What helps distressed Australian adolescents impacted by cancer? Mechanisms of improvement of the PEER program.

PEER is a four-day residential program for adolescents impacted by their own or a relative's cancer, with both psychosocial (acceptance and commitment therapy, self-compassion) and recreational components. This study aimed to determine whether previously observed improvements in quality of life amongst highly distressed participants were mediated by improvements in processes targeted by psychotherapeutic elements of the program (psychological flexibility, mindfulness, self-compassion, peer support, distress). Adolescents attending PEER completed surveys assessing the quality of life and proposed mediator variables at pre-program, post-program and two-month follow-up. Adolescents experiencing high/very high levels of baseline distress (n = 52; 5 patients/survivors, 31 siblings/offspring, 13 bereaved siblings/offspring) were previously identified as experiencing clinically significant improvements in psychosocial well-being; here, mediation analyses explored whether these improvements were associated with improvements in process variables. Findings evidenced improvements in quality of life amongst distressed PEER participants, mediated by increases in psychological flexibility and self-compassion, and reductions in distress. Peer support and mindfulness were not significant mediators. Together, this suggests that the psychosocial benefits of PEER observed for highly distressed adolescents are linked to the specific therapeutic approaches used in the program, rather than being non-specific effects of peer connection or recreation. Findings from this evaluation provide further evidence for the efficacy and mechanisms of the effect of PEER for supporting distressed adolescents impacted by cancer. The study also demonstrates the viability and utility of the therapeutic approaches (acceptance and commitment therapy, self-compassion) used, showing that they have psychosocial benefits for this population.

Feasibility, Acceptability, and Psychosocial Outcomes of a Mindfulness-Based Interactive e-Book for Young People with Cancer.

Purpose: Receiving a cancer diagnosis for young people is likely to adversely impact the individual's quality of life. Mindfulness-based interventions (MBIs) are an emerging strategy used to improve psychosocial well-being. However, challenges have been reported in relation to adherence and accessibility of face-to-face mindfulness programs among young people. This study examined the feasibility and acceptability of a mindfulness-based interactive e-Book to improve psychosocial well-being of young people with cancer. Methods: Concurrent mixed methods approach with a pre-intervention-post-intervention survey and semistructured interviews evaluated the feasibility and acceptability of a MBI delivered over a 6-week period, and its effect on psychosocial well-being of young people with cancer 15 to 24 years of age. Results: Of the 31 young people, both survivors and on active treatment, enrolled in the study, 20 (64.5%) completed the post-intervention survey. Textual data and interviews (n = 3) revealed that young people enjoyed the intervention and found it useful and easy to navigate, but wanted more attention paid to cancer-specific stressors, as well as opportunities for face-to-face or online interactions. Psychosocial well-being measures demonstrated a statistically significant decrease in depressive symptoms (2.35 to 1.25, p = 0.03) and psychological distress (23.63 to 19.79, p = 0.03), along with nonsignificant increases in mindfulness (20.05 to 22.9, p = 0.08) and quality of life (62.0 to 69.1, p = 0.13). Conclusion: Young people found the self-help MBI, delivered in an interactive e-Book platform, useful and acceptable. There were psychosocial benefits, although recruitment and retention were study challenges and can be improved in future research.

The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care.

Adolescents and young adults (aged 15-25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016-17 and 2019-20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults.

Mindfulness-Based Interventions for Young People With Cancer: An Integrative Literature Review.

BACKGROUND: Mindfulness-based interventions (MBIs) have demonstrated benefits for adults with chronic illness and are becoming increasingly popular among children and young people. Mindfulness-based interventions could have benefits for young people with cancer throughout the treatment journey, through to survivorship. OBJECTIVE: The aim was to review intervention studies about MBI used with young people with cancer between the ages of 10 and 29 years. METHODS: Six electronic databases were searched. The methodological quality of the included studies was assessed using the Joanna Briggs Institute critical appraisal tools. RESULTS: Six contemporary studies met the inclusion criteria. Three studies adapted MBI to be age appropriate and some studies modified the intervention based on cancer-specific needs of young people. Formal and informal MBI activities were found to be acceptable by young people; however, recruitment of the participants was identified as a barrier. Variability in psychosocial outcomes was noted in the review by some demonstrating improvement in areas such as mindfulness, anxiety, and social isolation and others not eliciting significant benefits. CONCLUSIONS: Mindfulness-based intervention shows promise as an acceptable intervention that may improve psychosocial well-being for young people with cancer. Future research studies with adequate sample sizes are warranted to determine the effectiveness of MBI among young people with cancer. IMPLICATIONS FOR PRACTICE: Mindfulness-based intervention seems to be a promising approach to promote psychosocial well-being and reduce disease burden in young people with cancer. As validated MBI may be implemented without expert training, this could be promoted by healthcare providers, including nurses who care for young people with cancer.

Development and piloting of 'When Cancer Comes Along': A cancer awareness program for Australian secondary school students.

