Supporting parent treatment decision-making in relapsed and refractory neuroblastoma: co-design of a web-based intervention

TL;DR

A web-based tool was co-designed with parents to help them make treatment decisions for children with a rare, aggressive childhood cancer.

Contribution

A co-designed web-based intervention to support parents in treatment decision-making for relapsed/refractory neuroblastoma.

Findings

Parents need support to navigate complex treatment decisions for their child's cancer.

User testing led to design improvements like easier navigation and clearer content.

Co-design with parents ensured the intervention met their cognitive, emotional, and practical needs.

Abstract

Parents of children diagnosed with relapsed or refractory neuroblastoma become involved in making treatment decisions for their child due to an absence of no standard treatment protocol with no clear treatment endpoints. Relapsed and refractory neuroblastoma is a poor-prognosis childhood cancer with varying treatment options available depending on their child’s response to treatment. As a result, parents in partnership with their child’s medical team make repeated treatment decisions over time. Research has shown how this decision-making is influenced by uncertainty of their child’s response to treatments and overall outcome, and parents’ emotional and cognitive adjustments. Having time to research and gather information has also shown to enable and inform parent involvement and responsibility within decision-making. An intervention to support parents can help them navigate these complex decisions aiding their cognitive, emotional, and practical needs to enable and inform their decision-making.

Intervention development followed the Medical Research Council Framework for developing complex intervention co-designed with a parent stakeholder group. A review of the literature and analysis of parent interviews informed the intervention. A one-off clinical advisory group was formed to review draft content. Intervention user testing was completed using cognitive think-aloud interviews.

A web-based intervention was developed to support and facilitate parent treatment decision-making in relapsed and refractory neuroblastoma. Co-design was iterative with a combination of ten face-to-face and virtual workshops to discuss and develop the website content, design, and layout. User testing was completed with seven parents and findings informed changes which included reformatting web pages, reducing text paragraphs for easier reading, creating additional webpages for ease of navigation of information and providing parent quotes for authenticity. Recommendations for intervention development using co-design are provided based on our experiences of using this approach.

This is a disease specific intervention developed to support and facilitate parent treatment decision-making in a specific poor-prognosis childhood cancer. Co-design was essential to ensure the intervention met the needs of this parent population. Further work following the MRC framework will test and evaluate its impact and effectiveness in clinical practice.

The online version contains supplementary material available at 10.1186/s12911-025-03313-z.

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