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Mapping evidence on educational interventions for adolescents with cancer: a scoping review protocol
  1. Joana Kyei-Dompim1,2,
  2. Desmond Kuupiel2,3,
  3. Abigail Kusi-Amponsah Diji1,
  4. Busisiwe Purity Ncama2
  1. 1School of Nursing and Midwifery, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana
  2. 2School of Nursing and Public Health, University of KwaZulu-Natal College of Health Sciences, Durban, South Africa
  3. 3Faculty of Health Sciences, Durban University of Technology, Durban, KwaZulu-Natal, South Africa
  1. Correspondence to Joana Kyei-Dompim; joankyeidompim{at}gmail.com

Abstract

Introduction Adolescents diagnosed with cancer face unique challenges that can significantly impact their physical, emotional and social well-being. Educational interventions are essential in providing these young patients with the knowledge and skills necessary to navigate their cancer journey effectively. This scoping review aims to map the existing evidence on educational interventions tailored for adolescents with cancer, identifying gaps in the literature and informing future research and practice.

Methods and analysis The review will follow a systematic scoping review as outlined by the Joanna Briggs Institute. A preliminary search was conducted in June 2024 with the PubMed database. This will be followed by a comprehensive search strategy across multiple databases, including PubMed, SCOPUS, WoS, PsycINFO, GIM and CINAHL, to identify relevant literature published in English. All types of educational interventions targeting adolescents with cancer will be included, while studies focusing on non-cancer populations or published in non-English languages will be excluded. Data extraction will be conducted by two independent reviewers using a standardised tool, and qualitative content analysis will be performed to summarise the findings. The results will be presented in tables and figures, adhering to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses: Extension for Scoping Reviews guidelines. This scoping review has been registered with Open Science Framework (https://osf.io/7p93v).

Ethics and dissemination As this scoping review will use secondary data from published literature, ethical approval is not required. The findings will be disseminated through peer-reviewed publications, conference presentations and stakeholder engagement.

  • Adolescent
  • Health Education
  • Cancer genetics
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STRENGTHS AND LIMITATIONS OF THIS STUDY

  • The use of a systematic approach, guided by the Joanna Briggs Institute framework, ensures that the review is methodologically sound and replicable; this will enhance the reliability of the findings.

  • The decision to include only English-language studies may limit the comprehensiveness of the review and potentially overlook culturally relevant interventions.

Introduction

Evidence from Global Cancer Incidence, Mortality and Prevalence1 shows that about 19.3 million cancers occur worldwide with almost 10 million cancer deaths. In support of this, Sung et al2,2 argue that there are more than one million new cancer diagnoses each year worldwide among adolescents and that there remain a significant number of relapses and deaths despite improved prognoses and surveillance in this population in recent years.

According to the National Cancer Institute, cancer is a leading cause of death among adolescents aged 15 to 19 years in the USA, following accidents and suicides.3 Adolescents and young adults (AYAs) aged 15–39 years account for a significant proportion of new cancer cases and cancer-related deaths annually in the USA, highlighting the need for targeted interventions.4 Age-standardised rates of incidence for adolescent and young adults cancer in Malawi were the highest during a population-based survey5 recording 78.3 per 100 000 person-years; this was followed closely by Hungary and Portugal, respectively. The study also established based on epidemiologic data that demographics among cancer patients is shifting from older population to young people. This further strengthens the need to focus on a more tailored approach to diverse groups of the young population. Tracking the incidence and patterns of cancer among children and adolescents plays a crucial role in assessing the effectiveness of interventions and shaping policy decisions. This monitoring serves as a vital tool for evaluating programme efforts and guiding policy development in the field.6 The likelihood of survival for adolescents diagnosed with cancer depends significantly on access to essential diagnostic and treatment services.7

