The experiences of children and adolescents with cancer returning to school: A qualitative meta-synthesis.

BACKGROUND: Returning to school can be challenging for children and adolescents with cancer who have been absent for a long time. As there is little known about the return to school experience of children and adolescents with cancer, this meta-synthesis aimed to describe the experiences of children and adolescent cancer patients as they return to school. METHODS: Seven English databases and three Chinese databases were searched from inception to March 14, 2023. The Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) was used to appraise study quality. Data were synthesized using the Thomas and Harden thematic and content analysis method. RESULTS: Twelve qualitative studies met the inclusion criteria and were analyzed into meta-synthesis. Data synthesis led to constructing four analytical themes and twelve sub-themes. The four major themes constructed were:benefits to school re-entry, barriers to school re-entry, motivators to school re-entry and the adaptation process after returning to school. CONCLUSION: Children and adolescents with cancer were willing to return to education and can adapt to school life over time. But they were faced with challenges, including physical, psychological, and social barriers. Appropriate measures need to be taken to reduce those barriers. IMPLICATIONS TO PRACTICE: Findings can be used to inform future research and interventions to support a successful return to education for children and adolescents with cancer. Healthcare providers should address the needs of children and adolescents at different stages and actively work with schools, hospitals and families to help childhood cancer survivors successfully return to school.

Decisional conflicts, anxiety, and perceptions of shared decision-making in cancer treatment trajectory among adolescents with cancer: A longitudinal study.

PURPOSE: To examine the trajectory of decisional conflict and anxiety experienced by adolescents after the cancer diagnosis, and explore their perceptions on participation in shared decision-making (SDM). DESIGN: This longitudinal study used incorporated data from questionnaires and interviews. METHODS: Participants recruited from an academic hospital in southern Taiwan ranged in age from 13 to 20 years with a cancer diagnosis within 1 month and received cancer treatment. Each participant completed questionnaires on decisional conflict and anxiety at diagnosis, 1, 3, and 6 months later. Individual interviews were to gain an in-depth understanding of SDM. FINDINGS: Total scores on decisional conflict changed significantly over time (F = 2.98, p = 0.039); the scores at 1 month were higher than 3 months (t = 2.18, p = 0.04) and 6 months (t = 2.97, p = 0.008). Participants perceived significantly different levels of values clarify (F = 9.49, p < 0.01) and support (F = 8.46, p < 0.01) over time. Only 27.3% of participants were anxiety-free. No significant differences were found in anxiety over time. The perception of SDM was a situational involvement. CONCLUSIONS: Decisional conflict changed over time. Participants experienced greater decisional conflict at 4-8 weeks after diagnosis and their anxiety did not decrease over time. The different levels of participation in SDM during their treatment trajectory were found. CLINICAL RELEVANCE: Participants experienced the highest decisional conflict during diagnosis, and highlighted how their roles in healthcare discussions varied from direct participation to indirect involvement. Further research is needed to develop an SDM model which accommodates different levels of needs and implements timely support.

Social exclusion and behavior problems in adolescents with cancer and healthy counterparts.

PURPOSE: This cross-sectional study was conducted to determine social exclusion, internalized and externalized behavioral problems in adolescents with cancer and to compare them with healthy counterparts. DESIGN AND METHODS: The sample consisted of adolescents age 10-19 years (N = 70) followed up in the hemato-oncology outpatient clinic of a tertiary hospital and healthy adolescents age 10-19 years (N = 92) who were studying in secondary and high schools. The data were collected with a questionnaire for adolescents with cancer and healthy adolescents, The Ostracism Experience Scale for Adolescents (OES-A), Youth Externalizing Behavior Screener (YEBS), and Youth Internalizing Problems Screener (YIPS). RESULTS: The OES-A mean scores of cancer and healthy adolescents in the study were 35.68 ± 9.38 and 27.64 ± 5.35 (p ≤ 0.001), the YEBS mean scores were 23.51 ± 4.88 and 20.52 ± 5.42 (p ≤ 0.001), and the YIPS mean scores were 21.72 ± 6.48 and 19.18 ± 7.60 (p = 0.007), respectively. There was a low-level positive correlation between the mean scores of the OES-A and YEBS (r = 0.345, p < 0.05) and mean scores of the YEBS and YIPS (r = 0.308, p < 0.05) of adolescents with cancer. CONCLUSIONS: Adolescents with cancer had higher scores on social exclusion, internalized and externalized behavioral problems than healthy counterparts in the current study. PRACTICE IMPLICATIONS: The current study should lead pediatric oncology nurses to be more aware of social exclusion and internalized and externalized behavioral problems in adolescents with cancer after clinical treatment, and to provide appropriate psycho-oncological care.

Development and feasibility of Mandarin-language bone health scales for adolescents with cancer in Taiwan.

