Occupational Challenges Encountered by Clients With Spina Bifida as They Age: A Systematic Review

PURPOSE: The purpose of this systematic review is to answer the question, What are the occupational challenges that individuals with spina bifida face, and how do the challenges evolve as these individuals age? Identifying the occupational challenges this population faces as they age is imperative since the incidence of spina bifida has been decreasing while the current population’s life expectancy has been increasing (Ridosh, Braun, Roux, Bellin, & Sawin, 2011). Since there is limited research about the occupational impact of spina bifida, the findings of this review will serve to identify these challenges, so occupational therapists (OTs) can create programs and interventions to assist this population as they transition through life.

METHOD: The systematic review was performed by four occupational therapy students in association with an OTR/L mentor. The selected studies were cross reviewed for relevance then assessed for validity using a variety of assessments such as Criteria for Quality Assessment and Qualitative Assessment and Review Instrument (QARI), Physiotherapy Evidence Database Scale (PEDro), and Jadad Scale. The criteria for study inclusion encompassed challenges faced, occupations affected, and interventions used for adolescents with spina bifida. Studies also had to have been published in peer-reviewed journals between 2006 and 2016. Any study involving spina bifida with cognitive deficit comorbidity was excluded.

An EBSCOhost literature search of select databases and occupational therapy journals was performed using the above criteria. Articles were initially chosen based on content and then assessed for rigor and bias using the Criteria for Quality Assessment and QARI, PEDro, and Jadad Scale. A matrix method was created to compare and contrast the following values: research design and question, dependent and independent variables, sample, data analysis, results, and limitations.

RESULTS: The challenges of accessibility, mobility, and sociability were observed in all participants. A recurring theme was “experiencing self as dissimilar other,” which was a result of physically looking different, social isolation, prejudice, and bowel and bladder issues. The lack of independence in mobility and bowel and bladder control limited many social opportunities (Fägerskiöld & Mattsson, 2010; Kinavey, 2007). Participation restrictions, which were negatively related to wheelchair dependence and incontinence, were also experienced.

In terms of self-concept, family, and social relationships with peers, a significant source of strength was found to be close relationships with parents and father’s authority. Struggle for independence in self-care was one of the most important aspects reported by the participants. Researchers found that regardless of the demographics of participants, each study yielded similar results. Many of the studies identify how difficulties in self-care and self-management (e.g., bowel and bladder incontinence) or mobility can impede other occupations like education, work, play, leisure, and social participation. In turn, problems with this population’s overall well-being can surface as a result of those difficulties and the stigma and self-concept issues that accompany them. The similarity among articles is indicative that there are particular areas OTs need to address in order to assist individuals with spina bifida in the transition from adolescence to adulthood.

CONCLUSION: The knowledge gained from this review can be used by OTs to address potential occupational interferences before they become an obstacle. Applying the findings to create interventions that provide earlier training and education to both client and family will serve as a means to set up the younger spina bifida population for success as they age.

References

Fägerskiöld, A., & Mattsson, G. G. (2010). Disabled children and adolescents may be outsiders in the community. International Nursing Review, 57, 470–477. https://doi.org/10.1111/j.1466-7657.2010.00810.x

Kinavey, C. (2007). Adolescents born with spina bifida: Experiential worlds and biopsychosocial developmental challenges. Issues in Comprehensive Pediatric Nursing, 30, 147–164. https://doi.org/10.1080/01460860701728352

Ridosh, M., Braun, P., Roux, G., Bellin, M., & Sawin, K. (2011). Transition in young adults with spina bifida: A qualitative study. Child: Care, Health and Development, 37, 866–874. https://doi.org/10.1111/j.1365-2214.2011.01329.x