Exploring parent treatment decision-making in relapsed and refractory neuroblastoma; co-design of an intervention to support and facilitate parents in making these decisions

Abstract

The focus of this research was treatment decision-making of parents whose child had either relapsed or refractory neuroblastoma, a poor-prognosis cancer. There is no standard treatment protocol for relapsed or refractory neuroblastoma, with various treatment options available and no clear treatment endpoints. As a result, parents become involved in making repeated treatment decisions depending on their child’s response to treatment and availability of treatments. Interventions are needed to support parents in making these difficult decisions.
This was a qualitative research study incorporating co-design with intervention development which aimed to: 1) identify, describe, explore, and explain how parents made treatment decisions when their child had relapsed or refractory neuroblastoma (phase one) and 2) develop an intervention prototype for parents which supports their treatment decision-making (phase two). This thesis comprises six papers, three published and three under review which presents the research undertaken in each phase.
In phase one, a scoping review explored parent values and preferences underpinning treatment decision-making in poor-prognosis cancer following the Joanna Briggs Methodology. Twelve articles were included, and findings showed there were underpinning and influencing factors, values and preferences which informed parent decision-making. Qualitative semi-structured interviews with 18 parents, analysed using reflexive thematic analysis explored how parents made treatment decisions and the role of emotion in making these decisions. Findings generated four themes which enabled, influenced, and informed parent decision-making: 1) time as a structure within decision-making; 2) uncertainty and its relationships with treatment risk, side effects and outcomes; 3) parent oscillation of their cognitive and emotional adjustment; 4) parent responsibility and involvement in decision-making. A conceptual framework illustrates the relationships between these themes.
In phase two, intervention development was co-designed with six parents following the Medical Research Council Framework for developing complex interventions, informed by the findings from phase one. Intervention user testing with seven parents using cognitive interviews resulted in reformatting web pages for ease of navigation, reducing text paragraphs, and incorporating parent quotes for authenticity. This study addressed a gap in knowledge on how parents made repeated treatment decisions when their child has a poor-prognosis cancer and, in doing so, informed the first disease specific intervention to support parents in making these decisions.

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Identifiers

ORCID for Helen Nina Pearson: orcid.org/0000-0001-7388-3981

ORCID for Michelle Myall: orcid.org/0000-0001-8733-7412

ORCID for Anne-Sophie Darlington: orcid.org/0000-0003-4387-7278

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