The hidden ill-health of mothers of young disabled children: The health and primary healthcare use of mothers of preschool children with developmental disabilities

Mothers of disabled children (caregivers) have worse health than mothers of typically developing children. Ill-health increases perception of the difficulties of caregiving, and adversely affects mother-child attachment, child development and behaviour. Caregivers may also experience barriers to accessing healthcare (time-consuming caregiving tasks, unsuitable transportation), increasing the risk of undetected and untreated symptoms. Most research is non-UK based and focuses on stress and depression in mother-caregivers of children over five, despite disability diagnosis often occurring earlier. In my thesis, I explore differences in the psychological and physical ill-health and healthcare use of caregivers of children with disabilities compared with other mothers of preschool (0-5 years) children in the UK, and the influence of child disability diagnosis. I conducted a systematic review of the association between caregiving and ill-health. This informed analyses of the Born in Bradford cohort with linked primary care data for caregivers of children with developmental disabilities and delay and other mothers, including: prevalence of symptoms of ill-health; frequency of visits for symptoms; and healthcare use by mothers of children with Autism Spectrum Disorders (ASD). In the review, there was evidence of a large adverse association between caregiving and health. The high heterogeneity in the data was not explained by disability diagnosis. In the cohort analysis, compared with other mothers: caregivers had worse health; visited the doctor for psychological distress slightly more often but were less likely to visit when actually distressed; visited as often for exhaustion and head/musculoskeletal pain. Differences in patterns of healthcare use were not associated with caregiving for children with ASD. I show that disparities in the health of caregivers and other mothers emerge in the preschool period, and caregiver ill-health may be under-detected in primary care. Unlike older child groups, caregiving rather than specific child diagnoses is associated with ill-health during the preschool period.