ISSUE ADDRESSED: Given the increasing prevalence of cancer, there is a growing need for health interventions educating individuals about the disease and its impacts, risk-reduction strategies and how to support others who are affected. School-based programs are a promising medium addressing these issues in adolescents, yet no comprehensive cancer education program exists in Australia. This paper reports on the piloting of a cancer awareness program for Australian students. METHODS: When Cancer Comes Along is a 90-minute interactive presentation covering cancer's impacts, risk-reduction strategies and how to support those affected. The program was piloted in four Australian secondary schools, with students (N = 113, 13-16 years) and teachers (N = 2) providing feedback via postprogram survey. RESULTS: Participants reported high satisfaction overall (92%-97%) and with each program component (71%-95%), and agreed that the program achieved learning outcomes (72%-95%). CONCLUSIONS: Results indicate that When Cancer Comes Along is relevant, engaging and age-appropriate. Participants reported improved understanding of cancer, its impacts, risk-reduction strategies and how to support those affected. A larger-scale evaluation is underway to more comprehensively evaluate program outcomes. SO WHAT?: The program has potential in educating students about various aspects of the cancer experience. It further demonstrates the feasibility and value of addressing psychosocial impacts and support strategies as well as information about cancer risks, elements which have not previously been combined in educational interventions. Equipping adolescents with the knowledge and skills to reduce their cancer risk and support others who are affected has significant health promotion implications for cancer prevention and support provision.

Understanding and Improving Survivorship Care for Adolescents and Young Adults with Cancer.

Purpose: To explore and highlight the opportunities and challenges that underlie the development of survivorship care for adolescent and young adult cancer. Methods: A multimethod approach was used, with perspectives of survivors, relatives, and health care professionals elicited through an online survey, focus group, and semistructured interviews. Results: Four themes were identified using thematic analysis: adjusting to life after cancer, transition to community-based care, ongoing change and reform of health care, and supporting survivorship services. Adolescents and young adults (AYAs) and their families struggled with the transition from active treatment, which was complicated by ongoing disease/treatment impacts and a collective dearth of knowledge and resources on how to support AYAs during this time. Limited confidence and communication in patient-general practitioner relationships complicated the transition to community-based care, with treatment summaries and survivorship care plans an underused resource. A growing movement toward integrated, holistic, and equitable survivorship care was identified, but progress has been fragmented and under-resourced. Further research, funding, and advocacy are needed to support ongoing survivorship initiatives. Conclusions: Although some survivorship concerns are common across age groups, others are specific to AYAs' developmental stage, emphasizing the need for integrated, age-appropriate, and targeted survivorship services for AYAs. The transition from active treatment to longer term survivorship presents challenges for ongoing clinical care and support; change is needed at individual, service, and system levels to provide quality, sustainable, and integrated care to AYA cancer survivors.

Putting Adolescents and Young Adults in a Room Together: Launching an Adolescent and Young Adult Oncology Council.

Purpose: This article describes the formation and first meeting of a community adolescent and young adult oncology council (AYAOC), which was created to promote patient and stakeholder involvement in research and programmatic initiatives within community-based cancer centers. Methods: The AYAOC (comprising patients/survivors, family members, researchers and clinicians) convened at a one-day workshop moderated by an Australian not-for-profit AYA cancer organization. The council shared and compared health care experiences and then identified and prioritized unmet health care needs. Workshop notes were analyzed using inductive content analysis. Results: AYAOC members identified similarities in their experiences of cancer care and priorities for improvement of the health care system. Peer connection and the creation of adolescent and young adult (AYA)-specific care facilities were identified as the most pressing needs for AYAs with cancer, closely followed by integration of complementary medicine into medical practice and government advocacy to improve the quality and consistency of AYA cancer care delivery. Themes identified from AYAOC discussion included emotional isolation, naivety with and sometimes distrust of the medical system, the lasting impact of cancer on identity, the need for emotionally safe interactions with both individual clinicians and groups of peers, and the desire to take personal action to improve care for future patients. Conclusion: AYAOC members expressed a drive to share their experiences, advocate for others, and improve health care services for the "next generation" of AYAs diagnosed with cancer. Sharing stories and connecting with peers may have personal value for individuals. Channeling the altruistic energy of AYAs and stakeholders into group advisory and advocacy efforts also has value for health care systems, allowing stakeholder insights to inform clinical service delivery and research priorities.

Feasibility, acceptability, and safety of the Recapture Life videoconferencing intervention for adolescent and young adult cancer survivors.

