Pediatric psycho-oncology in Russia: Caregiver mental health and sleep outcomes on the oncology wards.

OBJECTIVES: Caregivers are at risk of poor sleep and elevated distress during their child's cancer treatment. Russia is currently underrepresented in the international psycho-oncology field, with no identified psychosocial standards of care, and limited or inconsistent psychological service provision, particularly for caregivers. This study aimed to determine the prevalence of Russian caregivers' psychological distress and identify factors associated with caregiver sleep duration when staying on the pediatric oncology ward. METHODS: We recruited 74 caregivers of children with cancer and 74 comparison caregivers in Rostov-on-Don, Russia. Participants completed a survey assessing clinical outcomes, sleep (St Mary's Hospital Sleep Questionnaire), and psychological distress (Depression Anxiety Stress Scales-21 [DASS-21]). RESULTS: Caregivers of children with cancer reported significantly higher scores for all DASS-21 subscales and higher depression (48.6% vs. 24.6%), anxiety (47.3% vs. 12.3%), and stress (45.9% vs. 0%) scores from "moderate" to "extremely severe." Caregivers of children with cancer reported significantly shorter sleep duration (5.82 vs. 7.49 h, t[143] = -6.22, p = 0.002), more night-time awakenings (3.20 vs. 1.25, t[135] = 6.94, p < 0.001) and worse sleep quality (46.5% vs. 9.6%; x2 [1] = 24.4, p < 0.001) than comparison caregivers. Caregivers with a higher total DASS-21 score (B = -1.32, p = 0.032) and those who were closer to diagnosis (B = -1.53, p = 0.012) reported shorter sleep duration. CONCLUSIONS: Russian caregivers of children with cancer experience high rates of psychological distress and poor sleep on the oncology ward. These findings provide an important target for future research and culturally relevant clinical interventions to improve caregivers' mental health and capacity for care.

Determinants of social functioning among adolescents and young adults with cancer: A systematic review.

OBJECTIVES: Survivors of adolescent and young adult (AYA) cancer report deficits in social functioning relative to healthy peers. Identifying factors related to their social functioning is critical to improve their long-term social outcomes. This review addressed: (1) How is social functioning defined and measured among studies of AYAs who have had cancer? (2) What factors have quantitatively/qualitatively are associated with/predictors of social functioning? and (3) What associated factors/predictors of social functioning are modifiable and amenable to intervention? METHODS: A systematic review was conducted to identify publications from 2000 to 2021, meeting these criteria: (1) mean/median age at diagnosis/treatment 13-40, (2) assessed social functioning with a validated measure and included factors associated with/predictive of social functioning and/or qualitatively assessed young people's perceptions of factors related to their social functioning and (3) was peer-reviewed/published in English. RESULTS: Thirty-seven publications were included. Definitions and measures of social functioning varied, and factors related to social functioning varied based on definition. Factors most commonly associated with decreased social functioning included treatment status (receiving or completed treatment), poor physical functioning, depression, negative body image, engaging in social comparisons, social/cultural stigma around cancer, and fatigue. Increased social functioning was most commonly associated with social support and the quality/age-appropriateness of care. CONCLUSIONS: Social functioning is multidimensional construct for AYAs diagnosed with cancer and may not be adequately assessed with measures of adjustment or quality of life. Future studies should clarify how to optimally define and measure social functioning in this population, to ensure their functioning can be protected and promoted long-term.

School and educational support programmes for paediatric oncology patients and survivors: A systematic review of evidence and recommendations for future research and practice.

