Work and Health in Persons With Usher Syndrome Type 1

Ehn M, Wahlqvist M, Danermark B, Dahlström Ö, Möller C

Audiological Research Centre, University Hospital, Örebro, Sweden

The Swedish Institute for Disability Research, Örebro University, Sweden

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Introduction

Persons with deafblindness and the diagnose Usher syndrome type 1 (profound deafness, balance problems and retinitis pigmentosa) have poorer health including lack of social trust and financial problems compared to the general population in Sweden.

Aim

To explore the relationship between work and health including social trust and financial situation in persons with Usher syndrome type 1.

Method

Participants were recruited from the Swedish Usher database. 48 persons (18-65 y) participated. All participants had a solid clinic/genetic diagnosis. Two groups were formed: work group = 24 persons, non-work group = 24 persons.

Table: Gender, age, visual and audiological data of the participants.
  Work group N=24 Non-work group N=24
Women 46% (N=11) 63% (N=15)
Best corrected Visual acuity (mean) 0.7 0.4
Visual field (mean) 3 (10-30 degrees) 3 (10-30 degrees)
RP diagnose age 15 years 10 years
Mean age 38 years 50 years

The Swedish Health on Equal Terms questionnaire was used with items concerning health, living conditions, employment and social relationships. A Chi Square Test of significance was used with a significance level of p<0.05.

Results

The work group had better physical and psychological health (figure 1). The non-work group showed more difficulties in social trust (figure 2) and had a more problematic financial situation (figure 3). Experiences of being offended and having Suicide thoughts were more common in the work group in contrast to suicidal attempts that were more common in the non-work group. The estimated population with USH 1 in working age in Sweden is 240 persons. Statistical significance was not achieved du to the size of the sample, but participants represent about 20% of the estimated total population of persons with USH 1 in Sweden. The differences between the work and non–work groups remained when controlling for age, gender, level of hearing loss and visual impairment.

Image of Figure 1 in Poster: Work and Health in Persons With Usher Syndrome Type 1
Figure 1: Health problems in the Work Group and the Non-Work Group in percent (%)

Figure 1 Work group % Non-work group %
Suicide thoughts 38 23
Suicide attempts 8 23
Psychological health problems 17 30
Physical health problems 14 41
ADL problems 13 43
Image of Figure 2 in Poster: Work and Health in Persons With Usher Syndrome Type 1
Figure 2: Social trust problems among the Work Group and the Non-Work Group (%)

Figure 2 Work group % Non-work group %
Not receiving help when needed 17 35
Refraining from going out alone 50 64
No general trust in most people 32 55
Having no one to share innermost thoughts with 35 45
Offended 42 13
Image of Figure 3 in Poster: Work and Health in Persons With Usher Syndrome Type 1
Figure 3: Financial problems among the Work Group and the Non-work Group (%)

Figure 3 Work group % Non-work group %
Economic difficulties 17 22
Handle unforseen expenditure 15.000 SEK 33 57

Conclusions

Work activity seems to be a major factor positively correlated to psychological and physical health, social trust and financial situation in persons with Usher syndrome type 1. The differences could not be explained by differences in age, gender, hearing or vision. Vocational training and work-related rehabilitation has to be emphasized in order to promote work activity.

Contact information

Mattias Ehn (mattias.ehn@oru.se), Audiological Research Center, Örebro University Hospital, SE-70185 Örebro, Sweden

Research reported in this publication was supported by Swedish research council (VR-Linnaeus) Örebro University, Swedish association for hard of hearing research fund.

The authors declare no conflict of interest

Relaterad personal: Mattias Ehn, Moa Wahlqvist, Berth Danermark, Claes Möller