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  • Public defence: 2020-02-28 10:00 Örebro universitet, Campus USÖ, hörsal C2, Örebro
    Ehn, Mattias
    Örebro University, School of Health Sciences.
    Life Strategies, Work and Health in People with Usher Syndrome2020Doctoral 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.

    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: 2020-02-04Bibliographically 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: 2020-02-04Bibliographically 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: 2020-02-04Bibliographically 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: 2020-02-04Bibliographically approved
  • Public defence: 2020-03-06 09:00 Örebro universitet, Campus USÖ, hörsal C3, Örebro
    Gadan, Soran
    Örebro University, School of Medical Sciences.
    Long term aspects of defunctioning stoma following low anterior resection for rectal cancer2020Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    In Sweden, more than 2 000 individuals are diagnosed with rectal cancer each year. Surgery is the main curative treatment, and involves removal of the tumor with the surrounding mesorectum in adefined anatomical plane. Intestinal continuity is restored by anastomosing the colon to the rectalstump at the pelvic floor. Leakage of the anastomosis is a potentially life-threatening complication, and is most common in low anastomoses located at the pelvic floor. A temporary defunctioning loop stoma (DS) reduces both the rate of leakage and the severity when leakage occurs despite DS. The use of DS has increased substantially in Sweden over the last 15 years, especially in low anastomoses at the level of the pelvic floor. The purpose of this thesis was to increase the understanding of different aspects of DS and its impact on anorectal function, long-term survival, cancer recurrence, timing of stoma reversal, and the risk of having a permanent stoma.

    In Paper I, the LARS score questionnaire was used to assess anorectal function among patients who had participated in a Swedish nationwide randomized trial. Those who had a DS (n=116) were compared to those without DS (n=118). After a median follow-up time of 12 years, patients with DS had a poorer bowel function than those without DS in terms of incontinence for gas and loose stools. No differences were found with regard to fecal incontinence, defragmentation, and urgency. Women and patients who had received preoperative radiotherapy had poorer anorectal function. Impaired anorectal function was associated with lower self-perceived health.

    In Paper II, a cohort of 110 patients from Örebro Region, Sweden, was investigated with regard to whether or not the DS was reversed within a 4-month period. Only 25% had their stoma reversed within this timeframe. Moreover, a third of the patients had a delayed stoma closure without any identifiable medical reason. This was an improvement compared to a previous study from the same region, which found that 58% of patients operated between 1995 and 2007 had a delayed stoma reversal without any identifiable medical reason. The most common cause for delayed DS reversal in our study was adjuvant chemotherapy (38%).

    In Paper III, the impact of DS on long-term survival and local and distant cancer recurrence was investigated in a nationwide population-based study cohort operated with low anterior resection (LAR) between 1995 and 2010 (n=4130), retrieved from the Swedish Colorectal Cancer Registry. Patients with a DS at LAR (n=2163) had an increased survival rate during the first 3 years afterindex surgery in comparison with those without a DS. Beyond 3 years of follow-up, no difference was noted between the two groups. There were no differences regarding either local cancer recurrence or distant metastases between patients with and without DS.

    In Paper IV, the risk of having a permanent stoma beyond 5 years after rectal cancer surgery was evaluated in 232 patients (excluding mortality within 90 days; n=2) previously randomized to DS or no DS. After a median follow-up of 15 years, 25% (57/232) had a permanent stoma. Of these, 23% (13/57) had their permanent stoma constructed at median 10 years after the index surgery. The incidence of permanent stoma was numerically lower in the group originally randomized to DS, but this difference was not statistically significant. Anastomotic leakage was the most common riskfactor for ending up with a permanent stoma.

    List of papers
    1. Does a Defunctioning Stoma Impair Anorectal Function After Low Anterior Resection of the Rectum for Cancer?: A 12-Year Follow-up of a Randomized Multicenter Trial
    Open this publication in new window or tab >>Does a Defunctioning Stoma Impair Anorectal Function After Low Anterior Resection of the Rectum for Cancer?: A 12-Year Follow-up of a Randomized Multicenter Trial
    2017 (English)In: Diseases of the Colon & Rectum, ISSN 0012-3706, E-ISSN 1530-0358, Vol. 60, no 8, p. 800-806Article in journal (Refereed) Published
    Abstract [en]

    BACKGROUND: Anorectal function after low anterior resection of the rectum for cancer is often impaired, and long-term outcome has not frequently been reported.

