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Experiences of parenting a child receiving dexamethasone during maintenance chemotherapy for acute lymphoblastic leukemia

Experiences of parenting a child receiving dexamethasone during maintenance chemotherapy for acute lymphoblastic leukemia
Experiences of parenting a child receiving dexamethasone during maintenance chemotherapy for acute lymphoblastic leukemia

Background: the purpose of this research was to understand the experience of parenting a child receiving dexamethasone during maintenance chemotherapy for acute lymphoblastic leukemia (ALL). Previous research has shown that dexamethasone's high level of toxicity causes many physical, behavioral, and emotional side effects, which reduce the quality of life during ALL treatment. Less is known about the experience of parenting a child receiving dexamethasone and the impact on the parent–child relationship. 

Methods: in-depth semi-structured interviews were conducted with 12 parents and data was analyzed using Interpretative Phenomenological Analysis. 

Results: four superordinate themes emerged: “a child on steroids is not your child”: the behavioral and emotional changes in the child and their relationships; “you have to do what you have to do”: adapting parenting to manage dexamethasone; “it breaks your heart … it's a horrible medicine”: the emotional impact of parenting a child on dexamethasone; and, “it's the worst week ever”: finding ways to cope with the challenges of dexamethasone. 

Discussion: a preparatory intervention for parents beginning the dexamethasone journey focused on likely challenges, managing boundary setting and discipline, and their own emotional struggles, could be beneficial. Research into the impact on siblings could further understand the systemic influence of dexamethasone and help develop further interventions.

chemotherapy, family, oncology, parent, pediatric
2752-7530
411-419
David, Annabel L.
cd59f635-66b1-48d3-ae42-f80269142481
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Griffiths, Helen C.
380b8f0b-3dd4-4bf6-8342-5be86a059453
David, Annabel L.
cd59f635-66b1-48d3-ae42-f80269142481
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Griffiths, Helen C.
380b8f0b-3dd4-4bf6-8342-5be86a059453

David, Annabel L., Darlington, Anne-Sophie and Griffiths, Helen C. (2023) Experiences of parenting a child receiving dexamethasone during maintenance chemotherapy for acute lymphoblastic leukemia. Journal of Pediatric Hematology/Oncology Nursing, 40 (6), 411-419. (doi:10.1177/27527530221147877).

Record type: Article

Abstract

Background: the purpose of this research was to understand the experience of parenting a child receiving dexamethasone during maintenance chemotherapy for acute lymphoblastic leukemia (ALL). Previous research has shown that dexamethasone's high level of toxicity causes many physical, behavioral, and emotional side effects, which reduce the quality of life during ALL treatment. Less is known about the experience of parenting a child receiving dexamethasone and the impact on the parent–child relationship. 

Methods: in-depth semi-structured interviews were conducted with 12 parents and data was analyzed using Interpretative Phenomenological Analysis. 

Results: four superordinate themes emerged: “a child on steroids is not your child”: the behavioral and emotional changes in the child and their relationships; “you have to do what you have to do”: adapting parenting to manage dexamethasone; “it breaks your heart … it's a horrible medicine”: the emotional impact of parenting a child on dexamethasone; and, “it's the worst week ever”: finding ways to cope with the challenges of dexamethasone. 

Discussion: a preparatory intervention for parents beginning the dexamethasone journey focused on likely challenges, managing boundary setting and discipline, and their own emotional struggles, could be beneficial. Research into the impact on siblings could further understand the systemic influence of dexamethasone and help develop further interventions.

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379_Experiences of Parenting a Child Receiving Dexamethasone During Maintenance Chemotherapy for Acute Lymphoblastic Leukemia - Accepted Manuscript
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e-pub ahead of print date: 17 May 2023
Published date: 1 November 2023
Additional Information: Funding Information: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Oxford Institute of Clinical Psychology Training. Publisher Copyright: © 2023 by Association of Pediatric Hematology/Oncology Nurses.
Keywords: chemotherapy, family, oncology, parent, pediatric

Identifiers

Local EPrints ID: 482019
URI: http://eprints.soton.ac.uk/id/eprint/482019
ISSN: 2752-7530
PURE UUID: 75c7b619-35a2-4333-bc76-51717955dde4

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Date deposited: 15 Sep 2023 16:34
Last modified: 17 Mar 2024 02:36

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Contributors

Author: Annabel L. David
Author: Helen C. Griffiths

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