Although most children remain well-adjusted during the first year of treatment, many caregivers experience clinically relevant symptoms of psychological distress. Implications for development of interventions targeting at-risk patients and caregivers are discussed. Identifying processes that predict between-family variability in trajectories of psychopathology is an important next step. (PsycINFO Database Record
Research on adolescents and young adults (AYAs) with cancer has flourished over the past decade, underscoring the unique medical and psychosocial needs of this vulnerable group. A cancer diagnosis during adolescence and young adulthood intersects with the developmental trajectory of AYAs, derailing critical physical, social, and emotional development. AYAs face these abrupt life changes needing age-appropriate information and resources to offset these challenges. Greater attention is needed to address AYA-specific concerns on reproductive and sexual health, financial security and independence, emotional well-being, social support, and end-of-life care. If these unique needs are unaddressed, this can adversely affect AYAs’ health care engagement and overall quality of life, increasing their risk for cancer-related morbidity and early mortality. In particular, health care decisions made during treatment have important implications for AYA patients’ future health. Oncology clinicians are well positioned to address AYA patients’ concerns by anticipating and addressing the challenges this age group is likely to face. In this paper, we explore several core topics that affect AYAs’ quality of life and that can be challenging to address. Starting from the moment of diagnosis, through cancer treatment and post-treatment survivorship, and into end of life, each section highlights critical developmental-centric life domains that are affected by the cancer experience. Specifically, we discuss resources, tools, and strategies to navigate these challenging conversations. Taking a risk-reduction approach that invites two-way communication and facilitates referral to age-appropriate resources would help destigmatize these experiences and, in turn, would support the provision of compassionate and effective age-concordant care to this vulnerable group.
Introduction It is well-known that parental stress and coping impacts the well-being of children with serious illness. The current study aimed to evaluate the feasibility and satisfaction of a novel resilience promoting intervention, the Promoting Resilience in Stress Management Intervention for Parents (PRISM-P) among parents of adolescents and young adults with type 1 diabetes or cancer. Secondary analyses explored the effect of the PRISM-P on parent-reported resilience and distress. Methods The PRISM-P includes four short skills-based modules, delivered in either 2 or 4 separate, individual sessions. English-speaking parents of adolescents with cancer or type 1 diabetes were eligible. Feasibility was conservatively defined as a completion rate of 80%; satisfaction was qualitatively evaluated based upon parent feedback regarding intervention content, timing, and format. Resilience and distress were assessed pre- and post-intervention with the Connor Davidson Resilience Scale and the Kessler-6 Psychological Distress Scale. Results Twelve of 24 caregivers of youth with diabetes (50%) and 13 of 15 (87%) caregivers of youth with cancer agreed to participate. Nine of 12 (75%) and 9 of 13 (64%) completed all PRISM-P modules, respectively. Among those who completed the intervention, qualitative satisfaction was high. Parent-reported resilience and distress scores improved after the intervention. Effect sizes for both groups indicated a moderate intervention effect. Discussion Ultimately, the PRISM-P intervention was well-accepted and impactful among parents who completed it. However, attrition rates were higher than anticipated, suggesting alternative or less time-intensive formats may be more feasible.
Background Few evidence‐based psychosocial programs have been tested among adolescents and young adults (AYAs) with advanced cancer (AC), and early advance care planning (ACP) in this population is rare. The authors aimed to determine the feasibility and acceptability of 1) delivering an established resilience‐coaching program, and 2) integrating ACP into that program, among AYAs with AC. Methods Eligible AYAs were 12 to 24 years old, diagnosed with advanced cancer (recurrent/refractory disease or a diagnosis associated with <50% survival) and fluent in English. The Promoting Resilience in Stress Management–Advanced Cancer (PRISM‐AC) program included PRISM's standard sessions targeting stress‐management, goal‐setting, cognitive‐restructuring, and meaning‐making, delivered 1:1, 1 to 2 weeks apart, plus a new session involving elements of the AYA‐specific Voicing My Choices ACP guide. Participants completed surveys at baseline and 12 weeks, and exit interviews following study completion. Feasibility was defined as ≥70% completion of 1) standard 4‐session PRISM and 2) the new ACP session among those completing standard PRISM. Acceptability was defined qualitatively. Trajectories of patient‐reported anxiety, depression, and hope were examined descriptively. Results Of 50 eligible, approached AYAs, 26 (52%) enrolled and completed baseline surveys. The AYAs had a mean age of 16 years (SD = 2.7 years), and the majority were male (73%) and White/Caucasian (62%). Twenty‐two AYAs (85%) completed standard PRISM, and of those, 18 (82%) completed the ACP session. Feedback was highly positive; 100% and 91% described the overall and ACP programs as valuable, respectively. Anxiety, depression, and hope were unchanged after the program. Conclusions Resilience coaching followed by integrated ACP is feasible and acceptable for AYAs with AC. Participating did not cause distress or decrease hope. Lay Summary Advance care planning (ACP) among adolescents and young adults (AYAs) with advanced cancer can be difficult to introduce. We investigated whether it is feasible and acceptable to integrate ACP into an existing resilience‐coaching program for AYAs. In this cohort study of 26 AYAs with advanced cancer, we found the Promoting Resilience in Stress Management–Advanced Cancer program to be feasible (≥70% intervention‐completion) and highly acceptable (positive post‐participation feedback, no evidence of participant‐distress). We conclude that an intervention integrating resilience coaching and ACP is feasible and acceptable among AYAs with advanced cancer.
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