Background: Marginalized population groups are more likely to be under-represented in autistic children’s research.
Rationale: Our understanding of the low levels of research engagement among autistic children from these marginalized groups is limited.
Objectives: (1) to examine some of the under-represented populations in autism children’s research; (2) to assess the facilitators and barriers contributing to patient engagement in autistic children’s research; (3) to suggest considerations for the development of a more equitable approach to autistic children’s research.
Methods: A scoping review was conducted on studies published during January 2011-December 2021 in five electronic research databases by two reviewers in duplicate. English qualitative/quantitative/mixed methods studies that engaged autistic children aged 2-18 and/or their parents as research participants or in the process of patient-oriented research were included.
Results: Some of the under-represented marginalized autistic children populations identified from the 21 included studies were: (1) those living in developing/under-developed countries, (2) those who received autism services from centres that do not collaborate with researchers, (3) families of ethnic minority in Western countries, (4) autistic children who received late diagnosis, (5) families whose first language is not English, (6) male parents of autistic children, (7) female autistic children, (8) families with low household income who are not enrolled in governmental healthcare financial support program and (9) those who lack technological literacy skills. Facilitators of patient engagement were: (1) building trust-based relationships among stakeholders, (2) engaging patients throughout research development, and (3) patient engagement in research funding processes. The barriers were: (1) allocation of research funding, (2) identity conflict, (3) applicability of research evidence, and (4) social stigmatization towards autism.
Discussion: To enhance patient engagement in autistic children’s research, policymakers, researchers and funders should prioritize participant’s needs in all stages of the research process.
Conclusion: The diverse identities autistic children carry should be better acknowledged. An equity approach to research is needed. / Thesis / Master of Public Health (MPH) / Autistic children from certain marginalized population groups are less likely to be
engaged in research. This thesis aims to examine the facilitators and barriers contributing to
this phenomenon. As predicted, several child and family characteristics, socio-economic
factors, and contextual research structures appear to be associated with patient engagement in
autism research. Several recommendations are made for policymakers, researchers and funders
on ways to prioritize autistic populations’ needs, enhance patient engagement, and promote a
more equitable approach to autism research.
| Identifer | oai:union.ndltd.org:mcmaster.ca/oai:macsphere.mcmaster.ca:11375/27593 |
| Date | January 2022 |
| Creators | Alicia Hoi Ying, Liu |
| Contributors | Stelios, Georgiades, Health Sciences |
| Source Sets | McMaster University |
| Language | English |
| Detected Language | English |
| Type | Thesis |
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