OBJECTIVES: The Psychosocial Standards of Care (PSSC) in paediatric oncology prescribe the minimum standards for education support. It is unknown, however, if published education support programmes for children with cancer meet the PSSC standards for education support. Successful implementation of standards for education support is challenging but may be achieved with guidance. We aimed to (1) review education support programmes for childhood cancer patients and survivors against the PSSC standards and (2) provide practical recommendations for future research and implementation of education support programmes. METHODS: We searched PsycINFO, PubMed, CINAHL, EMBASE, and Educational Resources Information and Center databases. We reviewed the education support programmes using five evaluation criteria derived from the PSSC and summarised the structure of identified programmes. We examined the features and limitations of programmes that met all evaluation criteria. RESULTS: We identified 20 education support programmes in paediatric oncology, including peer programmes (n = 3), teacher programmes (n = 5), and school re-entry programmes (SRPs n = 12). We found that three SRPs met all evaluation criteria and that SRP components were timed according to the child's position on the cancer trajectory (e.g., diagnosis and treatment, school re-entry, and follow up throughout schooling). The supporting evidence of the programmes, however, is unclear due to the lack of adequately designed studies. CONCLUSIONS: SRPs provide a promising structure for future education support programmes. We recommend strategies for developing and evaluating education support that adheres to the PSSC and adapts to international and local contexts.

Health service and medication use of parents of childhood cancer survivors: a controlled comparison study.

BACKGROUND: Parents of childhood cancer survivors may be vulnerable to experiencing poor health outcomes, but little is known about how these parents use healthcare. This study investigated the nature and extent of survivors' parents' healthcare and medication use relative to a comparison group. We also examined whether demographic or cancer-related factors were related to healthcare use and whether healthcare use was associated with parents' general functioning. METHODS: We conducted a cross-sectional study involving 55 parents of cancer survivors recruited through eight Australian hospitals, and 135 parents of children without a cancer diagnosis, through an online recruitment platform. Participants responded to a questionnaire assessing their health service usage, regular medications, general functioning (engagement activities including work/study) and anxiety and depression symptoms (using PROMIS short forms). We performed regression analysis to determine factors related to healthcare and medication use in parents of survivors. RESULTS: More parents of survivors reported accessing mental health services than comparison parents (56% vs. 33%, p=.003), mainly due to their use of social workers. Fewer parents of survivors reported accessing other community health services, particularly general practitioners (51% vs. 78%, p<.001). Having a child survivor who was male was associated with greater use of community health services (B= -0.67, p=.008). No other demographic or cancer-related variables were associated with health service use. Health service use was not associated with general functioning, but greater medication use was associated with higher anxiety scores (B = 1.41, p=.008). CONCLUSION: Parents of childhood cancer survivors showed different patterns of health service use relative to comparison parents, but the extent of their use was not significantly linked with demographic or cancer-related variables. Comprehensive assessment of parents' needs in clinical encounters remains vital to identify and appropriately match support needs with available services.

A call to action for expanded sleep research in pediatric oncology: A position paper on behalf of the International Psycho-Oncology Society Pediatrics Special Interest Group.

Sleep and circadian rhythms are closely related to physical and psychosocial well-being. However, sleep and circadian rhythm disruptions are often overlooked in children with cancer, as they are frequently considered temporary side effects of therapy that resolve when treatment ends. Yet, evidence from adult oncology suggests a bidirectional relationship wherein cancer and its treatment disrupt sleep and circadian rhythms, which are associated with negative health outcomes such as poor immune functioning and lower survival rates. A growing body of research demonstrates that sleep problems are prevalent among children with cancer and can persist into survivorship. However, medical and psychosocial outcomes of poor sleep and circadian rhythmicity have not been explored in this context. It is essential to increase our understanding because sleep and circadian rhythms are vital components of health and quality of life. In children without cancer, sleep and circadian disturbances respond well to intervention, suggesting that they may also be modifiable in children with cancer. We present this paper as a call to (a) incorporate sleep or circadian rhythm assessment into pediatric cancer clinical trials, (b) address gaps in understanding the bidirectional relationship between sleep or circadian rhythms and health throughout the cancer trajectory, and (c) integrate sleep and circadian science into oncologic treatment.

Educational and vocational goal disruption in adolescent and young adult cancer survivors.

