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Psoriasis care consumption and consequences of having psoriasis in everyday life
Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
2006 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis concerns a research project about psoriasis care and conse¬quences of psoriasis in the county of Västerbotten in Northern Sweden. The overall aim of the thesis is to contribute to improvement of psoriasis care through increased knowledge of the use and accessibility of psoriasis care, and knowledge of impact of psoriasis on patients’ daily lives by describing and interpreting: (i) accessibility and use of psoriasis care, (ii) consequences of having psoriasis in everyday life, and (iii) dilemmas in psoriasis care and visions of future care among professionals, politicians and administrators.

The theoretical framework in the psoriasis project was based on previous research, theories and concepts about priority setting, stigma, coping and qual¬ity of life. Parts of the framework were basis of the project plan and other parts were included in order to analyse the findings. Two different methodological approaches were used as complement to each other. The project started with a questionnaire to all known persons with psoriasis in Västerbotten with ques¬tions about socio-economic factors, psoriasis symptoms, psoriasis care, and quality of life. These formed the basis for two studies. The first focused on quality of life, and the other on gender differences in psoriasis care. Qualita¬tive research interviews were made with persons with psoriasis, and with ad¬ministrators, politicians and professionals. The interviews formed the basis for two studies focusing on consequences of psoriasis, and priorities and visions in psoriasis care, respectively. Findings from the studies are reported in four papers.

Accessibility of psoriasis care influenced the use among persons with pso¬riasis. Use was also influenced by age, income, joint symptoms and quality of life. Men used psoriasis care more often than women. Both genders expected professional care and amelioration, while more women valued polite treat¬ment. Expectations were fulfilled apart from amelioration. Among decision makers, accessibility and issues on organisation and ethics involved priority dilemmas. The persons with psoriasis stated that visibility of both skin psoria¬sis and joint changes, as well as being stigmatised, was the worst with living with psoriasis. The visibility and stigmatisation were most difficult in younger ages. Some of those with both rashes and joint changes thus felt stigmatised in a twofold way. In order to deal with these difficulties, commonly used coping strategies were routinisation of both treatment and of adjustment to the stigma¬tising process, a strategy which could not be found in literature, and accep¬tance. These strategies developed with age. Those with large disease extent and joint symptoms run the highest risk of impaired health-related quality of life. Most of the interviewed participants, took power over their lives and by using coping strategies created an acceptable personal quality of life for them¬selves. Still they could not find anything positive with having psoriasis.

In specialised care as well as local health care, special attention should be paid to gender differences and distance to treatment facilities, and handling of possible stigmatisation in patient care. This thesis suggests that the coping theories should be complemented with routinisation as a coping strategy for psoriasis patients. Also, more research on the usefulness of the letter of referral and its consequence on equality and fairness are suggested.

Place, publisher, year, edition, pages
Umeå: Department of Social Work andDepartment of Public Health and Clinical Medicine Dermatology and Venereology Umeå University , 2006. , 73 p.
Series
Studier i socialt arbete vid Umeå universitet : avhandlings- och skriftserie, ISSN 0283-300X ; 51
Keyword [en]
Accessibility, coping, gender, letter of referral, quality of life, routinisation, stigma, visibility.
National Category
Social Work
Identifiers
URN: urn:nbn:se:umu:diva-866ISBN: 91-7264-164-9 (print)OAI: oai:DiVA.org:umu-866DiVA: diva2:144797
Public defence
2006-10-07, Hörsal E, Humanisthuset, Umeå universitet, Umeå, 10:00 (English)
Opponent
Supervisors
Available from: 2006-09-14 Created: 2006-09-14 Last updated: 2012-02-16Bibliographically approved
List of papers
1. Determinants of quality of life in a psoriasis population in northern Sweden
Open this publication in new window or tab >>Determinants of quality of life in a psoriasis population in northern Sweden
2004 (English)In: Acta Dermato-Venereologica, ISSN 0001-5555, Vol. 84, no 1, 37-43 p.Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to assess possible determinants of quality of life in psoriasis patients in northern Sweden, and to analyse the association between these determinants and quality of life. A questionnaire was mailed to 1,707 subjects, resulting in a response rate of 74%. The study is therefore based on 1,060 subjects, since 195 denied having psoriasis. Quality of life was measured using a version of the Dermatology Life Quality Index. The extent of the disease was estimated using the patients' sketches. The association between determinants and quality of life was calculated in a risk analysis using logistic regression. Large disease extent and joint symptoms were the strongest indicators for impaired quality of life. Other indicators were withdrawal from medical treatment due to distance to treatment facilities, which strongly influenced the quality of life and choice of treatment.