A recent review8 focused on examining access to and educational experiences of children and adolescents undergoing and after cancer treatment. Another also systematically reviewed the literature to assess how educational interventions about cancer impact adolescents’ understanding of reducing cancer risks.9 A scoping review10 was conducted to identify cancer education programmes targeted at AYAs and assess their respective outcomes. However, none of these studies has focused on adolescents who represent a group with peculiar physical and psychological needs. To overcome these limitations, this approach involves employing scoping review methodology to systematically explore the diverse existing literature. This method enables a thorough and replicable investigation to clarify and chart concepts effectively.11–13 Recognising the educational requirements of adolescents diagnosed with cancer and their families is crucial. Studies indicate that delivering comprehensive, age-appropriate cancer education can enhance adolescents’ and families’ adjustment and coping with the diagnosis and treatment process.14

Adolescence, spanning from ages 10 to 19, marks a crucial developmental period bridging childhood and adulthood. It encompasses rapid physical, cognitive and psychosocial growth, shaping adolescents’ emotions, thoughts, decision-making abilities and interactions with their environment.15 Despite being generally perceived as a healthy phase, adolescents witness significant mortality, morbidity and injuries, many of which are preventable or treatable. This stage is pivotal for establishing behavioural patterns such as dietary habits, physical activity levels, substance use and sexual behaviours, influencing not only their immediate well-being but also future health outcomes. Cancer is defined scientifically as a group of diseases characterised by the abnormal growth and spread of cells, which can invade and destroy normal tissue16 and will include all types diagnosed in this age group. As intervention programmes are aimed at enabling patients to take an active role in managing their own health condition,17 educational interventions for adolescents diagnosed with cancer will focus on structured programmes aimed at enhancing knowledge, skills and behaviours related to managing cancer and its treatment. These include self-management interventions, which focus on improving treatment adherence and health self-efficacy, and psycho-education interventions, which help adolescents understand cancer, its treatment pathways and coping mechanisms. The interventions may be delivered through individual or group sessions. A systematic review of the literature found that the majority of cancer education interventions for adolescents such as18 19 focused solely on skin or cervical cancer (67%), with only 18% addressing multiple cancer types.20 Most interventions were single session (55%) and lacked a control or comparison group (67%) and were evaluated using a pretest and a single post-test (61%).20 Few studies (12%) investigated adolescents’ knowledge of lifestyle and environmental risk factors at both the individual and community levels. Despite these limitations, the review found that most studies (94%) reported improvements in knowledge following the interventions.20

It is important to note that the 33 studies included by Grant-Alfieri et al20 focused on minimising risk among adolescents and did not synthesise evidence specifically for adolescent cancer patients. Other studies21–24 have also looked at educational intervention for cancer patients but with unspecified age grouping, which could influence targeted interventions as a limitation. Our study sets out to look at educational interventions that are tailored towards adolescent cancer patients as these would be uniquely beneficial to their outcomes.

For instance, a study25 which used a peer-assisted video-based programme for children with cancer noted that there was a significant reduction in the state of anxiety over time, which could contribute to the acceptance of condition and adherence to further care. Another educational intervention26 found that there was a reduction in symptom severity for both children and adolescents.

The main objective of this scoping review is to map and summarise the existing evidence on educational interventions designed for adolescents with cancer. The PCC (Population, Concept, Context) framework suggested by the Joanna Briggs Institute (JBI)12 will inform this review.

The aim of this scoping review is to identify and synthesise the breadth of available literature on educational interventions tailored specifically for adolescents diagnosed with cancer. It seeks to answer multiple research questions regarding the types of interventions used, their effects on adolescent knowledge and attitudes, documented outcomes related to treatment adherence and secondary prevention and the factors influencing successful implementation of these interventions. This approach aims to provide a broad overview of the current state of research and identify gaps or areas needing further investigation in this critical area of adolescent oncology care.

Research Question(s)

  1. What types of educational interventions have been implemented for adolescents diagnosed with cancer?

  2. What barriers or facilitators influence the implementation of educational interventions for adolescents with cancer?

  3. How do educational interventions impact the knowledge and self-management abilities of adolescents with cancer?

  4. What are the reported outcomes of educational interventions in improving treatment adherence and psychosocial well-being among adolescents with cancer?

