Search

Introduction: Fear of progression (FOP) is a significant psychological concern among cancer patients. The Fear of Progression Questionnaire-Short Form (FOPQ-SF) is one of the significant and reliable tools to evaluate FOP. This study aims to validate the psychometric features of the Persian version of FOPQ-SF in Iranian cancer patients. Methods: The translation of the FOPQ-SF was developed using a "forward–backward" approach. This cross-sectional study included 120 cancer patients who completed the questionnaires. The validity and reliability of the FOPQ-SF were evaluated, and the factor structure was examined using both exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Results: The FOPQ-SF demonstrated high test–retest and internal reliability, with a Cronbach's alpha coefficient of 0.84. EFA revealed a one-factor structure consisting of 12 items. The FOPQ-SF exhibited high convergent validity, as indicated by significant correlations with anxiety, depression, the total score of HADS, and symptoms. It also demonstrated moderate divergent validity, with negative correlations observed between function and global health. Furthermore, FOP significantly differed among pre-defined groups based on cancer stages. Discussion: The results indicate that the Persian version of the FOPQ-SF is a reliable and valid questionnaire for assessing FOP in 20–60 Iranian cancer patients ages. [ABSTRACT FROM AUTHOR]

Objective: To evaluate the psychometric properties of the Perceptions of Parental Illness Questionnaire for Cancer (PPIQ‐C) among adolescents and young adults (AYAs). Methods: A sample of 372 AYAs (aged 12–24 years) who had a parent diagnosed with cancer completed the PPIQ‐C and the Kessler Psychological Distress Scale (K10). Exploratory factor analyses were conducted to examine the dimensional structure of the PPIQ‐C. Scale reliability was evaluated using Cronbach's alpha (α) and McDonald's omega (ω). Pearson correlation analyses were conducted to assess construct validity by examining correlations between PPIQ‐C subscale scores and K10 total scores. Results: The PPIQ‐C is organised into three sections, each with a separate factor structure for items representing identity, core (emotional representations, coherence, timeline, consequences, and controllability), and cause dimensions of the Common‐Sense Model of Self‐Regulation. Exploratory factor analyses determined the structure of each section: identity items comprised two subscales (12 items), core items comprised 10 subscales (38 items), and cause items comprised three subscales (11 items). Scale reliability was acceptable for all subscales, except the cause subscale chance or luck attributions (α = 0.665). Correlations between PPIQ‐C subscale scores and K10 total scores provided support for construct validity. Conclusions: Preliminary evidence suggests that the PPIQ‐C is a reliable, valid, and useful tool for assessing illness perceptions among AYAs with a parent with cancer. The PPIQ‐C may be a useful addition to both clinical practice and future research, however further evaluation work is needed to confirm its structure and robustness prior to use. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescents and young adults (AYAs) with life-threatening illnesses want to voice their end-of-life choices. However, these conversations do not happen often. This is in part because of the discomfort that surrounds talking about these issues and because health professionals often have not had enough training in this area. Voicing My CHOiCES is an American booklet which serves as a communication guide to help AYAs have these important discussions with their families and health professionals and document their preferences for care. Our study looked at whether the American guide was suited to young Australians, and what aspects of the guide young people, health professionals, and parents thought caused stress. Overall, participants thought the guide was appropriate and helpful for adolescents and young adults, and they talked about different sources of stress for AYAs attempting to complete it. Our research will inform the adapted Australian Voicing My CHOiCES and support health professionals in how to use this guide to facilitate positive end-of-life outcomes for young people and their families. Background: Adolescents and young adults (AYAs) with life-threatening illnesses need support to discuss and voice their end-of-life choices. Voicing My CHOiCES (VMC) is a research-informed American advanced care planning guide designed to help facilitate these difficult discussions. This multi-perspective study aimed to evaluate its appropriateness, acceptability, and clinical considerations for Australian AYAs with cancer. Procedure: Forty-three participants including AYAs who were either undergoing or recently completed cancer treatment, their parents, and multidisciplinary health professionals assessed the acceptability of each VMC section quantitatively (appropriateness—yes/no, helpfulness and whether content caused stress—1 = not at all, to 5 = very) and qualitatively (sources of stress). AYAs also assessed the benefit and burden of completing several sections of the document, to inform clinical considerations. We conducted a mixed-methods analysis to obtain descriptive statistics and to identify prominent themes. Results: In terms of acceptability, almost all participants (96%) rated VMC as appropriate overall. Perceived helpfulness to their situation (to themselves/their child/their patients), to others, and stressfulness were rated, on average, as 4.1, 4.0, and 2.7/5, respectively. Stress was attributed to individual and personal factors, as well as interpersonal worries. All sections were considered more beneficial than burdensome, except for the Spiritual Thoughts section (Section 6). Conclusions: While VMC is an acceptable advance care planning guide for AYAs with cancer, changes to the guide were suggested for the Australian context. Health professionals implementing VMC will need to address and mitigate anticipated sources of stress identified here. Future research evaluating the impact of a new culturally adapted Australian VMC guide is an important next step. Finally, the clinical implications of the present study are suggested. [ABSTRACT FROM AUTHOR]

