Background To reduce the risk of adjustment problems associated with Hematopoietic Stem Cell Transplant (HSCT) for adolescents/young adults (AYA), we examined efficacy of a therapeutic music video (TMV) intervention delivered during the acute phase of HSCT to: (a) increase protective factors of spiritual perspective, social integration, family environment, courageous coping, and hope-derived meaning; (b) decrease risk factors of illness-related distress and defensive coping; and (c) increase outcomes of self-transcendence and resilience. Methods A multi-site, randomized controlled trial (COG-ANUR0631) conducted at 8 Children’s Oncology Group sites involving 113 AYA aged 11–24 years undergoing myeloablative HSCT. Participants, randomized to the TMV or low-dose control (audiobooks) group, completed 6 sessions over 3 weeks with a board-certified music therapist. Variables were based on Haase’s Resilience in Illness Model. Participants completed measures related to latent variables of illness-related distress, social integration, spiritual perspective, family environment, coping, hope-derived meaning and resilience at baseline (T1), post-intervention (T2), and 100-days post-transplant (T3). Results At T2, the TMV group reported significantly better courageous coping (ES=0.505; P=0.030). At T3, the TMV group reported significantly better social integration (ES=0.543; P=.028) and family environment (ES=0.663; P=0.008), as well as moderate non-significant effect sizes for spiritual perspective (E=0.450; P=0.071) and self-transcendence (ES=0.424; P=0.088). Conclusion The TMV intervention improves positive health outcomes of courageous coping, social integration, and family environment during a high risk cancer treatment. We recommend the TMV be examined in a broader population of AYA with high risk cancers.

Purpose This paper describes parental perspectives on the helpfulness and meaningfulness of a behavioral health music therapy intervention targeted to adolescents/young adults (AYA) with cancer undergoing stem cell transplantation. We demonstrate how qualitative methods may be used to understand critical aspects of an intervention and mechanisms by which the intervention impacts the target AYA outcomes resilience and quality of life. Methods A qualitative descriptive design was used to obtain parents’ perspectives. Maximum variation purposive sampling was used to sample 16 parents whose AYA had been randomized to the intervention group. A semi-structured, open-ended interview was conducted between 100 and 160 days following their AYA’s transplant. Results Results are grouped into three categories: (1) helpfulness and meaningfulness of the intervention to AYA adjustment to the transplantation experience; (2) helpfulness and meaningfulness of the intervention for parents; and (3) AYA ability to participate in the intervention during acute phase of transplantation. Conclusions Parents observed and interacted with their AYA who participated in a targeted, behavioral intervention. Thus parents were able to describe mechanisms through which the intervention was helpful and meaningful for the AYA and indirect personal benefits for themselves. The results suggest the importance of the targeted outcomes identified in the Resilience in Illness Model and mechanisms of action in the Contextual Support Model of Music Therapy and identifies approaches for future study.

The purpose of this study was to examine hope and spiritual well-being, with its 2 dimensions of religious well-being and existential well-being, as they relate to age and gender among adolescents with cancer. A cross-sectional design was guided by the conceptual framework, Adolescent Psychosocial Adaptation to the Cancer Experience. A total of 78 adolescents with a diagnosis of cancer were enrolled from 2 pediatric oncology clinics. Middle adolescents (15-17 years of age) reported higher religious well-being than late adolescents (18-20 years of age). Middle-adolescent boys were more hopeful than were early adolescent boys (13- 14 years of age). Also, girls were more hopeful and reported higher spiritual well-being than age the boys. Developmental phase and/or gender may influence adolescents' levels of hope, spiritual well-being, religious well-being, and existential well-being as they cope during the cancer experience. The nurse should consider developmental phase and gender when planning interventions to foster hope and spiritual well-being in adolescents' adaptations to the cancer experience.

This study examines the relationships of hope and spiritual well-being (SWB)--and its dimensions, religious well-being (RWB) and existential well-being (EWB)--to time since diagnosis among adolescents with cancer. A descriptive cross-sectional design was used. The sample of 78 adolescents diagnosed with cancer was recruited from two pediatric oncology clinics. Adolescents in the first two time periods reported significantly higher levels of SWB, RWB, and EWB than those in subsequent time periods. Hope did not significantly vary over time. Hence, time since diagnosis may influence adolescents' levels of SWB and its dimensions during the cancer experience. Adolescents' use of SWB, RWB, and EWB as coping resources should be examined in longitudinal studies from diagnosis through survivorship.

A diagnosis of childhood cancer is a life-changing event for the entire family. Parents must not only deal with the cancer diagnosis but also acquire new knowledge and skills to safely care for their child at home. Best practices for delivery of patient/family education after a new diagnosis of childhood cancer are currently unknown. The purpose of this systematic review was to evaluate the existing body of evidence to determine the current state of knowledge regarding the delivery of education to newly diagnosed pediatric oncology patients and families. Eighty-three articles regarding educational methods, content, influencing factors, and interventions for newly diagnosed pediatric patients with cancer or other chronic illnesses were systematically identified, summarized, and appraised according to the GRADE criteria. Based on the evidence, ten recommendations for practice were identified. These recommendations address delivery methods, content, influencing factors, and educational interventions for parents and siblings. Transferring these recommendations into practice may enhance the quality of education delivered by healthcare providers, and received by patients and families following a new diagnosis of childhood cancer.

Research is needed to examine new and innovative web-based intervention delivery methods that are feasible, cost-effective, and acceptable to children and their families to increase access to palliative care services in the home and community. Our previous work included the development of a legacy intervention using face-to-face digital storytelling for children with cancer that showed feasibility and strong promise to improve child outcomes. However, face-to-face intervention delivery techniques limited our recruitment, thus decreasing sample size and potential access to broader populations. Here we present the systematic steps of the development of a web-based legacy intervention for children (7-17 years of age) with relapsed or refractory cancer and their parent caregivers. Counts and frequencies for parent (n = 81) reports on satisfaction surveys are presented and parent suggestions for future work. Results suggest the web-based legacy intervention is feasible and acceptable, with parent-perceived beneficial outcomes for the child, parent, and family. Results provide a foundation for web-based intervention development in palliative care and the implementation of a theoretically grounded intervention to reduce suffering of seriously ill children and their family members, thereby advancing the science of symptom management in vulnerable palliative care populations.

Symptoms experienced by dying children during the last week of life and symptom-management strategies used by pediatric hospice programs to support dying children and their families have not been well described. Additional research is warranted to further identify pediatric symptoms at the end of life and effective symptom-management strategies.

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