Measuring cancer-specific child adjustment difficulties: Development and validation of the Children's Oncology Child Adjustment Scale (ChOCs).

BACKGROUND: Childhood cancer is associated with child adjustment difficulties including, eating and sleep disturbance, and emotional and other behavioral difficulties. However, there is a lack of validated instruments to measure the specific child adjustment issues associated with pediatric cancer treatments. The aim of this study was to develop and evaluate the reliability and validity of a parent-reported, child adjustment scale. PROCEDURE: One hundred thirty-two parents from two pediatric oncology centers who had children (aged 2-10 years) diagnosed with cancer completed the newly developed measure and additional measures of child behavior, sleep, diet, and quality of life. Children were more than 4 weeks postdiagnosis and less than 12 months postactive treatment. Factor structure, internal consistency, and construct (convergent) validity analyses were conducted. RESULTS: Principal component analysis revealed five distinct and theoretically coherent factors: Sleep Difficulties, Impact of Child's Illness, Eating Difficulties, Hospital-Related Behavior Difficulties, and General Behavior Difficulties. The final 25-item measure, the Children's Oncology Child Adjustment Scale (ChOCs), demonstrated good internal consistency (α = 0.79-0.91). Validity of the ChOCs was demonstrated by significant correlations between the subscales and measures of corresponding constructs. CONCLUSION: The ChOCs provides a new measure of child adjustment difficulties designed specifically for pediatric oncology. Preliminary analyses indicate strong theoretical and psychometric properties. Future studies are required to further examine reliability and validity of the scale, including test-retest reliability, discriminant validity, as well as change sensitivity and generalizability across different oncology samples and ages of children. The ChOCs shows promise as a measure of child adjustment relevant for oncology clinical settings and research purposes.

Providing Psychological Support to Parents of Childhood Cancer Survivors: 'Cascade' Intervention Trial Results and Lessons for the Future.

We conducted a three-armed trial to assess Cascade, a four-module group videoconferencing cognitive behavior therapy (CBT) intervention for parents of childhood cancer survivors currently aged <18 years. We allocated parents to Cascade, an attention control (peer-support group), or a waitlist. The primary outcome was parents' health-related quality of life (PedsQL-Family Impact/EQ-5D-5L) six months post-intervention. Parents also reported their anxiety/depression, parenting self-agency, fear of recurrence, health service and psychotropic medication use, engagement in productive activities, confidence to use, and actual use of, CBT skills, and their child's quality of life. Seventy-six parents opted in; 56 commenced the trial. Cascade achieved good parent engagement and most Cascade parents were satisfied and reported benefits. Some parents expressed concerns about the time burden and the group format. Most outcomes did not differ across trial arms. Cascade parents felt more confident to use more CBT skills than peer-support and waitlisted parents, but this did not lead to more use of CBT. Cascade parents reported lower psychosocial health scores for their child than waitlisted parents. Cascade parents' health service use, psychotropic medication use, and days engaged in productive activities did not improve, despite some improvements in waitlisted parents. Our trial was difficult to implement, but participants were largely satisfied. Cascade did not improve most outcomes, possibly because many parents were functioning well pre-enrolment. We used these findings to improve Cascade and will trial the new version in future.

Online parent-targeted cognitive-behavioural therapy intervention to improve quality of life in families of young cancer survivors: study protocol for a randomised controlled trial.

BACKGROUND: Due to advances in multimodal therapies, most children survive cancer. In addition to the stresses of diagnosis and treatment, many families are now navigating the challenges of survivorship. Without sufficient support, the ongoing distress that parents experience after their child's cancer treatment can negatively impact the quality of life and psychological wellbeing of all family members. METHODS/DESIGN: The 'Cascade' (Cope, Adapt, Survive: Life after C AncEr) study is a three-arm randomised controlled trial to evaluate the feasibility and efficacy of a new intervention to improve the quality of life of parents of young cancer survivors. Cascade will be compared to a peer-support group control and a 6-month waitlist control. Parents (n = 120) whose child (under 16 years of age) has completed cancer treatment in the past 1 to 12 months will be recruited from hospitals across Australia. Those randomised to receive Cascade will participate in four, weekly, 90-minute online group sessions led live by a psychologist. Cascade involves peer discussion on cognitive-behavioural coping skills, including behavioural activation, thought challenging, mindfulness and acceptance, communication and assertiveness skills training, problem-solving and goal-setting. Participants randomised to peer support will receive four, weekly, 90-minute, live, sessions of non-directive peer support. Participants will complete measures at baseline, directly post-intervention, one month post-intervention, and 6 months post-intervention. The primary outcome will be parents' quality of life. Secondary outcomes include parent depression, anxiety, parenting self-agency, and the quality of life of children in the family. The child cancer survivor and all siblings aged 7 to 15 years will be invited to complete self-report quality of life measures covering physical, emotional, social and school-related domains. DISCUSSION: This article reviews the empirical rationale for group-based, online cognitive-behavioural therapy in parents of children who have recently finished cancer treatment. The potential challenges of delivering skills-based programs online are highlighted. Cascade's videoconferencing technology has the potential to address the geographic and psychological isolation of families after cancer treatment. Teaching parents coping skills as they resume their normal lives after their child's cancer may see long-term benefits for the quality of life of the family as a whole. TRIAL REGISTRATION: ACTRN12613000270718 (registered 6 March 2013).