Access to and experience of education for children and adolescents with cancer: a scoping review protocol

The aim of this scoping review is to identify what is known from the existing literature about the access to and experience of education for children and adolescents with cancer during and post treatment.

This will be achieved by answering the following questions:

Literature will be identified through searching the following databases from inception onwards: MEDLINE (Ovid), Embase and Embase Classic, Web of Science Core Collection, Education Resources Index, Sociological Abstracts, APA PsycINFO, SCOPUS, CINAHL Plus, Emcare, The Cochrane Library, and the Database of Abstracts of Reviews of Effects (Table 1: electronic databases to be searched). These databases have been selected as a source of evidence on the research topic involving the academic, policy and practice fields of child health, cancer care and treatment, education and psychosocial well-being for children and families. In addition, we will search the proceedings of the following national and international conferences in these fields from the last 10 years: American Society of Pediatric Haematology and Oncology (ASPHO), Association of Pediatric Haematology and Oncology Nurses (APHON), International Society of Paediatric Oncology (SIOP), Nordic Society for Pediatric Oncology Nurses (NOBOS), Nordic Society of Paediatric Haematology and Oncology (NOPHO) and the Conference Proceedings Citation Index (Table 2: conference abstracts to be searched). Outputs from the last 10 years from the following key journals will also be searched: Cancer Education, Cancer Nursing, Clinical Journal of Oncology Nursing, The Educational and Developmental Psychologist, European Journal of Cancer Care, European Journal of Cancer, European Journal of Oncology Nursing, Journal of Adolescent and Young Adult Oncology, Journal of Cancer Education, Journal of Cancer Survivorship, Journal of Pediatric Oncology Nursing, Pediatric Haematology and Oncology, Pediatric Blood and Cancer, Psycho-oncology, Seminars in Oncology Nursing, Seminars in Oncology and Supportive Care in Cancer (Table 3: key journals to be searched) and the reference lists of all potential inclusions will be hand searched.

Cancer as a disease occupies a particular cultural standing which is reflected in the wide range of professional and charitable organisations conducting research, providing information and support to people with cancer and their families. We will explore the website of these key organisations and charities in our search strategy: American Childhood Cancer Organisation, Australian Government Cancer Australia, Australian Research Alliance for Children and Youth, Canadian Cancer Society, Cancer Research UK, Child Cancer Foundation New Zealand, Children’s Cancer and Leukaemia Group (CCLG), Childhood Cancer International (CCI), CLIC Sargent, Macmillan Cancer Support and Teenage Cancer Trust. Our multidisciplinary team has identified three organisations focused on supporting children with medical needs in the education setting and we plan to explore these websites in addition (Medical Needs in Schools, Missing School, National Association for Hospital Schools) (Table 4: organisational websites to be searched).

The expertise of an Information Specialist (HC) has been included to identify and develop appropriate search terms to achieve a comprehensive search strategy of key words and subject headings to achieve the largest number of relevant papers.

Specific Medical Subject Headings (MeSH) and free text terms for child, adolescent and related terms such as “school child” or “teen” will be combined with terms for cancer including cancers specific to children. These terms will be combined with MeSH terms for education, teaching and school, key words for example “home school”, “school re-entry”, “hospital school” using Boolean logic operators (and, or) (Additional file 2: Draft search strategy for Medline).

A pilot of the search terms has been conducted in OVID Medline by two members of the research team (PK, GB) to check and refine the initial terms and the revised strategy will then be applied to all of the databases and other source materials. Following the iterative approach, the study team will determine and document the processes undertaken to undertake revised searches as changes are made throughout the study.

The scope of the study will include literature that is readily available in the English language. No restrictions on date of publication will be employed. The initial searches will be run by HC and results imported into Endnote reference management system, duplicate copies will be removed. All titles and abstracts will be independently screened by PK and GB to identify eligible studies. Any disagreements on inclusion/exclusion will be taken to a third reviewer (FG). The number of studies included and excluded at each stage, along with reasons will be summarised in a PRISMA flow diagram, with a record of the rationale for decisions recorded on a Microsoft Office Excel spreadsheet. PK and GB will independently review the full text of all studies and reports identified for inclusion, 10% of the sample will be checked by FG for agreement, and the team will meet to discuss those selected for inclusion. In keeping with scoping review approaches methodological quality will not be assessed.

To reflect the objectives of this scoping review, we have followed the recommendations of Peters and colleagues [32], defining participants, concepts and context in an explicit way. Participants will include children and adolescents with any cancer diagnosis, acknowledging that the type of cancer and its associated treatment modalities may influence educational experience and access. As children’s and adolescents’ access to educational input is mediated by adults, including their parents, heath care professionals responsible for their care and treatment and education professionals with responsibility for educational provision and or policy, these groups will also be included in the review.

