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Adults with Cerebral Palsy: living with a lifelong disability
Linköping University, Faculty of Health Sciences. Linköping University, Department of Medical and Health Sciences, Physiotherapy. Östergötlands Läns Landsting, Reconstruction Centre, Department of Rehabilitation Medicine UHL.
2009 (English)Licentiate thesis, comprehensive summary (Other academic)
Abstract [en]

Although Cerebral Palsy (CP) is a lifelong disability, the research has mainly focused in children with CP. However, in recent years new studies have examined the different aspects of being an adult with a congenital disability.

The overall aim of this thesis is to contribute to increased knowledge and understanding in living with cerebral palsy as an adult, with special focus on the lived body and physiotherapy/physical activity.

The thesis is based on two populations. The first population (study I) consists of 48 individuals with a variation in gross motor function equivalent to the general CP‐population, including all five levels according to a gross motor classification (Gross Motor Function Classification System, GMFCS). The second population (study II and III), consists of 22 individuals, representing level II to IV according to the gross motor classification (GMFCS).

Study I comprises structured questions and clinical investigations with well‐recognized assessment instruments and are analysed according to quantitative methods. Study II and III are based on in‐depth interviews and are analysed using qualitative methods.

The overall result is that there is a deterioration of motor function in many individuals already early in adulthood. These deteriorations are preceded and/or followed by musculoskeletal problems such as pain and limited range of motion, often in combination with fatigue. Despite deteriorations many people maintain daily personal activities, but are often forced to prioritize among societal activities.

The deterioration is often perceived as slow and imperceptible, but it also results in a change in self‐image with new thoughts about otherness and being different. This can be experienced in relation to activity limitations with difficulties in taking part in other people’s activities, but also in relation to attitudes and treatment from other people. The process of deterioration also influences autonomy, with limited ability to determine one’s own daily life.

Important prerequisites for carrying out physical activity in a longer perspective is that it has to be enjoyable, give effects, be comprehensible and integrated in daily life. In addition it is important with support from competent professionals in health care. Experiences of these prerequisites vary and, above all, in adulthood the lack of competent support is a factor which is illuminated of the majority of the interviewed and assessed individuals.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press , 2009. , 59 p.
Series
Linköping Studies in Health Sciences. Thesis, ISSN 1100-6013 ; 91
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-15771ISBN: 978-91-7393-731-3 OAI: oai:DiVA.org:liu-15771DiVA: diva2:134247
Presentation
2009-01-23, Berzeliussalen, ingång 65, Campus US, Linköpings Universitet, Linköping, 09:00 (English)
Supervisors
Available from: 2009-01-19 Created: 2009-01-19 Last updated: 2017-04-15Bibliographically approved
List of papers
1. Descriptions of functioning and health and relations to a gross motor classification in adults with cerebral palsy
Open this publication in new window or tab >>Descriptions of functioning and health and relations to a gross motor classification in adults with cerebral palsy
2004 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 26, no 17, 1023-1031 p.Article in journal (Refereed) Published
Abstract [en]

Purpose: The aim of this study was to describe functioning and health, and explore the use of the Gross Motor Function Classification System (GMFCS) in an adult population with cerebral palsy (CP).

Methods: From a cohort of 199 persons, 48 persons were selected for structured interviews and functional assessments regarding activities of daily living, motor function, range of motion, pain and general health.

Results: A third of the population had deteriorated in function from adolescence to adulthood according to the GMFCS. The majority were independent in personal ADL, but many of those were dependent in instrumental ADL. Motor function scores reflected problems in walking ability, and limited ROM and pain were common in all functional levels. General health was lower than in a general population. GMFCS seems valid for classifying adults with CP since it is correlated with instruments measuring motor function and ADL in terms of dependence.

Conclusion: Decreased functional ability and secondary musculoskeletal problems are common in adults with CP and general health can be associated with those problems. It is important to further explore health aspects and relations between health status and self-perceived health. The GMFCS is a useful tool, especially for comparisons throughout the life span, but in order to use in an adult population further development is needed.

