The Caregiver Health Effects of Caring for Young Children with Developmental Disabilities: A Meta-analysis

Abstract

Objectives Mothers of school age and older children with developmental disabilities experience poorer health than mothers of typically developing children. This review assesses the evidence for the effect on mothers' health of caring for young children with developmental disabilities, and the influence of different disability diagnoses and socioeconomic status. Methods Medline, EMBASE, PsycINFO and CINAHL were searched. Studies measuring at least one symptom, using a quantitative scale, in mothers of preschool children (0-5 years) with and without a diagnosed developmental disability were selected. Random effects meta-analysis was performed, and predictive intervals reported due to high expected heterogeneity. Results The meta-analysis included 23 estimates of association from 14 retrospective studies for the outcomes of stress (n = 11), depressive symptoms (n = 9), general health (n = 2) and fatigue (n = 1). Caring for a child with a developmental disability was associated with greater ill health (standardised mean difference 0.87; 95% predictive interval − 0.47, 2.22). The largest association was for mixed developmental disabilities (1.36; − 0.64, 3.36) and smallest for Down syndrome (0.38; − 2.17, 2.92). There was insufficient socioeconomic information to perform subgroup analysis. The small number of studies and data heterogeneity limited the precision of the estimates of association and generalizability of the findings. Conclusions for Practice Mothers of young children with developmental disabilities may have poorer health than those with typically developing children. Research is needed to identify whether the relationship is causal and, if so, interventions that could reduce the negative effect of caregiving. Keywords Systematic review • Meta-analysis • Caregiver • Health • Developmental disabilities Significance Maternal ill health adversely affects mother-child attachment and child emotional and social development. This review illustrates that, during the preschool period, mothers of children with developmental disabilities may have worse health than other mothers across a range of psychological and physical symptoms. This review showed significant variation in the association between caregiving and ill health during the preschool period which was not explained by children's different disability diagnoses. This variation may be due to common stressors during the preschool period that could be targeted to limit the adverse effect of caregiving on health. Objectives Developmental disabilities are long term physiological impairments which significantly affect a child's ability to perform activities of daily living, such as independent feeding, communicating and mobilising (World Health Organization and Unicef 2012). The estimated prevalence of intellectual and developmental disabilities in high income countries ranges from 1 to 4% of children (Maulik et al. 2011; Roeleveld et al. 1997); although prevalence may be as high as 15% for the US (Boyle et al. 2011).

Health of mothers of children with a life-limiting condition: a comparative cohort study

“…Previous studies assessing the health outcomes of mothers have either been in specific groups of children with intellectual or broader disabilities and have focused on the mental health outcomes. 8 30-34 The current findings are consistent with a recent meta-analysis that highlighted the increased risk of depressive symptoms and poorer general health of mothers of children with developmental disabilities 34 and with previous studies of the health of mothers with children with physical disabilities. 30 35 Many published studies have not differentiated between mothers of children with life-limiting or other chronic conditions.…”

Longitudinal changes in well-being of parents of individuals with developmental or mental health problems

“…By combining parents into the broad categories of having children with developmental conditions, mental health problems, or neither of these problems, we lose some within-group variation that comes with the qualities of the diagnosis. For instance, Masefield et al (2020) notes that caring for children with multiple disabilities may pose the greatest risk to caregiver health, while individual disabilities may be differentially associated with specific health outcomes. Certainly, differences in diagnostic categories affects the impact of caregiving stress, as well as how stress manifests in the daily lives of parents (i.e., consistent low-level stress versus more acute stress), as well as the long-term nature of the disability.…”

“…Furthermore, this type of caregiving has been associated with physiological dysregulation ( Barker et al, 2012 ; Seltzer et al, 2009 ), accelerated cognitive aging ( Song et al, 2016 ), and being more vulnerable during periods of economic downturn ( Song et al, 2018 ). In general, providing care for a child with these conditions can contribute to a feeling of chronic stress for parents ( Baxter et al, 2000 ; Masefield et al, 2020 ), which presents a particularly troubling problem, as children with such conditions are likely to reside in the home longer than their typically-developing peers ( Seltzer et al, 2001 ).…”

Cognitive, functional, physical, and nutritional status of the oldest old encountered in primary care: a systematic review

“…This choice was made to prevent bias in longitudinal studies introduced by differential dropout [87]. Third, the NOS used to assess quality has been previously used in studies [88,89] but not strictly methodologically validated. As far as we know, no other scale was available or recommended for cross sectional studies.…”