Background: Adolescents and Young Adults (AYAs) with cancer are at risk for poor psychosocial outcomes, perhaps because they have not acquired skills to navigate adversities of illness. In a recent phase II randomized controlled trial (RCT), the “Promoting Resilience in Stress Management” (PRISM) intervention was associated with improved patient-reported resilience, quality of life and distress. In this planned analysis of secondary aims, we hypothesized PRISM would also improve targeted coping skills of hopeful thinking, benefit-finding, and goal-setting. Methods: We conducted this parallel RCT at Seattle Children’s Hospital from Jan/2015-Oct/2016. English-speaking AYAs (13–25 years-old) with cancer were randomized one-to-one to PRISM or usual care (UC). PRISM teaches stress-management, goal-setting, cognitive-reframing, and meaning-making skills in four sessions delivered in-person every other week. Participants completed surveys at enrollment and 6-months later. Mixed effects linear regression models evaluated associations between PRISM and benefit-finding (Benefit-Finding Scale for Children), hopeful thinking (Hope Scale), and an exploratory outcome of goal-setting (queried with open-ended items about participant’s goals, measured qualitatively by 3 blinded reviewers). Results: Of N=92 AYAs (48 PRISM, 44 UC), 73% were 13–17 years-old, 43% female, and 62% diagnosed with leukemia or lymphoma. PRISM was associated with improved benefit-finding and hope with moderate-to-large effect sizes: Benefit-finding: +3.1 points, 95% CI 0.0,6.2, d=0.4, p=0.05; Hope: +3.6 points, 95% CI 0.7,6.4, d=0.6, p=0.01. We did not detect changes in goal-setting (−0.5 points, 95% CI −1.2,0.3, d=−0.3, p=0.23). Conclusions: PRISM was associated with improvements in benefit-finding and hopeful thinking, two adaptive coping skills which may mitigate long-term psychosocial risk.

AYA self-identities evolve during the illness experience. When words such as "religion" and "spirituality" do not fit, explicitly exploring hopes, worries, meaning, and changing life perspectives may be a promising alternative.

Parents of children who undergo clinical genetic testing have significant informational and emotional support needs at different stages of the testing process. We analyzed parent views about use of both the internet and social media to help meet these needs. We interviewed 20 parents of children who underwent clinical genetic testing and analyzed transcripts to identify themes related to internet and social media use. Parents described using the internet to search for information at three stages of the genetic testing process: before testing, pending results return, and after results return. Each stage corresponded to different information vacuums and needs. Parents also described using condition-specific Facebook groups to learn more about their child's condition and to find support networks of families with similar experiences in ways that were challenging using non-social media approaches. Both the internet and social media play important roles in meeting informational and support needs in pediatric genetic testing, especially for rare conditions. Providers should consider engaging parents at different stages of the testing process about their use of the internet and social media, and consider directing them to vetted sites and groups as part of shared decision making and to improve satisfaction and outcomes.

As genomic researchers are encouraged to engage in broad genomic data shar­ing, American Indian/Alaska Native/Native Hawaiian (AI/AN/NH) leaders have raised questions about ownership of data and biospecimens and concerns over emerging challenges and potential threats to tribal sovereignty. Using a community-engaged research approach, we conducted 42 semi-structured interviews with tribal lead­ers, clinicians, researchers, policy makers, and tribal research review board members about their perspectives on ethical issues related to genetics in AI/AN/NH communi­ties. We report findings related to perspec­tives on genetic research, data sharing, and envisioning stronger oversight and manage­ment of data. In particular, participants voiced concerns about different models of data sharing, infrastructure and logistics for housing data, and who should have authority to grant access to data. The results will ultimately guide policy-making and the creation of guidelines and new strategies for tribes to drive the research agenda and promote ethically and culturally appropriate research.Ethn Dis.2019;29(Suppl 3):659-668;doi:10.18865/ed.29.S3.659