Stuck Moments and Silver-Linings: The Spectrum of Adaptation Among Non-Bereaved and Bereaved Parents of Adolescents and Young Adults With Advanced Cancer

Abstract

ContextWith advances in treatments that have resulted in children living longer with serious illness, it is essential to understand how parents adapt to changes during the final stages of their child's life or after their child's death. ObjectiveTo examine the process by which parents adapt to their child's serious illness and death among a group of non-bereaved and bereaved parents of adolescents and young adults (AYAs) with advanced cancer. MethodsQualitative study exploring the experiences of parents of AYAs who were being treated for recurrent or refractory advanced cancer (nonbereaved parents) or had died from their disease (bereaved parents) at one large academic center. Participants completed demographic surveys and semi-structured interviews to better understand parent adaptation. Data were analyzed using content and thematic approaches. ResultsOf the 37 participating parents; 22 (59%) were non-bereaved and 15 (41%) were bereaved. The AYAs predominantly had hematologic malignancies (n = 18/34, 53%). Across both cohorts, parents described the process of adapting to their child's worsening health or death as moments of feeling stuck and moments of gratitude and meaning. ConclusionAdaptation to a child's serious illness and death likely occurs on a dynamic spectrum and parents may oscillate both cognitively and emotionally. This has important implications for how clinicians and communities support parents. Greater comfort with and normalization of the adaptation process may enable parents to more openly share both the unimaginable hardships and unexpected silver-linings that are part of their parenting experiences during their child's illness and death.