OBJECTIVE: Cancer in adolescents and young adults (AYAs) can interrupt important developmental milestones. Absence from school and time lost from work, together with the physical impacts of treatment on energy and cognition, can disrupt educational and vocational goals. The purpose of this paper is to report on AYA cancer survivors' experiences of reintegration into school and/or work and to describe perceived changes in their educational and vocational goals. METHODS: Adolescents and young adults recruited from 7 hospitals in Australia, aged 15 to 26 years and ≤24 months posttreatment, were interviewed using the psychosocial adjustment to illness scale. Responses were analysed to determine the extent of, and explanations for, cancer's effect on school/work. RESULTS: Forty-two AYA cancer survivors (50% female) participated. Compared with their previous vocational functioning, 12 (28.6%) were scored as experiencing mild impairment, 14 (33.3%) moderate impairment, and 3 (7.1%) marked impairment. Adolescents and young adults described difficulties reintegrating to school/work as a result of cognitive impacts such as concentration problems and physical impacts of their treatment, including fatigue. Despite these reported difficulties, the majority indicated that their vocation goals were of equal or greater importance than before diagnosis (26/42; 62%), and most AYAs did not see their performance as compromised (23/42; 55%). Many survivors described a positive shift in life goals and priorities. The theme of goal conflict emerged where AYAs reported compromised abilities to achieve their goals. CONCLUSIONS: The physical and cognitive impacts of treatment can make returning to school/work challenging for AYA cancer survivors. Adolescents and young adults experiencing difficulties may benefit from additional supports to facilitate meaningful engagement with their chosen educational/vocational goals.

Acceptability and feasibility of an e-mental health intervention for parents of childhood cancer survivors: "Cascade".

PURPOSE: The aim of this study was to evaluate the feasibility and acceptability of "Cascade": an online, group-based, cognitive behavioral therapy intervention, delivered "live" by a psychologist, to assist parents of children who have completed cancer treatment. METHODS: Forty-seven parents were randomized to Cascade (n = 25) or a 6-month waitlist (n = 22). Parents completed questionnaires at baseline, 1-2 weeks and 6 months post-intervention. Thirty parents completed full evaluations of the Cascade program (n = 21 randomized to Cascade, n = 9 completed Cascade post-waitlist). RESULTS: Ninety-six percent of Cascade participants completed the intervention (n = 24/25). Eighty percent of parents completed every questionnaire (mean completion time 25 min (SD = 12)). Cascade was described as at least "somewhat" helpful by all parents. None rated Cascade as "very/quite" burdensome. Parents reported that the "online format was easy to use" (n = 28, 93.3 %), "I learnt new skills" (n = 28, 93.3 %), and "I enjoyed talking to others" (n = 29, 96.7 %). Peer-to-peer benefits were highlighted by good group cohesion scores. CONCLUSIONS: Cascade is highly acceptable and feasible. Its online delivery mechanism may address inequities in post-treatment support for parents, a particularly acute concern for rural/remote families. Future research needs to establish the efficacy of the intervention. TRIAL REGISTRATION: ACTRN12613000270718, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12613000270718.

Fertility concerns among child and adolescent cancer survivors and their parents: A qualitative analysis.

Cancer diagnoses and treatment may have long-term effects on fertility. Semistructured interviews were administered to young cancer survivors (<20 years) and their parents (n = 97). Fertility related concerns were reported by 45 participants (46.4%). Themes included: distress regarding potential infertility; the effect of infertility on future relationships, self-esteem, and miscommunications/confusion about fertility status; access to fertility testing; and preservation options. Parents also reported challenges regarding how and when it was developmentally appropriate to talk to their children about fertility. The development of comprehensive consumer-driven approaches to managing the fertility concerns of young survivors and their families is essential.

Grandparents of children with cancer: a controlled study of distress, support, and barriers to care.