Place, publisher, year, edition, pages
Taylor & Francis Group, 2004
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-16369 (URN)10.1080/09638280410001703503 (DOI)
Available from: 2009-01-19 Created: 2009-01-19 Last updated: 2017-12-14Bibliographically approved
2. The lived body: experiences from adults with cerebral palsy
Open this publication in new window or tab >>The lived body: experiences from adults with cerebral palsy
2007 (English)In: Clinical Rehabilitation, ISSN 0269-2155, E-ISSN 1477-0873, Vol. 21, no 5, 432-441 p.Article in journal (Refereed) Published
Abstract [en]

Objective: To get a deeper understanding into how adults with cerebral palsy experience living with a disability and how they manage daily life.

Design: Interviews with open-ended questions were carried out. They were analysed by one person according to the Empirical Phenomenological Psychological method (EPP).Setting and subjects : Twenty-two community-living adults (35—68 years) with cerebral palsy from five counties in Sweden participated. All had mobility problems and all had cognitive abilities making it possible to carry on a conversation.

Results: The varied experiences resulted in themes including (1) perceptions of living with a disability and (2) strategies used for managing the described perceptions. The perceptions were: a dys-appearing body, a not-appearing body, difference, being in-between, normality, restricted autonomy and autonomy. The strategies were: to fight one's way, to plan, to get used to it, to hide and to give one's all.

Conclusion: These interviews expressed heterogeneity in lived experiences showing the importance for professionals to meet people with cerebral palsy as individual subjects in relation to functional problems, self-image and autonomy together with seeing the consequences of different coping strategies.

Place, publisher, year, edition, pages
Sage Journals online, 2007
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-16370 (URN)10.1177/0269215507073489 (DOI)
Available from: 2009-01-19 Created: 2009-01-19 Last updated: 2017-12-14Bibliographically approved
3. Prerequisites for carrying out physiotherapy and physical activity: experiences from adults with cerebral palsy
Open this publication in new window or tab >>Prerequisites for carrying out physiotherapy and physical activity: experiences from adults with cerebral palsy
2009 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 31, no 3, 161-169 p.Article in journal (Refereed) Published
Abstract [en]

Purpose: The aim of this study was to get a deeper understanding into how adults with cerebral palsy (CP) experience physiotherapy and physical activity in a perspective from childhood to adulthood; and how personal and environmental factors influence possibilities for physiotherapy and physical activity.

Method: Data was collected through interviews with 22 community-living adults (35 - 68 years) with CP, from five counties in Sweden. The questions were open-ended and the interviews were taped and transcribed to written language. The material was analysed through qualitative content analysis, a classification process resulting in different themes.

Results: The narratives from the 22 informants, based on experiences from childhood to adulthood, resulted in a description of prerequisites for carrying out physiotherapy and physical activity. Five different themes were identified: (i) Being enjoyable, (ii) Giving effects, (iii) Being comprehensible, (iv) Being integrated in daily life, and (v) Supportive healthcare with competent professionals.

Conclusion: The information from the interviews elucidates the importance of a lifelong support from healthcare professionals. Physiotherapists with attentiveness to different life situations in combination with good understanding and knowledge in CP could facilitate continuous physical activity in people growing up and ageing with CP.

Keyword
Ageing, cerebral palsy, healthcare, physical training, well-being
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-16371 (URN)10.1080/09638280701850934 (DOI)
Note
This is an electronic version of an article published in:Karin Sandström, Kersti Samuelsson and Birgitta Öberg, Prerequisites for carrying out physiotherapy and physical activity: experiences from adults with cerebral palsy, 2009, Disability and rehabilitation, (31), 3, 161-169.Disability and rehabilitation is available online at informaworld:http://dx.doi.org/10.1080/09638280701850934Copyright: Taylor Francis http://www.informaworld.com/Available from: 2009-03-10 Created: 2009-01-19 Last updated: 2017-12-14Bibliographically approved

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