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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]

Background: Fear of progression (FOP) is a common and significant concern among cancer patients, encompassing worries about cancer progression during active treatment. Elevated levels of FOP can be dysfunctional. This study aims to assess the efficacy of an Acceptance and Commitment Therapy (ACT)-based intervention on FOP, anxiety sensitivity (AS), and quality of life (QOL) in breast cancer patients. Methods: A clinical trial was conducted involving 80 stage I-III active-treatment breast cancer patients with a score greater than 34 on the Fear of Progression Questionnaire-Short Form scale. These patients were randomly assigned in a 1:1 ratio to either an intervention group, which received weekly 70-min sessions of 5-ACT-bsed group-therapy, or a control group that received usual treatment. Variables including FOP, AS, QOL, and ACT-related factors were assessed using ASQ, QLQ-C30, Cognitive Fusion Questionnaire, and Acceptance and Action Questionnaire-II at three time points: baseline, post-intervention, and 3-month follow-up. The efficacy of the intervention was evaluated using mixed model analysis across all time-points. Results: The fidelity and acceptability of the ACT-based manual were confirmed using significant methods. A significant reduction in FOP was observed only in the ACT group at post-intervention (P-valueACT < 0.001; Cohen dACT = 1.099). Furthermore, the ACT group demonstrated a more significant reduction in FOP at follow-up. Furthermore, all secondary and ACT-related variables, except for the physical symptoms subscale, showed significant improvement in the ACT group compared to the control group. Conclusions: Our ACT-based manual showed promise for reducing FOP, AS, and improving QOL, and ACT-related variables in breast cancer patients 3 months following the intervention. [ABSTRACT FROM AUTHOR]

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]

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]

(1) Background: The COVID-19 global pandemic has impacted people worldwide with unique implications for vulnerable groups. In this cross-sectional study, we examined the impact of the early pandemic on children undergoing active cancer treatment and their parents. (2) Methods: In May 2020, 30 parents of children undergoing active cancer treatment completed an online survey regarding the impact of COVID-19 on their child's cancer care, perceived utility of telemedicine, and child and parent mental health status. (3) Results: Most participants (87%) reported that they did not experience any changes to major cancer treatments. Among those who reported using telemedicine, 78% reported this to be beneficial. Over half of the participants reported that their child's mental health status was worse now than prior to the COVID-19 global pandemic. Parent-reported child anxiety scores were significantly higher for those who reported changes to mental health care for their child compared to those who did not report the same, t(25.99) = −3.04, p = 0.005. (4) Conclusion: Child and parent mental health status were affected when compared to pre-pandemic. Telemedicine appears to be a promising complement to face-to-face meetings for some families and warrants further exploration. [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]

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]

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]

Aim: Nonadherence to oral chemotherapy (OC) can lead to health complications, including premature death. Mobile phones are increasingly used to deliver medication adherence interventions. However, there is limited evidence about mobile phone–based interventions to increase adherence to OC, specifically. This study explores the proof‐of‐concept of a smartphone program to support adherence to OC in people with cancer. Methods: This was a 10‐week, nonrandomized, multisite trial. The outcomes assessed were acceptability, satisfaction with the intervention, adherence to OC, knowledge about OC, and side‐effects presence and severity. The program consisted of short message service (SMS) reminders to take OC, as well as information about OC, including the management of side‐effects. Results: Twenty‐two participants (17–74 y/o, median age 60 y/o) were recruited at six hospitals. The sample included 10 different cancer diagnoses (predominance of breast cancer) and 11 OC medications. Acceptability of the intervention was high, with 95% of the enrolled participants completing postintervention measures, and 81% reporting high satisfaction with the program. The intervention was found to have no effect on supporting adherence to OC (assessed by self‐report and medication event monitoring system) in this sample. An increase in knowledge about OC was observed at postintervention (p = 0.010). Conclusions: This study demonstrated proof‐of‐concept of the smartphone program and highlighted the need for intervention and trial design‐related refinements. Future work should evaluate the effect of the program on adherence to OC with nonadherent patients. [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]

