Search

Adolescents and young adults (AYAs) with cancer have unique needs around education and vocation during and after treatment. This narrative review series aims at documenting the unique needs of AYAs from the current literature and at providing recommendations to inform an update of the Australian National Service Delivery Framework for AYAs with Cancer. AYAs with cancer may experience impairments to cognitive, physical, and psychological functioning and health, which can adversely affect their academic grades, peer relationships, and likelihood of entering the workforce. Treatment expenses and time off work can stifle AYAs' financial independence from their parents. The combined effect of disrupted education, vocation, and financial dependence can reduce AYAs' sense of identity. Although support is available in some countries, support efficacy is yet to be clearly established. Continued research is required to deliver successful education and work reintegration programs that build the confidence of AYAs with cancer to achieve their best. Educational and vocational support, as well as financial advice, may improve AYAs' financial security and quality of life during survivorship.

Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants (n = 190) were aged 15–29 years and received cancer treatment from 2014 to 2019. Australians (n = 118) were recruited nationally by health care professionals. U.S. participants (n = 72) were recruited nationally via social media. The survey included demographic and disease variables, and questions regarding medical treatment, information and support provision, care coordination, and satisfaction across the treatment pathway. Sensitivity analyses examined the possible contribution of age and gender. Most patients from both countries were satisfied or very satisfied with their medical treatment (chemotherapy, radiotherapy, and surgery). There were significant differences between countries in the provision of fertility preservation services, age-appropriate communication, and psychosocial support. Our findings suggest when a national system of oversight with both state and federal funding is implemented, as is the case in Australia but not in the United States, significantly more AYAs with cancer receive age-appropriate information and support services, and improved access to specialist services such as fertility care. A national approach with government funding and centralized accountability appears to be associated with substantial benefits for the well-being of AYAs undergoing cancer treatment. [ABSTRACT FROM AUTHOR]

Background: Consumer engagement in health care is recognized as a critical strategy to minimize healthcare‐associated harms, however, little research has focussed on strategies to engage young people in healthcare safety. This study explores the suitability of commonly used engagement strategies, such as brochures, interactive bedside charts or apps, for young people (14–25 years) to improve their healthcare safety, with a focus on cancer care. Methods: Four qualitative online workshops were conducted (N = 19). Two workshops included young people who had experienced cancer (n = 6) and two workshops included staff who support young people who had experienced a diagnosis of cancer (n = 12). Evidence from a systematic review was used to develop case studies of existing strategies as a topic guide for the online workshops. Data were analysed using a framework method and template analysis approach. Results: Thematic analysis against the analytic framework led to the development of four principles for engagement with young people: empowerment, transparency, participatory culture and flexibility. The transition from being 'looked after' to young people being responsible for their own care was an integrative theme which intersected all elements of the framework. Conclusion: For service providers to engage with young people about safety issues in cancer services, the strategies employed need to be tailored to consider the transitional nature of being an adolescent or young adult. A systemic approach that incorporates flexible, tailored engagement strategies, education and empowerment of young people and healthcare providers is required to engage effectively with young people about safety in healthcare. These findings may have implications beyond cancer care. Patient or Public Contribution: Workshop content was developed with and by the CanEngage team, including the Consumer Advisory Group, who reviewed content and inform wider project priorities. [ABSTRACT FROM AUTHOR]

Simple Summary: Quality of life for adolescents and young adults (AYAs) is driven by their participation in education and employment. This participation is disrupted for AYAs diagnosed with cancer. There is limited available information on factors that impact participation in education and employment, as well as limited access to evidence-based services. This paper presents the results from the first step in developing an education and career support service for AYAs diagnosed with cancer using Intervention Mapping. Information was collected and combined from a literature review, survey of AYAs, and feedback from a planning group. Factors found to impact AYAs' participation in education or employment were categorised under AYA behaviours, environmental conditions, health and demographic factors, and internal factors. This information will guide the development of an education and career support service for AYAs diagnosed with cancer, with the aim of improving quality of life. Adolescents and young adults (AYAs) diagnosed with cancer experience disrupted engagement in education and employment, which can have profound and long-term impacts on their quality of life. It is therefore vital to offer AYAs access to tailored, evidence-based services to help them to achieve their education and employment goals. However, few such services exist for this population. This paper presents the results from the first step in developing an education and career support service for AYAs diagnosed with cancer using Intervention Mapping. This first step involved developing a logic model that describes the influences of health and demographic factors, individual determinants, behaviours, and environmental conditions on AYA participation in education or employment. The logic model was developed by integrating data from an integrative literature review; cross-sectional survey of AYA clients of a community-based organisation; and feedback from a planning group of stakeholders. It is a valuable framework that will be used to direct the focus of the education and career support service for AYAs diagnosed with cancer. More broadly, the logic model has implications for guiding clinical, service, research, and policy improvements for AYA education, employment, and career support, with the aim of improving AYA quality of life. [ABSTRACT FROM AUTHOR]

