Parenting stress and health-related quality of life among parents of extremely preterm born early adolescents in England: a cross-sectional study.

OBJECTIVE:To determine whether extremely preterm (EP) birth exerts persisting effects on parents in early adolescence. DESIGN:Cross-sectional survey conducted between March 2017 and October 2018. SETTING:Evaluation of a longitudinal population-based birth cohort in England at 11 years of age (EPICure2@11 Study). PARTICIPANTS:Parents of EP (<27 weeks of gestation) adolescents and control parents of term born (≥37 weeks of gestation) classmates of similar age and sex. MAIN OUTCOME MEASURES:The Parenting Stress Index Short Form (PSI-4-SF) and the Short Form Health Survey (SF-12v1). RESULTS:The 163 EP and 125 comparison respondents were most commonly mothers in their mid-40s. EP parents reported higher total parenting stress scores compared with controls, overall (adjusted difference in means: 14 (95% CI 9 to 20)) and after exclusion of moderate and severe child disability and multiples (9 (95% CI 3 to 15). Average physical and mental health-related quality of life scores were similar in the two groups (adjusted difference in means physical health: -2 (95% CI -4 to 1) and mental health: -1 (95% CI -4 to 1)). Among EP parents, 12% (20/164) reported the combination of high parenting stress and low mental health scores. With increasing child age, parenting stress scores for preterm parents were lower in contrast to controls who reported increasing parenting stress. CONCLUSIONS:In early adolescence, compared with parents of term-born children, EP parents experience increased levels of parenting stress that are particularly high among a proportion of parents and associated with lower mental health-related quality of life. Practitioner awareness of this continuing risk throughout childhood is important to support parental abilities and well-being.