G127(P) Scoping review: improving health, wellbeing and parenting skills in parents of children with medical complexity and special health care needs

Abstract

Aims Parenting children with special health care needs and medical complexity can be challenging, and parents may struggle to manage their child’s health and their own reactions, contributing to poorer health outcomes for parents, the child and other family members. Frequent healthcare contact however presents opportunities to provide supportive interventions but current review evidence is limited. The objectives were to scope parent and family-based health and well-being interventions amenable to delivery within routine healthcare settings. Methods MEDLINE, EMBASE, PsycINFO, CINAHL, The Cochrane Library, ERIC, ASSIA, HMIC and OpenGrey were searched up to February 2017. 10 154 citations were double screened according to predetermined eligibility criteria. Sixty-five studies were included. Data on study design, population, measurement tools, results, and use of theory were extracted and summarized. Results Diverse examples were found Psychosocial and behaviour change programs, targeted support around hospital admission, parenting programs and peer support were common. Outcomes measured were diverse with 129 outcomes measured using 161 different tools. The most common outcome measured was anxiety in 19 studies (29%), followed by stress (n=12, 18%), depression (n=11, 17%) and coping (n=10, 15%). Interventions were delivered by many different health care professionals and lay workers, indicating that many could be delivered within existing multi-disciplinary teams, and examples of remote and flexible interventions demonstrate that geography or busy schedules do not need to be a barrier to parent participation. Most studies reported some favourable outcomes and use of theory was associated with positive findings. No serious adverse events were reported. Conclusions The range of interventions and targets identified suggests that the impact on parents of caring for a child with a chronic health condition is substantial and diverse, and that there is potential for a range of interventions to improve or mitigate important parent outcomes. One approach is unlikely to meet the needs of all parents and parents may benefit from a number of approaches. Few interventions included parents of children with medical complexity and there is a pressing need for intervention development to support these parents.