Changing perceptions of womanhood: living with Parkinson's Disease

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Abstract

This study adopted a multiple case study design to develop our understanding of the experiences and adjustments made by women with Parkinson Disease in relation to womanhood. Nineteen women participated in this investigation telling their stories through a combination of individual interviews, group interviews, reflective diaries, reflective tapes and creative writing. Data were analysed using the framework of Intrapersonal, Interpersonal, Extrapersonal and Metapersonal health proposed by Boddy and Rice (Perspectives on Health and Illness, Dunsmore Press, Palmerston North, 1992). Women reported that major changes were required in their lives in each of these aspects of health. In particular women reported labile emotions, changing body images, changing lifestyles, changing relationships with partner, family and friends, increasing dependence, decreasing role fulfillment and the need for support versus increasing isolation. The findings are of particular relevance to nurses and other health professionals involved with women with Parkinson's Disease as well as social services and voluntary agencies.

Section snippets

Introduction and background

Parkinson's Disease is a degenerative neurological condition characterised by slowness of movement, rigidity, abnormalities of posture and tremor of the limbs whilst at rest (Bulpitt et al., 1985). These symptoms frequently give rise to chronic health problems, which require affected individuals to make many adjustments to their lifestyles. Until recently, the condition was commonly regarded as a disease of the elderly. However, in the UK, Parkinson's Disease is estimated to affect 1 in 500

Results and discussion

Because this study concerns women with a chronic illness, it is not surprising that almost all women in the study expressed concern or difficulties with their health. However, according to Madjar (1992a) there are many people who have chronic illnesses but who may consider themselves healthy. Boddy and Rice's (1992) framework of intrapersonal, interpersonal, extrapersonal and metapersonal health is thus used as a template to explore the qualitative data in more depth. All participants used a

Conclusions, limitations and recommendations

This study has illustrated some of the fears and contradictions of the 19 participants in this study all of whom experienced the onset of Parkinson's Disease at a relatively young age. We have collected a wealth of information from the women and have begun to understand issues and identify patterns from these women's experiences. However we do not feel that our work is complete. By this we mean that we have gained a degree of insight into the problem but still have much to learn from the women.

References (34)

  • K. Abe et al.

    Fatigue in patients with Parkinson's disease

    Behavioural Neurology

    (2000)
  • S. Abudi et al.

    Parkinson's disease symptoms—patient's perceptions

    Journal of Advanced Nursing

    (1997)
  • P. Asbring

    Chronic illness—a disruption in life

    Journal of Advanced Nursing

    (2001)
  • K.M. Beier et al.

    Fortschritte in Neurologischer Psychiatrie

    (2000)
  • S. Biggs

    Choosing not to be old? Masks, bodies and identity management in later life

    Ageing and Society

    (1997)
  • G. Brearley et al.

    Counselling in Disability and Illness

    (1994)
  • J. Boddy

    Interpersonal perspectives of health and illness

  • J. Boddy et al.

    Perspectives on Health and Illness

    (1992)
  • R.G. Brown et al.

    Sexual dysfunction in patients with Parkinson's disease and their partners

    Journal of Neurology, Neurosurgery and Psychiatry

    (1990)
  • C. Bulpitt et al.

    The symptoms of patients treated for Parkinson's disease

    Clinical Neuropharmacology

    (1985)
  • S. Delamont

    Field Work in Educational Settings Methods Pitfalls and Perspectives

    (1992)
  • S.A. Factor

    Acetazolomide therapy of menstrual-related fluctuations in Parkinson's disease

    Movement Disorders

    (1993)
  • S. Fisher

    In the Patient's Best Interest

    (1988)
  • R. Gray et al.

    Lower urinary tract dysfunction in Parkinson's diseasechanges related to age not disease

    Age and Ageing

    (1995)
  • S. Grundy

    CurriculumProduct or Praxis

    (1997)
  • Harper, S., 1997. Constructing later life/constructing the body: some thoughts from feminist theory. In: Jamieson, A.,...
  • K. Jurczyk

    Time in women's everyday lives

    Canadian Journal of Aging

    (1999)
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    This study was supported by a grant from The Parkinson's Disease Society.

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