We have identified two key concepts in relation to education for children and adolescents with cancer—access and experience. We have defined access as the opportunities or barriers for children and adolescents with cancer to take part in the anticipated experiences of education across the compulsory education spectrum—which we define as from preschool up until university or other post compulsory education prior to their 19th birthday. Access is taken to include all planned aspects of the curriculum, including participating in academic, social, pastoral, physical learning, and assessments; socialising with peers and extra-curricular activities. We include access to educational opportunities in all settings: hospital school, home-schooling and original school of enrolment reflecting our practice knowledge of the range of settings in which children and adolescents with cancer may receive educational input across their illness trajectory. Since the specific timing for re-engagement with educational services seems to have received relatively little attention in research or practice, we are interested in access during treatment and post treatment. The varied diagnosis and treatment modalities are anticipated to be factors associated with access to education—for example children with acute lymphoblastic leukaemia (the most common type of childhood cancer) have a prolonged period (up to 3 years) of maintenance (lower intensity) therapy. Health care practitioners report return to original school of enrolment is often achieved during this period. For all children and adolescents, the intensity, treatment setting and associated treatment effects on well-being and capacity to access learning may be very variable and require a highly individualised approach. In addition, the bridging from hospital school, home-based schooling programmes to original school of enrolment may be a further factor for access.

The second concept for investigation through this scoping review is experience, which includes the perspectives of children and adolescents of all educational interventions they have received and their experiences of the absence of educational inputs. Recognising the overlap of the concepts of access and experience, we will include the experiences of the participant adults (parents, health care and education professionals) in facilitating and providing education for children and adolescents with cancer.

Finally, the context for this review will include studies, reports and policies from any country providing care and treatment for children and adolescents with cancer, which are published in English, as we are interested to obtain the broadest range of practices reported. In addition, we are aware of the strong international collaboration on clinical treatments for childhood cancer. We reflect the potential for psychosocial care including educational interventions to be shared in the same way.

We will chart the following data (where available) for all included publications into a Microsoft Excel file: the year of publication, country of origin, number, type and age range of participants, type of study, methodology, methods and theoretical orientation. For each paper, the study team will identify further factors to be charted. For example, childhood cancer diagnosis, stage of treatment and duration, number of years on or post treatment, school stage, intervention type and comparator if used, target and setting of intervention, mode of delivery, outcomes and measures used, and key findings as related to the review questions. Data about any cost and sustainability of services and the reach of intervention—national, regional, or single children’s cancer centre—will also be collected. Individual quotations, verbatim text and field notes will be selected with the respondents’ basic demographics, age, gender, diagnosis and treatment stage, where appropriate.

One team member will extract the data (PK), which will be checked by another member of the research team (GB). If there is disagreement between reviewers, a third author (FG) will review and a majority decision will be taken. Missing data will be highlighted. Attempts will be made to contact study authors by email, if necessary, to seek further information or clarification about their population, study design or results.

Data extraction forms will be designed by the research team and piloted on five studies from a varied selection. The format of the forms will be reassessed and revised if required to ensure all relevant data are being captured in a systematic and transparent way.

We will use a narrative synthesis approach to managing the data—with the aim to summarise and explain the findings of these studies. This will include a numeric overview of all literature findings included in the review, thematic analysis of qualitative data and summary statistics of intervention studies to summarise outcomes.

We will begin by creating a textual summary of data for each study with separate tables for qualitative studies, mixed methods studies, qualitative studies and policy/guidance documents. These summaries and their content will be reviewed by the research team to ensure that the planned approaches to developing a narrative synthesis from the range of literature included is robust and will result in a summary and explanatory narrative for a comprehensive and coherent presentation to the consultation group.

Basic numerical data will be analysed using descriptive statistics in Microsoft Excel software to show relevant frequencies and summarise the literature including trends in years of publication, percentages of studies per country, participant numbers per study (and total numbers), the breakdown of key groups with associated relevant factors, children and adolescents (age, diagnosis, education history), parents, education and health care professionals. Graphical illustrations will show the frequency of methods and methodologies used and the types, settings and outcomes of interventions.

Intervention studies will be reviewed as a group to determine if there are opportunities to assess outcome effects where sufficiently similar outcomes have been measured to warrant analysis of pooled effect. In the same way, types of interventions will be examined to explore the opportunities to interrogate further the impact of particular intervention types if the studies selected report a number of sufficient homogenous interventions. Initial examination of the literature in the field suggests that this may not be possible.