Purpose: Fertility is a major concern for adolescents and young adults (AYAs, 15–30 years) diagnosed with cancer, yet they often report a lack of information and understanding about fertility impacts and preservation options. This study aimed to evaluate the acceptability and preliminary efficacy of Maybe Later Baby (MLB), an oncofertility information resource for AYAs diagnosed with cancer. Methods: In a randomized controlled trial, 13 participants received MLB alone and 10 received an augmented intervention involving an additional consultation with a health care professional (HCP). Pre- and postintervention surveys and interviews explored participants' well-being, fertility knowledge, health literacy, and experiences using the resource. Results: Participants indicated that the resource was accessible and understandable and provided valuable information without increasing distress. When averaged across conditions, functional health literacy (p = 0.006) and oncofertility knowledge (p = 0.002) increased, although there were no significant changes in fertility-related emotions (p > 0.05), and quality of life decreased (p = 0.014). While qualitative accounts suggested that HCP consultations were useful and validated participants' experiences and concerns, participants receiving the augmented intervention became more nervous/fearful about fertility treatment (p = 0.005). There were no other differences in outcomes between conditions. Conclusions: Young people diagnosed with cancer want and value information about oncofertility and resources such as MLB are acceptable and useful means of providing this information. This could be supplemented by clinical discussion to ensure that tailored situation-specific information is provided and understood and patient distress is appropriately managed. Clinical Trial Registration number: 12615000624583. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective: Most adolescents and young adults (AYA) can expect to survive a cancer diagnosis and treatment, but all will be left with the potential of long‐term negative effects that can impact their ability to reach their full potential in life. Understanding aspects of psychological, functional, and social health and well‐being outcomes, is pivotal for optimising long‐term well‐being. Methods: We completed a systematic review of longitudinal studies reporting outcomes after anti‐cancer treatment for Adolescents and Young Adults diagnosed between the age of 12–29 years according to established systematic review processes. The protocol was registered with PROSPERO (ID: CRD 42020203116). Results: Thirteen reports from 10 studies met eligibility criteria representing 17,645 individuals (50.3% female, mean age at diagnosis 22 years, and 26 years at last, follow up). Eleven reports were from eight quantitative studies that relied on self‐report surveys and two were qualitative studies. Psychological outcomes were reported to improve over time, as were functional health outcomes, although reported health behaviours were inconsistent between studies. Neurocognitive deficits were reported to affect the ability to return to work and impacts on fertility and sexuality were sustained over time. Conclusions: While some outcomes for AYA are reported to improve over time, particularly for physical functioning, and anxiety and depression, the long‐term impact of cancer on many important domains remains largely unknown. Specifically, the evidence to understand what changes occur over time, and when, remains underdeveloped. Key points: Adolescents and young adults have a long time to live as survivors of cancer, and the negative effects of disease and treatment can compromise long‐term well‐beingLongitudinal research is important for understanding changes in outcomes over timeWhile a wide range of outcomes have been studied, the evidence to understand what changes occur and when remains underdeveloped [ABSTRACT FROM AUTHOR]