Background: Adolescents and young adults (AYAs) bereaved by the death of a parent or sibling from cancer report unique psychosocial needs and can have difficulty adjusting to their loss. Unaddressed, this can result in poor long-term bereavement outcomes. This paper describes the development and evaluation of Good Grief – a 3-day camp-based program focused on meeting coping, social support, and respite needs of AYAs bereaved by familial cancer. Methods: One hundred and nine Australian AYAs (68% female; age: 12–25 years, M = 16.63) participated in the evaluation. Grief intensity (Texas Revised Inventory of Grief), meaning-making (Grief and Meaning Reconstruction Inventory), trauma coping (Perceived Ability to Cope with Trauma Scale) and unmet needs (Bereaved Cancer Needs Instrument) measures were administered pre-program and 3-months post-program. Acceptability was measured after each session and at the program's conclusion. Appropriateness was measured at 3-month follow-up. Thirteen participants were interviewed three months post-program on their perceptions of the program. Results: Participants reported high program satisfaction, engagement with psychosocial sessions, and enjoyment of recreational activities. Significant improvements were observed in trauma coping abilities and reductions in unmet needs for managing emotions, social support, respite, future planning, and accessing information and support domains. No change was evident in grief intensity or meaning-making as measured quantitatively. Interviews supported these quantitative findings but also identified evidence of personal growth, a component of meaning-making. Conclusions: Good Grief is a highly acceptable and beneficial intervention that addresses the unique needs of AYAs bereaved by familial cancer. [ABSTRACT FROM AUTHOR]

Background: Adolescents diagnosed with cancer experience unique psychosocial concerns that persist beyond treatment completion into longer-term survivorship. Camp-based, group Acceptance and Commitment Therapy (ACT) programs are a potential model for providing evidence-informed psychological and peer support to adolescent cancer survivors. Objective: This paper describes the development and exploration of the feasibility and acceptability of such a program, Places You'll Go. This manualised program incorporates five 90-min group ACT sessions within a 3-day camp, teaching ACT strategies in the context of psychosocial impacts of cancer. Method: Eight facilitators and twenty-eight Australian adolescent cancer survivors (68% female; age range 12–17 years, M = 15.4 years) participated in the program and evaluation. Feasibility was assessed using facilitator-reported session duration, attendance, quality and content fidelity; facilitators also completed interviews after program completion. Young people completed surveys on program acceptability at the end of each session and at program completion. Results: All planned sessions were delivered, with 97% attendance and high fidelity in manualised program delivery. All young people were mostly or very satisfied and would recommend the program to another cancer survivor. Opportunities for peer connection and skill development contributed to perceived program acceptability. Conclusions: The Places You'll Go program was acceptable and feasible to deliver. It is a promising community-based model for promoting peer support and well-being in adolescent cancer survivors, indicating the potential of ACT-based approaches for this population. Further work is underway to evaluate whether the program improves psychosocial wellbeing among participants, and if this is linked to the therapeutic mechanisms underpinning ACT. [ABSTRACT FROM AUTHOR]

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. Summary: This paper describes the piloting of a cancer awareness program for high school students that addresses what cancer is, its impacts, risk‐reduction strategies and how to support someone affected by cancer. Participating students and teachers indicated high satisfaction, suggesting the program is relevant, age‐appropriate and effective in educating adolescents about cancer. [ABSTRACT FROM AUTHOR]

