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Living with physical disability: experiences of the rehabilitation process, occupations and participation in everyday life
Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation.
2004 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

A comprehensive understanding is lacking of the experiences persons with acquired physical disabilities have of changes in their engagement in occupations and of the conditions influencing these experiences Furthermore, little is known about the experiences these people have of the rehabilitation process and whether the rehabilitation services satisfy their needs. Access to such knowledge would significantly add to the ability to design rehabilitation services intended to enhance participation in everyday life. The overall aim of this thesis was, therefore, to illuminate and enhance the understanding of how persons with acquired physical disabilities experienced their rehabilitation process and their possibilities to engage in occupations in everyday life.

The thesis is comprised of five studies. The planning of the clients’ rehabilitation at hospital was explored through interviews with the clients (n=57) and the professionals (n=50). Interviews exploring how persons with physical disabilities experienced their rehabilitation process (n=15), their occupational lives in their homes (n=13) and the use of assistive devices (n =17) were analysed qualitatively. Data was also collected from persons with spinal cord injury (n =161) by the Impact on Participation and Autonomy questionnaire.

The findings showed that the professionals used different strategies to encourage the clients to participate in the planning of the rehabilitation and that the strategies were based on traditions rather than on the individual clients’ desires to participate. The informants’ experiences reflected three parallel chains of rehabilitation over a period of time, a medical, a psychological and a social one. The influence of the different rehabilitation chains on how the clients’ lives turned out varied over time, and the professionals were predominantly involved in the medical rehabilitation chain. The informants’ experiences showed that their engagement in occupations in the home differed profoundly. Access to social support, which was provided under different conditions, was of decisive importance for their occupational engagement. The findings also showed that changes in the informants’ occupations in the home setting transformed the meaning of the home in general. The meaning of using assistive devices was experienced as manifold and double-edged. The incorporation of or resistance to assistive devices was understood as different approaches to adaptation with the same intention: to achieve desired occupational self-images. The majority of the informants perceived their participation in the life situation as sufficient but more than half reported one or more severe problems with participation. Access to social support in everyday occupations had a greater impact on predicting severe problems with participation than certain traditional health related factors or aspects related to the individual.

To conclude, the findings indicate that the rehabilitation services need to be better able to adapt to clients’ desires to participate in the planning of their rehabilitation, and designed to satisfy the various needs the clients experience throughout the rehabilitation process. It was revealed that the societal and social environment, as manifested through social interactions, are of central importance in understanding the consequences of and possibilities to engage in occupations supporting participation in everyday life.

Place, publisher, year, edition, pages
2004. , 70 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 901
Keyword [en]
disabled persons, activities of daily living, occupations, social environment, social support, disability evaluation, rehabilitation, occupational therapy, patient participation, patient-centred care
Research subject
Occupational and Environmental Medicine
Identifiers
URN: urn:nbn:se:umu:diva-317ISBN: 91-7305-684-7 (print)OAI: oai:DiVA.org:umu-317DiVA: diva2:143078
Public defence
2004-10-08, Aulan, Vårdvetarhuset, 10:00
Opponent
Available from: 2004-09-17 Created: 2004-09-17 Last updated: 2010-08-03Bibliographically approved
List of papers
1. Patients’ perceptions of their participation in rehabilitation planning and professionals’ view of their strategies to encourage it
Open this publication in new window or tab >>Patients’ perceptions of their participation in rehabilitation planning and professionals’ view of their strategies to encourage it
2001 (English)In: Occupational Therapy International, ISSN 0966-7903, Vol. 8, no 3, 151-167 p.Article in journal (Refereed) Published
Abstract [en]

The purposes of this descriptive study were threefold: first, to describe how patients perceived their participation in the planning of their rehabilitation; second, to describe nurses' and occupational therapists' view of the strategies they used to encourage patients' participation; and third, to compare the perceptions of the two groups. Data was collected through semi-structured interviews with 57 hospitalized patients, 39 nurses and 11 occupational therapists. On the basis of the data patients were categorized as (a) 'relinquishers', (b) 'participants', and (c) 'occasional participants'. Professionals were categorized as 'information providers' and 'rehabilitation practitioners'. The strategies used by the professionals to encourage patient participation were approximately the same irrespective of patient category. It is suggested that professionals need to be sensitive to the patient's desire to participate in the planning of a rehabilitation programme. Further research is recommended to investigate circumstances affecting patients' participation and which strategies professionals can use to encourage their participation.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:umu:diva-4104 (URN)11823880 (PubMedID)
Available from: 2004-09-17 Created: 2004-09-17 Last updated: 2010-08-03Bibliographically approved
2. How a group of disabled persons experience rehabilitation over a period of time
Open this publication in new window or tab >>How a group of disabled persons experience rehabilitation over a period of time
2001 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 8, no 2, 96-104 p.Article in journal (Refereed) Published
Abstract [en]