Background: Adolescent cancer patients experience considerable absence from their education, contributing to poorer academic attainment and isolation from peers, and impacting wellbeing. Telepresence robots have been used to support the educational and social needs of young people with chronic illness. This article presents the results of the development and pilot-testing of a telepresence robot service in schools for adolescent cancer patients – the TRECA (Telepresence Robots to Engage CAncer patients in education) service. Methods: Phase I used semi-structured interviews (n = 25) to assess the views of patients, parents, schools and clinicians on the benefits, acceptability, barriers, and enablers of utilizing robots in schools for adolescent cancer patients. Results from Phase I informed the development of the TRECA service. Phase II used semi-structured interviews (n = 22) to assess the implementation experiences of adolescent cancer patients, and their families, schools, and keyworkers who pilot-tested the TRECA service. Results: Phase I demonstrated the need for telepresence technology in connecting adolescent cancer patients to school. Given the variable support during treatment, a telepresence robot service was considered an acceptable method of facilitating a school-patient connection. The recommendations provided in Phase I, such as the need for provision of ongoing education, training, and support to the patient and school, informed the development of the TRECA service. In Phase II, the themes of The necessity of stakeholder buy-in , A facilitator of meaningful connection , and One size does not fit all were generated. The TRECA service's flexibility in meeting the needs of its users helped facilitate meaningful connections. Participants reported that these connections provided patients an enhanced sense of agency and wellbeing. The importance of stakeholder buy-in and taking an individualized approach to service delivery were also highlighted. Stakeholder miscommunication and lack of knowledge were key aspects of implementation needing improvement as the service is rolled out on a larger scale. Conclusion: Using telepresence robots to connect adolescents to school during cancer treatment was regarded as highly acceptable, facilitating peer and academic connection. By making stakeholder-recommended improvements to the TRECA service's existing processes, the service will continue to grow in effectiveness and capacity. [ABSTRACT FROM AUTHOR]

Objective: Adolescents and young adults (AYAs) diagnosed with cancer commonly experience elevated psychological distress and need appropriate detection and management of the psychosocial impact of their illness and treatment. This paper describes the multinational validation of the Distress Thermometer (DT) for AYAs recently diagnosed with cancer and the relationship between distress and patient concerns on the AYA‐Needs Assessment (AYA‐NA). Methods: AYA patients (N = 288; 15–29 years, Mage = 21.5 years, SDage = 3.8) from Australia (n = 111), Canada (n = 67), the UK (n = 85) and the USA (n = 25) completed the DT, AYA‐NA, Hospital Anxiety Depression Scale (HADS) and demographic measures within 3 months of diagnosis. Using the HADS as a criterion, receiver operating characteristics analysis was used to determine the optimal cut‐off score and meet the acceptable level of 0.70 for sensitivity and specificity. Correlations between the DT and HADS scores, prevalence of distress and AYA‐NA scores were reported. Results: The DT correlated strongly with the HADS‐Total, providing construct validity evidence (r = 0.65, p < 0.001). A score of 5 resulted in the best clinical screening cut‐off on the DT (sensitivity = 82%, specificity = 75%, Youden Index = 0.57). Forty‐two percent of AYAs scored at or above 5. 'Loss of meaning or purpose' was the AYA‐NA item most likely to differentiate distressed AYAs. Conclusions: The DT is a valid distress screening instrument for AYAs with cancer. The AYA‐POST (DT and AYA‐NA) provides clinicians with a critical tool to assess the psychosocial well‐being of this group, allowing for the provision of personalised support and care responsive to individuals' specific needs and concerns. [ABSTRACT FROM AUTHOR]

