How Is Someone’s Identity as a Person Affected by the Fact That They Are a Full-Time Wheelchair User?

PURPOSE AND BACKGROUND: This scoping review aimed to examine how personal identity can be affected by being a full-time wheelchair user. Specifically, we sought to provide conceptual clarity around personal identity and what it may mean for full-time wheelchair users and to understand how personal identity is related to important outcomes of role functioning, participation, and well-being. More than 1.5 million Americans used a wheelchair in 2010. By gaining an increased understanding of how personal identity is shaped by and related to important domains of daily function, implications of this study may improve occupational therapy practitioners’ approach to providing client-centered care when working with full-time wheelchair users

METHOD: This study included a scoping review and qualitative content analysis. The scoping review was conducted following Arksey and O’Malley’s (2005) methodological framework. PubMed and PsycINFO were systematically searched to retrieve relevant literature; a research librarian was consulted during the iterative process of search strategy development and refinement. Articles were excluded that were not in English, did not differentiate findings by diagnosis, included participants who used their wheelchair only part time, were only about people with locked-in syndrome, and were published before 1991. The final number of articles included in this scoping review was 20. Data extraction and qualitative thematic analysis were performed to synthesize the data across articles. For this scoping review, personal identity was defined as including self-esteem, self-confidence, resilience, autonomy, self-efficacy, personal beliefs, and personality traits..

RESULTS: Overall, the findings of the included studies indicate that wheelchair skills had a significant impact on people’s acceptance of a wheelchair into their self-image and so had flow-on effects on their sense of personal identity. This process of acceptance was not always linear, however, and could be ongoing for years. Wheelchair users varied in their view of their wheelchair. Often they viewed it as a liberator, allowing them to participate in occupations they otherwise would have been unable to. At other times, it was seen in a negative light when it prevented them from doing what they wished to do.

A key theme that emerged was the role of “athletic identity” in relationship to role functioning and well-being. Outcomes were different for people with acquired versus congenital disabilities. Participation in sport increased full-time wheelchair users’ awareness of their physical capabilities, which in turn positively affected their self-perceptions of health and well-being. Because of an increased sense of self-competency from participation in sport, wheelchair users may have been more readily able to adjust to the terms of their disability and overcome the social stigma related to disability.

CONCLUSION: The wheelchair often becomes inextricably linked to the wheelchair user’s identity as a vehicle of autonomy, making the fit between wheelchair and user imperative. Higher self-esteem and self-efficacy contribute to increased social and community participation, thereby strengthening integration of the wheelchair and the person. Users’ perception of the wheelchair is often context bound, depending on whether it facilitates or impairs participation and whether or not it results in stigma from others. Additionally, participation in wheelchair sports can have positive impacts on the personal identity of wheelchair users, and having an athletic identity before becoming reliant on a wheelchair can act as a protective factor.

IMPACT STATEMENT: The findings of this study are important to clinical practice because they provide evidence to support a client-centered focus for occupational therapy practitioners who work with full-time wheelchair users. Results provide conceptual clarity around how personal identity can influence participation in daily life activities and overall well-being among wheelchair users. Appreciating variability among full-time wheelchair users and thinking about how occupational therapy can promote development of an athletic identity may lead to innovative approaches to promoting a positive sense of personal identity among full-time wheelchair users..

References

Arksey, H., & O’Malley, L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8, 19–32. https:///doi.org/10.1080/1364557032000119616

Costa, V. de S. P., Melo, M. R. A. C., Garanhani, M. L., & Fujisawa, D. S. (2010). Social representations of the wheelchair for people with spinal cord injury. Revista Latino-Americana de Enfermagem, 18, 755–762.https://doi.org/10.1590/S0104-11692010000400014

Machida, M., Irwin, B., & Feltz, D. (2013). Resilience in competitive athletes with spinal cord injury: The role of sport participation. Qualitative Health Research, 23, 1054–1065. https://doi.org/10.1177/1049732313493673

Richardson, E. V., Papathomas, A., Smith, B., & Goosey-Tolfrey, V. L. (2015). The psychosocial impact of wheelchair tennis on participants from developing countries. Disability and Rehabilitation, 39, 193–200. https://doi.org/10.3109/09638288.2015.1073372