Sage Journals: Discover world-class research

Abstract

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.

Get full access to this article

View all access options for this article.

References

Mutch L AE , Kodama K. , Perat MV Cerebral palsy epidemiology: where are we now and what are we going ? Dev Med Child Neurol 1992; 34: 547—51 .

Andersson C. , Mattsson E. Adults with cerebral palsy: a survey describing problems, needs, and resources, with special emphasis on locomotion . Dev Med Child Neurol 2001; 43: 76—82 .

Ando N. , Ueda S. Functional deterioration in adults with cerebral palsy . Clin Rehabil 2000; 14: 300—306 .

Andren E. , Grimby G. Dependence in daily activities and life satisfaction in adult subjects with cerebral palsy or spina bifida: a follow-up study . Disabil Rehabil 2004; 26: 528—36 .

Bottos M. , Feliciangeli A. , Sciuto L. , Gericke C. , Vianello A. Functional status of adults with cerebral palsy and implications for treatment of children . Dev Med Child Neurol 2001; 43: 516—28 .

Jahnsen R. , Villien L. , Egeland T. , Stanghelle JK , Holm I. Locomotion skills in adults with cerebral palsy . Clin Rehabil 2004; 18: 309—16 .

Sandstrom K. , Alinder J. , Oberg B. Descriptions of functioning and health and relations to a gross motor classification in adults with cerebral palsy . Disabil Rehabil 2004; 26: 1023—31 .

Strauss D. , Ojdana K. , Shavelle R. , Rosenbloom L. Decline in function and life expectancy of older persons with cerebral palsy . NeuroRehabilitation 2004; 19: 69—78 .

Jahnsen R. , Villien L. , Stanghelle JK , Holm I. Fatigue in adults with cerebral palsy in norway compared with the general population . Dev Med Child Neurol 2003; 45: 296—303 .

10.

Murphy KP , Molnar GE , Lankasky K. Medical and functional status of adults with cerebral palsy . Dev Med Child Neurol 1995; 37: 1075—84 .

11.

Schwartz L. , Engel JM , Jensen MP Pain in persons with cerebral palsy . Arch Phys Med Rehabil 1999; 80: 1243—46 .

12.

Turk MA , Geremski CA , Rosenbaum PF , Weber RJ The health status of women with cerebral palsy . Arch Phys Med Rehabil 1997; 78: S10—17 .

13.

Jahnsen R. , Villien L. , Aamodt G. , Stanghelle JK , Holm I. Musculoskeletal pain in adults with cerebral palsy compared with the general population . J Rehabil Med 2004; 36: 78—84 .

14.

Furukawa A IH , Nshiyama M. , Nii E. , Ushida A. A study on the subjective well-being of adult patients with cerebral palsy . J Phys Ther Sci 2001; 13: 31—35 .

15.

Svenaeus F. The phenomenology of health and illness. In Toombs SK ed. Handbook of phenomenology and medicine. Kluwer Academic , 2001: 87—108.

16.

Merleau-Ponty M. Phenomenology of perception. Routledge and Kegan Paul , 1962.

17.

Toombs SK The meaning of illness. Kluwer Academic , 1992.

18.

Kvale S. Interviews an introduction to qualitative research interviewing. Thousand Oaks , 1996.

19.

Palisano R. , Rosenbaum P. , Walter S. , Russell D. , Wood E. , Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy . Dev Med Child Neurol 1997; 39: 214—23 .

20.

Jahnsen R AG , Rosenbaum P. Gross motor function classification system used in adults with cerebral palsy: Agreement of self-reported professional rating . Dev Med Child Neurol 2006; 48: 734—38 .

21.

Karlsson G. Psychological qualitative research from a phenomenological perspective. Almqvist & Wiksell International , 1995.

22.

Dudgeon BJ , Gerrard BC , Jensen MP , Rhodes LA , Tyler EJ Physical disability and the experience of chronic pain . Arch Phys Med Rehabil 2002; 83: 229—35 .

23.

Dudgeon BJ , Tyler EJ , Rhodes LA , Jensen MP Managing usual and unexpected pain with physical disability: A qualitative analysis . Am J Occup Ther 2006; 60: 92—103 .

24.

Leder D. The absent body. The University of Chicago Press , 1990.

25.

Corbin J SA. Unending work and care. Jossey Bass Publishers , 1989.

26.

Oliver M. Understanding disability. St. Martin's Press , 1996.

27.

Antle BJ Factors associated with self-worth in young people with physical disabilities . Health Soc Work 2004; 29: 167—75 .

28.

King Gaw , C. Specht , JA Brown E. Social support processes and the adaptation of individuals with chronic disabilities . Qual Health Res 2006; 16: 902—25 .

29.

Becker H SJ. Perceived health and self-efficacy among adults with cerebral palsy . J Rehabil 1995 ; 61: 36—42 .

30.

Mackenzie C. On bodily autonomy. In Toombs SK ed. Handbook of phenomenology and medicine. Kluwer Academic , 2001.

31.

Taleporos G. , McCabe MP. Body image and physical disability — personal perspectives . Soc Sci Med 2002; 54: 971—80 .

The lived body — experiences from adults with cerebral palsy

Abstract

Get full access to this article

References