OBJECTIVE: For families under stress, positive grandparental relationships provide a valued 'safety net'. However, coping with family stressors can place a heavy burden on older individuals who may be experiencing declining health/energy themselves. This mixed-methods study assessed the prevalence of distress in grandparents of children with, and without, cancer, aiming to identify predictors of grandparental distress and quantify their barriers to care. METHODS: Two hundred twenty-one grandparents [87 cancer group; 134 controls; mean age 65.47 years (SD = 6.97); 33.5% male] completed self-report questionnaires assessing distress, anxiety, depression, anger, 'need for help', support use, and barriers to psychosocial care. RESULTS: A higher proportion of grandparents in the cancer group reported clinically relevant distress (32.9% vs. 12.7%; p < 0.001), anxiety (48.8% vs. 23.9%; p < 0.001), depression (24.4% vs. 6.0%; p < 0.001), and anger (23.5% vs. 6.8%; p = 0.001). In the cancer group, distress was higher in grandmothers and in families with fewer siblings. Grandparents rarely accessed evidence-based psychosocial support (<5% in both groups), although grandparents of children with cancer were more likely to seek religious/spiritual support. Barriers to help seeking included lack of knowledge and rurality. Grandparents of children with cancer qualitatively described undisclosed feelings of uncertainty and helplessness and provided advice to other grandparents to facilitate their coping. CONCLUSIONS: Grandparents of children with cancer were clearly more distressed than controls. Grandparents' capacity to support their families may be limited by their own, untreated, distress.

Neuropsychology reports for childhood brain tumor survivors: implementation of recommendations at home and school.

BACKGROUND: As pediatric brain tumor survivors may experience cognitive decline post-treatment, a neuropsychology assessment is often conducted. The assessment evaluates the child's cognitive functioning and highlights potential challenges. Whilst neuropsychology reports provide recommendations for the home and school, how this translates in practice is under researched. This study explored parent and teacher understanding of neuropsychology reports, implementation rates for recommendations and their perceived effectiveness. Barriers to implementation were also investigated. PROCEDURE: Twenty-five semi-structured interviews were conducted with 17 parents and 8 teachers of childhood brain tumor survivors from 15 Australian families who had received a neuropsychology report within 2 years of the interview. Twenty-four neuropsychology reports encompassing 131 recommendations were reviewed. The qualitative methodological framework of Miles and Huberman [Miles M, Huberman A. Qualitative data analysis: An expanded sourcebook. London: Sage; 1994] was used to analyze interview transcripts with QSR NVivo 9.0. RESULTS: The majority of parents and teachers had a sound understanding of the report. Implementation of recommendations at home and school was 47% and 41%, respectively. Recommendations that did not require extra effort and organization appeared more likely to be implemented, however, those perceived to be more effective or helpful did not necessarily have higher implementation rates. Key reported barriers to implementation barrier were patient reluctance, and a lack of parents' willingness to adopt the recommendation. CONCLUSIONS: Patient understanding and willingness play a significant role in the implementation of neuropsychology recommendations. Collaboration and clear communication between the patient, teacher, parent, and neuropsychologist is vital for effective management.

It's more than dollars and cents: the impact of childhood cancer on parents' occupational and financial health.

Few studies have evaluated the impact of childhood cancer on parents' occupational/financial status. This study explored parents' occupational/financial experiences posttreatment. Semistructured interviews were administered to 78 parents (44 mothers) of childhood cancer survivors diagnosed in the preceding 5 years. Transcripts were organized into themes using QSR NVivo8. Parents reported familial, psychological, and practical factors affecting their ability to return to work. Prioritizing family, reinstigating career progression, and negative workplace attitudes were particularly challenging. Parents of children with cancer experience substantial work-family conflict after their child's physical recovery from cancer. Family friendly policies and further research are recommended.

Social Anxiety Symptoms in Adolescents and Young Adults Recently Diagnosed with Cancer.