Cancer during adolescence increases the risk for bone mass deficiency later in life. Adolescents with cancer must learn to improve their bone health to avoid osteoporosis. In the present cross-sectional study, we developed and tested scales to assess the bone health self-efficacy and beliefs of adolescents with cancer in Taiwan. Test development followed three stages: item generation and scale formatting, examination of content validity, and validation of psychometric properties with a sample of 100 adolescents with cancer. Through the validation process, this research generated the seven-item Bone Health Self-Efficacy Scale and the 13-item Bone Health Belief Scale. Multiple indices demonstrated construct validity. Cronbach's alphas (0.809 and 0.705) demonstrated internal consistency. No items caused a drop in Cronbach's alpha of 10%, all inter-item correlations were <0.800, and the factor loadings for all items reached 0.400, demonstrating item appropriateness. The present study provides initial evidence of the scales' accessibility and feasibility for adolescents with cancer who speak Mandarin. These scales might also help clinical nurses evaluate the effectiveness of bone health education provided to adolescents with cancer.

Perspectives of Health Care Providers on Peer Support for Adolescents with Cancer in Pediatrics.

Health care providers (HCPs) play a key role in psychosocial care of adolescents with cancer (AWC) and present a unique perspective. This prospective study included a brief survey followed by an interview, seeking to understand HCPs' viewpoints on peer support needs of AWC. Participants were 10 multidisciplinary HCPs with 5-30 years of experience. Three key themes found were: observations made and relationships with AWC; challenges to providing support; and potential peer support interventions. HCPs want to provide peer support resources but lack adequate information. Next steps: interventions should include information dissemination to all HCPs caring for AWC.

Does age play a role in fever and neutropenia events and complications: A comparison of adolescents versus younger children with cancer at a tertiary care pediatric hospital, a pilot project.

BACKGROUND: Adolescents and young adults with cancer (AYA) are a complex group of patients. The development of fever and neutropenia (FN) is a potentially lethal complication of chemotherapy. Risk stratification of patients with FN has become increasingly valuable allowing for early intervention and to guide treatment type and duration appropriately. There are risk stratification guidelines that exist, but most are validated in young children with cancer (YCWC). AYA are frequently shown to have more numerous and severe side effects from chemotherapy. AIMS: This study aimed to identify whether age contributes to the incidence and severity of FN. METHODS AND RESULTS: Patients diagnosed with a malignancy in a 5-year period at our institution were included from ages 0-18 years. We reviewed details of their FN events, including duration of hospital admission, source (bacterial/fungal), PICU admission and duration, positive blood cultures and mortality. Adolescents with cancer (AWC) had a trend of being 1.56 times more likely to have FN events (CI 95% 0.936-2.622, p = 0.087). Assessment of the duration of PICU stay showed that AWC were 4.9 times more likely to have longer admissions (CI 95% 0.998-24.067, p = 0.050). There was no significant difference between the two groups in the rate of PICU admission, positive cultures, identification of a bacterial or fungal source, hospital admission duration or mortality from FN. CONCLUSION: This study demonstrated a trend towards AWC being more likely to develop FN events. When such events occur in this group, the severity of them may be heightened as evidenced by longer duration of PICU admission.

Adolescents With Cancer Need Trustworthy Information and Prefer to Receive It From a Human Source Rather Than From the Internet: A Qualitative Study.

Background: In pediatric cancer, the legal obligation to provide information is usually toward the parents who are the authorized signatories of the informed consent form. It is now known that aside from providing information to the parents, it is also very important to provide information to the children and adolescents themselves. The question is how the adolescents relate to this. What information do they already possess and what would they like to know? Would they wish to hear the truth in all situations and at what stage? What are their preferred sources of information? Method: A qualitative study that included in-depth interviews with 19 adolescents with cancer, aged 8.5-18, who were receiving active treatments and had been diagnosed at least 1 month previously. The interviews were guided by 15 open-ended questions. Findings: The analysis of the interviews indicated that adolescents know quite a lot about the course of their disease and the information they lack is mainly etiological. The participants reported a lack of knowledge concerning sexuality and a sense of discomfort talking about it, leaving them with open questions. They all claimed that it is important to tell the truth: "Even if the truth is difficult, it is important to tell it." The participants reported that information can be scary, so it must be structured and adapted to the age and emotional readiness of the individual. Most of the participants prefer not to use the internet as an information resource due to the profusion of stressful and non-adapted information. Conclusion: Adolescents with cancer need trustworthy information and prefer to receive it from a human source rather than from the internet. Not telling the truth can lead them to feel fear and loneliness. The medical staff must operate in sensitive and creative ways to provide adolescents with access to information on various subjects, including sexuality, which they are ashamed to talk about, leaving them with a sense of shame and a lack of knowledge in this area.

Communication Challenges in Korean Families Coping With Adolescent Cancer.

PURPOSE: To examine the family communication experience of Korean adolescents with cancer and their parents, including how adolescents and their parents verbally share feelings and concerns related to the adolescent's cancer diagnosis with one another, and how emotional communication affects parent-adolescent relationships and the family's coping abilities. PARTICIPANTS & SETTING: 20 participants (10 adolescents with cancer, aged 13-19 years, and their parents) at a university-affiliated hospital in Seoul, South Korea. METHODOLOGIC APPROACH: Individual, semistructured interviews were conducted and analyzed based on a qualitative descriptive approach. Conventional content analysis was employed to analyze the data. FINDINGS: The overarching core theme developed from the content analysis and theme generation was "I cannot share my feelings." This core theme is represented by three main themes. IMPLICATIONS FOR NURSING: Increased need for nursing awareness and culturally relevant assessment of emotional family communication needs between Korean adolescents with cancer and their family caregivers are necessary.