Objective: This study aimed to validate the Bereaved Cancer Needs Instrument (BCNI), an instrument designed to assess the unmet psychosocial needs of adolescents and young adults (AYAs, 12-25 years) who have experienced the death of a parent or sibling to cancer.Methods: In total, 335 participants aged 12 to 25 (M = 15.80, SD = 3.32) who had experienced the death of a parent (N = 297) or sibling (N = 38) from cancer took part in this study. Participants completed the BCNI, the Kessler-10 psychological distress scale (K10), and several items assessing the acceptability of the BCNI.Results: Exploratory factor analysis indicated that a seven-factor structure best fit the BCNI, accounting for 56.65% of the variance in unmet psychosocial needs of cancer-bereaved AYAs. The measure had good psychometric properties, high levels of internal consistency for all domains, and correlated strongly with the K10 (r = .59, p < .001). Item response theory analysis demonstrated that the response scale was appropriate, with strong discrimination indices. Analyses also indicated the potential to reduce the BCNI from 58 items to a 37-item short-form, although this will require further validation.Conclusions: The BCNI is the first psychometrically validated instrument to identify the unmet psychosocial needs of bereaved AYAs who have experienced the death of a parent or sibling to cancer. The instrument can be used in research and health care settings to identify the unmet needs of young people bereaved by cancer and provide targeted support to reduce psychological distress. [ABSTRACT FROM AUTHOR]

Purpose: This study examined Adolescent and Young Adult (AYA) cancer patients' experiences with friends and cancer friends (peers) throughout their cancer journey. Research approach: Qualitative, thematic analysis. Participants: Twelve AYA diagnosed with cancer, treated within the past five years. Methodological approach: Individual semi-structured interviews, focusing on friend and peer experiences pre-/post-diagnosis, during and after treatment. Findings: Overarching themes of 'valued' vs. 'challenging' aspects with friends and peers. Interpretation: Friend and peer relationships were both valuable, but in different ways. Friends provided general support and helped AYA feel like a normal teenager, while peers provided targeted support and helped AYA feel like a normal teenager with cancer. Peers had an intimate understanding of cancer, whereas poor understanding by friends led to further challenges such as avoidance and being dismissive. Peer relations were notably challenged by a premature confrontation with mortality. Friendships evolved and changed throughout the cancer journey. [ABSTRACT FROM AUTHOR]

The article discusses a research which shows the effect of cancer peer support scale (CaPSS) in adolescents living with cancer. An overview on the development and evaluation of the CaPSS with lower psychological distress and discrimination assessment, is provided. Also emphasized is the potential impact of appropriate support to improve overall well-being in cancer patients.

Rationale Given the high number of young adults caring for a family member, and the potential for adverse psychosocial outcomes, there is a need for a screening tool, with clinical utility, to identify those most vulnerable to poor outcomes and to aid targeted interventions. Objectives (i) To determine whether current knowledge from cancer literature regarding young carers is generalisable to chronic conditions and, therefore, whether an existing screening tool could be adapted for this population. (ii) To develop a measure of unmet needs in this population and conduct initial psychometric analysis. Design This was mixed method; interviews in study one informed measure development in study two. Inclusion criteria were as follows: having a parent with a chronic condition and being aged 16-24 years. In study 1, an interpretative phenomenological analysis was conducted on interviews from seven young adults (age range 17-19 years). Study 2 explored factor structure, reliability and validity of the Offspring Chronic Illness Needs Inventory ( OCINI). Participants were 73 females and 34 males (mean ages 18.22, SD = 1.16; 18.65, SD = 1.25). Main outcome measures OCINI, Depression Anxiety and Stress Scale, and the Adult Carers Quality of Life Scale. Results Interviews communicated that the impact of their parent's condition went unacknowledged and resulted in psychosocial, support and informational needs. An exploratory principal axis analysis of the OCINI yielded five factors. Significant and positive correlations were found between unmet needs and stress, anxiety, and depression, and inversely with quality of life. Conclusions The scale has applications in clinical settings where these young people, who are at risk of negative psychological outcomes, may be assessed and unmet needs targeted appropriately. [ABSTRACT FROM AUTHOR]