The authors will work together to analyse the narrative texts, quotations and field notes thematically using a constant comparative ethnographic approach as described by Emerson et al. [34] to ensure that contextual issues remain integrated in the analysis, this will be supported by qualitative data analysis software NVivo [35]. There will be an ongoing reflective component to the analysis by continuing to ask ourselves how our preconceptions are influencing this analytical process. The resultant analysis will consist of themes from the data illustrated by data extracts including quotations.

Thematic analysis of individual studies will be synthesised to map the interrelationships between children, parents, education and health care professionals to illustrate how the contexts of home, school and health care institutions shape access and experience of education for children and adolescents with cancer [36]. Visual data will be analysed using content analysis [37]. Data will be presented in tabular, diagrammatic and descriptive summaries. Summarising and identifying patterns in the data from the selected literature, we will create visual mapping documents and textual material including quotations for use in the consultation exercise.

We regard the inclusion of a consultation exercise as an essential planned component in this review. Recognising the unique and critical perspectives that service users and providers will bring to an examination of the published literature, as Manning et al. [38] have demonstrated in the environment of paediatric intensive care. The aim of the consultation exercise will be to review and discuss the findings of the scoping review in order to make recommendations for further research and dissemination. This consultation exercise will comprise focus groups and individual interviews and will provide an opportunity to check the validity of the findings and further elaborate their relevance for children and adolescents with cancer, their families and key professional groups.

The consultation exercise will be held as a hybrid physical and virtual event. Two face-to-face consultation events will be held in the UK in London and Newcastle, while an unrestricted number of online teleconference calls will take place via Zoom.

The locations selected host two of the UK’s largest paediatric oncology principal treatment centres, treating over 500 patients per year. Each centre provides treatment for all types of childhood malignancies providing a full range of treatment modalities up to the age of 24 years including long-term follow-up post treatment. In addition, the populations that access these centres are diverse in their ethnic, cultural, social and economic background. Access to interpreting and advocacy services to facilitate participation will be sourced [39]. Invited participants will be children at multiple stages of their treatment trajectory and their parents. Children will be included even if they have yet to have the opportunity to return to their original school of enrolment as well as those who have experienced school attendance following treatment.

All participants will be given a choice regarding how they would like to engage in the exercise. Children can elect to participate with their parents or in a separate children’s event at the physical venue or online. Two groups will be invited to take part: children and their families and professional groups delivering care, treatment and education to children with cancer. Children and adolescents previously or currently being treated for cancer together with their siblings and parents will be invited to take part. Families will be asked to identify and invite other members of their extended families and friendship circle who have had a role in the education of their ill child or their siblings. Invites for families will be sent to families via the primary treatment centre, circulated on social media and cascaded via children’s cancer charities.

Paediatric oncology health care professionals (including doctors, nurses, allied health care professionals, psychologists and social workers) and education professionals (including hospital school teachers, home school services, community school teachers, specialist educational support services) will be identified and invited to participate in focus groups. Further professional and stakeholder groups will be invited if the results of the study identify their roles as central factors in access and experience of education for children and adolescents with cancer.

The face-to-face sessions will operate on a ‘drop-in’ session basis with members of the research team available all day to meet with participants. Large gatherings will be avoided and social distancing rules will be followed. As we know that families do not want to make extra trips to the hospital, the face-to-face sessions will be held at accessible neutral venues away from the hospitals (pizza restaurants). Childcare and catering will be provided for attendees.

In both face-to-face and virtual sessions, child and adolescent participants, parents and professionals will be allocated to separate small focus groups for review and discussion of the results of the scoping review. Members of the research team will present a summary of the key findings to each group—this will include quotations from the qualitative literature and facilitate a discussion with participants on how these relate to their own experiences. Child and adolescent participants will be told about the results of the study, and the research team will prepare age-appropriate materials and activities to enable their views to be understood and captured [40, 41]. All participants will be asked to identify challenges and priorities for future research on education for children with cancer during and post therapy.

With the permission of all participants, the focus group discussions will be audio-recorded and transcribed verbatim. In addition, the authors will make notes from the focus groups and write up a reflective log immediately following the group. We will consult with the focus group participants on the dissemination approaches for the study to ensure that these include feedback to relevant stakeholder groups in addition to publishing the findings from the scoping review (incorporating the consultation exercise) in addition to presentation at conferences and publication in peer reviewed journals.

The consultation exercise will follow the principals of research ethics committee and information governance practice. Travel will be paid for all participants who take part in the face-to-face sessions. All participating family members will receive a £30 gift voucher as a thank you for taking part. This consultation exercise with families and professionals will provide an important space to examine the outputs from our scoping review: deemed a valuable approach to enrich the data and to increase the relevance of the results of a scoping review for policy and practice.