P0544 - How We Get Through Each Day: Resilience Among Parents of Adolescents and Young Adults with Advanced Cancer

Background: The challenges of parenting an adolescent and young adult (AYA) are significant and distinct from that of parenting younger children with cancer or healthy AYAs. Little is known about how best to support parents in these difficult circumstances, particularly when their child goes through multiple relapses and may die from their disease. This qualitative study aimed to explore parental perspectives on challenges and sources of strength while parenting an AYA with advanced cancer.

Methods: We interviewed parents of AYAs between the ages of 14-25 years who were treated for advanced cancer (defined as relapsed or refractory disease) between December 2017-July 2018. One-on-one, semi-structured interviews focused on parents’ perceptions of their experience, needs, and recommendations for other parents and/or clinicians. This is a subset of a larger project, the “Exploring the Concept of a ‘Good Death’” study, in which similar interviews were conducted with healthcare providers, AYAs, bereaved parents and non-bereaved parents. For this cohort, a codebook was developed using an a priori list of themes previously generated from a set of similar interviews conducted with bereaved parents of AYAs who died of advanced cancer. At least three coders reviewed all transcribed interviews using directed content analyses. Two investigators coded all transcripts and a third coder performed intermittent quality checks to resolve discrepancies. The full team met to reach consensus on initial themes and for further thematic analysis.

Results: A total of 22 parents participated. They were predominately female, white, non-Hispanic, and married; although 23% percent were from underrepresented minority groups. Parents’ descriptions of their personal sources of strength and areas of struggle fell into themes that map to three identified domains of resilience resources, including: (1) internal resilience resources; (2) external/community resources; and (3) existential/spiritual resources. Themes of internal resilience included: taking things day-by-day and staying in the moment; choosing to focus on the positive and maintaining hope; and seeing things through the lens of gratitude and frequent perspective-taking. External resilience resources included: family and friends; pediatric cancer community; and relationships with trusted healthcare professionals. Existential resilience resources included: religion, spirituality, and prayer; nature and time alone; and talking about what happens after death.

Conclusions: Parenting AYAs with advanced cancer is highly stressful and presents unique challenges. Parents described drawing from internal, external, and existential resilience resources as sources of strength. Opportunities exist to improve our support of parents by highlighting and bolstering internal and existential resilience resources, as well as strengthening relationships and sources of community within the healthcare system.