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Background: Previous studies showed increasing number of children with a life-limiting or life-threatening condition who may benefit from input from pediatric palliative care services. Aim: To estimate the current prevalence of children with a life-limiting condition and to model future prevalence of this population. Design: Observational study using national inpatient hospital data. A population-based approach utilizing ethnic specific population projections was used to estimate future prevalence. Setting/participants: All children aged 0–19 years with a life-limiting condition diagnostic code recorded in Hospital Episodes Statistics data in England from 2000/01 to 2017/18. Results: Data on 4,543,386 hospital episodes for 359,634 individuals were included. The prevalence of children with a life-limiting condition rose from 26.7 per 10,000 (95%CI 26.5–27.0) in 2001/02 to 66.4 per 10,000 (95% CI: 66.0–66.8) in 2017/18. Using a more restricted definition of a life-limiting condition reduced the prevalence from 66.4 to 61.1 per 10,000 (95%CI 60.7–61.5) in 2017/18. Highest prevalence was in the under 1-year age group at 226.5 per 10,000 and children with a congenital abnormality had the highest prevalence (27.2 per 10,000 (95%CI: 26.9–27.5)). The prevalence was highest among the most deprived group and in children of Pakistani origin. Predicted future prevalence of life-limiting conditions ranged from 67.0 (95%CI 67.7–66.3) to 84.22 (95%CI 78.66–90.17) per 10,000 by 2030. Conclusions: The prevalence of children with a life-limiting or life-threatening condition in England has risen over the last 17 years and is predicted to increase. Future data collections must include the data required to assess the complex health and social care needs of these children.

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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).

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