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 and young adult (AYA; 13 to 39 years) survivors of childhood cancer may be especially vulnerable to physical health and mental health concerns during the pandemic. We investigated the impact of COVID-19 on the mental health status of AYA survivors (Aim 1) and shared tailored, evidence-based health-related information on COVID-19 (Aim 2). Methods: Between May and June 2020, participants completed a cross-sectional online survey assessing their cancer history, current mental health status, and their COVID-19 information needs. Results: Ninety-four participants (78 females, 13 males, 2 non-binary) with a mean age of 26.9 years (SD = 6.2) were included in the final sample. Participants reported residing from 10 countries and 94% identified as White. Nearly half of the participants (49%) described their mental health status as worse now than before the pandemic. Thirty-nine participants (41%) that indicated their current mental health status was tied to fears/worries about their past cancer and treatment experienced a higher level of anxiety and PTSS than those who did not report the same. Most participants (77%) had not received any information related to the potential risks of COVID-19 and expressed an interest in receiving this information. In response, an infographic detailing recommended strategies for coping with mental health problems in the pandemic, along with preliminary study findings, was developed. Discussion: AYA survivors reporting their mental health status was linked to their past cancer experienced poorer mental health. There is a value to educating survivors on their potential health risks, but accounting for their perceived mental health vulnerabilities should be considered when disseminating knowledge. The use of an infographic is a unique contribution towards the development of innovative and personalized means of sharing health education to this vulnerable yet resilient group. This research on the mental health status of AYA survivors very early in the pandemic informs continued initiatives investigating the rapidly changing nature of how COVID-19 may impact AYA survivors today and in the future. [ABSTRACT FROM AUTHOR]

Background: Adolescent and young adult (AYA; 13 to 39 years) survivors of childhood cancer may be especially vulnerable to physical health and mental health concerns during the pandemic. We investigated the impact of COVID-19 on the mental health status of AYA survivors (Aim 1) and shared tailored, evidence-based health-related information on COVID-19 (Aim 2). Methods: Between May and June 2020, participants completed a cross-sectional online survey assessing their cancer history, current mental health status, and their COVID-19 information needs. Results: Ninety-four participants (78 females, 13 males, 2 non-binary) with a mean age of 26.9 years (SD = 6.2) were included in the final sample. Participants reported residing from 10 countries and 94% identified as White. Nearly half of the participants (49%) described their mental health status as worse now than before the pandemic. Thirty-nine participants (41%) that indicated their current mental health status was tied to fears/worries about their past cancer and treatment experienced a higher level of anxiety and PTSS than those who did not report the same. Most participants (77%) had not received any information related to the potential risks of COVID-19 and expressed an interest in receiving this information. In response, an infographic detailing recommended strategies for coping with mental health problems in the pandemic, along with preliminary study findings, was developed. Discussion: AYA survivors reporting their mental health status was linked to their past cancer experienced poorer mental health. There is a value to educating survivors on their potential health risks, but accounting for their perceived mental health vulnerabilities should be considered when disseminating knowledge. The use of an infographic is a unique contribution towards the development of innovative and personalized means of sharing health education to this vulnerable yet resilient group. This research on the mental health status of AYA survivors very early in the pandemic informs continued initiatives investigating the rapidly changing nature of how COVID-19 may impact AYA survivors today and in the future. [ABSTRACT FROM AUTHOR]

Objective: Routine psychosocial screening and assessment of people diagnosed with cancer are crucial to the timely detection of distress and provision of tailored supportive care; however, appropriate screening tools have been lacking for adolescents and young adults (AYAs), who have unique needs and experiences. One exception is the recently validated AYA Psycho-Oncology Screening Tool (AYA-POST) for use with young people aged 15–29 years, which comprises a distress thermometer and age-specific needs assessment. This study investigates the clinical utility of this measure, as well as the subsequent service responsiveness within the Australian Youth Cancer Services. Method: In total, 118 AYAs and 29 healthcare professionals: (HCPs) completed surveys about the clinical utility of the AYA-POST; a subset of 30 AYAs completed a 3-month follow-up survey assessing service responsiveness. Descriptive statistics (frequencies/means) were computed for all items, with chi-square analyses used to explore whether perceived clinical utility varied with AYA age, AYA sex, HCP discipline or HCP length of time using the AYA-POST. Results: Participants' responses demonstrate high levels of satisfaction with the tool, evidencing its appropriateness, practicability and acceptability. Moreover, the AYA-POST was reported to facilitate communication about psychosocial needs and prompt referrals, indicating good service responsiveness. Ratings of clinical utility did not differ significantly between AYA and HCP groups. Conclusion: This study demonstrates that the AYA-POST is an appropriate tool in the psychosocial screening of AYAs with cancer, facilitating the identification of distress and unique concerns in this population and valuable in triaging and tailoring care for young cancer patients. [ABSTRACT FROM AUTHOR]

