Movement Disorders (revue)

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Living with a person who has Parkinson's disease: the spouse's perspective by stage of disease. Parkinson's Study Group.

Identifieur interne : 004E63 ( Ncbi/Merge ); précédent : 004E62; suivant : 004E64

Living with a person who has Parkinson's disease: the spouse's perspective by stage of disease. Parkinson's Study Group.

Auteurs : J H Carter [États-Unis] ; B J Stewart ; P G Archbold ; I. Inoue ; J. Jaglin ; M. Lannon ; E. Rost-Ruffner ; M. Tennis ; M P Mcdermott ; D. Amyot ; R. Barter ; L. Cornelius ; C. Demong ; J. Dobson ; J. Duff ; J. Erickson ; N. Gardiner ; L. Gauger ; P. Gray ; B. Kanigan ; B. Kiryluk ; P. Lewis ; K. Mistura ; T. Malapira ; K. Zoog

Source :

RBID : pubmed:9452321

English descriptors

Abstract

The objective of this study was to examine the experience of spouses caregiving for their spouse with Parkinson's disease (PD) and to determine whether their experiences differed by stage of disease. By using a cross-sectional design and mail questionnaire data from 380 spouse caregivers across 23 sites of the Parkinson Study Group, key caregiver variables were examined by stage of PD. Three categories of variables--caregiver role strain (10 measures), caregiver situation (four measures), and caregiver characteristics (four measures)--were analyzed by using t tests with Bonferroni correction. Specific types and amounts of role strain accumulated as the disease progressed, and they differed significantly between stages (p < 0.05). In the caregiving situation, the mean number of caregiving tasks tripled by stage 4/5. Negative changes in lifestyle plus decreases in predictability in caregivers' lives increased significantly in late-stage disease (p < 0.05). Caregiver characteristics of physical health and preparedness did not significantly differ across stages of disease. Depression was significantly higher by stage 4/5. Mutuality, the positive quality of the relationship as perceived by the caregiving spouse, declined beginning at stage 2. Caregiver strain is experienced across all stages of PD and accumulates significantly as the disease progresses. This study defines types and amounts of strain by stage of disease, which will be helpful in designing formal intervention trials to provide more effective help for spouse caregivers.

DOI: 10.1002/mds.870130108
PubMed: 9452321

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pubmed:9452321

Le document en format XML

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<div type="abstract" xml:lang="en">The objective of this study was to examine the experience of spouses caregiving for their spouse with Parkinson's disease (PD) and to determine whether their experiences differed by stage of disease. By using a cross-sectional design and mail questionnaire data from 380 spouse caregivers across 23 sites of the Parkinson Study Group, key caregiver variables were examined by stage of PD. Three categories of variables--caregiver role strain (10 measures), caregiver situation (four measures), and caregiver characteristics (four measures)--were analyzed by using t tests with Bonferroni correction. Specific types and amounts of role strain accumulated as the disease progressed, and they differed significantly between stages (p < 0.05). In the caregiving situation, the mean number of caregiving tasks tripled by stage 4/5. Negative changes in lifestyle plus decreases in predictability in caregivers' lives increased significantly in late-stage disease (p < 0.05). Caregiver characteristics of physical health and preparedness did not significantly differ across stages of disease. Depression was significantly higher by stage 4/5. Mutuality, the positive quality of the relationship as perceived by the caregiving spouse, declined beginning at stage 2. Caregiver strain is experienced across all stages of PD and accumulates significantly as the disease progresses. This study defines types and amounts of strain by stage of disease, which will be helpful in designing formal intervention trials to provide more effective help for spouse caregivers.</div>
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<name sortKey="Archbold, P G" sort="Archbold, P G" uniqKey="Archbold P" first="P G" last="Archbold">P G Archbold</name>
<name sortKey="Barter, R" sort="Barter, R" uniqKey="Barter R" first="R" last="Barter">R. Barter</name>
<name sortKey="Cornelius, L" sort="Cornelius, L" uniqKey="Cornelius L" first="L" last="Cornelius">L. Cornelius</name>
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<name sortKey="Duff, J" sort="Duff, J" uniqKey="Duff J" first="J" last="Duff">J. Duff</name>
<name sortKey="Erickson, J" sort="Erickson, J" uniqKey="Erickson J" first="J" last="Erickson">J. Erickson</name>
<name sortKey="Gardiner, N" sort="Gardiner, N" uniqKey="Gardiner N" first="N" last="Gardiner">N. Gardiner</name>
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<name sortKey="Gray, P" sort="Gray, P" uniqKey="Gray P" first="P" last="Gray">P. Gray</name>
<name sortKey="Inoue, I" sort="Inoue, I" uniqKey="Inoue I" first="I" last="Inoue">I. Inoue</name>
<name sortKey="Jaglin, J" sort="Jaglin, J" uniqKey="Jaglin J" first="J" last="Jaglin">J. Jaglin</name>
<name sortKey="Kanigan, B" sort="Kanigan, B" uniqKey="Kanigan B" first="B" last="Kanigan">B. Kanigan</name>
<name sortKey="Kiryluk, B" sort="Kiryluk, B" uniqKey="Kiryluk B" first="B" last="Kiryluk">B. Kiryluk</name>
<name sortKey="Lannon, M" sort="Lannon, M" uniqKey="Lannon M" first="M" last="Lannon">M. Lannon</name>
<name sortKey="Lewis, P" sort="Lewis, P" uniqKey="Lewis P" first="P" last="Lewis">P. Lewis</name>
<name sortKey="Malapira, T" sort="Malapira, T" uniqKey="Malapira T" first="T" last="Malapira">T. Malapira</name>
<name sortKey="Mcdermott, M P" sort="Mcdermott, M P" uniqKey="Mcdermott M" first="M P" last="Mcdermott">M P Mcdermott</name>
<name sortKey="Mistura, K" sort="Mistura, K" uniqKey="Mistura K" first="K" last="Mistura">K. Mistura</name>
<name sortKey="Rost Ruffner, E" sort="Rost Ruffner, E" uniqKey="Rost Ruffner E" first="E" last="Rost-Ruffner">E. Rost-Ruffner</name>
<name sortKey="Stewart, B J" sort="Stewart, B J" uniqKey="Stewart B" first="B J" last="Stewart">B J Stewart</name>
<name sortKey="Tennis, M" sort="Tennis, M" uniqKey="Tennis M" first="M" last="Tennis">M. Tennis</name>
<name sortKey="Zoog, K" sort="Zoog, K" uniqKey="Zoog K" first="K" last="Zoog">K. Zoog</name>
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<country name="États-Unis">
<region name="Oregon">
<name sortKey="Carter, J H" sort="Carter, J H" uniqKey="Carter J" first="J H" last="Carter">J H Carter</name>
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