Purpose: Social anxiety disorder (SAD) remains an understudied potential link between the cancer experience and adolescent and young adult (AYA) cancer survivors' poor psychosocial outcomes. We investigated the frequency and duration of, as well as factors associated with, symptoms of SAD among AYAs with cancer. Methods: This longitudinal, mixed-methods study involved online surveys (including a validated screening tool for SAD) at recruitment and 6 months later, and a structured clinical interview. Results: Twenty-eight AYAs (aged 12-30 years, <1-year postdiagnosis, 50% male) completed the first survey (M = 6 months postdiagnosis). About 32% reported clinically significant SAD symptoms. Fourteen completed the follow-up survey (M = 12 months postdiagnosis), of which 9 (62%) reported persistent or worse symptoms of SAD significantly associated with emotional distress, physical appearance concerns, negative social cognitions, and depression. Conclusion: A subset of AYAs with cancer may experience clinically significant SAD symptoms that can affect their psychosocial well-being. Further work on how to best identify and support AYAs with SAD is needed.

Guidelines for Caring for the Social Well-Being of Adolescents and Young Adults with Cancer in Australia.

More than 1000 Australian adolescents and young adults (AYAs) are diagnosed with cancer annually. Many report unmet social well-being needs, which impact their mental health. Australian AYA cancer care providers lack guidance to address these needs well. We aimed to develop guidelines for caring for the social well-being of AYAs with cancer in Australia. Following the Australian National Health and Medical Research Council guidance, we formed a multidisciplinary working group (n = 4 psychosocial researchers, n = 4 psychologists, n = 4 AYA cancer survivors, n = 2 oncologists, n = 2 nurses, and n = 2 social workers), defined the scope of the guidelines, gathered evidence via a systematic review, graded the evidence, and surveyed AYA cancer care providers about the feasibility and acceptability of the guidelines. The guidelines recommend which AYAs should have their social well-being assessed, who should lead that assessment, when assessment should occur with which tools/measures, and how clinicians can address AYAs' social well-being concerns. A key clinician, who is knowledgeable about AYAs' developmental needs, should lead the assessment of social well-being during and after cancer treatment. The AYA Psycho-Oncology Screening Tool is recommended to screen for social well-being needs. The HEADSSS Assessment (Home, Education/Employment, Eating/Exercise, Activities/Peer Relationships, Drug use, Sexuality, Suicidality/Depression, Safety/Spirituality Assessment) can be used for in-depth assessment of social well-being, while the Social Phobia Inventory can be used to assess social anxiety. AYA cancer care providers rated the guidelines as highly acceptable, but discussed many feasibility barriers. These guidelines provide an optimal care pathway for the social well-being of AYAs with cancer. Future research addressing implementation is critical to meet AYAs' social well-being needs.

Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study.

BACKGROUND: Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through cancer treatment and in the long term. Disengagement from education or work can have lasting implications for AYAs' financial independence, psychosocial well-being, and quality of life. Australian AYAs with cancer lack access to adequate specialist support for their education and work needs and report a preference for web-based support that they can access from anywhere, in their own time. However, it remains unclear what web-based resources exist that are tailored to support AYAs with cancer in reaching their educational or work goals. OBJECTIVE: This study aimed to determine what web-based resources exist for Australian AYAs with cancer to (1) support return to education or work and (2) identify the degree to which existing resources are age-specific, cancer-specific, culturally inclusive, and evidence-based; are co-designed with AYAs; use age-appropriate language; and are easy to find. METHODS: We conducted an environmental scan by searching Google with English search terms in August 2022 to identify information resources about employment and education for AYAs ever diagnosed with cancer. Data extraction was conducted in Microsoft Excel, and the following were assessed: understandability and actionability (using the Patient Education and Materials Tool), readability (using the Sydney Health Literacy Laboratory Health Literacy Editor), and whether the resource was easy to locate, evidence-based, co-designed with AYAs, and culturally inclusive of Aboriginal and Torres Strait Islander peoples. The latter was assessed using 7 criteria previously developed by members of the research team. RESULTS: We identified 24 web-based resources, comprising 22 written text resources and 12 video resources. Most resources (21/24, 88%) were published by nongovernmental organizations in Australia, Canada, the United States, and the United Kingdom. A total of 7 resources focused on education, 8 focused on work, and 9 focused on both education and work. The evaluation of resources demonstrated poor understandability and actionability. Resources were rarely evidence-based or co-designed by AYAs, difficult to locate on the internet, and largely not inclusive of Aboriginal and Torres Strait Islander populations. CONCLUSIONS: Although web-based resources for AYAs with cancer are often available through the websites of hospitals or nongovernmental organizations, this environmental scan suggests they would benefit from more evidence-based and actionable resources that are available in multiple formats (eg, text and audio-visual) and tailored to be age-appropriate and culturally inclusive.

