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Life Strategies, Work and Health in People with Usher Syndrome
Örebro University, School of Health Sciences.
2020 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction: People with Usher syndrome (USH) have an inherited disorder causing congenital deafness or hearing loss combined with progressive vision loss and, in some cases, balance problems. Previous research has shown that people with USH have poor physical and psychological health. Research has, however, demonstrated that there are in-group health differences that have not yet been explored and that there is a lack of studies on life strategies as well as health in relation to working life.

Aim: The aim was to explore the relationship between work and health in people with USH1 and 2 and to explore the experiences of life strategies in people with USH 2.

Methods: A quantitative and a qualitative explorative design was employed comprising two cross-sectional studies of the relationship between work and health in people with USH2 (n=67) and USH1 (n=47). The third study, of life strategies, comprised focus group interviews with people with USH2a (n=14) analyzed by content analysis. The fourth study explored the lived experiences of working life by interviewing people with USH2 (n=7) using an interpretative phenomenological approach.

Results: Study 1 and 2 demonstrated significant differences in health between working and nonworking people. Nonworking people showed significantly poorer health. In study 3, a variety of strategies to prevent and resolve challenges in life, as well as to comfort oneself was identified. The lived experiences of working life in people with USH2 (study 4) disclosed feelings of satisfaction, striving towards a work life balance. Work also disclosed feelings of limitations and uncertainty about the future.

Conclusion: The results, which are discussed in relation to the Meikirsh model of health, demonstrated a complexity. Individual life strategies, psychological flexibility and environmental aspects, such as social determinants have to be considered to receive a comprehensive picture of the relationship between work and health in people with USH. This thesis provides new insights into the health of people with USH.

Place, publisher, year, edition, pages
Örebro: Örebro University , 2020. , p. 81
Series
Studies from The Swedish Institute for Disability Research, ISSN 1650-1128 ; 99
Keywords [en]
Deafblindnesss, health, life strategies, lived experience, Usher syndrome, work
National Category
Other Health Sciences
Identifiers
URN: urn:nbn:se:oru:diva-78667ISBN: 978-91-7529-322-6 (print)OAI: oai:DiVA.org:oru-78667DiVA, id: diva2:1379141
Public defence
2020-02-28, Örebro universitet, Campus USÖ, hörsal C2, Södra Grev Rosengatan 32, Örebro, 10:00 (Swedish)
Opponent
Supervisors
Note

Kerstin Möller och Berth Danermark är före detta ej längre aktiva handledare.

Available from: 2019-12-16 Created: 2019-12-16 Last updated: 2020-02-06Bibliographically approved
List of papers
1. The relationship between work and health in persons with Usher syndrome type 2
Open this publication in new window or tab >>The relationship between work and health in persons with Usher syndrome type 2
2016 (English)In: Journal of Visual Impairment & Blindness, ISSN 0145-482X, E-ISSN 1559-1476, Vol. 110, no 4, p. 233-244Article in journal (Refereed) Published
Abstract [en]

Introduction: Persons with deafblindness may have additional physical and psychological health problems. In this study we have focused on health from a work-life perspective in persons with Usher syndrome type 2 (USH2), a disorder with sensorineural hearing loss and retinitis pigmentosa. The aim of this study was to investigate the relationship between work and disability pension and physical and psychological health in persons with USH2.

Methods: Participants were recruited from the Swedish Usher database. Eighty-four persons (aged 18 to 65 years) received a health-related questionnaire and 67 (36 women and 31 men) agreed to participate. The participants formed two groups (working group, n = 34; disability pension group, n = 33). A Swedish Health on Equal Terms questionnaire comprising questions on psychological and physical health, living conditions, work activity, and social relationships was used. A chi-square test of significance was used with a significance level of p < 0.05.

Results: The two groups did not differ in terms of age, gender, degree of hearing loss, visual acuity, or visual field loss. The working group had statistically significant better health compared to the disability pension group in areas such as being overweight, handling problems, concentration, feeling unhappy, depressive symptoms, and feelings of worthlessness. Suicidal thoughts and attempts were significantly more common in the disability pension group.

