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Ehn, M., Anderzen-Carlsson, A., Möller, C. & Wahlqvist, M. (2019). Life strategies of people with deafblindness due to Usher syndrome type 2a-a qualitative study. International Journal of Qualitative Studies on Health and Well-being, 14(1), Article ID 1656790.
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: 2019-09-20Bibliographically approved
Wahlqvist, M., Björk, M., Huus, K. & Anderzen-Carlsson, A. (2018). Health and family climate in families where one parent has deafblindness. In: : . Paper presented at Nordic Audiological Society (NAS 2018), Reykjavik, Iceland, June 6-8, 2018.
Open this publication in new window or tab >>Health and family climate in families where one parent has deafblindness
2018 (English)Conference paper, Oral presentation with published abstract (Other academic)
Abstract [en]

Deafblindness is a distinct and rare disability. The official Nordic definition states that deafblindness is a combined vision and hearing impairment, which limits activities of a person and restrict full participation in society to such degree that society is required to facilitate specific services, environmental alterations and/or technology. Deafblindness has different etiologies, onset and course, which means that the group is very heterogeneous. National authorities argue that there is a lack of guidelines of how to provide adequate evidence based support for persons with deafblindness, and deafblind organizations have specifically pointed out that there is a need for research regarding the family situation. The project aims towards a first step to set a base for evidence based guidelines within the field of family health in deafblindness.

The aim was to explore the family situation from different perspectives, including the parent with deafblindness, the other parent and the children, in families where one parent has deafblindness. Experiences of daily life, including aspects such as strengths and need of support as well as self-reported health and family climate were explored.

Trough convenience sampling method families where one parent had deafblindness was recruited. They were asked to answer questionnaires measuring quality of life, sense of coherence and family climate. Swedish version of questionnaires were used and version for children. Further the families were asked to participate in individual qualitative interviews. In all 14 parents with deafblindness, 6 partners and 18 children between 6-18 years were included. The members in the family had to be living together for at least 50% of the time.

At the presentation preliminary results from the questionnaires concerning quality of life, sense of coherence and family climate from the participants will be presented. Results will be presented at group level. Preliminary results indicate that the participants report poor quality of life, low sense of coherence. For the family climate questionnaire it is a mixed picture that appears indicating both closeness and distance. Comparison between the different perspectives, parent with deafblindness, the other parent and children will be discussed at the presentation.

National Category
Otorhinolaryngology Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:oru:diva-67261 (URN)
Conference
Nordic Audiological Society (NAS 2018), Reykjavik, Iceland, June 6-8, 2018
Available from: 2018-06-14 Created: 2018-06-14 Last updated: 2019-03-26Bibliographically approved
Wahlqvist, M. (2018). Health and people with Usher syndrome, need for biopsychological perspective. In: : . Paper presented at Nordic Audiological Society (NAS 2018), Reykjavik, Iceland, June 6-8, 2018.
Open this publication in new window or tab >>Health and people with Usher syndrome, need for biopsychological perspective
2018 (English)Conference paper, Oral presentation with published abstract (Other academic)
Abstract [en]

To live with deafblindness can be challenging for many reasons and its implications for interaction with others and with the surrounding environment can be vast. People with Usher syndrome (USH) constitute the largest group of individuals under the umbrella term of deafblindness. People with USH have a congenital hearing loss to varying degrees and a progressive eye disease, balance is also affected in some persons. Three clinical groups of Usher syndrome have been identified named 1, 2 and 3, and 13 genes have been disclosed. The progression of Usher syndrome means that over the life course there is a need to adjust to new everyday life situations. Clinical knowledge and limited research that exists have shown that people with deafblindness experience difficulties in everyday living, including problems with anxiety, depression, social withdrawal and communication breakdowns. The aim of the workshop is to discuss the importance of a biopsychosocial approach when describing health for people with USH.

The empirical material employed was based on an extensive survey in which people with USH, all three types included, answered two questionnaires concerning health, anxiety, depression, social trust, work, health-care, financial situation, and alcohol and drug use. The focus was on general health, physical health and psychological health, social trust and finance.

The results revealed poor physical and psychological health, a lack of social trust and a strained financial situation regardless of clinical diagnosis and in comparison with a reference, a cross-section of the Swedish population. People with Usher syndrome reported high frequencies of fatigue, headache, different kinds of pain in back, neck and shoulders, suicide thoughts and suicide attempts. Furthermore social problems in terms of being afraid to go out alone, lack of general trust, having no one to share innermost feelings and confide in and having no one to ask for help when needed was revealed.

At the presentation different theoretical perspectives of health will be addressed and the discussion will stress the importance of taking a biopsychosocial approach when describing the health of people with USH, in which previous research is lacking. If a biopsychosocial approach is not considered there is a risk of reducing the complexity of living with a progressive condition such as Usher syndrome.