Abstract Background A cancer diagnosis is 2.9 times more likely to occur during the adolescent and young adult years than in younger children. This spike in incidence coincides with a life stage characterised by psychological vulnerability as young people strive to attain numerous, critical developmental milestones. The distress young people experience after cancer treatment seriously jeopardises their ability to move into well-functioning adulthood. Methods/Design This article presents the protocol of the Recapture Life study, a phase II three-arm randomised controlled trial designed to evaluate the feasibility and efficacy of a new intervention in reducing distress and improving quality of life for adolescent and young adult cancer survivors. The novel intervention, “ReCaPTure LiFe” will be compared to a both a wait-list, and a peer-support group control. Ninety young people aged 15–25 years who have completed cancer treatment in the past 1–6 months will be recruited from hospitals around Australia. Those randomised to receive Recapture Life will participate in six, weekly, 90-minute online group sessions led by a psychologist, involving peer-discussion around cognitive-behavioural coping skills (including: behavioural activation, thought challenging, communication and assertiveness skills training, problem-solving and goal-setting). Participants randomised to the peer-support group control will receive non-directive peer support delivered in an identical manner. Participants will complete psychosocial measures at baseline, post-intervention, and 12-months post-intervention. The primary outcome will be quality of life. Secondary outcomes will include depression, anxiety, stress, family functioning, coping, and cancer-related identity. Discussion This article reviews the empirical rationale for using group-based, online cognitive-behavioural therapy in young people after cancer treatment. The potential challenges of delivering skills-based programs in an online modality are highlighted, and the role of both peer and caregiver support in enhancing the effectiveness of this skills-based intervention is also discussed. The innovative videoconferencing delivery method Recapture Life uses has the potential to address the geographic and psychological isolation of adolescents and young adults as they move toward cancer survivorship. It is expected that teaching AYAs coping skills as they resume their normal lives after cancer may have long-term implications for their quality of life. Trial Registration ACTRN12610000717055

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]

Keywords: adolescent; cancer; communication; health resources; oncology; parenting; psycho-oncology; young adult EN adolescent cancer communication health resources oncology parenting psycho-oncology young adult 2101 2104 4 01/07/21 20201201 NES 201201 Key Points Parents diagnosed with cancer report concerns about the impact of cancer on their children, but parental issues are rarely discussed in healthcare settings. BACKGROUND When facing a cancer diagnosis, parents with dependent children experience more panic and worry than those without dependent children, as well as concerns about maintaining family routines, being a "good" parent, and discussing cancer with children 1. 2 Canteen is an Australian charity that provides psychosocial support to 12- to 25-year-olds who have cancer, have a close family with cancer, or have had a close family member die from cancer. [Extracted from the article]

A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15–39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best-practice care and communication practices with AYAs as they approach the end-of-life. We conducted a narrative review and found evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated, consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. We highlight a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely, age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA-parent preferences exists, and when AYAs die at home versus in hospital. We have proposed a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings. [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]

Purpose: To describe the theoretical, evidence-based and consumer-informed development of a smartphone self-management program aiming to support adherence to oral chemotherapy in adolescents and adults diagnosed with cancer. Methods: The design of the program followed two frameworks for the development and evaluation of mHealth interventions and was conducted in three steps: 1) conceptualization, which involved an extensive literature review and a scoping review that led to the identification of the behavioral change strategies in the program; 2) definition of features and structure, based on a formative study with end-users to explore their preferences about the structure and elements of the program; and 3) selection of program delivery technology, whereby available technology platforms were examined and the most suitable tool to deliver the program was selected. Results: Three main reasons for oral chemotherapy non-adherence were identified: forgetfulness, side-effects and poor knowledge about oral chemotherapy. Key behavior change strategies were also identified, namely, medication intake reminders and information about oral chemotherapy and managing side-effects. Based upon end-user feedback the method of delivery of these behavioral strategies that was deemed most appropriate was conventional text messages. The reminders were standard, short, text-only messages sent when each oral chemotherapy dose was due, one way (no need to reply) and addressed the end-users using their first name. Delivery of information about oral chemotherapy and side-effects was tailored to each individual's preferred frequency. Conclusion: The careful design process described in this paper may serve to inform the development of future mobile phone-based medication adherence-enhancing interventions for people with cancer. A trial to explore end-users acceptability of and satisfaction with the intervention is currently underway. Trial Registration: ACTRN12618001987257p. [ABSTRACT FROM AUTHOR]

