Parental experiences of adolescent cancer-related distress: A qualitative study

Abstract

Objective: Adolescents' cancer-related distress is more complex, severe, and long-lasting than that of children and adults. Parents adopt an active role in supporting their adolescent, reporting that adolescent cancer-related distress is the most problematic symptom parents experience. Research has predominantly focused on exploring adolescents' experiences of cancer-related distress, with little attention to how their parents experience their adolescent's cancer-related distress. Therefore, we aimed to explore parents' experiences of distress within the context of parenting an adolescent with cancer-related distress during or immediately subsequent to active treatment. Methods: A total of 21 semi-structured interviews were conducted face-to-face or via telephone, with parents of adolescents aged 12–18 years from south-west England. Inductive reflexive thematic analysis was used to analyse the data. Results: Three themes were generated: “The contagion of distress”, “Navigating breaking point” and “Developmental disruption”. Parental distress transcended from adolescent cancer-related distress, eliciting uncertainty and challenging parenting limits. Parental distress was perpetuated by feelings that their adolescent had missed out on “normal” adolescence during and just after active treatment. Conclusion: Parental distress reflected the multi-faceted nature of their adolescent's cancer-related distress. Findings advocate the importance of providing a parental voice within adolescent oncology populations. Developing tailored interventions to address parental distress are suggested.