The purpose of this study was to describe how a group of mainly elderly disabled persons experienced their rehabilitation over a period of time focusing on their interactions with professionals, relatives and the community. Fifteen persons who had suddenly been taken ill and who had received rehabilitation were interviewed. The interview transcripts were analysed qualitatively. The results showed that the informants' experiences could be described in a form of three rehabilitation chains, each one consisting of a number of phases. First, a medical rehabilitation chain that started at the onset of the informants' disability. This chain was relatively short and reflected the informants' interactions with the professionals. A psychological rehabilitation chain that represented the informants' internal struggle towards a new meaningful life. The third was labelled a social rehabilitation chain. This chain became visible later in the rehabilitation process and reflected the informants' interactions with their relatives and their experiences of a stigmatizing society. Although rehabilitation in Sweden is claiming to apply a holistic perspective encompassing medical, psychological and social aspects, the results of the study showed that it is not perceived so by the informants in the study, who experienced rehabilitation mainly in the medical rehabilitation chain.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:umu:diva-4105 (URN)10.1080/110381201300173630 (DOI)
Available from: 2004-09-17 Created: 2004-09-17 Last updated: 2010-08-03Bibliographically approved
3. Occupational life in the home environment: The experiences of people with disabilities
Open this publication in new window or tab >>Occupational life in the home environment: The experiences of people with disabilities
2004 (English)In: Canadian Journal of Occupational Therapy / Revue Canadienne d`Ergotèrapie, ISSN 0008-4174, Vol. 71, no 4, 243-251 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: There is a need to empirically explore the occupational engagement of people with disabilities to support the development of occupational therapy interventions. PURPOSE: This study describes how people with disabilities experience their occupational lives in their home environment. METHOD: Thirteen people with physical disabilities living at home were interviewed and data were subsequently analysed using a constant comparative method. RESULTS: The findings showed that interactions between the individuals and their environment influenced their experiences of engaging in occupations and the meaning of their home. Occupations formed three categories: always performed with others, occasionally disrupted or deprived. These were particularly related to the social support that was provided under different conditions. This condition formed a central category: access to social support for occupations. Their experiences of performing occupations in the home also formed another central category: transformed meaning of the home. PRACTICE IMPLICATIONS: By understanding enabling conditions as well as barriers to occupational engagement, effective occupational therapy interventions can be developed to support the occupational lives of people with disabilities.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:umu:diva-4106 (URN)15586857 (PubMedID)
Available from: 2004-09-17 Created: 2004-09-17 Last updated: 2010-08-03Bibliographically approved
4. Incorporating or resisting assistive devices: Different approaches in achieving a desired occupational self-image
Open this publication in new window or tab >>Incorporating or resisting assistive devices: Different approaches in achieving a desired occupational self-image
2003 (English)In: OTJR (Thorofare, N.J.), ISSN 1539-4492, Vol. 23, no 2, 67-75 p.Article in journal (Refereed) Published
Abstract [en]

The purpose of this study was to enhance the understanding of how people with disabilities experience the meaning of their assistive devices in their occupations and how they act on their experiences. Seventeen participants were interviewed and data were analyzed using a qualitative approach. The participants’ experiences showed that they reacted differently to the manifold and often contradictory meaning of assistive devices. The analysts organized the participants’ reactions into three categories: pragmatic users, ambivalent users, and reluctant users. The differences between the participants were understood as representing different adaptive approaches to achieve desired occupational self-images. Thus, the assistive devices were not in themselves important, but were merely a means to achieve a desired self-image. The findings reflect that the participants’ experiences of using assistive devices reveal meanings about their use that go beyond the traditional medical perspective that focuses on the role of assistive devices as compensation for physical impairment.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:umu:diva-4107 (URN)
Available from: 2004-09-17 Created: 2004-09-17 Last updated: 2010-08-03Bibliographically approved
5. Perceptions of participation and predictors of perceived problems with participation in persons with spinal cord injury
Open this publication in new window or tab >>Perceptions of participation and predictors of perceived problems with participation in persons with spinal cord injury
Show others...
2005 (English)In: Journal of Rehabilitation Medicine, ISSN 1650-1977, Vol. 37, no 1, 3-8 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: To describe how persons with spinal cord injury perceived their participation in life situations and to determine the relationship between their participation and perceived problems therewith. The purpose was also to evaluate the influence of age, sex, level of injury, time since injury, marital status and access to social support on perceived problems with participation. DESIGN: Cross-sectional. SUBJECTS: One hundred sixty-one persons with spinal cord injury. METHODS: A postal questionnaire including socio-demographic characteristics and a Swedish version of the Impact on Participation and Autonomy questionnaire. RESULTS: A majority of the respondents perceived their participation as sufficient in most activities addressed. Still, a majority of the respondents perceived one or more severe problems with their participation. Access to social support was the most influencing variable in predicting perceived severe problems with participation as compared with certain personal and health-related factors. CONCLUSION: The results suggest that it is important to consider access to social support along with other factors in the person-environment interaction and their influence on severe problems with participation in enhancing clients' participation in rehabilitation.

Keyword
patient participation, activities of daily living, rehabilitation, personal autonomy, social support, disabled persons
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:umu:diva-7521 (URN)10.1080/16501970410031246 (DOI)15788326 (PubMedID)
Available from: 2008-01-10 Created: 2008-01-10 Last updated: 2010-08-03Bibliographically approved

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