National Category
Otorhinolaryngology Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:oru:diva-67259 (URN)
Conference
Nordic Audiological Society (NAS 2018), Reykjavik, Iceland, June 6-8, 2018
Available from: 2018-06-14 Created: 2018-06-14 Last updated: 2019-03-26Bibliographically approved
Ehn, M., Wahlqvist, M., Danermark, B., Dahlström, Ö. & Möller, C. (2018). Health, work, social trust, and financial situation in persons with Usher syndrome type 1. Work: A journal of Prevention, Assessment and rehabilitation, 60(2), 209-220
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: 2019-03-26Bibliographically approved
Wahlqvist, M. (2018). Hälsa hos personer med Ushers syndrom. In: : . Paper presented at TemMA Hörsel 2018, Örebro, Sweden, 13-15 mars, 2018.
Open this publication in new window or tab >>Hälsa hos personer med Ushers syndrom
2018 (Swedish)Conference paper, Oral presentation with published abstract (Refereed)
National Category
Otorhinolaryngology Occupational Therapy
Identifiers
urn:nbn:se:oru:diva-73839 (URN)
Conference
TemMA Hörsel 2018, Örebro, Sweden, 13-15 mars, 2018
Available from: 2019-04-17 Created: 2019-04-17 Last updated: 2019-04-17Bibliographically approved
Wahlqvist, M., Möller, C., Möller, K. & Danermark, B. (2016). Implications of Deafblindness: The Physical and Mental Health and Social Trust of Persons with Usher Syndrome Type 3. Journal of Visual Impairment & Blindness, 110(4), 245-256
Open this publication in new window or tab >>Implications of Deafblindness: The Physical and Mental Health and Social Trust of Persons with Usher Syndrome Type 3
2016 (English)In: Journal of Visual Impairment & Blindness, ISSN 0145-482X, E-ISSN 1559-1476, Vol. 110, no 4, p. 245-256Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
American Foundation for the Blind, 2016
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Disability Science
Identifiers
urn:nbn:se:oru:diva-53386 (URN)000384897800004 ()
Available from: 2016-11-03 Created: 2016-11-03 Last updated: 2019-03-26Bibliographically approved
Wahlqvist, M., Möller, K., Möller, C. & Danermark, B. (2016). Physical and psychological health, social trust and financial situation for persons with Usher syndrome type 1. The British Journal of Visual Impairment, 34(1), 15-25
Open this publication in new window or tab >>Physical and psychological health, social trust and financial situation for persons with Usher syndrome type 1
2016 (English)In: The British Journal of Visual Impairment, ISSN 0264-6196, E-ISSN 1744-5809, Vol. 34, no 1, p. 15-25Article in journal (Refereed) Published
Abstract [en]

The article describes physical health, psychological health, social trust, and financial situation in persons with deafblindness due to Usher syndrome type 1 (USH1) in comparison with a crosssection of the Swedish population. Persons with USH1 were recruited through the Swedish Usher database. Totally, 87 adults received the Health on Equal Terms (HET) questionnaire. The HET was adjusted, thus the questions were translated into Swedish sign language, and a large font size, better contrast, and a structure compatible with the Braille script reader were also provided. The questionnaire comprises a wide range of domains related to health and wellbeing. In all, 60 persons responded (60% women, mean age: 49 years, range: 21–79 years). The persons with USH1 were compared to a cross section of the Swedish population that included 5738 individuals (56% women, mean age: 49 years, range: 16–84 years). Significant differences in physical health, psychological health, social trust, and financial situation as well as the odds ratio adjusted for sex and age, and its 95% confidence interval are reported. The psychological health, social trust, and financial situation of persons with USH1 were significantly poorer compared to the reference group although this was not the case for physical health. Persons with USH1 only expressed significantly more problems with headache compared to the cross section of the Swedish population. The respondents revealed major problems with fatigue, loss of confidence, and suicide thoughts and attempts. Major social trust and financial problems were reported in terms of refraining going out alone, not receiving help, having no one with whom to share thoughts, and confide in and being unable to obtain 15.000 SEK (approximately US$1.724 or €1.544) in the case of an unforeseen situation. To identify factors associated with physical health, psychological health, social trust, and financial situation is important in the design of future rehabilitation strategies for persons with USH1. The high level of psychological distress and lack of social trust reported could be related to ontological insecurity, as well as lack of recognition from others. Special attention must be devoted to suicide behavior.

Place, publisher, year, edition, pages
London, United Kingdom: Sage Publications, 2016
Keywords
Deafblindness, health, physical health, psychological health, social trust, Usher syndrome 1
National Category
Medical and Health Sciences Ophthalmology
Identifiers
urn:nbn:se:oru:diva-47253 (URN)10.1177/0264619615610158 (DOI)000433687500003 ()
Available from: 2015-12-28 Created: 2015-12-28 Last updated: 2019-03-26Bibliographically approved
Wahlqvist, M. (2015). Health and People with Usher syndrome. (Doctoral dissertation). Örebro: Örebro university
Open this publication in new window or tab >>Health and People with Usher syndrome
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The present thesis concerns people with Usher syndrome (USH) and their health. People with USH have a congenital hearing loss of various degrees and an eye disease with a progressive course; for some, the balance is also affected. Three clinical groups have been identified 1, 2 and 3, and 13 genes have currently been identified. USH is the most common cause of deafblindness. Clinical knowledge and the limited research that exists have shown that people with deafblindness can experience difficulties in everyday life. Depression, anxiety and social withdrawal have been described.

