Work

Exploring the experiences of family carers of neurodivergent children and young people: A scoping review protocol

Year: 2025

Type: article

Abstract: Background The rising prevalence of neurodivergent conditions, coupled with the challenge faced by health and social care services to provide adequate support, is increasing the pressure on family carers to fulfil these care needs. Family carers also need support to maintain their own health and wellbeing while providing care sustainably. The neurodiversity movement has provided science and society with a new perspective to help neurodivergent individuals, especially children and young people, enhance their quality of life. However, the evidence regarding the experiences of family carers of neurodivergent children and young people appears fragmented, limited and disconnected. Aim This article introduces a protocol for a scoping review that systematically and thoroughly maps the available evidence on the experiences of family carers of neurodivergent children and young people. The review will focus on synthesising available evidence on family carers’ understanding, attitudes, and perceptions of neurodiversity, as well as the challenges they face, their needs, coping strategies, and interventions to support them. Methods The scoping review will search six databases (PsycINFO, CINAHL, Medline, Web of Science, Academic Search Complete, and ASSIA), as well as relevant grey literature sources. Adhering to best practice, using the framework outlined by Arksey and O'Malley 1 , the following five stages will be performed: 1) Identifying the research question, 2) Identifying relevant studies, 3) Selecting and screening studies, 4) Charting/extracting the data, and 5) Collating, summarising, and reporting the results. The PRISMA Extension for Scoping Reviews (PRISMA ScR) guidelines will be employed and reported. Conclusions This review presents a narrative synthesis of the available literature on the experiences of family carers of neurodivergent children and young people. The findings will help to determine whether a systematic review is warranted and inform future primary research in the growing field of neurodiversity and family caregiving.

Source: HRB Open Research

DOI: 10.12688/hrbopenres.14279.1

Authors: Cielo Eddaly Diez Grajales, Attracta Lafferty, Andrew Darley

Institution: University College Dublin

Language: English

Topic: Family and Disability Support Research

Subfield: Clinical Psychology

Field: Psychology

Domain: Social Sciences

SDG: Good health and well-being

Open Access status: gold

Estimated APC paid: $926