Review objectives and questions

Our primary objective is to conduct a literature review to map and synthesize available evidence on how family accommodation has been conceptualized, measured and linked to the health, health-related behaviors, and mental health of CAYA cancer survivors.

Secondary objectives of this scoping review are to identify: 1) how family accommodation is linked to the emotional and psychological well-being of parents or other family caregivers of CAYA cancer survivors; and 2) how family accommodation is measured in the context of cancer.

Inclusion criteria

We used the PEO (Population, Exposure, Outcomes) framework to structure our study inclusion criteria.

Our “Population” of interest for this review will include individuals diagnosed with cancer between birth and 39 years of age and their families. Eligible family members include parents, legal guardians, siblings, spouses or partners, and other family members or informal caregivers identified by study authors as providing care or support to the survivor. Consistent with the National Cancer Institute definition of survivorship [14], studies conducted at any point along the cancer survivorship trajectory, from diagnosis through treatment and post-treatment follow-up, will be included. Studies including mixed-age cancer populations will be eligible only if data for individuals diagnosed between birth and 39 years of age are reported separately or can be extracted independently. Finally, we will exclude studies involving individuals with a terminal cancer diagnosis or those receiving palliative or end-of-life care.

Our review will focus on family accommodation as the “Exposure” of interest. We will include descriptive or intervention studies that evaluate: 1) how family accommodation influences the health, health-related behaviors, and mental health of CAYA cancer survivors; and 2) how family accommodation affects the emotional and psychological well-being of parents or other family caregivers. We will also explore how family accommodation in the context of CAYA cancer survivors is conceptualized and measured. Studies will be eligible if they examine family accommodation in any healthcare, home, or community setting relevant to CAYA cancer survivorship, with family accommodation referring to behaviours such as excessive reassurance, modification of family routines, or taking over tasks the survivor could otherwise perform. We will also include studies that examine conceptually related constructs (e.g., parental overprotection, protective buffering, family rules and routines, caregiving adaptations, and dependence-promoting behaviours). We will exclude studies that focus on general emotional support or medically necessary caregiving.

We will not define specific “Outcomes” to allow for the broadest inclusion of relevant literature. However, we aim to capture outcomes related to child health, health-related behaviors, mental health, emotional well-being of family members, and measures used to assess family accommodation.

Types of studies

This scoping review will consider both experimental and quasi-experimental study designs including randomized controlled trials, non-randomized controlled trials, before and after studies, and interrupted time-series studies. In addition, analytical observational studies including prospective and retrospective cohort studies, case-control studies and analytical cross-sectional studies will be considered for inclusion. This review will also consider descriptive observational study designs including case series, and descriptive cross-sectional studies for inclusion. Qualitative studies will also be considered, including but not limited to, designs such as phenomenology, grounded theory, ethnography, and qualitative description. Relevant systematic reviews will not be included as evidence sources; however, their reference lists will be screened to identify additional eligible primary studies. Gray literature, case studies and opinion papers will not be considered for inclusion in this scoping review.

Search strategy

First, an initial limited search of MEDLINE was undertaken to identify articles on the topic. The text words contained in the titles and abstracts of relevant articles, and the index terms used to describe the articles were then used to develop a full search strategy.

In collaboration with the information specialist, an extensive literature search was conducted in Medline ALL (Medline and Medline Epub Ahead of print and In-Process & Other Non-Indexed Citations), Embase Classic +Embase, Emcare, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, PsycInfo all from the OvidSP platform, and Scopus from Elsevier from each database inception to October 2024. Each search strategy included a combination of controlled vocabulary terms and text words, adapting the database-specific search syntax. Where applicable, the search was restricted to human studies and publications in English, and excluded books, conferences, dissertations, and preprints (see Supplementary 1 file for Medline ALL search).

The reference lists of any eligible papers will be hand-searched to identify potentially relevant additional articles. Prior to publication, the literature search will be rerun to identify studies published since the original search (October 2024). Newly identified records will undergo the same process of removing duplicate articles, title and abstract screening, full-text review, and data extraction procedures as described above. Any additional eligible studies identified through the updated search will be incorporated into the final review and documented in the PRISMA flow diagram.

Selection of sources of evidence

Following the search, all identified citations will be collated and uploaded into Covidence and duplicates removed. Following a pilot test, titles and abstracts will be screened by two or more independent reviewers for assessment against the inclusion criteria for the review. Potentially relevant sources will be retrieved in full.

Prior to full-text review, pairs of reviewers will pilot the screening process on a sample of 20 articles. This calibration step will be repeated until at least 80% inter-rater agreement is achieved. Following this, two or more independent reviewers will assess the full text of all remaining selected citations in detail against the inclusion criteria. Reasons for excluding full-text sources of evidence that do not meet the inclusion criteria will be recorded and reported in the scoping review. Any disagreements that arise between the reviewers at each stage of the selection process will be resolved through discussions with a third reviewer. The results of the search and the study inclusion process will be reported in full in the final scoping review and presented in a PRISMA flow diagram [13].

Data extraction

Data will be extracted from papers included in the scoping review by two or more independent reviewers using a data extraction tool (See Supplementary 2 file) developed and pilot tested by the reviewers. The data extraction tool will capture specific details, including: study characteristics (e.g., author, year, country, study design, setting); participant characteristics (e.g., survivor age at diagnosis, cancer diagnosis, treatment status, family member type); conceptualization of family accommodation; measures used to assess family accommodation; survivor and caregiver outcomes examined; key findings relevant to the review objectives; and study limitations. The data extraction tool will be modified and revised as necessary during the process of extracting data from each included evidence source. Modifications will be detailed in the scoping review. Any disagreements that arise between the reviewers will be resolved through discussion. Authors of papers will be contacted to request missing or additional data, where required.

Data synthesis

Data will be synthesized and presented in tables and diagrams, aligned with the review’s primary and secondary objectives, and supported by a narrative summary. No critical appraisal will be undertaken for the studies included in this review.