Due to the complexity of cancer late effects, the education required to provide anticipatory guidance and support to the caregivers of adolescent and young adult (AYA) survivors of childhood brain tumors can be difficult. Therefore, identifying challenges to family management (FM) could be helpful in anticipating complications with the integration of tumor and treatment late effects into family life. Building on previous research that described FM for children with chronic conditions, children who survived cancer, and the Family Management Styles Framework, the purpose of this study was to identify FM challenges for caregivers of AYA survivors of childhood brain tumors to guide clinical practice and research. Directed content analysis was used to identify FM challenges in data from semistructured interviews with 45 maternal caregivers for AYA survivors of childhood brain tumors living with them. Caregivers were largely White (89%) with an average age of 52 years, educated beyond the high school level (67%), and were partnered or married (53%). On average, caregivers had been caring for the AYA for 21 years since diagnosis, and 56% of their survivors had moderate functional restrictions. A primary and a secondary analyst were assigned to the data for each interview and completed a single summary matrix. A list of challenges was created by the research team based on Family Management Styles Framework, the literature, and clinical expertise. Seven core challenges to FM were identified: ensuring survivor well-being, supporting survivor independence, encouraging sibling well-being, planning family activities, sustaining parents as caregivers, attending to survivor late effects, and providing support and advocacy.
Children undergoing cancer treatment are less active than healthy peers. Inactivity persists into survivorship, negatively influencing health and quality of life. Fatigue is one of the most prevalent symptoms during treatment yet children with increased physical activity (PA) have less fatigue. This pilot study evaluated the impact of coaching on PA and fatigue in children undergoing cancer treatment delivered by pediatric oncology nurse practitioners (NPs) during routine clinic visits. NPs used motivational interviewing during clinic visits to coach children and their families on strategies to increase PA at home. Self-report measures of PA and fatigue were completed at treatment months 2, 4, and 6. PA was also measured using actigraphy. Among 30 children ages 6 to 18 years, 7 had acute lymphoblastic leukemia (ALL), 11 had lymphoma, and 12 had solid tumors. Patterns of fatigue were different by disease group with trends to fatigue decreasing during treatment in the patients with ALL (p = .09) and lymphoma (p = .13) but increasing in those with solid tumors (p = .06). Self-report PA was unchanged. Actigraph measurements remained stable for the group. NPs reported time challenges in implementing coaching during the clinic visit and in providing coaching continuity. The intensive, repeating chemotherapy cycles in solid tumor treatment may contribute to increasing fatigue. Treatment intensity decreases during ALL and lymphoma treatment, which may allow for improvement in fatigue. Inactivity persisted during treatment but did not progress. Future research is needed to evaluate more "dose-intensive" PA interventions in larger samples of specific disease groups.