Adults with Cerebral Palsy : living with a lifelong disability

• Main Author: Sandström, Karin
• Format: Others
• Language: English
• Published: Linköpings universitet, Hälsouniversitetet 2009
• Subjects: Medical and Health Sciences; Medicin och hälsovetenskap
• Online Access: http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-15771; http://nbn-resolving.de/urn:isbn:978-91-7393-731-3

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.