• Leadership offers youth impacted by cancer critical developmental opportunities. • Youth leadership also improves relevance and appropriateness of youth services. • Best practices for engaging and supporting young leaders remain unclear. • A Youth Leadership Framework was co-designed in a youth cancer organisation. • The development process and insights may be instructive for other youth services. Engaging young people in organisational leadership offers opportunities for them to contribute and make a positive difference to their communities, benefitting both the young people and the organisations with which they are involved. However, best practices for engaging and supporting young leaders in cancer support organisations remain unclear. This article reports on the co-design and implementation of a Youth Leadership Framework within a national not-for-profit youth cancer organisation. Staff and young people worked together to develop a Framework which includes a model of youth leadership, defined roles and pathways, a resource toolkit and a suite of age-appropriate leadership development programs. This Framework better enables the organisation to fulfil its long-held goals of supporting, developing and empowering young leaders. This account of the Framework's development and the insights gained in the implementation process serves as an exemplar to other community organisations and health services seeking to engage and support young leaders, expanding the evidence base on best practices in youth leadership in the cancer context. [ABSTRACT FROM AUTHOR]

This research sought to identify what has been helpful for young people who have a parent diagnosed with cancer. Semistructured telephone interviews were conducted with young people (N = 15, age: M = 15.9 years) who had a parent diagnosed with cancer within the last 5 years. A phenomenological thematic data analysis distinguished three superordinate themes, identifying what helped adolescents cope with their parent's cancer diagnosis. These were parental behavior, specific coping strategies used by the young person, and community support. These results contribute to our knowledge of what can help young people whose parent has been diagnosed with cancer. [ABSTRACT FROM PUBLISHER]

Simple Summary: Previous research describes the issues AYA cancer patients may face when it comes to maintaining social relationships after their diagnosis. Related issues included mutual misconceptions and a lack of understanding of the impact of cancer. The Dutch AYA 'Young & Cancer' Care Network co-created the mobile application 'AYA Match' to provide support on this matter. Co-creation, in which the target population is directly involved, appears to be an effective way to establish an intervention that applies to their needs. The aim of this study was to describe the cocreational process, characteristics of AYA Match users and their expectations of the app. The application could be useful for a wider audience in the future, such as older cancer patients or individuals dealing with other diseases. Adolescent and young adult (AYA) cancer patients report a need for support to stay in contact with loved ones after diagnosis. In response to this the Dutch AYA 'Young & Cancer' Care Network co-created the mobile application 'AYA Match'. This study describes the cocreational process, the characteristics of the users and their expectations regarding the app. 121 AYA cancer patients and 37 loved ones completed a questionnaire. 68.6% of the loved ones reported 'staying in contact' and 'finding out about the needs and wishes of 'their AYA' during this time' as the main reasons for downloading the application. 41.1% of the AYA cancer patients expected the app to help them communicate to their loved ones what they do or don't want and need. 60% of the loved ones indicated that they would like to use the application to offer help to 'their AYA' with their daily tasks. Patients and their loved ones have similar expectations when it comes to 'normalizing' contact, increasing empathy and mutual understanding about needs and emotions. The AYA Match app could be an adequate answer to the issues experienced regarding contact, support and mutual understanding. [ABSTRACT FROM AUTHOR]

Simple Summary: We assessed a new group-based cognitive behavior therapy videoconferencing program to support parents of childhood cancer survivors. The trial allocated parents to three groups: Cascade, peer-support, waitlist. Cascade achieved good parent engagement. We successfully delivered Cascade to participants who lived >3200 km apart. Any technical difficulties caused only minor disruptions. Most Cascade parents were satisfied and reported experiencing benefits from the program. However, Cascade did not improve our main outcomes, including parents' quality of life, depression and anxiety. Cascade parents reported a short-term improvement in their confidence to use the skills they learnt, but this did not translate into actual use. After six months, Cascade parents felt their child survivor had lower psychological health than waitlisted parents. Our findings show that while some parents find Cascade helpful, it may not suit everyone. We used these findings to further improve Cascade and will trial the new version in 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. [ABSTRACT FROM AUTHOR]