Not monitoring adherence to oral anticancer therapies (OAT) can lead to poor clinical outcomes, including premature death as reported by Foulon et al. (Acta Clin Belg 66(2):85–96, 2011) and Greer et al. (Oncologist 21(3):354–76, 2016). Barriers to the implementation of supportive cancer care interventions in medication adherence occur with multiple hospital sites, cancer diagnoses, and numerous healthcare professionals. This commentary describes challenges and strategies from two OAT adherence trials in Australia and Switzerland to assist researchers in the design and implementation of future interprofessional trials. [ABSTRACT FROM AUTHOR]

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

Purpose: Given the large number of adolescents and young adults (AYAs) impacted by parental cancer and the potential for negative psychosocial outcomes in this vulnerable population, this study examined the mediating role of offspring unmet needs with regard to parental cancer and the relation between AYAs psychosocial adjustment and perceived illness unpredictability. Methods: A total of 113 AYAs (aged 11–24 years) living with a parent diagnosed with cancer completed a questionnaire assessing illness unpredictability, offspring unmet needs, and psychosocial adjustment (i.e., health-related quality of life and internalizing problems). Results: Higher offspring unmet needs were associated with lower health-related quality of life (r = –0.24**) and higher internalizing problems (r = 0.21*). Offspring unmet needs mediated the relation between illness unpredictability and health-related quality of life (standardized indirect effect = –0.100* [–0.183, –0.018]) but not internalizing problems (standardized indirect effect = 0.067 [–0.015, 0.148]). In particular, higher illness unpredictability was related to higher unmet needs (β = 0.351**) which, in turn, predicted lower health-related quality of life (β = –0.286**). Conclusion: These findings identify offspring unmet needs and illness unpredictability as implicated in AYAs positive psychosocial adjustment to parental cancer. Given that AYAs are at greater risk of elevated psychosocial difficulties, interventions should target offspring unmet needs and perception of illness unpredictability to mitigate the adverse effects of parental cancer. [ABSTRACT FROM AUTHOR]

Purpose: Adolescent and young adult (AYA) cancer survivors' families can face ongoing challenges into survivorship. Families' adjustment and functioning as a unit can subsequently impact AYAs' mental health and quality of life. This study examined AYA cancer survivors' perceived family functioning, compared with their peers, and investigated factors associated with family functioning. Methods: Eligible participants were aged between 15 and 40 years, fluent in English, and cancer survivors who had completed treatment. AYA cancer survivors were recruited from hospital clinics, and the comparison group from an affiliated university campus. Participants completed the McMaster Family Assessment Device, Kidcope, and the Depression, Anxiety and Stress Scale-Short Form. We analyzed between-group differences in family functioning using multivariate analysis of covariance and used partial correlations to investigate associations between demographic cancer-related psychological coping variables and family functioning. Results: Ninety-three AYA cancer survivors and 141 comparison peers participated (ages: 15–32 years). AYA cancer survivors reported significantly better family functioning (p = 0.029), lower depression (p = 0.016), and anxiety symptoms (p = 0.008) compared with the comparison group. Approximately one-third of AYA survivors (34.4%) reported clinically significant maladaptive family functioning; however, this was more prevalent in the comparison group (50.4%). After adjusting for covariates, poorer family functioning was associated with AYA survivors using more avoidant escape-oriented coping strategies (p = 0.010). Conclusions: Our cancer survivor cohort reported better family functioning and psychological outcomes compared with their peers. Interventions targeting avoidant coping behaviors may support improved family functioning in some survivors. Further research disentangling the relationship between coping mechanisms and family functioning among AYA cancer survivors is needed. [ABSTRACT FROM AUTHOR]

