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

Eur J Cancer Care (Engl). 2021 Jul;30(4):e13417. doi: 10.1111/ecc.13417. Epub 2021 Jan 29.

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.

Keywords: adolescent cancer; cancer-related distress; parental distress.

MeSH terms

  • Adolescent
  • Adolescent Behavior*
  • Adult
  • Child
  • Emotions
  • Humans
  • Neoplasms*
  • Parent-Child Relations
  • Parenting
  • Parents
  • Qualitative Research