Abstract
PurposeThe primary aim was to describe the similarities and differences among the general health, physical health, psychological health, social trust, and financial situations of people with Usher syndrome (USH) types 1, 2, and 3. A second aim was to explore whether age, gender, clinical diagnosis, visual field, visual acuity, and degree of hearing impairment were associated with the general health, physical health, psychological health, social trust, and financial situations of people with USH.MethodsIn this study, 162 people with USH living in Sweden were included, and all three types of the disease were represented. Data concerning vision, hearing, and genetics were retrieved from the Swedish Usher database. Group comparison using frequencies, χ2-tests and Kruskal-Wallis tests for group comparison were used. To examine the effect of independent variables on poor health outcomes, a logistic regression analysis was conducted.ResultsProblems with poor health, social trust, and finances were found for all three types; however, more similarities than differences were found. The results of the regression model were ambiguous; it is not clear which independent measures contributed the most to poor outcomes. People with USH3 tended to report the most problems regarding the dependent outcome measures.ConclusionThe observations of the associations between the independent variables and poor health, social trust and finances made in the present study are important to bear in mind in a rehabilitation setting; however, they do not fully explain how people with USH actually feel or rate their health. More research is needed to confirm the knowledge that exists within the clinical setting and the life stories told by the people with USH to merge existing knowledge into a rehabilitation setting based on evidence.
Highlights
People with disabilities are more vulnerable to poor health status and comorbidities (Verbrugge et al, 1989; Abdullah et al, 2004)
The present study focused on the questions in the Health on equal terms (HET) that pertained to general health, physical health, psychological health, and social relationships
The results present the analysis of which dependent health outcomes were associated with the controlled independent variables demographics, clinical diagnosis, degree of hearing impairment (HI), visual field and visual acuity, and the extent to which the variables affected the health outcome
Summary
People with disabilities are more vulnerable to poor health status and comorbidities (Verbrugge et al, 1989; Abdullah et al, 2004). People with deafblindness [i.e., those with combined visual and hearing impairment (HI)] are a vulnerable group in society because their impairment severely restricts information, interactions, and communication with others (World Federation of the Deafblind, 2018). Because vision and hearing are complementary senses and enhance each other, impairments in one sense (i.e., hearing or vision) make it possible to compensate for restrictions in the other. For those with deafblindness, the ability to compensate becomes restricted due to impairments in both senses (Möller C., 2003). As defined in the Nordic definition of deafblindness: “Deafblindness is a combined vision and hearing impairment of such severity that it is hard for the impaired senses to compensate for each other. Deafblindness limits activities and restricts full participation in society” (Nordic Centre for Welfare and Social Issues, 2016)
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