Purpose: Children diagnosed with brain tumors increasingly survive to adulthood, although they do so with needs often requiring continued parental caregiving. We sought to describe the nature of caregivers' expectations about survivors' function and how expectations connect to ongoing management and decision-making.
Methods: Forty-five qualitative interviews with mother-caregivers were conducted and coded for themes related to expectations for their adolescent/young adult children living post-childhood brain tumors.
Results: Five main themes emerged as integral to mother-caregiver expectations: realizing a difference in the survivor, noticing limitations to independence in the survivor, memories of learning about clinical prognoses as understood from consent meetings and education, managing these realizations, and acknowledging unresolved challenges.
Conclusions: Caregiver expectations are influenced by both initial clinical interactions and contemporary family dynamics and require individual- and family-specific survivorship planning. As caregiver expectations can influence management behaviors that impact outcomes and possibly independence, implications for clinician-caregiver shared decision-making are substantial.
Keywords: Adolescent/young adult survivors; Communication; Decision-making; Oncology; Qualitative approaches.