Study Overview
Objective. To conduct a systematic review on the effectiveness, service user perspectives, policy intentions, and cost-effectiveness of wheelchairs for disabled children (< 18 years) for the purposes of developing a conceptual framework to inform future research and development.
Design. EPPI-Centre (eppi.ioe.ac.uk/cms/) mixed method systematic review with narrative summary and thematic and narrative synthesis.
Data. A search for relevant studies available in English and published in the last 15 years was performed. All identified study titles were assessed for relevance against the inclusion/exclusion criteria, and a second screening process was used to assess relevance of studies by their abstract. Studies deemed relevant were then obtained in full and underwent an additional review by a second researcher to reduce bias and reach consensus regarding inclusion. After data extraction, evidence was divided into 4 streams according to methodology and topic to enable separate syntheses by evidence type: (1) intervention evidence; (2) opinion evidence; (3) policy and not-for-profit organization (NFPO) literature; and (4) economic evidence. Intervention and economic streams were not synthesised due to vast differences in studies and lack of statistical evidence within each stream, thus narrative summary was conducted.
Main outcome . The primary outcome was to create a conceptual framework to inform future research and wheelchair service development in the UK, with international implications. To inform the searching, management, and interpretation of evidence, the review focused on the following 4 objectives regarding wheelchair interventions for disabled children and young people:
- to determine the effectiveness and cost-effectiveness of wheelchairs for said population;
- to better understand service users, parents, and professional perspectives regarding wheelchairs;
- to explore current UK policy, NFPO publication and clinical guideline recommendations and intentions regarding wheelchair provision; and
- to determine if disabled children’s desired outcomes match with existing policy aspirations and effectiveness evidence.
Main results. Synthesis of the integrated dataset elicited the following findings: (1) higher quality wheelchair services take into account the needs of the whole family; (2) disabled children benefit when psychosocial needs are considered along with health needs; (3) disabled children could benefit if policy recommendations focused on services meeting individual needs rather than following strict eligibility criteria; (4) without appropriate outcome measures the holistic benefits of powered wheelchair interventions cannot be evaluated; (5) disabled children may benefit more when physical outcomes of powered wheelchairs are seen as facilitators to wider holistic benefits, but lack of transition of evidence into practice hinders progress; and (6) disabled children would benefit from public buildings and spaces that promote inclusion of disabled people.
A key finding of this study is that wheelchairs offer disabled children independence and social integration and participation in age-appropriate activities. Secondary findings pertain to policy, specifically, the lack of effective translation of policy and evidence into practice, barriers to service delivery, lack of organization, and absence of knowledge application of what children desire from their wheelchairs. The resulting framework of this review lays out the interconnectedness of the problem areas, required actions, and overall development stages, which can lead to future cost-effective wheelchair services and interventions.
Conclusion. Wheelchairs offer children a variety of benefits, particularly with respect to health, development, and social inclusion. Given the barriers surrounding NHS wheelchair services in the UK, this review provides a solid research foundation for further research and has implications for wheelchair services globally. In particular, the lack of economic evidence found in the review process has implications for the need of appropriate methods to measure cost-effectiveness of interventions in order to promote more efficient service provision.
Commentary
Wheelchair access has compelling implications for improving children’s health, development, and social inclusion. It is this final benefit in particular that makes wheelchair interventions stand out from the rest due to the fact that the wheelchair goes beyond being a medical assistive device to being a gateway to societal participation.
Also related to social inclusion, an additional relevant observation made in this study is the lack of wheelchair access in public spaces. Such barriers can deem a wheelchair irrelevant if it cannot be used in the spaces where the subject needs to travel, such as schools, restaurants, parks, or government offices. Though this study was based in the UK, such barriers to inclusion remain all too common for persons with disability around the world [1], thus positioning the results of study as a starting framework for further global research.
That being said, the authors’ recommendations of resolving public space barriers with the simple addition of wheelchair access is an outdated approach towards inclusion that has been widely challenged by the community of persons with disabilities over the last decade. The promotion of “inclusive design” or “human-centered design” [2] to properly address the challenges of persons with disability is a growing trend, particularly in the United States, and takes into account the highest possible degree of permutation in the local demographics. A recommendation limited to mere wheelchair access stands to shut out other significant portions of the disabled community and exacerbates a “patchwork” approach toward resolving access that is not truly holistic.
Another observation pertains to the financial burden imposed on the family to modify the home when a child in the household has to use a wheelchair. While this is discussed in the article, it is treated separately as it occurs in the private sphere. However, construction regulations, permits, and other aspects pertaining to home-building reside on the government and policy side, even if a private independent entity does the home-building. Hence, policy changes towards inclusive design have implications for both public as well as private spaces.
With respect to the benefits of wheelchair interventions, the authors contend that appropriate interventions stand to “reduce disability discrimination and promote equality.” Concepts such as “discrimination” and “equality” cannot be discussed without political and cultural considerations [3]. The linkage between access and equality is a correlation worthy of discussion; however, the study was not designed to gather data to support sucha correlation.
Finally, while the overall findings of this study are relevant, it would be useful to know more about wheelchair service provision and the elderly, as it is they who comprise the majority of the disabled population [1,4]. The elderly disabled also need caretakers, need to make home modifications and travel to and from public spaces, and experience barriers and service delays Future research on wheelchair interventions would benefit from a comparative intra-population analysis.
Applications for Clinical Practice
This study outlines critical challenges and problems in the process of obtaining a wheelchair, such as poor evaluation methods for matching a wheelchair to patient needs, bureaucratic delays even after the order has been approved, physical accommodations that need to take place once the wheelchair has been acquired, and financial burdens assumed by the family and/or caretakers. Consideration needs to be given to addressing these problems given the importance of adequate wheelchairs for many disabled people.
—Molly A. Martínez, PhD, World Enabled, Berkeley, CA