The general aim of the present thesis was to describe the health of people with USH. The empirical material employed was based on an extensive survey in which people with USH answered two questionnaires concerning health, anxiety, depression, social trust, work, health-care, financial situation, and alcohol and drug use. The focus of the present thesis is on general health, physical health and psychological health, social trust and finance. Three studies in the present theses focus on USH1, 2 and 3, respectively; finally, the fourth study provides an in-group comparison of people with USH. The results of studies I and III are compared with a crosssection of the Swedish population. The results revealed poor physical and psychological health, a lack of social trust and a strained financial situation regardless of clinical diagnosis. The discussion stresses the importance of taking a biopsychosocial approach when describing the health of people with USH, in which previous research is lacking. Additional research should focus on the mechanisms at different levels that affect people with USH and their health from a life- course perspective. Furthermore, research should include a salutogenic perspective to explore the resources and strengths of people with USH.

Place, publisher, year, edition, pages
Örebro: Örebro university, 2015. p. 118
Series
Studies from The Swedish Institute for Disability Research, ISSN 1650-1128 ; 76
Keywords
Usher syndrome, Deafblindness, Health, General Health, Physical Health, Psychological Health, Social Trust, Financial Situation
National Category
Otorhinolaryngology Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Disability Research
Identifiers
urn:nbn:se:oru:diva-46059 (URN)978-91-7529-098-0 (ISBN)
Public defence
2015-11-13, Prismahuset, Hörsal 2, Örebro universitet, Fakultetsgatan 1, Örebro, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2015-10-12 Created: 2015-10-12 Last updated: 2019-03-26Bibliographically approved
Wahlqvist, M., Möller, K., Möller, C. & Danermark, B. (2015). Physical and Psychological Health, Social Trust and Financial Situation for persons with Usher syndrome type 1. The British Journal of Visual Impairment
Open this publication in new window or tab >>Physical and Psychological Health, Social Trust and Financial Situation for persons with Usher syndrome type 1
2015 (English)In: The British Journal of Visual Impairment, ISSN 0264-6196, E-ISSN 1744-5809Article in journal (Refereed) Accepted
Place, publisher, year, edition, pages
London, United Kingdom: Sage Publications, 2015
National Category
Otorhinolaryngology Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:oru:diva-46189 (URN)
Available from: 2015-10-20 Created: 2015-10-19 Last updated: 2019-06-14Bibliographically approved
Wahlqvist, M., Möller, C., Möller, K. & Danermark, B. (2013). Physical and psychological health in persons with deafblindness that is due to Usher Syndrome Type II. Journal of Visual Impairment & Blindness, 107(3), 207-220
Open this publication in new window or tab >>Physical and psychological health in persons with deafblindness that is due to Usher Syndrome Type II
2013 (English)In: Journal of Visual Impairment & Blindness, ISSN 0145-482X, E-ISSN 1559-1476, Vol. 107, no 3, p. 207-220Article in journal (Refereed) Published
Abstract [en]

Introduction: The objectives of the study reported here were to describe the physical and psychological health of persons with Usher syndrome Type II (USH2) and to explore any differences in terms of gender.

Methods: The participants were recruited from the Swedish Usher database. In the first step, 122 persons received the questionnaire by mail, and 96 (aged 18–84, with a mean age of 55, 53% of whom were female) agreed to participate. The Health on Equal Terms questionnaire was used, which covered such items as health, living conditions, and social relationships. Results for the participants with USH2 were compared to those of a reference group of 5,738 persons who were drawn from a random sample of the Swedish population retrieved from the Swedish Public Health Institute. The odds ratio (adjusted for gender and age), and its 95% confidence interval were calculated.

Results: The participants with USH2 reported that their physical and psychological health was significantly poorer than that of the Swedish reference group. They revealed major problems involving headache, fatigue, depression, suicidal thoughts, and suicide attempts. For the male participants, the psychological differences were even more marked than those of the male reference group.

Discussion: The identification of factors associated with physical and psychological health and well-being is important for the design of future rehabilitation strategies for people with USH2. Special focus must be placed on the psychological well-being of men with USH2.

Implications for practitioners: The management of rehabilitation services for persons with USH2 calls for interdisciplinary teamwork to provide adequate resources to cope with the physical and psychological health issues demonstrated in this study.

Place, publisher, year, edition, pages
New York, USA: American Foundation for the Blind, 2013
Keywords
Usher Synddrome, Physical Health, Psychological Health, Sex Differences, Health
National Category
Public Health, Global Health, Social Medicine and Epidemiology Otorhinolaryngology
Research subject
Disability Science
Identifiers
urn:nbn:se:oru:diva-29013 (URN)000209257700005 ()2-s2.0-84877262611 (Scopus ID)
Funder
Swedish Research Council
Note

Funding Agency:

Hearing Foundation 

Swedish Association of Hard of Hearing People 

Available from: 2013-05-30 Created: 2013-05-13 Last updated: 2019-03-26Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-6965-6820

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