Objective

The aim of this scoping review is to map and summarise the existing evidence on educational interventions designed for adolescents with cancer, focusing on the types of interventions implemented, their impact on knowledge and attitudes towards treatment and management strategies, reported outcomes on treatment adherence and secondary prevention, as well as perceived barriers and facilitators to implementing these interventions.

Eligibility criteria

Due to the nature of the study subject, the PCC framework12 will be used for the study. The criteria were established following a preliminary search. We placed no restrictions on date as we could not identify any current study that focused on the adolescent cancer patients. Populations who have successfully completed treatment and are currently without the disease may be considered following screening of eligible studies. Studies that reported both adolescents and ages beyond the adolescent group will be considered with reasons for possible inclusion or otherwise. Also, studies involving parents of adolescents with cancer will be excluded. Studies will not be limited to a specific geographical location, and our concept will focus on any type of educational intervention targeted at adolescents with cancer. The study will include evidence published in English

Type of evidence sources

Review articles will include peer-reviewed journals, systematic reviews, scoping reviews, rapid reviews and meta-analysis (if any). Full reports will include qualitative and quantitative studies, randomised controlled trials and quasi-experimental designs and pilot studies.

Evidence to be excluded will involve grey literature studies, educational interventions for adolescents without cancer and interventions not focused on cancer. This review will exclude interventions primarily focused on academic education, such as tutoring or school re-entry programmes, which aim to support academic achievement rather than health behaviour change or medication adherence. Additionally, interventions that focus solely on mental health, emotional well-being or coping mechanisms without addressing practical health behaviours (eg, medication adherence, lifestyle changes or self-management of cancer treatment) will be excluded. Interventions providing general psychological support, such as social support or grief counselling, that do not target health behaviour change, treatment adherence or self-management strategies will also be excluded from the review. Non-English publications will be excluded.

Search strategy

An initial search of databases conducted on the PubMed and SCOPUS revealed a number of reviews on educational interventions for cancer patients and educational interventions for adolescents, but none specifically focused on adolescent cancer patients.

The search strategy involved using a combination of keywords, Boolean operators “and”, “OR” and “NOT” and MeSH terms related to “adolescents,” “cancer” and “educational interventions” such as “teens, school-going age, neoplasm, tumor, growth, educational programs”, and all relevant studies published up to that date were considered. The aim was to identify existing literature and ensure that this scoping review will provide new insights and avoid duplication.

There was also no published or ongoing systematic review or scoping reviews on the topic through a preliminary search conducted on 24/05/2024 and 04/07/2024, respectively, in PROSPERO, JBI Evidence Synthesis and Open Science Framework. This absence informed the proposed scoping review. The JBI recommends a three-step search technique.27 The first of these steps has been undertaken and involved a limited preliminary search of the PubMed database (conducted in June 2024) relevant to the topic (online supplemental appendix 2).

The second stage will include an examination of the text words found in the titles and abstracts of the retrieved papers, as well as the index keywords used to describe the articles. A second search will be conducted across all included databases using all indicated keywords and index phrases. These databases will include PubMed, SCOPUS, GIM, Web of Science, PsycINFO and CINAHL. The Peer Review of Electronic Search Strategies checklist will be appropriately applied to the full search.28 The third and last phase will be to look for more studies in the reference lists of all included papers and articles.

Source of evidence selection

The systematic review will include studies published up until February 2025. The review will begin in February 2025 and is expected to be completed by December 2025. Literature meeting all inclusion criteria will be incorporated into the study, whereas any literature meeting any of the exclusion criteria will be excluded. All literature sourced from bibliographic databases will be uploaded to EndNote 20.5 (Bld 16860) where duplicates will be removed. Files will then be uploaded to a screening software, Rayyan,29 where further duplicates identified will be removed, followed by screening taking place. Following the eligibility criteria, two independent reviewers will first screen titles and abstracts (disagreement will be resolved with a third reviewer) and, subsequently, conduct a detailed assessment of the full texts to determine studies that will be included in the review.

