2018
DOI: 10.2196/jmir.9457
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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

Abstract: BackgroundParenting 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.ObjectiveOne aim of this study was to develop an internet-administered, cognitive behavior therapy–based, psychological, guided, self-help intervention (ENGAGE)… Show more

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Cited by 27 publications
(33 citation statements)
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“…Indeed, a review of interventions for informal caregivers of stroke survivors recommended telephone or internet-administered support to increase access for this population (Bakas et al, 2014). However, evidence indicates that adapting LICBT interventions to represent the needs of specific populations is required to improve acceptability and engagement with adaptations made to interventions for Armed Forces veterans (Farrand et al, 2019), people with dementia (Farrand et al, 2016) and parents of children treated for cancer (Wikman et al, 2018). Failing to adapt LICBT interventions for specific populations may also account for smaller effect sizes experienced by people with chronic health conditions compared with an adult mental health population (Beatty and Lambert, 2013;Farrand and Woodford, 2015), whereas tailoring psychological interventions for informal caregivers resulted in interventions being more effective than non-tailored interventions (Bakas et al, 2014).…”
Section: Introductionmentioning
confidence: 99%
“…Indeed, a review of interventions for informal caregivers of stroke survivors recommended telephone or internet-administered support to increase access for this population (Bakas et al, 2014). However, evidence indicates that adapting LICBT interventions to represent the needs of specific populations is required to improve acceptability and engagement with adaptations made to interventions for Armed Forces veterans (Farrand et al, 2019), people with dementia (Farrand et al, 2016) and parents of children treated for cancer (Wikman et al, 2018). Failing to adapt LICBT interventions for specific populations may also account for smaller effect sizes experienced by people with chronic health conditions compared with an adult mental health population (Beatty and Lambert, 2013;Farrand and Woodford, 2015), whereas tailoring psychological interventions for informal caregivers resulted in interventions being more effective than non-tailored interventions (Bakas et al, 2014).…”
Section: Introductionmentioning
confidence: 99%
“… 18 Subsequently, a participatory action research (PAR) 19 approach was adopted to inform the design, content and delivery of the intervention in collaboration with parent and expert research partners. 20 Finally, an online survey study, utilising a population-based cross-sectional design, further examined preferences regarding study procedures, for example, type of controlled design and mode of recruitment (letter vs postal card)(‘Personal communication’ by J Woodford, 20180406). Parents of children who had completed cancer treatment were invited to complete the survey, with 32% (n=112) of 350 responding.…”
Section: Introductionmentioning
confidence: 99%
“…The value of researcher-stakeholder collaboration is widely recognized (Wikman et al, 2018), but a strategy is required to put it into practice. To aid clarity, we distinguish the decisions about stakeholder involvement in the design of research from designing for stakeholder involvement in the research.…”
Section: Consultation and Codesignmentioning
confidence: 99%
“…These approaches are characterized by shifting beyond input of stakeholders at selected points to invite codesign that may involve partnership, shared ideas, and control over the orientation and focus of the research. The lived experience and expertise of those who may use this intervention are located as central to research efforts (Wikman et al, 2018). While different studies will have varied aims and input needs, we hold that decisions regarding stakeholder collaboration at any point during the research should be consciously and explicitly engaged with, even where a determination is made not to invite collaboration.…”
Section: Consultation and Codesignmentioning
confidence: 99%