Place, publisher, year, edition, pages
The Society for Publication of Acta Dermato-Venereologica, 2004
Keyword
age, cost, distance, extension, gender, joint symptoms
Identifiers
urn:nbn:se:umu:diva-12465 (URN)10.1080/00015550310015833 (DOI)
Available from: 2008-11-14 Created: 2008-11-14 Last updated: 2010-02-23Bibliographically approved
2. Psoriasis care consumption and expectations from a gender perspective in a psoriasis population in northern Sweden
Open this publication in new window or tab >>Psoriasis care consumption and expectations from a gender perspective in a psoriasis population in northern Sweden
2005 (English)In: Acta Dermato-Venereologica, ISSN 0001-5555, Vol. 85, no 6, 503-508 p.Article in journal (Refereed) Published
Abstract [en]

The aim was to analyse use of psoriasis care and expectations from a gender perspective in a psoriasis population. The study is based on questionnaire data from 1060 subjects. The response rate was 74%. The relation between care consumption and studied variables was measured using regression and chi-square analysis. Care consumption was strongly influenced by age, quality of life, income and joint symptoms. Men visited a dermatologist more often, while women visited a general practitioner and treated themselves topically more frequently. Important expectations among both women and men concerned the receiving of professional care and amelioration, while more women wanted to be treated politely. Expectations were fulfilled, except those regarding amelioration, especially among men. Awareness of gender differences is important among professionals. In order to decrease such differences decision-makers should provide for a maintained specialized care as well as a local health care system of high standard.

Place, publisher, year, edition, pages
The Society for Publication of Acta Dermato-Venereologica, 2005
Keyword
expectations, gender, income, joint symptoms, psoriasis care consumption, quality of life
Identifiers
urn:nbn:se:umu:diva-12464 (URN)10.1080/00015550510036667 (DOI)
Available from: 2008-11-14 Created: 2008-11-14 Last updated: 2010-02-23Bibliographically approved
3. Marked by visibility of psoriasis in everyday life.
Open this publication in new window or tab >>Marked by visibility of psoriasis in everyday life.
2007 (English)In: Qualitative Health Research, ISSN 1049-7323, Vol. 17, no 3, 364-372 p.Article in journal (Refereed) Published
Abstract [en]

In this study, the authors aimed at a sociological approach to the individual’s everyday life with psoriasis and to this end conducted qualitative interviews with 18 persons from a county in northern Sweden. The most difficult aspects of living with psoriasis were being marked by the visibility of psoriasis, especially in the younger ages, and the visibility of joint changes. Therefore, those with both rashes and joint changes felt marked and discredited in a twofold way. Commonly used coping strategies were routinization of both the treatment and the adjustment to the marking process, and acceptance, and these strategies developed with age. Most participants experienced a good quality of life but still could find nothing positive about psoriasis. The authors suggest efforts toward increased awareness among health care professionals of the marking process and future qualitative studies about experiences of psoriasis during adolescence.

Place, publisher, year, edition, pages
SAGE Publications, 2007
Keyword
Adult, Aged, Arthritis; Psoriatic/psychology, Attitude of Health Personnel, Female, Humans, Male, Middle Aged, Prejudice, Psoriasis/*psychology, Qualitative Research, Quality of Life, Sex Factors, Sweden
Identifiers
urn:nbn:se:umu:diva-14662 (URN)10.1177/1049732306297674 (DOI)17301344 (PubMedID)
Available from: 2008-11-14 Created: 2008-11-14 Last updated: 2010-02-23Bibliographically approved
4. Priority dilemmas in psoriasis care and visions of a future care in a group of administrators, politicians and professionals in northern Sweden.
Open this publication in new window or tab >>Priority dilemmas in psoriasis care and visions of a future care in a group of administrators, politicians and professionals in northern Sweden.
2008 (English)In: Health Policy, ISSN 0168-8510, Vol. 87, no 2, 203-216 p.Article in journal (Refereed) Published
Abstract [en]

During the 1990s priority discussions were actualized in Sweden due to increased demands on health care and limited resources. In the county of Västerbotten in northern Sweden, with large rural areas, the decision makers faced special challenges due to distances and cost. Despite discussions striving for fairness in priorities, decision makers are still dealing with limited resources and difficult priority decisions regarding different diseases and treatments.

In this study we aimed at describing views on priorities in public psoriasis care and visions of a future care among politicians, administrators and professionals in the county of Västerbottten in northern Sweden. Qualitative research interviews were performed with 23 key-persons. The findings revealed priority dilemmas about issues on organization, accessibility and ethics. Visions of a future care appeared as ambitions of a more effective care with good accessibility, continued research, information and a holistic approach in priorities.

We conclude that dilemmas revealed in this study were a reflection of a gap between intentions and practice. In efforts to reduce these dilemmas we suggest methods with fairness in economic planning and priority setting, with concrete, official statements about the dominating views on which the priorities are based, and public information about these statements.

Keyword
Accessibility, Admission note, Economy, Ethics, Fairness, Holistic view
National Category
Public Health, Global Health, Social Medicine and Epidemiology Social Work
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-10193 (URN)10.1016/j.healthpol.2008.01.005 (DOI)18302973 (PubMedID)
Available from: 2008-11-14 Created: 2008-11-14 Last updated: 2011-08-31Bibliographically approved

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