The literature derived from citation analysis30 will undergo selection subsequent to the initial literature selection from electronic searches to identify further relevant studies to include in the final review. Reasons for exclusion following full-text review will be documented. Reviewers will resolve disagreements through discussions. If consensus is not reached, a third reviewer will make the final decision.

Data extraction

Two reviewers will extract data using the adopted data abstraction tool established by the authors in a Microsoft Excel spreadsheet. Information to be extracted is outlined in the table (see online supplemental appendix 1). If disagreements arise throughout the data abstraction process, the two reviewers will discuss them and reach an agreement. If the issue is still not resolved, a third reviewer will make the ultimate decision. This approach is highly recommended for scoping review.13 31

Analysis of evidence

Following the completion of the data abstraction form, a qualitative content analysis will be conducted without using any analysis software. Extracted data for each category in the extraction form will be presented through tables and figures, accompanied by a thorough descriptive analysis. A summary table will provide essential details for each eligible literature, including authors, publication year, study design, objective(s), population characteristics (age range, cancer type, treatment status), setting, type of educational intervention, delivery format (individual, group, online), duration and frequency, primary outcome (knowledge, attitude, behaviour change) and secondary outcome (treatment adherence, psychosocial outcome). Any changes made to the table will be reported in the final review. Next, numerical and categorical data will be computed based on counts and percentages. We will report the findings in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses: Extension for Scoping Reviews.32

Risk of bias assessment

On account of the fact that this is a scoping review with the aim of mapping available evidence, we will not conduct any quality appraisal or risk of bias assessment of the studies included. This will help us to cover the breadth of information available more so than depth and is consistent with the methodology manual recommended by JBI27 and a database of scoping reviews on health-related topics.33

Strengths and limitations

First, the application of a systematic approach, guided by the internationally recognised framework of the JBI, ensures the methodological rigour and reproducibility of the review process. This structured methodology strengthens the reliability of the findings, providing a transparent and consistent approach to the identification and analysis of relevant literature. Second, the inclusion of a good number of databases broadens the scope of the literature captured, allowing for a comprehensive review of educational interventions for adolescents with cancer. This extensive search strategy enhances the generalisability of the findings. Additionally, the registration of this review with the Open Science Framework (https://osf.io/7p93v) adds to the transparency of the review process.

Conversely, the decision to include only English-language studies may restrict the comprehensiveness of the review, potentially excluding culturally relevant interventions and perspectives from non-English studies.

Ethics and dissemination

This scoping review protocol has been developed in accordance with ethical guidelines and principles outlined by the JBI. As this study involves a review of existing literature, it does not require ethical approval from an institutional review board. However, all included studies will be critically assessed for ethical considerations.

The findings of this scoping review will be disseminated through multiple channels to ensure broad reach and impact. We plan to publish the results in a peer-reviewed journal, specifically targeting those focused on health education, oncology and adolescent health. Additionally, we will present our findings at relevant conferences and workshops to engage with stakeholders, including healthcare professionals, educators and policymakers.

To enhance public engagement, we will also consider creating a summary of the findings for dissemination through social media platforms.

Ethics statements

Patient consent for publication

References

Footnotes

  • X @Dkuupiel

  • Contributors JK-D conceptualised and designed the review framework, conducted the initial screening and drafted the manuscript. JK-D and DK were responsible for the systematic literature search, data extraction and synthesis of results. AK-AD contributed to the interpretation and synthesis of the findings. BPN provided critical revisions to the manuscript. All authors have reviewed and approved the final manuscript. The guarantor for this scoping review is JK-D and accepts full responsibility for the accuracy and integrity of all aspects of the work.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.