People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify the psycho-social and information support needs of AYA cancer care consumers with intellectual disability to generate recommendations for future research and cancer care service delivery enhancement. We searched eight databases yielding 798 articles. Following abstract and full-text review, we identified 12 articles meeting our inclusion criteria. Our three themes related to communication and accessible information; supports and system navigation, cancer service provider training, and reasonable adjustments. There was a lack of user-friendly, accessible information about cancer and screening programs available. Both paid and family carers are critical in accessing cancer supports, services, and screening programs for AYA with intellectual disability. Ongoing training should be provided to healthcare professionals regarding the importance of care screening for AYAs with intellectual disability. This review recommends that AYA with intellectual disability and their family carers be involved in developing tailored cancer services. This should focus on enabling inclusive screening programs, accessible consent, and challenging the enduring paternalism of support services via training and appropriate communication tools. [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]

Adolescents impacted by their own or a relative's cancer diagnosis experience significant psychosocial needs. Residential programmes provide opportunities to address these, yet limited evaluation research and unclear reporting of therapeutic and theoretical underpinnings complicate efforts to understand programme effects. This paper reports the development and process evaluation of PEER, a four-day programme with psychosocial (acceptance and commitment therapy, self-compassion) and recreational components for adolescents impacted by their own or a parent/sibling's cancer. Staff (N = 51) and adolescents (N = 148, 12–17 years) who attended a PEER programme participated in this evaluation. The evaluation of fidelity included measures of facilitators' confidence to deliver content, adherence to the programme manual, quality of programme delivery, participants' engagement, and overall satisfaction. The process evaluation included assessment of quality of life, distress, and process variables (psychological flexibility, mindfulness, self-compassion) at pre-programme, post-programme, and two-month follow-up, as well as qualitative feedback from participants and facilitators. Moderation analyses identified predictors of clinically significant improvement in psychosocial outcomes. The programme was delivered with good fidelity, and participants reported high satisfaction and engagement. Approximately 15–20% of participants experienced clinically-meaningful improvements in distress and quality of life; those who reported higher distress and lower baseline psychological flexibility, mindfulness and self-kindness experienced greater improvements. Qualitative feedback additionally evidenced the value of peer connection and support. The evaluation evidences PEER's feasibility, acceptability and value for adolescents impacted by cancer, particularly those experiencing greater distress. Its success indicates the potential of the therapeutic approaches used, and for community organisations to develop interventions complementing services offered by healthcare systems. Highlights: A new programme informed by Acceptance and Commitment Therapy and self-compassion was developed for adolescents impacted by cancer. The programme was delivered with high fidelity, and found to be feasible and acceptable for participating adolescents. 15–20% of participants reported clinically-meaningful improvements in distress and quality of life. Those with higher baseline distress and lower psychological flexibility, mindfulness and self-kindness reported greater benefits. [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]

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]

Although illness perceptions have significant implications for psychological morbidity in those diagnosed with a physical illness, the strength of this relationship in their family members remains understudied. The validity of findings is dependent on the quality of the instruments used; therefore, it is essential that psychometrically robust measures of illness perceptions are available. The purpose of this systematic review was to identify, assess and compare the psychometric properties of instruments designed to measure illness perceptions in family members of individuals with chronic physical illnesses. A systematic search was conducted using MEDLINE, PubMed, CINAHL, Scopus and PsycINFO databases, and supplemented with forward and backward searches. Studies were included in the review if they described the development, adaptation or psychometric evaluation of an instrument designed to measure illness perceptions in family members of an individual with a chronic physical illness. The methodological quality of included studies was assessed using the COSMIN Risk of Bias checklist. The psychometric quality of instruments was evaluated using published quality assessment criteria. Eleven articles describing nine different instruments were included in the review. Almost all instruments were designed for parents of a child with a chronic illness. There was wide variation in the quality of methods used to develop, adapt or evaluate the instruments, and missing information restricted the evaluation of psychometric properties. Further validation is needed for all instruments before meaningful conclusions can be drawn. Findings indicate that measurement of illness perceptions in children or siblings of an individual with a chronic physical illness has been largely ignored. Future research addressing this gap would be an important addition to the current body of work examining illness perceptions in family members. [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: The purpose of this study was to examine how cancer‐related fertility concerns impact on couple relationships from the perspectives of people with cancer (PWC) and partners of people with cancer. Methods: A qualitative research design was used, drawing data from open‐ended responses to a survey and in‐depth individual interviews. Eight hundred and seventy‐eight PWC (693 women, 185 men) and 144 partners (82 women, 62 men), across a range of tumour types and age groups, completed a survey, and 78 PWC (61 women and 17 men) and 26 partners (13 women and 13 men), participated in semi‐structured interviews. Results: Thematic analysis identified that many PWC and partners experience a 'double burden', manifested by cancer‐related fertility concerns creating relational stress, changes to couple sexual intimacy and feelings of inadequacy when forming new relationships. However, many participants adopted strategies to facilitate coping with infertility or fertility concerns. This included acceptance of infertility and privileging of survival, focusing on relationship growth, optimism and nurturing in other ways. Conclusion: Cancer‐related fertility concerns can have a significant impact on couple relationships. Psychological support from clinicians may facilitate couple coping, as well as help to address concerns about future relationships for un‐partnered people with 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]

