Objective To explore psychological distress experienced by parents who express a need for psychotherapy after curative treatment for their child’s cancer. Methods 15 parents (eight mothers and seven fathers) of children treated for cancer (median time since end of curative treatment: two years) were recruited via a pediatric oncology center. Each parent was interviewed twice and data was analyzed with inductive latent qualitative content analysis. Results Two overarching themes emerged. One theme, An unfamiliar and frightening situation during treatment , portrayed experiences during the treatment period, and included the sub-themes Initial reactions to the uncontrollable situation , Adjustment to the situation , and Focus on supporting the child . Another theme, Emotional struggles after end of curative treatment , portrayed experiences following curative treatment, and included the sub-themes Transitioning back to life as it was before the diagnosis , Emotional scars , Uncontrollable fears and worries of diseases , and New perspectives on life . Conclusions Parents of children with cancer experience existential, physical, psychological, and social struggles. They describe an unstable situation after diagnosis and having focused their attention towards protecting their child during treatment. After the end of curative treatment, they experience challenges with transitioning back to life as it was before the diagnosis and dealing with their own emotional scars and fears related to the child’s cancer. The findings indicate an unmet need for psychological support among parents of children treated for cancer.

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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.

Background: Parenting a child through cancer is a distressing experience and a subgroup of