OBJECTIVE: Online psychological therapies provide a way to connect adolescent and young adult (AYA) cancer survivors to evidence-based support. We aimed to establish the feasibility, acceptability, and safety of Recapture life, a six-session group-based online cognitive-behavioural intervention, led by a facilitator, for AYAs in the early post-treatment period. METHODS: A randomised-controlled trial compared Recapture Life to an online peer-support group control and a waitlist control. Participants could nominate a support person. Acceptability was assessed using study opt-in and retention rates, participant-reported benefits/burdens of participation, and group facilitator burden. We also assessed the feasibility (eg, frequency/impact of technological difficulties) and psychological safety (ie, occurrence of clinically concerning distress) of the program. RESULTS: Sixty-one participants took part (45 AYAs, 51.1% female; 19 support people). The opt-in rate was 30%, the enrolment rate was 87%, and 75% of participants took part in ≥5/6 sessions. AYAs reported high benefit and low burden of participation. Overall, 95 online group sessions were conducted; few required rescheduling by group facilitators (3%), but many took place outside of office hours (~90 hours). It took 40 days on average to create online groups, but established weekly sessions commenced quickly (M = 4.0 minutes). Technological difficulties were common but had a low impact on intervention delivery. Although 54% of AYAs returned a clinically concerning distress screen at some point, none reflected acute mental health risks. CONCLUSIONS: The data largely indicate that Recapture Life is an acceptable, feasible, and safe model of evidence-based psychological support for AYAs during early survivorship, which nevertheless experienced common challenges in online/AYA intervention delivery.

A study protocol for Truce: a pragmatic controlled trial of a seven-week acceptance and commitment therapy program for young people who have a parent with cancer.

BACKGROUND: This paper presents the rationale and study protocol for a pragmatic controlled effectiveness trial of Truce, a prevention-based selective intervention targeting the significant mental health needs of young people who have a parent with cancer. METHODS/DESIGN: Truce is a seven week, facilitated, face-to-face group program. The design is a 2 groups (intervention vs control) x 3 (pre-treatment vs post-treatment vs 2 month follow-up) repeated measures. Allocation to groups will be dependent upon recruitment; when groups have sufficient numbers, they will be assigned to the intervention condition, but participants recruited without a viable group will be assigned to the wait-list control condition. Eligible participants are young people aged 14 to 22 years who have a parent diagnosed with cancer within the last 5 years. Wait-list controls are offered the opportunity to participate in the program once they have completed their follow-up questionnaires. The target sample size is 65 participants in each condition. The primary hypothesis is that participants in the intervention will show significant reductions in distress and increases in psychological well-being relative to participants in the wait-list control group, and these effects will continue through two-month follow-up. Mixed-models analysis of variance will be used to measure differences between the two conditions. Secondary analyses will focus on variables which may relate to the effectiveness of the intervention: ACT-related concepts of experiential avoidance and mindfulness, family functioning, unmet needs and demographic variables. We will also assess program fidelity and satisfaction. DISCUSSION: The development and evaluation of a manualised intervention for young people with a parent with cancer responds to a gap in the provision of empirically-based psychological support for this vulnerable group. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry ACTRN12615000761561. Registered 22(nd) July 2015.

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).

"Being Mindful": Does it Help Adolescents and Young Adults Who Have Completed Cancer Treatment?

PURPOSE: Feelings of excitement and relief upon finishing cancer treatment are often juxtaposed with a time that can be challenging, distressing, and uncertain for adolescents and young adults (AYAs). The purpose of this study was to examine whether a mindful dispositional trait was associated with better adaptive outcomes for these young people. METHODS: AYAs who had finished cancer treatment (N = 76; mean age, 18.5; years, SD, 3.4 years) completed questionnaires measuring mindfulness, psychological distress, and uncertainty around their cancer experience. A median split was performed based on the total scores for the mindfulness measure to establish high and low mindfulness groups. RESULTS: No significant differences were found between these 2 groups on demographic or cancer variables. There were significant differences between the groups on the distress and uncertainty scores such that the higher mindfulness group reported significantly less distress and uncertainty. CONCLUSIONS: The current findings suggest the potential for a broader application of mindfulness to more fully assist young people throughout the whole pathway of cancer care.

A national approach to improving adolescent and young adult (AYA) oncology psychosocial care: the development of AYA-specific psychosocial assessment and care tools.

OBJECTIVE: Age-based screening tools and assessment measures are crucial to the provision of best practice care for adolescent and young adult (AYA) cancer patients. Unfortunately, there are limited psychosocial tools developed for this age group and pediatric or adult measures are often distributed with the assumption that they are "close enough." We describe a collaborative Australian project that strives to improve what currently exists for the psychosocial assessment of and planning for the 15-25-year-old age group. METHOD: Using the National Comprehensive Cancer Network's Distress Thermometer and the HEADSS Assessment as a foundation, the tools were developed in consultation with Australia's leading AYA clinicians, AYAs currently undergoing medical treatment, and a group of AYA survivors through a process of discussion groups and clinical interviews. RESULTS: The result is the first available AYA-specific screening tool, care plan pro forma, and psychosocial assessment measure developed for use within the oncology sector. These new tools will assist clinicians working with this population group to support psychosocial coping during active treatment and promote healthy post-treatment survivorship. SIGNIFICANCE OF RESULTS: Over time, further validation procedures will add to the veracity of the measures. Until then, these measures represent the best available in Australia. They highlight a clinically recognized minimum standard of care that all young cancer patients, regardless of treatment location, have the right to receive.