"We Have All This Knowledge to Give, So Use Us as a Resource": Partnering with Adolescent and Young Adult Cancer Survivors to Determine Consumer-Led Research Priorities.

Purpose: Involvement of adolescent and young adult (AYAs) cancer survivors as consumers in research is increasingly encouraged, yet few studies have identified the feasibility and acceptability of methods used to involve them. We aimed to identify: (1) How feasible and acceptable is a consumer-driven, workshop-based research priority-setting approach? And (2) what research priorities do Australian AYA consumers endorse? Methods: AYA cancer survivors diagnosed 15-30 years old and currently younger than 35 years were invited to participate. The AYAs completed a pre-workshop survey to rank their top three priorities from the United Kingdom-based James Lind Alliance list, participated in a 90-minute focus group, and completed a post-workshop evaluation survey. We assessed the workshop feasibility by reviewing considerations, challenges, and enablers of success in the planning and conduct processes. Acceptability was assessed through participants' evaluation surveys and facilitators' informal reflections. The top three priorities were determined from pre-workshop surveys and focus group data. Results: Six survivors participated (M age = 24.2 years, M = 5 years post-treatment, 83% female). All reported that the workshop was an acceptable way to engage with researchers. Costs and recruitment challenges limited the workshop's feasibility. The AYAs' top priority was: What psychological support package improves psychological well-being, social functioning, and mental health during and after treatment?Discussion: The AYA survivors found our workshop to be an acceptable way to engage in research priority-setting. However, the feasibility of this approach depends on the resources available to researchers. Future research is needed to define the optimal method of engagement: What is most acceptable for AYAs and feasible for researchers?

Social Anxiety Symptoms in Survivors of Childhood and Adolescent Cancer.

Purpose: Adolescent and young adult (AYA) cancer survivors may be at risk of developing symptoms of social anxiety disorder (SAD) due to disruptions in social participation and functioning following a cancer diagnosis. This study aimed to explore (1) the proportion of Australian AYA-aged survivors of childhood and adolescent cancer who experience symptoms of SAD, (2) how symptoms of SAD are described by survivors as affecting their daily social functioning. Methods: A mixed-methods cross-sectional design was employed, inviting survivors, aged 13-25 years, who had completed treatment between one and ten years ago. Survivors completed a paper-based questionnaire, containing validated measures of SAD, and an optional semistructured interview assessing current social functioning and social anxiety. Results: Twenty-seven survivors aged 13-25 years participated (M = 19.15, 51.9% male, and 7 years post-treatment). Nine (33%) participants reported clinically significant symptoms of SAD. In interviews, survivors reported worries about how others perceived them and fears around meeting new people. Survivors described that this impacted their daily social functioning, leading them to avoid, or endure with distress, feared social situations. Conclusion: This study shows that clinically significant social anxiety may be a concern for a subset of survivors of childhood/adolescent cancer. Identifying which young people are at risk of SAD after cancer and how best to support this vulnerable cohort is critical.