Parents' experiences of having a child who had a stroke: A systematic review and meta‐ethnography

TL;DR

This study explores how parents experience having a child who had a stroke, highlighting the lack of awareness and support they face.

Contribution

The study provides a conceptual model of parents' experiences through a meta-ethnography of qualitative research on pediatric stroke.

Findings

Parents face emotional challenges due to lack of awareness and insufficient healthcare support.

Societal norms significantly influence parents' experiences and adjustment over time.

A conceptual model was developed to map the trajectory of parents' experiences following a child's stroke.

Abstract

To explore and synthesize interview‐based, qualitative research of parents' experiences of having a child who had a paediatric stroke.

A systematic search of literature identified seven studies that used qualitative, interview‐based methods to investigate parents' experiences of having a child (younger than 25 years) who had a paediatric stroke. Data were extracted and appraised for quality. All seven studies were included in a meta‐ethnography. An advisory group of two parents contributed to the analysis through two consultation meetings.

A conceptual model of parents' experiences was developed, highlighting the lack of childhood stroke awareness, insufficient support from healthcare professionals, and the role of societal norms. These factors significantly shaped both the emotional impact on parents and the trajectory of their experiences, from emergency response to adjustment.

Greater awareness of childhood stroke, alongside sustained professional support for families, may substantially improve outcomes for parents and their children.

Key elements of parents' experiences consisted of three parts: influencing factors, trajectory, and impact. Unawareness of childhood stroke and insufficient healthcare support were key influencing factors highlighted by parents, and normative ideals were found to be particularly influential. The trajectory reflects parents' different stages of experiences and perspectives following stroke. This is mapped over time and across levels of society. Given the evolving nature of developmental conditions, parents may cycle through the stages of the trajectory as new challenges emerge over time.

Plain language summary: https://onlinelibrary.wiley.com/doi/10.1111/dmcn.70071

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