Search

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: 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 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]

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]

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]

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]

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 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]

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]

OBJECTIVES: To review the characterises of cancer in the adolescence and young adult age group; the medical, psychosocial and behavioral late effects; survivorship care planning and transition; current research priorities and practice implications. DATA SOURCE: Published articles, research studies and position statements. CONCLUSION: Survivors of cancers that occurred during adolescence young adulthood (AYA) are confronted with the dual demands of managing their transition to independent adulthood, concurrently with their transition from cancer patient to cancer survivors, with an associated reduction in support from medical services. AYA survivors alsoface complex medical, psychosocial and behavioral late effects, including fertility and mental health issui. IMPLICATIONS FOR NURSING PRACTICE: An understanding of the impact of cancer diagnoses among this age group, including survivors' abüities to reintegrate into 'normal' life and potential long term consequences is necessary to provide the best support. This care and support can be enhanced through multidisciplinary teams who work together to address the medical and psychosocial needs of AYAs diagnosed with cancer. [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.

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]