Discussion: Persons with USH2 generally reported very poor physical and psychological health, with significant differences between persons who were working and those who were not. This study highlights the need for early rehabilitation, vocational training, and opportunities to access the labor market. Implications for practitioners: It is important that persons with USH2 receive vocational support from an early age and that professionals in the field of rehabilitation always include work activity as a key element of interventions.

Place, publisher, year, edition, pages
New York, USA: American Foundation for the Blind, 2016
National Category
Occupational Therapy Other Health Sciences
Identifiers
urn:nbn:se:oru:diva-51754 (URN)000384897800003 ()
Funder
Swedish Research Council
Note

Funding Agency:

Örebro University

Available from: 2016-08-23 Created: 2016-08-23 Last updated: 2020-03-11Bibliographically approved
2. Health, work, social trust, and financial situation in persons with Usher syndrome type 1
Open this publication in new window or tab >>Health, work, social trust, and financial situation in persons with Usher syndrome type 1
Show others...
2018 (English)In: Work: A journal of Prevention, Assessment and rehabilitation, ISSN 1051-9815, E-ISSN 1875-9270, Vol. 60, no 2, p. 209-220Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
IOS Press, 2018
Keywords
Employment, working life, health, psychological health, dual sensory loss, deafblindness
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:oru:diva-68163 (URN)10.3233/WOR-182731 (DOI)000436889900006 ()29865098 (PubMedID)2-s2.0-85049496022 (Scopus ID)
Funder
Swedish Research Council
Note

Funding Agency:

Örebro University

Available from: 2018-07-25 Created: 2018-07-25 Last updated: 2020-03-11Bibliographically approved
3. Life strategies of people with deafblindness due to Usher syndrome type 2a-a qualitative study
Open this publication in new window or tab >>Life strategies of people with deafblindness due to Usher syndrome type 2a-a qualitative study
2019 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 14, no 1, article id 1656790Article in journal (Refereed) Published
Abstract [en]

Purpose: To explore life strategies in people with Usher syndrome type 2a.

Background: There are no studies on life strategies in people with Usher syndrome. People with deafblindness are often described in terms of poor health and low quality of life, or as being vulnerable. From a clinical point of view, it is of importance to balance this picture, with an increased knowledge of life strategies.

Methods: The study had a qualitative explorative design. Fourteen people aged 20-64 years (4 women, 10 men) with USH2a in Sweden participated in focus group interviews, which were transcribed and analysed by qualitative content analysis.

Results: The content analysis resulted in seven categories; remaining active, using devices, using support, sharing knowledge, appreciating the present, maintaining a positive image and alleviating emotional pain. Two sub-themes: resolve or prevent challenges and comforting oneself was abstracted forming a theme "being at the helm".

Conclusion: The findings show that people with USH2a have a variety of life strategies that can be interpreted as highlighting different aspects of psychological flexibility in a life adjustment process. The study demonstrates that people with USH2a manage in many ways, and metaphorically, by "taking the helm", they strive to actively navigate towards their own chosen values.

Place, publisher, year, edition, pages
Taylor & Francis, 2019
Keywords
Deafblindness, focus groups, life strategies, psychological flexibility, qualitative content analysis, Usher syndrome type 2
National Category
Public Health, Global Health, Social Medicine and Epidemiology Nursing
Identifiers
urn:nbn:se:oru:diva-76565 (URN)10.1080/17482631.2019.1656790 (DOI)000483845400001 ()31470768 (PubMedID)2-s2.0-85071653423 (Scopus ID)
Funder
Swedish Research Council
Note

Funding Agency:

Swedish Institute for Disability Research, Örebro University

Available from: 2019-09-20 Created: 2019-09-20 Last updated: 2020-03-11Bibliographically approved
4. Experiences of work and health in people with Usher Syndrome type 2: a qualitative study
Open this publication in new window or tab >>Experiences of work and health in people with Usher Syndrome type 2: a qualitative study
(English)Manuscript (preprint) (Other academic)
National Category
Other Health Sciences
Identifiers
urn:nbn:se:oru:diva-79756 (URN)
Available from: 2020-02-04 Created: 2020-02-04 Last updated: 2020-03-11Bibliographically approved

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