Integrative Literature Review on Psychological Distress and Coping Strategies Among Survivors of Adolescent Cancer.

PROBLEM IDENTIFICATION: Cancer survivors, particularly those diagnosed in adolescence, are faced with physical, mental, and emotional stressors associated with the disease and its treatment. These stressors add to the demand placed on survivors' already taxed coping skills. This article reviews the literature on psychological distress experienced by survivors diagnosed with cancer during adolescence and the coping strategies they employed. LITERATURE SEARCH: Three electronic databases (CINAHL®, PsycINFO®, PubMed®) were searched, and 19 studies were selected. Garrard's matrix method guided this integrative review. DATA EVALUATION: Gough's weight of evidence framework was used to evaluate each study. SYNTHESIS: Analysis revealed important findings about the types of coping strategies used by adolescents during and after cancer treatment and the impact of each on levels of psychological distress. IMPLICATIONS FOR PRACTICE: Healthcare providers, who regularly assess for negative thoughts and unmet needs among survivors, may identify symptoms of psychological distress, intervene early, and facilitate better outcomes for their patients. Patient-centered interventions aimed at coping with psychological distress are most helpful.

Evolving Services for Adolescents with Cancer in Italy: Access to Pediatric Oncology Centers and Dedicated Projects.

Purpose: To describe how the provision of services for adolescents with cancer has evolved in Italy, the study evaluated access to pediatric oncology centers affiliated to the national cooperative group Associazione Italiana Ematologia Oncologia Pediatrica (AIEOP), and the development of dedicated local projects. Methods: We calculated the observed/expected (O/E) ratio of adolescent patients (15-19 years old) admitted to AIEOP centers during the years 2013-2017. Observed cases were obtained from the AIEOP database (model 1.01). Expected cases were calculated on the incidence rates derived from the population-based registries. In addition, a questionnaire investigated the presence of any formal upper age limits for admitting patients, and to the development of local projects. Results: In the years 2013-2017, 9534 cases of cancer were registered in the AIEOP database, that is, 8031 children (0-14 years) and 1503 adolescents (15-19 years). The overall O/E ratio was 0.81, that is, 1.06 for children, and 0.37 for adolescents, and differed according the different tumor types. Concerning the questionnaire, 26% of centers reported age limits <18 years. Nineteen centers reported to have local projects dedicated to adolescents. Conclusions: The study shows an improvement in the services for adolescents in Italy, with an increase percentage of cases treated at AIEOP centers (from 10% of previous study, to 37%), the decrease of centers with admission age limits <18 years (from 44% 10 years ago, to 26%), and the development of many specific local projects. Effective cooperation with adult oncology societies and government recognition remain goals to be achieved.

Recruitment strategies and rates of a multi-site behavioral intervention for adolescents and young adults with cancer.

INTRODUCTION: To provide an overview of factors related to recruitment of adolescents and young adults (AYA) into research and recruitment rates and reasons for refusal from a multicenter study entitled "Stories and Music for Adolescent/Young Adult Resilience during Transplant" (SMART). METHODS: A randomized clinical trial study design was used. The settings included 9 hospitals. The sample included AYAs (aged 11-24 years) who were undergoing a stem cell transplant. Several instruments were used to measure symptom distress, coping, resilience, and quality of life in AYA with cancer. RESULTS: A total of 113 AYA were recruited (50%) for this study. Strategies were refined as the study continued to address challenges related to recruitment. We provide a description of recruitment strategies and an evaluation of our planning, implementing, and monitoring of recruitment rates for the SMART study. DISCUSSION: When designing a study, careful consideration must be given to factors influencing recruitment as well as special considerations for unique populations. Dissemination of strategies specific to unique populations will be helpful to the design of future research studies.

The Challenge of Access to Care for Adolescents with Cancer in Italy: National and Local Pediatric Oncology Programs. International Perspectives on AYAO, Part 2.

This paper, summarizing the March 2012 presentation at the second international workshop of the Canadian Task Force on Adolescents and Young Adults with Cancer, describes the situation in Italy concerning the inadequate access to optimal cancer services for adolescents, and the need to improve the quality of care for these patients while investing in more research on the diseases that afflict them. National actions to bridge the gap in care and implement specific programs tailored to these patients arose from the pediatric oncology community. These actions include creation of the national Committee on Adolescents of the Associazione Italiana Ematologia Oncologia Pediatrica (AIEOP), founded with the mission of ensuring that Italian adolescents with cancer have prompt, adequate, and equitable access to the best care to optimize their treatment outcome and quality of life. Also developed was the Youth Project of the pediatric oncology unit at the Istituto Nazionale Tumori in Milan, which is currently dedicated to adolescents aged 15-19 years old and may eventually serve young adults up to the age of 25 that are affected by pediatric-type tumors.