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Life strategies of people with deafblindness due to Usher syndrome type 2a-a qualitative study
Örebro University, School of Health Sciences. The Swedish Institute for Disability Research, Örebro University, Örebro, Sweden; Audiological research centre, University hospital, Örebro, Sweden.
Örebro University, School of Health Sciences. Örebro University Hospital. The Swedish Institute for Disability Research, Örebro University, Örebro, Sweden; University Health Care Research Centre, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.ORCID iD: 0000-0001-7352-8234
Örebro University, School of Medical Sciences. The Swedish Institute for Disability Research, Örebro University, Örebro, Sweden; Audiological research centre, University hospital, Örebro, Sweden.ORCID iD: 0000-0001-6557-6359
Örebro University, School of Health Sciences. Örebro University Hospital. The Swedish Institute for Disability Research, Örebro University, Örebro, Sweden; Audiological research centre, University hospital, Faculty of Medicine and Health, Örebro University, Örebro, Sweden; The Swedish National Resource Centre for Deafblindness, Lund, Sweden .ORCID iD: 0000-0002-6965-6820
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. Vol. 14, no 1, article id 1656790
Keywords [en]
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: urn:nbn:se:oru:diva-76565DOI: 10.1080/17482631.2019.1656790ISI: 000483845400001PubMedID: 31470768Scopus ID: 2-s2.0-85071653423OAI: oai:DiVA.org:oru-76565DiVA, id: diva2:1352887
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
In thesis
1. Life Strategies, Work and Health in People with Usher Syndrome
Open this publication in new window or tab >>Life Strategies, Work and Health in People with Usher Syndrome
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
Deafblindnesss, health, life strategies, lived experience, Usher syndrome, work
National Category
Other Health Sciences
Identifiers
urn:nbn:se:oru:diva-78667 (URN)978-91-7529-322-6 (ISBN)
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

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Ehn, MattiasAnderzen-Carlsson, AgnetaMöller, ClaesWahlqvist, Moa

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