The University of Southampton
University of Southampton Institutional Repository

Decision-making in childhood cancer parents’ and adolescents’ views and perceptions

Decision-making in childhood cancer parents’ and adolescents’ views and perceptions
Decision-making in childhood cancer parents’ and adolescents’ views and perceptions
Purpose
Few studies have addressed the way in which families of children with cancer make treatment decisions, and how we can meet parents’ and young peoples’ decisional involvement needs. We aimed to explore parents’ and adolescents’ views and perceptions of making medical decisions in pediatric oncology.
Methods
We conducted semi-structured interviews with 25 parents of children diagnosed with cancer in the past 12-months, and 5 adolescents diagnosed in the past 12-months. Our interview schedule was underpinned by Elwyn and Miron-Shatz’s decision-making model. The model acknowledges the deliberation (process of coming to a decision) and determination (making a choice) phases of decision-making. We conducted a thematic analysis.
Results
Our findings indicate that information provision is not enough to facilitate parents’ decision-making involvement. Many parents sought additional information to meet their individual needs and preferences. While many parents and young people desired decisional involvement, they trusted the doctors to make treatment decisions. Feelings of distress, inadequacy and lack of choice impacted decision-making participation. Regardless, many parents in our study were satisfied with treatment decisions, but this was largely dependent on positive treatment outcomes.
Conclusion
Our study contributes to understanding how families of a child with cancer make treatment decisions. Families tend to rely on doctors to make treatment decisions, but often seek additional information to help them feel involved in the decision process. Findings highlight that decision-making in pediatric oncology should focus on involving families in the deliberation phase, rather than just determination of choice.
0941-4355
Robertson, Eden G.
40a2872b-9c3a-4a95-8677-a2e85e45873c
Wakefield, Claire E.
e3077def-60a6-4da7-8d13-0a0ce10dc85d
Shaw, Joanne
59cab13a-4c89-4198-a710-6590a40374c5
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
McGill, Brittany
431f7d3d-271a-4689-b9bb-1656d1d5a86c
Cohn, Richard J.
cf1c651c-c51d-49b5-a43f-733bf1820ff0
Fardell, Joanna E.
6f5da2a4-b37d-469c-b012-689955099a74
Robertson, Eden G.
40a2872b-9c3a-4a95-8677-a2e85e45873c
Wakefield, Claire E.
e3077def-60a6-4da7-8d13-0a0ce10dc85d
Shaw, Joanne
59cab13a-4c89-4198-a710-6590a40374c5
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
McGill, Brittany
431f7d3d-271a-4689-b9bb-1656d1d5a86c
Cohn, Richard J.
cf1c651c-c51d-49b5-a43f-733bf1820ff0
Fardell, Joanna E.
6f5da2a4-b37d-469c-b012-689955099a74

Robertson, Eden G., Wakefield, Claire E., Shaw, Joanne, Darlington, Anne-Sophie, McGill, Brittany, Cohn, Richard J. and Fardell, Joanna E. (2019) Decision-making in childhood cancer parents’ and adolescents’ views and perceptions. Supportive Care in Cancer. (doi:10.1007/s00520-019-04728-x).

Record type: Article

Abstract

Purpose
Few studies have addressed the way in which families of children with cancer make treatment decisions, and how we can meet parents’ and young peoples’ decisional involvement needs. We aimed to explore parents’ and adolescents’ views and perceptions of making medical decisions in pediatric oncology.
Methods
We conducted semi-structured interviews with 25 parents of children diagnosed with cancer in the past 12-months, and 5 adolescents diagnosed in the past 12-months. Our interview schedule was underpinned by Elwyn and Miron-Shatz’s decision-making model. The model acknowledges the deliberation (process of coming to a decision) and determination (making a choice) phases of decision-making. We conducted a thematic analysis.
Results
Our findings indicate that information provision is not enough to facilitate parents’ decision-making involvement. Many parents sought additional information to meet their individual needs and preferences. While many parents and young people desired decisional involvement, they trusted the doctors to make treatment decisions. Feelings of distress, inadequacy and lack of choice impacted decision-making participation. Regardless, many parents in our study were satisfied with treatment decisions, but this was largely dependent on positive treatment outcomes.
Conclusion
Our study contributes to understanding how families of a child with cancer make treatment decisions. Families tend to rely on doctors to make treatment decisions, but often seek additional information to help them feel involved in the decision process. Findings highlight that decision-making in pediatric oncology should focus on involving families in the deliberation phase, rather than just determination of choice.

Text
Decision-making in childhood cancer parents and adolescents ACCEPTED - Accepted Manuscript
Download (119kB)

More information

Accepted/In Press date: 4 February 2019
e-pub ahead of print date: 18 March 2019

Identifiers

Local EPrints ID: 428533
URI: http://eprints.soton.ac.uk/id/eprint/428533
ISSN: 0941-4355
PURE UUID: ce1d7a73-fe5d-4469-93f7-409df43e9efc

Catalogue record

Date deposited: 01 Mar 2019 17:30
Last modified: 28 Apr 2022 04:29

Export record

Altmetrics

Contributors

Author: Eden G. Robertson
Author: Claire E. Wakefield
Author: Joanne Shaw
Author: Brittany McGill
Author: Richard J. Cohn
Author: Joanna E. Fardell

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×