Modeling the Social Determinants of Caregiver Burden Among Families of Children With Developmental Disabilities

Abstract

This study described predictors of caregiver burden among parents of children with developmental disabilities. The sample, obtained from the 2005-2006 National Survey of Children With Special Health Care Needs, included 12,225 children, aged 5 to 17 years, with a developmental disability. Structural equation modeling assessed the relationships between the factors of Caregiver Burden, Ease of Accessing and Navigating the Health Care System, and Unmet Health Care Needs. Caregiver burden was inversely associated with ease of accessing and navigating the health care system (β = -0.094, SE (β) = 0.045) and positively associated with unmet health care needs (β = 0.428, SE (β) = 0.036). Parents of poor, minority, and uninsured children experienced significantly greater caregiver burden. Bolstering services, particularly for vulnerable families, may ameliorate caregiver burden.

Risk factors for family time burdens providing and arranging health care for children with special health care needs: Lessons from nonproportional odds models

“…Families that lacked enabling factors for healthcare utilization had higher odds of family time burden, suggesting that access to health services is an important mechanism for reducing the time family members must spend on tasks related to their child's healthcare. Consistent with previous research (Kuo et al, 2011a;McManus et al, 2011;Miller et al, 2015;Turchi et al, 2009), we found that, even after accounting for child's health, families with public health insurance (alone or in combination with private insurance), and those without a medical home, had high odds of time burden for both arranging/coordinating and providing health care for the child at home. Past research shows that key components of the medical home for reducing time burden include family-centered care, care coordination, and obtaining needed referrals (Miller et al, 2015).…”

“…Need factors, including the severity and instability of the child's condition, and specific diagnoses, are important predictors of time spent providing health care for the child at home and arranging/coordinating care. These findings concur with those of previous studies that identified families of children who were severely and frequently affected by their conditions, or whose health care needs frequently changed, as experiencing the highest time burdens (Bramlett et al, 2009;DuPaul et al, 2013;Kuo et al, 2011b;McCann et al, 2012;McManus et al, 2011;Okumura et al, 2009;Schuster et al, 2011). Measures of stability and severity, based on health status questions like those on the NS-CSHCN (NCHS, 2011), could provide relatively simple ways for clinicians to screen patients for high risk of time burden.…”

“…Those at risk for spending substantial time providing care for their child at home will benefit from help identifying services that could be provided by visiting nurses, home health aides, or therapists. Such needs, if unmet, require family members to deliver that care at home (McManus et al, 2011;Miller et al, 2013), adding to the risk of a family burden providing care. For families with chronic, round-the-clock caregiver responsibilities, such as those whose children have autism or cystic fibrosis, referral to respite care services could reduce caregiver burnout.…”

Therapy Use for Children With Developmental Conditions: Analysis of Colorado Medicaid Data

“…Previous research suggests caregivers of children with disabilities experienced greater caregiver stress and related this to coordinating and managing multiple appointments. 20 Thus, it is plausible that the psychosocial burden of caring for a child with a disability negatively influences parents' capacity to engage with therapy services as frequently as parents of children with developmental delays. Moreover, it is also possible that the therapy treatment regimens for children with DX are more complex and involved, which precludes many families, particularly those with limited resources, from engaging fully, which has been previously reported.…”

Caregiver Burden and Preventive Dental Care Use for US Children with Special Health Care Needs: A Stratified Analysis Based on Functional Limitation

“…Caregiver burden is defined as “the time and financial demands associated with caring for a child with disability that constrain the parental social role” (10). Most CSHCN are cared for by a parent who takes on the role of informal caregiver (11).…”