Objective: Parents with cancer want information about maintaining family functioning despite cancer. This scoping review assesses what online information resources are available to help parents with cancer maintain family functioning, the quality of the available information, and whether resources provide specific advice for parents of adolescent and young adult (AYA) children.Methods: To identify available relevant English-language online information resources, we imitated a parental online information search using three search engines (Google, Yahoo, and Bing). Online resources from the last 10 years for parents with cancer addressing family functioning were included. These resources were rated using the DISCERN instrument-a tool for rating the reliability and quality of health information resources.Results: 684 results were screened and 33 online information resources from the USA, UK, Australia, Canada, and Ireland met the inclusion criteria. Average DISCERN quality was 54/80 (95% CI:50-58), which is typical for online health information. The highest rated resources provided information for parents on supporting their AYA children's needs for information and support with feelings, but few comprehensively covered other specific AYA needs. Details on resource weaknesses as identified by the DISCERN are presented.Conclusions: Several high-quality resources for parents with cancer were identified from multiple countries, allowing health professionals internationally to direct patients with cancer to relevant high quality online information. Highlighted limitations in resource quality and scope will guide future resource development and revision, ensuring more comprehensive high quality information is available to support families affected by parental cancer internationally. [ABSTRACT FROM AUTHOR]

The I Life Imprint i session is a key therapeutic session in I Good Grief i conceptualised by YP reading and reflecting on a structured letter about the shared values between them and their deceased family member. A family member or close friend (chosen by the YP) was asked to write a I Life Imprint i letter for the YP prior to I Good Grief i , guided by four questions (see Figure). At the end of the I Life Imprint i session, Facilitators completed a session fidelity measure, and YP and Facilitators rated YP's engagement. YP were "reassured" that their family member lived on through them, creating meaning from the death and shaping how the YP moved forwards positively in their grief. [Extracted from the article]

Objective: Engaging in shared decision-making may be particularly difficult for adolescents and young adults with cancer (AYAs), possibly because of lower levels of health literacy. Family members of AYAs are likely to support decision-making about their healthcare by contributing to health literacy skills/practices; however, the nature of this process is unclear. This systematic review synthesized qualitative studies that explored the process of decision-making and characterized how AYA healthcare information is shared, from the perspective of the AYA and their family members.Methods: Electronic searches of EMBASE, MEDLINE, PsycINFO, and CINAHL were conducted in May 2018. Peer-reviewed studies discussing the decision-making process in AYAs and/or their families were eligible for inclusion. Findings were analyzed thematically using Framework analysis.Results: Seven thousand two hundred seventy-three studies were screened, and 14 eligible studies were included. The synthesized themes aligned with the Supported Health Literacy Pathway model3 in that AYAs draw on their family members' knowledge, skills, and practices to generate informed options and make shared decisions. Families of AYAs were found to be involved throughout all stages of decision-making. The use of health literacy skills was also found to be distributed in families, such that family members of AYAs mediate access to knowledge and use of health information in the decision-making process.Conclusions: Our findings suggest that health literacy is a dynamic and transactional process and provide clinicians, researchers, and other stakeholders with a framework to foster AYA engagement in decision-making. [ABSTRACT FROM AUTHOR]

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. [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.

Purpose To conduct a meta-synthesis of qualitative studies exploring experiences of young cancer patients to identify the overarching concepts that inform future service and research directions. Method A systematic literature search was conducted, and 51 articles published between January 2004 and March 2014 were collected via CINAHL, Medline and PsycINFO databases. Deductive thematic analysis was conducted to identify major themes, guided by Hermeneutic notions on interpretation. Results Cancer impacted a wide range of life domains. These impacts were interconnected and bi-directional. The meanings of these impacts were closely related to their unique developmental needs and a social position as youth. Emotional struggles during these radical changes were evident, but efforts to make sense of their experiences and find meaning pervaded. Conclusions Given the interrelated nature of the cancer challenges young cancer patients experience, there needs to be an emphasis on conducting studies which further refine our understanding of these relationships. This can help to structure effective youth cancer services. Generic informational resources and support services should be tailored so that they have relevance to the young person’s life context. The treating team has an important role in fostering young patients’ ability to make sense of their experiences by providing developmentally-relevant psychosocial support. [ABSTRACT FROM AUTHOR]

The article talks about the need for a strategic national approach in Australia to improve the treatment outcome for adolescents and young adults suffering from rare and low survival cancers, based on the findings of a select committee established by the Australian Senate.

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. [ABSTRACT FROM AUTHOR]

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 CAncEr) study is a three-arm randomized 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. [ABSTRACT FROM AUTHOR]

The article features the E-Mental Health Service for Young People Living With Cancer (YPLWC) service in Australia developed by CanTeen. Topics discussed include the service's purpose, outcome and value, the high incidence of mental illness in young people, statistical data on the number of young people suffering from cancer. Also discussed are cancer-related services offered through the Internet, teleconferencing and telephone counselling.

