Till Örebro universitet

Purpose: The 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.

Methods: In 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, chi(2)-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.

Results: Problems 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.

Conclusion: The 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.

This study aimed to examine support and adaptation needed by persons with four different types of disabilities, either at their workplace or in order to enter the labour market. A secondary analysis was conducted, based on the regular labour market survey (AKU), and an additional survey which included questions specifically posed to persons with disabilities. All participants had either partly or very reduced work ability. There was more need for adaptation than for support, independently of work ability and current employment status. Around 60% of respondents with a psychological disability reported a need for adapted work pace and working time, both at their workplace and in order to enter the labour market. Adapted work tasks were an important factor, especially for persons who were not currently working; around half of the non-employed participants said this adaptation could make it possible for them to work, regardless of type of disability.

This article uses the philosophy of critical realism to overcome the problem that most contemporary guidelines for interdisciplinary research fail to provide would-be researchers with adequate advice. It arrives at five important steps in the interdisciplinary research process: an initial planning phase; a disciplinary phase; a teamwork phase characterized by cross-disciplinary understanding; and a transdisciplinary, creative phase that involves epistemic emergence, and that results in the integration of knowledge. The fifth phase is the result of the integrative fourth phase; it provides a holistic interdisciplinary understanding of the involved structures and mechanisms of the issue at hand. To make interventions derived from interdisciplinary research useful, they must be disseminated in such way as to include a return to reality, that is, there must be a movement from epistemology to ontology.

Background and Objectives: Societal factors seem to exercise a strong influence on hearing aid uptake, use, and satisfaction. In particular, knowledge, perception, and attitude of people will have bearing towards their and others health behavior and decisions. The current study aimed at understanding the perception of hearing aids by adults belonging to the general population in different countries.

Subjects and Methods: The study employed a crosssectional design. A sample of 404 adults from India, Iran, Portugal, and the United Kingdom were recruited by relying on a convenience sampling. Previously published data was re-analyzed but it was applied for different approach. Free association task was used to collect the data. They were asked to provide up to five words or phrases that come to mind when thinking about "hearing aids." The data was initially analyzed based on qualitative content analysis. This was followed by quantitative cluster analysis and chi square analysis.

Results: The content analysis suggested 39 main categories of responses related to hearing aids. The cluster analysis resulted in five main clusters, namely: 1) positive attitude, 2) external factors, 3) hearing aid use and satisfaction, 4) etiology, and 5) benefits and limitations of technology. A few demographic factors (i.e., education, occupation type, country) showed association with different clusters, although country of origin seemed to be associated with most clusters.

Conclusions: The study provides us with unique insights into the perception of hearing aids by the general public, and additionally, the way demographic variables may influence these perceptions.

BACKGROUND: Research has demonstrated that persons with Usher syndrome type 1 (USH1) have significantly poorer physical and psychological health compared to a reference group.

PURPOSE: To explore the relation between work, health, social trust, and financial situation in USH1 compared to a reference group.

MATERIAL: Sixty-six persons (18-65 y) from the Swedish Usher database received a questionnaire and 47 were included, 23 working and 24 non-working. The reference group comprised 3,049 working and 198 non-working persons.

METHODS: The Swedish Health on Equal Terms questionnaire was used and statistical analysis with multiple logistic regression was conducted.

RESULTS: The USH1 non-work group had a higher Odds ratio (95% CI) in poor psychological and physical health, social trust, and financial situation compared to the USH1 work group and reference groups. Age, gender, hearing, and vision impairment did not explain the differences. The relation between the USH1 work and non-work groups showed the same pattern as the reference groups, but the magnitude of problems was significantly higher.

CONCLUSIONS: Both disability and unemployment increased the risk of poor health, social trust and financial situation in persons with USH1, but having an employment seemed to counteract the risks related to disability.

This study aims to understand patterns in the social representation of hearing loss reported by adults across different countries and explore the impact of different demographic factors on response patterns. The study used a cross-sectional survey design. Data were collected using a free association task and analysed using qualitative content analysis, cluster analysis and chi-square analysis. The study sample included 404 adults (18 years and over) in the general population from four countries (India, Iran, Portugal and UK). The cluster analysis included 380 responses out of 404 (94.06%) and resulted in five clusters. The clusters were named: (1) individual aspects; (2) aetiology; (3) the surrounding society; (4) limitations and (5) exposed. Various demographic factors (age, occupation type, education and country) showed an association with different clusters, although country of origin seemed to be associated with most clusters. The study results suggest that how hearing loss is represented in adults in general population varies and is mainly related to country of origin. These findings strengthen the argument about cross-cultural differences in perception of hearing loss, which calls for a need to make necessary accommodations while developing public health strategies about hearing loss.

Labour market policies targeting people with disabilities primarily focus on establishing a working life based on reaching and procuring employment. Less attention is directed towards the qualitative aspects of working conditions or opportunities to retain employment. This study seeks to examine how people with disabilities who, with the help of Supported Employment (SE) methods, are establishing themselves in the labour market, experience social inclusion at their workplaces and how their working conditions influence their experiences with social inclusion. Data were collected in semi-structured interviews. Two themes were prominent in the interviewees’ experiences with social inclusion: the importance of being a valued worker and the sense of social belonging. Competence is important to feeling valued, as is working in fair working conditions. Disclosure of disability often helps to create fairness. The sense of social belonging arises from natural support and mattering to others. Important conditions that increase social inclusion are job-matching and natural support. The SE method can therefore contribute to the creation of social inclusion by ensuring that the matching process is well thought out and by utilizing strategies for inclusion, such as encouragement of natural support.

Introduction: The aim of this study was to describe health and social trust in persons with Usher syndrome type 3 (USH3) in relation to hearing and visual impairment.

Methods: Participants were recruited from the Swedish Usher database. Twenty-one persons with USH3 received two questionnaires, which covered a wide range of domains related to health and social trust. Fifteen individuals, 4 men and 11 women aged 19-71 years, responded. Each outcome measure within every domain reported by the individual was structured into a matrix, which included auditory and visual findings.

Results: Severe problems with health and social trust were apparent for persons with USH3. Differences in the number of reported problems were suggested. Three persons had cochlear implants, and they reported far fewer problems with physical health, mental health, and social trust than the others.

Discussion: Three major patterns emerged. The first was that the group was heterogeneous with regard to the problems reported in the biopsychosocial dimensions; that is, general health, physical health, and mental health, as well as social trust. The second was that none of the biopsychosocial dimensions could be disregarded when describing health among persons with USH3. The third major pattern was that a cochlear implant might benefit the health of persons with USH3.

Implications for practitioners: The results suggested poor physical and mental health and severe social trust problems for people with USH3. Interdisciplinary strategies are required to facilitate the rehabilitation of persons with USH3 throughout their lifespan.