Exploring parent treatment decision-making in relapsed and refractory neuroblastoma: a qualitative study
Exploring parent treatment decision-making in relapsed and refractory neuroblastoma: a qualitative study
Parents often become involved in making treatment decisions for their child with cancer when there is no standard treatment protocol, typically seen in poor-prognosis cancers. Advances in scientific medicine has led to more treatment options being available for children resulting in parents making repeated treatment decisions depending on their child's response to treatment. The emotional turmoil of their child's cancer diagnosis can be exacerbated when combined with making decisions that have uncertain outcomes. This study aimed to identify, describe, explore, and explain how parents made repeated treatment decisions and the role of emotion in decision-making when their child had relapsed or refractory neuroblastoma, a poor-prognosis cancer.
Data were collected using qualitative interviews between 2020 and 2022 with parents of children with relapsed or refractory neuroblastoma in the United Kingdom. Data were analysed using Reflexive Thematic Analysis.
Eighteen parents who made between one to six treatment decisions participated. Decision-making incorporated four themes which enabled, influenced, and informed how parents made treatment decisions: 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. Time was the central organising concept which structured and organised parent decision-making. We adopted Orlikowski and Yates’s (2002) temporal structures to characterise the experience of time and Stroebe and Schut’s (1999) dual-processing theory to explore the oscillation of parent adjustment of their situation cognitively and emotionally. A conceptual framework showed the interrelationships of these themes.
Cancer, Child, Decision-making, Neuroblastoma, Paediatrics, Parent, Poor-prognosis, Qualitative, Reflexive thematic analysis
Pearson, Helen
1a9dfc7a-f1fa-4152-a618-55a946e655db
Gibson, Faith
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Myall, Michelle
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Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
29 September 2024
Pearson, Helen
1a9dfc7a-f1fa-4152-a618-55a946e655db
Gibson, Faith
b537d483-3f20-4f15-a9b8-880758746728
Myall, Michelle
0604ba0f-75c2-4783-9afe-aa54bf81513f
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Pearson, Helen, Gibson, Faith, Myall, Michelle and Darlington, Anne-Sophie
(2024)
Exploring parent treatment decision-making in relapsed and refractory neuroblastoma: a qualitative study.
Qualitative Research in Health, 6, [100487].
(doi:10.1016/j.ssmqr.2024.100487).
Abstract
Parents often become involved in making treatment decisions for their child with cancer when there is no standard treatment protocol, typically seen in poor-prognosis cancers. Advances in scientific medicine has led to more treatment options being available for children resulting in parents making repeated treatment decisions depending on their child's response to treatment. The emotional turmoil of their child's cancer diagnosis can be exacerbated when combined with making decisions that have uncertain outcomes. This study aimed to identify, describe, explore, and explain how parents made repeated treatment decisions and the role of emotion in decision-making when their child had relapsed or refractory neuroblastoma, a poor-prognosis cancer.
Data were collected using qualitative interviews between 2020 and 2022 with parents of children with relapsed or refractory neuroblastoma in the United Kingdom. Data were analysed using Reflexive Thematic Analysis.
Eighteen parents who made between one to six treatment decisions participated. Decision-making incorporated four themes which enabled, influenced, and informed how parents made treatment decisions: 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. Time was the central organising concept which structured and organised parent decision-making. We adopted Orlikowski and Yates’s (2002) temporal structures to characterise the experience of time and Stroebe and Schut’s (1999) dual-processing theory to explore the oscillation of parent adjustment of their situation cognitively and emotionally. A conceptual framework showed the interrelationships of these themes.
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Accepted/In Press date: 26 September 2024
e-pub ahead of print date: 27 September 2024
Published date: 29 September 2024
Keywords:
Cancer, Child, Decision-making, Neuroblastoma, Paediatrics, Parent, Poor-prognosis, Qualitative, Reflexive thematic analysis
Identifiers
Local EPrints ID: 494199
URI: http://eprints.soton.ac.uk/id/eprint/494199
ISSN: 2667-3215
PURE UUID: f9d86d6d-18b2-4de0-aa07-f32588dfc11c
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Date deposited: 30 Sep 2024 13:36
Last modified: 05 Oct 2024 02:02
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Author:
Helen Pearson
Author:
Faith Gibson
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