• 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]

The psychosocial needs of young people (aged 12-24) who have a sibling with cancer are still comparatively underresearched and largely underserviced. Steps taken in the development of a needs-based measure, the Sibling Cancer Needs Instrument (SCNI), are presented, involving a qualitative exploration of needs (focus group with 4 young people, telephone interviews with 7 young people, and a staff survey) and a quantitative piloting of the resulting first version of the SCNI on 71 young people. Results are explored in relation to the 10 identified domains of need (information, peer support [friends], peer support [similar experience], sibling relationship/support, expressing/coping with feelings, access to support services, respite/recreation, acknowledgement/attention for self, instrumental support, and involvement in the cancer experience). The survey data showed that 75% of young people endorsed 10 or more needs, whereas 50% endorsed more than half of all 80 needs, and on average, participants reported 10 unmet needs. Correlations between needs and psychological distress scores are also explored. Initial reliability, and face and content validity for the SCNI encourage further development of the instrument to assist in better monitoring and to meet the various needs of this underserviced population. [ABSTRACT FROM PUBLISHER]

Objective:Research into parental loss has led to an understanding of the types of reactions and responses that children, and to a lesser extent adolescents and young adults, have when a parent dies. Only limited studies, however, have directly investigated the psychosocial needs of young people during this period. The aim of the current study was to identify and better understand the needs of adolescents and young adults who have lost a parent to cancer, and to ascertain the extent to which these needs had been met.Method:As the study is exploratory in nature, a qualitative questionnaire was used to explore the needs and unmet needs of adolescents and young adults who have had a parent die of cancer. Sixty-two parentally bereaved young people aged 12–23 participated.Results:The data were thematically analyzed and seven conceptually distinct need themes emerged, namely: support and understanding; help coping with feelings; to talk to people who have had a similar experience; information; have a break/have fun; space and time to grieve; and help with household responsibilities.Significance of results:The research findings will assist health professionals in developing services and interventions which are more responsive to the needs of parentally bereaved young people. [ABSTRACT FROM PUBLISHER]

Objective:The impact of a cancer experience during emerging adulthood (18–25 years of age) is an under-studied phenomenon, with research on young people typically focussing on children or adolescents. Needs-based research on this population is even scarcer. This study sought to ascertain the most commonly-unmet needs of emerging adults with cancer, in various stages of time-since-treatment, and to investigate links to psychological functioning.Method:Using an earlier version of a needs-based questionnaire, presently under development, as well as additional items developed specifically for this age group, the ten most unmet needs were determined for 63 emerging adults in each of the following three groups: those on or within one year since treatment; those between one and five years since treatment; and those beyond five years since treatment. Psychological functioning was measured by the Depression, Anxiety and Stress Scales (DASS-21).Results:On average, participants rated 17.7 of the 132 needs as unmet. The 10 most unmet needs for each group generated a distinct picture of how needs change as time-since-treatment increases. For those at or within one year since treatment, there were a number of unmet needs directly related to health care provision and the hospital experience. For those whose treatment was more than one year previous, the most unmet needs were more focussed on emotional/psychological issues, particularly related to survivorship and life direction. Positive correlations were found between the number of unmet needs and levels of anxiety and stress.Significance of results:The results of the present study provide quantitative needs-based information about emerging adults with cancer, in the context of their treatment situation. This enables health care providers to better support the emerging adult with cancer in ways that are age-appropriate and time-sensitive. The persisting levels of unmet needs and psychological distress beyond five years since treatment underscore the importance of long-term follow-up and support. [ABSTRACT FROM PUBLISHER]

