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) 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.MethodsParticipatory 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.ResultsA 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.ConclusionsTo 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.

Supported cognitive-behavioural therapy self-help versus treatment-as-usual for depressed informal caregivers of stroke survivors (CEDArS): feasibility randomised controlled trial

“…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).…”

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

“… 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.…”

How Do We Work as Researchers in the Real World? Mapping the Trajectory of Methodological Decision Making in Health Services Research

“…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.…”

“…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.…”