Living with advanced Parkinson’s disease: a constant struggle with unpredictability
Identifieur interne : 000270 ( Main/Exploration ); précédent : 000269; suivant : 000271Living with advanced Parkinson’s disease: a constant struggle with unpredictability
Auteurs : Anita Haahr [Danemark] ; Marit Kirkevold [Norvège] ; Elisabeth O. C. Hall [Danemark] ; Karen Stergaard [Danemark]Source :
- Journal of Advanced Nursing [ 0309-2402 ] ; 2011-02.
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Abstract
haahr a., kirkevold m., hall e.o.c. & østergaard k. (2011) Living with advanced Parkinson’s disease: a constant struggle with unpredictability. Journal of Advanced Nursing 67(2), 408–417. Abstract: Aim. This paper is a report of an exploration of patients’ lifeworld and way of managing life with advanced Parkinson’s disease prior to Deep Brain Stimulation and what they expect from life following this treatment. Background. Parkinson’s disease is a progressive neurodegenerative disease, which is initially well‐treated with L‐dopa. Living with Parkinson’s disease means living with the experience of continuous loss of independence and self‐esteem and unpredictable ON/OFF phenomena. Thus, in the advanced stage of the disease, treatment with Deep Brain Stimulation may become relevant. Method. Eleven patients eligible for Deep Brain Stimulation were interviewed prior to treatment. Data were collected in 2007 and analysed according to the hermeneutic phenomenological methodology of van Manen, using the four existentials as analytic tools. Findings. Living with advanced Parkinson’s disease can be described as the experience of living with and managing unpredictability. The disease gradually took over, and participants had to struggle with unpredictability on a daily basis. Themes in relation to this were: The body – setting the agenda, Always a struggle to be on time, Living in dependence and compromise – being a burden, and Living with restrained space and changes in social life. Conclusion. Parkinson’s disease leads to profound bodily restrictions. Living with an unpredictable body affects all aspects of life, and nurses need to be aware of the impact the disease has on the entire lifeworld, and how this may affect the way treatment is perceived.
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DOI: 10.1111/j.1365-2648.2010.05459.x
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RN Professor Department of Nursing Science, School of Public Health, Aarhus University, Denmark, and Institute of Nursing and Health Sciences, University of Oslo</wicri:regionArea><wicri:noRegion>University of Oslo</wicri:noRegion></affiliation></author><author><name sortKey="Hall, Elisabeth O C" sort="Hall, Elisabeth O C" uniqKey="Hall E" first="Elisabeth O. C." last="Hall">Elisabeth O. C. Hall</name><affiliation wicri:level="1"><country xml:lang="fr">Danemark</country><wicri:regionArea>Elisabeth O. C. 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(2011) Living with advanced Parkinson’s disease: a constant struggle with unpredictability. Journal of Advanced Nursing 67(2), 408–417. Abstract: Aim. This paper is a report of an exploration of patients’ lifeworld and way of managing life with advanced Parkinson’s disease prior to Deep Brain Stimulation and what they expect from life following this treatment. Background. Parkinson’s disease is a progressive neurodegenerative disease, which is initially well‐treated with L‐dopa. Living with Parkinson’s disease means living with the experience of continuous loss of independence and self‐esteem and unpredictable ON/OFF phenomena. Thus, in the advanced stage of the disease, treatment with Deep Brain Stimulation may become relevant. Method. Eleven patients eligible for Deep Brain Stimulation were interviewed prior to treatment. Data were collected in 2007 and analysed according to the hermeneutic phenomenological methodology of van Manen, using the four existentials as analytic tools. Findings. Living with advanced Parkinson’s disease can be described as the experience of living with and managing unpredictability. The disease gradually took over, and participants had to struggle with unpredictability on a daily basis. Themes in relation to this were: The body – setting the agenda, Always a struggle to be on time, Living in dependence and compromise – being a burden, and Living with restrained space and changes in social life. Conclusion. Parkinson’s disease leads to profound bodily restrictions. Living with an unpredictable body affects all aspects of life, and nurses need to be aware of the impact the disease has on the entire lifeworld, and how this may affect the way treatment is perceived.</div></front></TEI><affiliations><list><country><li>Danemark</li><li>Norvège</li></country></list><tree><country name="Danemark"><noRegion><name sortKey="Haahr, Anita" sort="Haahr, Anita" uniqKey="Haahr A" first="Anita" last="Haahr">Anita Haahr</name></noRegion><name sortKey=" Stergaard, Karen" sort=" Stergaard, Karen" uniqKey=" Stergaard K" first="Karen" last=" Stergaard">Karen Stergaard</name><name sortKey="Hall, Elisabeth O C" sort="Hall, Elisabeth O C" uniqKey="Hall E" first="Elisabeth O. C." last="Hall">Elisabeth O. C. 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