Development of an internet-administered cognitive behavior therapy program (ENGAGE) for parents of children previously treated for cancer: participatory action research approach

Wikman, Anna; Kukkola, Laura; Börjesson, Helene; Cernvall, Martin; Woodford, Joanne; Grönqvist, Helena; von Essen, Louise

doi:10.2196/jmir.9457

Cited by 32Digital Mental Health InterventionsCancer survivorship and careChildhood Cancer Survivors' Quality of Life

Development of an internet-administered cognitive behavior therapy program (ENGAGE) for parents of children previously treated for cancer: participatory action research approach

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Wikman, Anna, Kukkola, Laura, Börjesson, Helene, Cernvall, Martin, Woodford, Joanne, Grönqvist, Helena, von Essen, Louise·2018·Journal of Medical Internet Research

DOI 10.2196/jmir.9457PMC PMC5932329

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Abstract

BACKGROUND: Parenting a child through cancer is a distressing experience, and a subgroup of parents report negative long-term psychological consequences years after treatment completion. However, there is a lack of evidence-based psychological interventions for parents who experience distress in relation to a child's cancer disease after end of treatment. OBJECTIVE: One aim of this study was to develop an internet-administered, cognitive behavior therapy-based, psychological, guided, self-help intervention (ENGAGE) for parents of children previously treated for cancer. Another aim was to identify acceptable procedures for future feasibility and efficacy studies testing and evaluating the intervention. METHODS: Participatory action research methodology was used. The study included face-to-face workshops and related Web-based exercises. A total of 6 parents (4 mothers, 2 fathers) of children previously treated for cancer were involved as parent research partners. Moreover, 2 clinical psychologists were involved as expert research partners. Research partners and research group members worked collaboratively throughout the study. Data were analyzed iteratively using written summaries of the workshops and Web-based exercises parallel to data collection. RESULTS: A 10-week, internet-administered, cognitive behavior therapy-based, psychological, guided, self-help intervention (ENGAGE) was developed in collaboration with parent research partners and expert research partners. The content of the intervention, mode and frequency of e-therapist support, and the individualized approach for feedback were modified based on the research partner input. Shared solutions were reached regarding the type and timing of support from an e-therapist (eg, initial video or telephone call, multiple methods of e-therapist contact), duration and timing of intervention (eg, 10 weeks, 30-min assessments), and the removal of unnecessary support functions (eg, removal of chat and forum functions). Preferences for study procedures in future studies testing and evaluating the intervention were discussed; consensus was not reached for all aspects. CONCLUSIONS: To the best of our knowledge, this study is the first use of a participatory action research approach to develop a psychological intervention for parents of children previously treated for cancer and to identify acceptable study procedures. Involvement of parents with lived experience was vital in the development of a potentially relevant and acceptable intervention for this population.

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The intervention and study protocol were designed with input from participants using a PAR approach, cofacilitated by a member of the research team and a parent of a child successfully treated for cancer.
“The intervention and study protocol were designed with input from participants using a PAR approach, which was cofacilitated by a member of the research team and a parent of a child successfully treated for cancer.20”
From Study protocol for a feasibility study of an internet-administered, guided, CBT-based, self-help intervention (ENGAGE) for parents of children previously treated for cancer (2018) · cites this paper as [20]

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Additional file 1 of Involving parents of children treated for cancer in Sweden as public contributors to inform the design and conduct of an evaluation of internet-administered self-help for parents of children treated for cancer: a protocol
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The acceptability and feasibility of an internet-administered, guided, low-intensity cognitive behavioural therapy intervention for parents of children treated for cancer: findings from a qualitative study involving public contributors
Thiblin, E., Lundgren, J., Bergqvist, M., Huynh, T. N. T., Reuther, C., Rösler, S., Woodford, J., & von Essén, L. (2025) · BMC Psychiatry · doi:10.1186/s12888-025-06897-y · Cited by 3 · see citing works
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Study protocol for a feasibility study of an internet-administered, guided, CBT-based, self-help intervention (ENGAGE) for parents of children previously treated for cancer
Woodford, J., Wikman, A., Cernvall, M., Ljungman, G., Romppala, A., Grönqvist, H., & von Essen, L. (2018) · BMJ Open · doi:10.1136/bmjopen-2018-023708 · Cited by 31 · see citing works
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Internet‐administered, low‐intensity cognitive behavioral therapy for parents of children treated for cancer: A feasibility trial ( ENGAGE )
Thiblin, E., Woodford, J., Reuther, C., Lundgren, J., Lutvica, N., & von Essén, L. (2022) · Cancer Medicine · doi:10.1002/cam4.5377 · Cited by 17 · see citing works
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Internet-Administered Cognitive Behavioral Therapy for Common Mental Health Difficulties in Parents of Children Treated for Cancer: Intervention Development and Description Study
Woodford, J., Farrand, P. A., Hagström, J., Hedenmalm, L., & von Essén, L. (2021) · JMIR Formative Research · doi:10.2196/22709 · Cited by 28 · see citing works
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E-therapists’ views on the acceptability and feasibility of an internet-administered, guided, low-intensity cognitive behavioural therapy intervention for parents of children treated for cancer: A qualitative study
Reuther, C., Lundgren, J., Gottvall, M., Ljungberg, J., Woodford, J., & von Essén, L. (2024) · Digital Health · doi:10.1177/20552076241260513 · Cited by 6 · see citing works
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Authors: Wikman, A., Kukkola, L., Börjesson, H., Cernvall, M., Woodford, J., Grönqvist, H., & von Essen, L.
Affiliations: Uppsala University (SE)
Corresponding author: Wikman, Anna
ORCID: Wikman, Anna
Kukkola, Laura
Börjesson, Helene
Cernvall, Martin
Woodford, Joanne
Grönqvist, Helena
von Essen, Louise
Venue: Journal of Medical Internet Research
Publisher: JMIR Publications Inc.
Published: 2018-04-18
Volume: 20
Issue: 4
Pages: e133
ISSN: 1438-8871 (ISSN-L)
DOI: 10.2196/jmir.9457
PMC: PMC5932329
OpenAlex: W2799662514
Cited by: 32
References: 36
Citations by year: 2026: 2 · 2025: 4 · 2024: 6 · 2023: 2 · 2022: 6 · 2021: 2 · 2020: 5 · 2019: 2 · 2018: 3
FWCI: 3.78
Type: journal article
Language: en
Open access: gold
doi.org
Licence: cc-by
Locations: Journal of Medical Internet Research (publishedVersion, cc-by)
Europe PMC (PubMed Central) (publishedVersion, cc-by)
PubMed Central (publishedVersion, cc-by)
PubMed (publishedVersion)
Funders: Cancerfonden
Topics: Social Sciences › Psychology › Applied Psychology › Digital Mental Health Interventions
Health Sciences › Medicine › Oncology › Cancer survivorship and care
Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
Keywords: cognitive behavioral therapy, online intervention, self-help intervention, parents of children with cancer, childhood cancer survivors, participatory action research, intervention development, feasibility and acceptability
MeSH terms: Adolescent, Adult, Child, Child, Preschool, Female, Health Services Research, Humans, Male, Neoplasms, Parents, Research Design, Cognitive Behavioral Therapy, Internet

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Development of an internet-administered cognitive behavior therapy program (ENGAGE) for parents of children previously treated for cancer: participatory action research approach

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