Purpose: Adherence to oral antineoplastic drugs is a complex phenomenon, and knowledge about the reasons that people with cancer do not adhere to their prescriptions is essential to inform adherence-related support in clinical and research contexts. This study aims to provide an up-to-date summary of the key reasons for non-adherence to oral antineoplatic drugs (OAD) in people with cancer. Methods: Electronic databases Medline, Embase, Emcare, and PsychINFO were searched for systematic reviews and studies published between January 2010 and March 2018. Data was analyzed and extracted by two independent reviewers. Results: Three systematic reviews and two studies were included in the review. Key factors for non-adherence were classified as either modifiable or non-modifiable factors. Side effects, forgetfulness, and poor knowledge about OAD were identified as modifiable factors while co-payment, age, regimen complexity. and time since diagnosis were identified as non-modifiable factors. Most of the included studies focused on breast cancer and chronic myeloid leukemia (CML) patients. Low methodological quality and different adherence cut-off rates were observed in the included literature. Conclusions: More research with rigorous methodology and diverse cancer types is needed to increase evidence on the reasons for OAD non-adherence. However, findings from this study may serve to aid in drafting guidelines and suitable interventions for adherence-related support to OAD users. [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]

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 uses the newly developed Bereaved Cancer Needs Inventory to identify the unmet psychosocial needs of adolescents and young adults who have experienced the death of a parent or sibling to cancer, and to explore the relationship between unmet needs and psychological distress.Methods: In total, 278 bereaved offspring and 38 bereaved siblings (12-25 years) completed the 58-item Bereaved Cancer Needs Inventory (BCNI) and the Kessler psychological distress scale (K10).Results: Bereaved offspring reported 27 unmet needs on average (SD = 16.87, range: 0-58); 94% indicated at least one unmet need, with 80% indicating 10 or more needs. Bereaved siblings reported 23 unmet needs on average (SD = 17.30, range: 0-57); 97% indicated at least one unmet need, with 68% indicating 10 or more needs. For both bereaved offspring and siblings, the needs for "support from other young people" and "time out and recreation" were most frequently reported as unmet. Approximately half of all participants reported high to very high levels of psychological distress. There was a significant positive relationship between the number of unmet needs and the psychological distress score on the K10 for both groups.Conclusions: Bereaved offspring and bereaved siblings report unmet psychosocial needs across many domains, which are associated with their levels of psychological distress. Findings suggest the BCNI may be used by healthcare professionals to identify unmet needs and direct clients to the appropriate services, resources, or support; with the intent to reduce their risk of mental illness and 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]

Objective: Breast cancer (BC) accounts for 24% of female cancers, with approximately one quarter of women likely to have offspring aged less than 25 years. Recent publications demonstrate negative psychosocial well-being in these offspring. We prospectively assessed for psychological distress and unmet needs in offspring of BC patients.Methods: Eligible offspring aged 14 to 24 years were consented and completed the Kessler-10 Questionnaire and Offspring Cancer Needs Instrument. Demographic and BC details were obtained.Results: Over a 7-month period, 120 offspring from 74 BC patients were included. Fifty-nine mothers had nonmetastatic BC (nMBC), and 27 had metastatic BC (MBC) with median time from diagnosis of 27.6 and 36.1 months, respectively. The prevalence of high/very high distress was 31%, with significantly higher scores reported by female offspring (P = .017). Unmet needs were reported by more than 50% of offspring with the majority of needs relating to information about their mother's cancer. Greater unmet needs were seen in female offspring and offspring with none or one sibling for several domains (practical assistance, time-out, dealing with feelings, and support from friends; P < .05). Greater unmet needs were seen in regard to feelings for MBC patients' offspring compared with nMBC but were similar for other unmet needs.Conclusions: Our study confirms high levels of psychological distress in offspring of BC patients, with female offspring reporting significantly higher emotional distress and unmet needs. More than 50% of respondents reported unmet needs in areas that can potentially be supported, including greater information provision, improving practical issues, and enabling sufficient recreational time. [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]

