by men on their labour market participation

“…First, the demand for home-based informal care is very high in LMICs due to the limited supply of public formal care, especially for those services that substitute for informal caregiving. 8,9 Second, owning to improved education, maternal health, and shifts in social norms and family roles, the majority of LMICs have seen a faster increase in the share of women in the labour force compared to HICs. 10 Indeed, one of the unintended consequence of a surging LFP among women is a potentially heavier burden of caregiving placed on men.…”

The determinants of the intensity of home-based informal care among cancer patients in receipt of home-based palliative care

“…4 Understanding the determinants of the intensity of informal care can help inform policy-decision making regarding the support of home-based care. 4 Existing studies related to the provision of informal care in the home setting have included studies evaluating hours of informal care, 5 the relationship between informal care and formal care, 3,6 and between informal care and labor force outcomes, [7][8][9] and the determinants of informal care. 4,[10][11][12][13][14][15][16][17] With the exception of two studies, 3,5 other studies were in non-palliative care contexts.…”

“…4 Existing studies related to the provision of informal care in the home setting have included studies evaluating hours of informal care, 5 the relationship between informal care and formal care, 3,6 and between informal care and labor force outcomes, [7][8][9] and the determinants of informal care. 4,[10][11][12][13][14][15][16][17] With the exception of two studies, 3,5 other studies were in non-palliative care contexts. Studies assessing the determinants of informal care have targeted the elderly in non-palliative care settings, 10,[12][13][14][15][16][17] and among these studies only a few used longitudinal data [15][16][17] while others used cross-sectional data.…”

“…2 In Canada, the home as the site of care provides patients with both the receipt of formal care and informal care from families or friends in a familiar home-based environment. 3 Informal care can be seen as a direct input to the treatment and well-being of patients, and can be used as a complement to, or in some cases a substitute for, formal care. 4 Understanding the determinants of the intensity of informal care can help inform policy-decision making regarding the support of home-based care.…”