Simple Summary: A cancer diagnosis during adolescence or young adulthood presents unique medical and psychosocial challenges which must be addressed in the provision of quality, comprehensive cancer care. Tailoring services to the needs of this population requires careful work to identify, monitor and evaluate areas of care; however, published work in this area to guide service priorities is limited. This paper presents work done by the Australian Youth Cancer Services to operationalise and deliver quality care to adolescents and young adults with cancer, focusing on nationally coordinated service improvement initiatives and activity data collection in four areas that are of particular concern to young people diagnosed with cancer: clinical trial enrolment, oncofertility, psychosocial care and survivorship. This account may be instructive for health services seeking to improve the delivery and monitoring of cancer care provided to adolescents and young adults. 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. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescents and young adult cancer survivors are vulnerable to psychological distress after completing cancer treatment. Telehealth (online videoconferencing) interventions may be able to address the gap in tailored, evidence-based supportive interventions. We evaluated an online, group-based, videoconference-delivered cognitive-behavioral therapy intervention ('Recapture Life') in a randomized trial. Forty cancer survivors between the ages of 15–25 years participated. No positive impacts on participants' quality of life emerged immediately following the intervention, but Recapture Life participants reported using more adaptive coping skills. Recapture Life participants also reported higher negative impact of cancer, anxiety and depression at a 12-month follow-up. Additional analyses suggested that survivors benefitted differently from the two online interventions (Recapture Life vs. peer-support group) depending on how recently they had completed their cancer treatment. Our data highlight that different survivor sub-groups may find group-based, telehealth psychological interventions more or less helpful at different points in survivorship. Telehealth interventions offer a practical platform to support adolescent and young adult (AYA) cancer survivors' mental health needs after treatment, yet efficacy data are lacking. We evaluated an online, group-based, videoconferencing-delivered cognitive-behavioral therapy (CBT) intervention ('Recapture Life') in a 3-arm randomized-controlled trial comparing Recapture Life with an online peer-support group, and a waitlist control, with the aim of testing its impact on quality of life, emotional distress and healthcare service use. Forty AYAs (Mage = 20.6 years) within 24-months of completing treatment participated, together with 18 support persons. No groupwise impacts were measured immediately after the six-week intervention. However, Recapture Life participants reported using more CBT skills at the six-week follow-up (OR = 5.58, 95% CI = 2.00–15.56, p = 0.001) than peer-support controls. Recapture Life participants reported higher perceived negative impact of cancer, anxiety and depression at 12-month follow-up, compared to peer-support controls. Post-hoc analyses suggested that AYAs who were further from completing cancer treatment responded better to Recapture Life than those who had completed treatment more recently. While online telehealth interventions hold promise, recruitment to this trial was challenging. As the psychological challenges of cancer survivorship are likely to evolve with time, different support models may prove more or less helpful for different sub-groups of AYA survivors at different times. [ABSTRACT FROM AUTHOR]

The impact of a young person's cancer diagnosis extends to siblings, yet support services to address siblings' needs are limited. This study explores healthcare professionals' (HCPs') perspectives on engaging and supporting adolescent and young adult (AYA, 12–25 years) siblings of young cancer patients in hospital settings. Semi‐structured interviews with nine HCPs explored participants' views on models of care, engagement and assessment of siblings, available services, barriers to care, and future directions. Participants understood the impact of cancer and need to support AYA siblings, but were unclear how these responsibilities fit in with existing models of care and clinical roles. Siblings' absence from hospitals complicated processes of engagement, assessment and provision of care, challenging some participants to engage siblings outside the clinical context. In the absence of direct contact, HCPs largely relied on patients and parents to report or refer siblings for care. Service and resource limitations further restricted the provision of support to siblings. Despite HCPs' recognition of the need to support siblings, their "invisibility," lack of standardised assessment and service constraints complicate the provision of care in hospital settings. Integrating hospital‐based care with community services may better facilitate the engagement and support of AYA siblings. [ABSTRACT FROM AUTHOR]

An introduction to articles in the issue is presented on topics including how cancer can impact the adolescent or young adult (AYA) developmental trajectory, the challenges of coping with the pervasive change and uncertainty that characterises the experience of cancer as an AYA, and the developmental and psychosocial challenges for AYAs as they enter longer-term survivorship.