    OBJECTIVE: We evaluated anorectal function 12 years after rectal resection with regard to whether patients had a defunctioning temporary stoma at the initial rectal resection.

    DESIGN: An exploratory cross-sectional investigation of a previously randomized study population.

    SETTINGS: Twenty-one Swedish hospitals performing rectal cancer surgery during a 5-year period participated in the trial.

    PATIENTS: Patients operated on with low anterior resection for cancer were included.

    INTERVENTIONS: Patients were randomly assigned to receive or not receive a temporary defunctioning stoma.

    MAIN OUTCOME MEASURES: We evaluated anorectal function 12 years after low anterior resection in patients who were initially randomly assigned to temporary stoma or not, by means of using the low anterior resection syndrome score questionnaire, which assesses incontinence for flatus, incontinence for liquid stools, defecation frequency, clustering, and urgency. Self-perceived health status was evaluated by the EQ-5D-3L questionnaire.

    RESULTS: Eighty-nine percent (87/ 98) of the patients responded to the questionnaires, including 46 with and 41 without an initial temporary stoma. Patient demography was comparable between the groups. No differences regarding major, minor, and no low anterior resection syndrome categories were found between the groups. The stoma group had increased incontinence for flatus (p = 0.03) and liquid stools (p = 0.005) and worse overall low anterior resection syndrome score (p = 0.04) but no differences regarding frequency, clustering, and urgency.

    LIMITATIONS: The study was limited by its sample size (n = 98) based on a previously randomized trial population (n = 234).

    CONCLUSIONS: After low anterior resection for cancer, the incidence of the categories major, minor, and no low anterior resection syndrome were comparable in the stoma and the no-stoma groups. Incontinence for flatus and liquid stools was more commonly reported by patients who were randomly assigned to temporary stoma, as compared with those without, which may indicate an association between temporary stoma and impaired anorectal function.

    Place, publisher, year, edition, pages
    Lippincott Williams & Wilkins, 2017
    Keywords
    Anorectal function, Defunctioning stoma, Low anterior resection, Low anterior resection syndrome score, Rectal cancer
    National Category
    Gastroenterology and Hepatology Surgery
    Identifiers
    urn:nbn:se:oru:diva-59306 (URN)10.1097/DCR.0000000000000818 (DOI)000405418100010 ()28682965 (PubMedID)2-s2.0-85024847647 (Scopus ID)
    Available from: 2017-08-25 Created: 2017-08-25 Last updated: 2020-02-04Bibliographically approved
    2. Reversal of defunctioning stoma following rectal cancer surgery: are we getting better? A population-based single centre experience
    Open this publication in new window or tab >>Reversal of defunctioning stoma following rectal cancer surgery: are we getting better? A population-based single centre experience
    2019 (English)In: ANZ journal of surgery, ISSN 1445-1433, E-ISSN 1445-2197, Vol. 89, no 4, p. 403-407Article in journal (Refereed) Published
    Abstract [en]

    BACKGROUND: The aim was to assess factors influencing the timing of defunctioning stoma (DS) reversal following low anterior resection of rectum for cancer (LAR).

    METHODS: All patients operated with LAR and a primary DS during a 9-year period were included. Reversal later than 120 days after LAR was considered as delayed. A DS not reversed within 2 years was considered as permanent.

    RESULTS: In the present study, median age at LAR was 67 years, 45% were females, median body mass index was 25, 87% had American Society of Anesthesiologists class I or II, 64% had pre-operative radiotherapy, and 3% had cancer stage IV. A total of 79% (92/116) underwent stoma reversal, whereof 25% (23/92) were reversed within 120 days. The most common health-related reasons for delayed stoma reversal were adjuvant chemotherapy in 38%, symptomatic anastomotic leakage in 16% and other post-operative adverse events in 13%. In 35% delayed stoma reversal was because of low priority within the healthcare system. A total of 18% (20/110) never had their DS reversed (n = 11) or had their DS converted to a permanent end colostomy (n = 9). Major risk factors for permanent stoma were stage IV cancer in 55%, and symptomatic anastomotic leakage in 30%.