Simple Summary: Adolescent and young adults (AYAs) impacted by their own or familial cancer require information and peer support throughout the cancer journey to help with their feelings of isolation. AYAs impacted by cancer need safe, secure, and accessible ways to connect with their peers and access information, peer, and professional support. Online Health Communities provide social networks, support, and health-related content to people united by a shared health experience. Canteen Connect (CC) was developed using a participatory design (PD) process, covering a needs assessment, idea generation, and implementation evaluation. The evaluation showed CC was appropriate for connecting with other AYAs. Most AYAs reported satisfaction with CC and a positive impact on their feelings of sadness, worry, and/or anxiety. By using a PD approach, CC fills an important service provision gap in providing an acceptable and appropriate online health community for AYAs impacted by cancer, with initial promising psychological outcomes. Adolescent and young adults (AYAs) impacted by their own or familial cancer require information and peer support throughout the cancer journey to ameliorate feelings of isolation. Online Health Communities (OHC) provide social networks, support, and health-related content to people united by a shared health experience. Using a participatory design (PD) process, Canteen developed Canteen Connect (CC), an OHC for AYAs impacted by cancer. This manuscript outlines the process used to develop CC: (1) A mixed-methods implementation evaluation of Version I of CC (CCv.1); (2) Qualitative workshops utilizing strengths-based approaches of PD and appreciative inquiry to inform the development of CC Version 2 (CCv.2); quantitative implementation evaluation to assess the appropriateness, acceptability, and effectiveness of CCv.2. Through several iterations designed and tested in collaboration with AYAs, CCv.2 had improvements in the user experience, such as the ability to send a private message to other users and the site becoming mobile responsive. Results from the evaluation showed CCv.2 was appropriate for connecting with other AYAs. Most AYAs reported satisfaction with CCv.2 and a positive impact on their feelings of sadness, worry, and/or anxiety. CCv.2 fills an important service provision gap in providing an appropriate and acceptable OHC for AYAs impacted by cancer, with initial promising psychological outcomes. [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]

Background: Adolescent and young adults with cancer are at increased risk of psychosocial difficulties relative to their healthy peers. Current models of inpatient face-to-face psychosocial care might limit the capacity for clinicians to provide timely and personalized assessment and intervention for this group. Telehealth offers a promising alternative toward increasing access to the provision of evidence-based psychosocial assessment and treatment for adolescent and young adults with cancer. Objective: This pilot study aimed to assess the feasibility and acceptability for both patients and clinicians of providing a psychosocial assessment via telehealth to adolescents and young adults currently receiving treatment for cancer, relative to face-to-face delivery. Methods: We included patients who were aged 15-25 years, currently receiving treatment, could speak English well, and medically stable. Patients were recruited from oncology clinics or wards from 5 hospitals located across Sydney and Canberra, Australia, and allocated them to receive psychosocial assessment (Adolescent and Young Adult Oncology Psychosocial Assessment Measure) with a clinical psychologist or social worker through face-to-face or telehealth modalities using a partially randomized patient preference model. Patients completed a pre- and postassessment questionnaire comprising validated and purposely designed feasibility and acceptability indices, including the impact of technical difficulties, if patients had their own devices; number of patients who were content with their group allocation; self-reported preference of modality; Treatment Credibility and Expectations Questionnaire; and Working Alliance Inventory. Clinicians also completed a postassessment questionnaire rating their impressions of the acceptability and feasibility of intervention delivery by each modality. Results: Of 29 patients approached, 23 consented to participate (response rate: 79%). Participants were partially randomized to either telehealth (8/23, 35%; mean age 16.50 years, range 15-23 years; females: 4/8, 50%) or face-to-face (11/23, 62%; mean age 17 years, range 15-22 years; females: 8/11, 72%) conditions. Four participants withdrew consent because of logistical or medical complications (attrition rate: 17.4%). Most participants (6/8, 75%) in the telehealth group used their computer or iPad (2 were provided with an iPad), with minor technical difficulties occurring in 3 of 8 (37.5%) assessments. Participants in both groups rated high working alliance (Working Alliance Inventory; median patient response in the telehealth group, 74, range 59-84 and face-to-face group, 63, range 51-84) and reported positive beliefs regarding the credibility and expectations of their treatment group. Postassessment preferences between face-to-face or telehealth modalities varied. Most patients in the telehealth group (5/8, 63%) reported no preference, whereas 6 of 11 (55%) in the face-to-face group reported a preference for the face-to-face modality. Conclusions: Telehealth is acceptable as patient comfort was comparable across modalities, with no significant technological barriers experienced. However, patients varied in their preferred interview modality, highlighting the need to tailor the treatment to patient preference and circumstances. [ABSTRACT FROM AUTHOR]