Receipt of respite services among families of children and youth with special health care needs: A population-based cohort study.

Objectives: Children and youth with special health care needs (CYSHCN) often require ongoing care, which can be an immense undertaking for their families. To provide a short-term break, families may obtain respite services, however, respite care may not be accessible or available to those who need it. The study objective was to identify demographic, socioeconomic, and health-related characteristics associated with receipt of respite services among families of CYSHCN in Manitoba. Methods: Using a retrospective cohort design, a population-based cohort of CYSHCN (0 to 17 years old) (N=14,759) residing in Manitoba between 2013 and 2018 was defined using provincial-level administrative data (hospital, medical claims, education, disability services). Most of the cohort members (95.9%) were linked to their mother. We used multivariable logistic regression to determine the demographic, economic, and mental and physical health characteristics of the CYSHCN, their mothers, and siblings significantly associated with receipt of respite services. Additionally, the types of respite services received, and public funding dispersed for respite services during the study period were assessed. Results: Less than one-quarter of families of CYSHCN (24.2%; 3,413) received at least one respite service. Among families who received respite, receipt was evenly distributed across neighbourhood-level income. However, the odds of receiving respite was lower in low income neighbourhoods (Q1: OR = 0.53, 95% CI [0.46, 0.61]; Q2: OR = 0.85, 95% CI [0.74, 0.98]). Of mothers in families that did not receive respite, 48.8% were diagnosed with a mental health disorder, and 60.8% had a physical health condition. Receipt of respite services was significantly associated with mothers' age (OR=1.05, 95% CI [1.04, 1.05]) and marital status (OR=1.71, 95% CI [1.57, 1.86]). Half (52.0%; 14,190) of all respite service records were attributed to self-managed services. Conclusions: Many families of CYSHCN in Manitoba are not receiving publicly funded respite services. Our results suggest there are inequities in these services as respite was lower among families residing in economically disadvantaged neighbourhoods. Caring for a CYSHCN and accessing respite services (or not) may affect mothers' mental and physical health, particularly for families doing self-managed respite. Efforts and policy review are needed to address the limited and inequitable receipt of respite services for Manitoba families of CYSHCN.