    CONCLUSION: One fourth of the patients had their defunctioning stoma reversed within 120 days. The most common identifiable medical reasons for delayed stoma reversal were adjuvant chemotherapy and symptomatic anastomotic leakage, while in one out of three patients it was because of low priority by the healthcare provider.

    Place, publisher, year, edition, pages
    Wiley-Blackwell Publishing Inc., 2019
    Keywords
    Defunctioning stoma, low anterior resection, rectal cancer
    National Category
    Cancer and Oncology Surgery
    Identifiers
    urn:nbn:se:oru:diva-72878 (URN)10.1111/ans.14990 (DOI)000465103800023 ()30806006 (PubMedID)2-s2.0-85062339107 (Scopus ID)
    Note

    Funding Agency:

    Örebro County Council, Örebro, Sweden  OL-693821

    Available from: 2019-03-04 Created: 2019-03-04 Last updated: 2020-02-04Bibliographically approved
    3. Defunctioning stoma and oncological outcome after low anterior resection for rectal cancer: findings from a Swedish nation-wideregister-based study
    Open this publication in new window or tab >>Defunctioning stoma and oncological outcome after low anterior resection for rectal cancer: findings from a Swedish nation-wideregister-based study
    (English)Manuscript (preprint) (Other academic)
    National Category
    Surgery Cancer and Oncology
    Identifiers
    urn:nbn:se:oru:diva-79754 (URN)
    Available from: 2020-02-04 Created: 2020-02-04 Last updated: 2020-02-04Bibliographically approved
    4. What is the risk of permanent stoma beyond five years after low anterior resection for rectal cancer? A 15-year follow-up of arandomized trial
    Open this publication in new window or tab >>What is the risk of permanent stoma beyond five years after low anterior resection for rectal cancer? A 15-year follow-up of arandomized trial
    Show others...
    (English)Manuscript (preprint) (Other academic)
    National Category
    Cancer and Oncology Surgery
    Identifiers
    urn:nbn:se:oru:diva-79755 (URN)
    Available from: 2020-02-04 Created: 2020-02-04 Last updated: 2020-02-04Bibliographically approved
  • Public defence: 2020-03-20 09:00 Örebro universitet, Campus USÖ, hörsal C3, Örebro
    Fagerström, Anna
    Örebro University, School of Medical Sciences.
    Long-term molecular epidemiology of extended-spectrum β-lactamase producing Escherichia coli in a low-endemic setting2020Doctoral thesis, comprehensive summary (Other academic)
  • Public defence: 2020-03-27 13:15 Örebro universitet, Hörsal M, Musikhögskolan, Örebro
    Lundh, Simon
    Örebro University, Örebro University School of Business.
    Application of Principles-based Accounting Standards: the case of internally generated intangibles2020Doctoral thesis, monograph (Other academic)
  • Public defence: 2020-04-03 10:15 Örebro universitet, Forumhuset, Hörsal F, Örebro
    Isenström, Lisa
    Örebro University, School of Humanities, Education and Social Sciences.
    Att utbilda rättighetsbärare: Med läraren i fokus när undervisning för mänskliga rättigheter i skolans yngre åldrar studeras2020Doctoral thesis, comprehensive summary (Other academic)
  • Public defence: 2020-04-23 13:00 Örebro universitet, Campus USÖ, hörsal C3, Örebro
    Sakellari, Marianthi
    Örebro University, School of Medical Sciences.
    Functional analysis of the proteasome in eukaryotic organisms2020Doctoral thesis, comprehensive summary (Other academic)
  • Public defence: 2020-05-29 13:15 Örebro universitet, Forumhuset, Hörsal F, Örebro
    Sandström, Lina
    Örebro University, School of Humanities, Education and Social Sciences.
    Seeking Asylum - Finding a Home?: A qualitative study on asylum seekers' integration in two different housing contexts2020Doctoral thesis, monograph (Other academic)