Background: Individuals construct beliefs about an illness based on their own perceptions, interpretation, and understanding of the illness and its treatment. These beliefs (collectively referred to as "illness cognitions" or "representations") can have implications for psychological outcomes in family members and carers of an individual with an illness. The aim of this study was to explore young people's perceptions of their parent's cancer using the Common-Sense Model of Self-Regulation as a theoretical framework. Methods: Semi-structured, one-on-one interviews were conducted with young people who had a parent diagnosed with cancer. Interview transcripts were analysed using deductive thematic analysis techniques. Results: Eleven young people aged 15–24 years participated in the study. Major themes aligned with the dimensions of the Common-Sense Model of Self-Regulation. Young people described their experiences with parental cancer with reference to cognitive representations (beliefs about the illness identity, their understanding or coherence of the illness, and consequences, curability or controllability, timeline, and cause of the illness) and emotional representations (emotional beliefs and subjective feelings about the illness). Conclusions: Findings indicate that young people's perceptions of their parent's cancer can be usefully described within the framework of the Common-Sense Model of Self-Regulation. Future research should investigate the relationships between young people's illness cognitions, coping strategies, and psychological adjustment following their parent's cancer diagnosis. This will provide valuable insights for the development of interventions that target specific types of illness cognitions associated with maladaptive coping strategies and poor adjustment. [ABSTRACT FROM AUTHOR]

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

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

Genetic testing is becoming increasingly available for adolescents who are undergoing cancer treatment or at risk of cancer predisposition syndromes. With this narrative review, we aimed to synthesize the evidence on psychosocial outcomes and adolescents' understanding of genetic testing—thus far, an underresearched topic. Both psychological benefits and harms of predictive testing were reported in adolescents from high-risk families. Harms were mainly related to cancer-specific distress and increased worries. Findings on genetic understanding were sparse. Future studies should focus on psychosocial outcomes and adolescents' understanding undergoing genetic testing and enabling access to genetic counseling pre-testing and post-testing. [ABSTRACT FROM AUTHOR]

Purpose: Cancer is a significant health concern for adolescents and young adults (AYAs; aged 15–24 years). Monitoring population-level changes in incidence, mortality, and survival is complicated by the lack of published data presenting statistics separately for AYAs. This study synthesizes and reviews data on AYA cancers in Australia, including trends in incidence and mortality. Methods: National data were extracted for 1980–2012, primarily from the Australian Cancer Database and Australian National Mortality Database. Incidence, mortality, and survival trends are described, and incidence and mortality projections are reported. Results: In 2000–2009, the annual all-cancer incidence was 31.7 cases per 100,000 population, and the mortality rate was 4.1 per 100,000. Incidence, mortality, and survival varied widely, indicating areas of concern. Melanoma was the most common cancer, and bone cancer had the highest mortality and poorest survival rates. All-cancer incidence rates peaked in the late 1990s, but then declined, largely due to melanoma. All-cancer mortality decreased throughout the study period, but showed no improvements for some common sites (i.e., brain, bone, soft tissue). Further reductions in all-cancer incidence and mortality are projected for the next decade, although specific cancers (colorectal cancers and lymphomas) were projected to increase in incidence. Conclusions: Observed Australian cancer trends are largely consistent with trends for other high-income populations. While overall decreases in incidence and mortality are encouraging, consistently high mortality and poor survival for some cancers remain concerning. Planned data initiatives for AYAs with cancer will aid in resolving whether trends continue and projections are realized in the future. [ABSTRACT FROM AUTHOR]