Improving health, well-being and parenting skills in parents of children with medical complexity: a scoping review protocol

Introduction: Less than 1% of children have complex medical conditions but account for one third of all child health spending. The impact of suboptimal management of this group of children can have a considerable effect on families as well as services. Some families appear to cope more easily than others do, but there are compelling reasons to suggest that effective interventions may improve family coping and ultimately outcomes. Hospitalisation of their child presents a unique set of pressures and challenges for parents, but also an opportunity to intervene. However, the evidence is not well described in relation to this group of families. The primary objective of this scoping review is to identify parent and family based interventions available to improve parental health, wellbeing, functioning or skills in the context of a child’s medically complex hospital admission and hospital care.

Methods and analysis: Nine bibliographic databases will be searched spanning medicine, nursing, psychology, education, social work and the grey literature using a combination of index terms and text words related to parents, childhood, chronic illness and interventions. Study eligibility will be assessed by two researchers against pre-set inclusion and exclusion criteria. Key information from each study will be extracted and charted including year of publication, condition, severity, geographical setting, key concepts and definitions, aims, study population and sample size, methodology / methods, interventions, outcomes, and key findings. Directed qualitative content analysis will be used to make sense of narrative findings within the included studies. Results will be presented which summarise the scope of the literature and identify key findings, potential areas for evidence synthesis and research gaps.

Ethics and dissemination: Ethical approval is not required. The results of this review will be disseminated through publication in a peer-reviewed journal and feedback to stakeholders during the development of a hospital based intervention.