Interventions to support parents of infants at risk or with a diagnosis of neurodevelopmental disability.

Abstract

Parents of children with a diagnosis or at risk of neurodevelopmental disabilities experience varied challenges of psychological adjustment. Many studies report psychological distress, including guilt, helplessness, anxiety and depression while in the Neonatal Intensive Care Unit (NICU)1 and often experience this time as traumatic and stressful.2 Interventions to improve the pyschological adjustment and well-being of parents of these vulnerable infants are varied in framework, dosage and timing.3 In their recent systematic review, Dickinson and colleagues examine the effect of interventions on psychological adjustment of parents of infants with a diagnosis or risk of neurodevelopmental disability compared with usual care.4 This study is different to other reviews that have included only preterm infants, rather than broader neurodevelopmental impairments, or focused primarily on infant development,5 mother-infant attachment6 or NICU-based3 interventions. Based on these papers, Dickinson and colleagues reported that a small number of high-quality studies demonstrated moderate strength of effectiveness in reducing parental psychological symptoms of trauma and stress, which was maintained at follow-up post-intervention (6 months to 8 years). Of the high-quality studies measuring depression and anxiety symptoms, there were no significant effects of interventions immediately post-intervention; however, significant improvements in these symptoms were seen at longer-term follow-up, suggesting a delayed effect of interventions on parental psychological adjustment. This highlights the importance of having psychological and emotional support for parents of high-risk infants both during an admission to the NICU and on discharge home, along with longer-term follow-up. High-quality studies were restricted to studies of preterm or low birth weight infants, highlighting a need for further studies in diverse high-risk infant populations. As a parent's ability to cope and support their infants’ needs is highly influenced by their psychological and emotional state, most interventions commence in the NICU to help parental psychological adjustment from the beginning of their child's journey.4 Similar to therapeutic interventions for infants with neurodevelopmental disabilities such as cerebral palsy,7 many intervention frameworks were explored in this review and no single approach appeared superior over another. This draws attention to the heterogeneity of therapy approaches in this area and the potential for future research to validate one approach over the others. Few included studies focused on both infant and parent outcomes, with only 33% also measuring infant or parent-infant relationship outcomes.4 Future studies may investigate both infant and parent outcomes to more holistically capture the entire family unit. Major strengths of this study were the systematic search strategy and clinically relevant interventions and outcomes. While some included studies had poor methodological quality, these were removed from meta-analyses to establish pooled effect of high-quality studies only. This review, while comprehensive, is limited by the research to date which is primarily focused on infants born preterm or low birth weight. Therefore, further research should explore parental psychological adjustment and well-being in wider neurodevelopmental disabilities. This knowledge is important to health professionals as parental mental health in adjusting to their infant's medical needs is crucial in the care provided to these infants. None. https://ebneo.org/2020/12/support-to-parents-neurodevelopmental-disability