Living with a person who has parkinson's disease: The Spouse's perspective by stage of disease
Identifieur interne : 000062 ( Main/Corpus ); précédent : 000061; suivant : 000063Living with a person who has parkinson's disease: The Spouse's perspective by stage of disease
Auteurs : Julie H. Carter ; Barbara J. Stewart ; Patricia G. Archbold ; Iku Inoue ; Jeana Jaglin ; Meg Lannon ; Elke Rost-Ruffner ; Marsha Tennis ; Michael P. Mcdermott ; Donna Amyot ; Ruth Barter ; Lisa Cornelius ; Carol Demong ; Judith Dobson ; Jan Duff ; Judi Erickson ; Nita Gardiner ; Lisa Gauger ; Peggy Gray ; Bernice Kanigan ; Barbara Kiryluk ; Paula Lewis ; Kathie Mistura ; Teri Malapira ; Mary Pay ; Carol Sheldon ; Linda Winfield ; Kathy Wolfington-Shallow ; Kim ZoogSource :
- Movement Disorders [ 0885-3185 ] ; 1998-01.
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.
Url:
DOI: 10.1002/mds.870130108
Links to Exploration step
ISTEX:14FDC4D2301D29DFA44FF2248B14AE4E90C3B27ELe document en format XML
<record><TEI wicri:istexFullTextTei="biblStruct"><teiHeader><fileDesc><titleStmt><title xml:lang="en">Living with a person who has parkinson's disease: The Spouse's perspective by stage of disease</title><author><name sortKey="Carter, Julie H" sort="Carter, Julie H" uniqKey="Carter J" first="Julie H." last="Carter">Julie H. Carter</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Department of Neurology, Oregon Health Sciences University, Portland, OR</mods:affiliation></affiliation><affiliation><mods:affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</mods:affiliation></affiliation></author><author><name sortKey="Stewart, Barbara J" sort="Stewart, Barbara J" uniqKey="Stewart B" first="Barbara J." last="Stewart">Barbara J. Stewart</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</mods:affiliation></affiliation></author><author><name sortKey="Archbold, Patricia G" sort="Archbold, Patricia G" uniqKey="Archbold P" first="Patricia G." last="Archbold">Patricia G. Archbold</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</mods:affiliation></affiliation></author><author><name sortKey="Inoue, Iku" sort="Inoue, Iku" uniqKey="Inoue I" first="Iku" last="Inoue">Iku Inoue</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</mods:affiliation></affiliation></author><author><name sortKey="Jaglin, Jeana" sort="Jaglin, Jeana" uniqKey="Jaglin J" first="Jeana" last="Jaglin">Jeana Jaglin</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Rush‐Presbyterian/St. Luke's Medical Center, Chicago, IL</mods:affiliation></affiliation></author><author><name sortKey="Lannon, Meg" sort="Lannon, Meg" uniqKey="Lannon M" first="Meg" last="Lannon">Meg Lannon</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Brown University, Providence, RI</mods:affiliation></affiliation></author><author><name sortKey="Rost Uffner, Elke" sort="Rost Uffner, Elke" uniqKey="Rost Uffner E" first="Elke" last="Rost-Ruffner">Elke Rost-Ruffner</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Virginia, Charlottesville, VA</mods:affiliation></affiliation></author><author><name sortKey="Tennis, Marsha" sort="Tennis, Marsha" uniqKey="Tennis M" first="Marsha" last="Tennis">Marsha Tennis</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Massachusetts General Hospital, Boston, MA</mods:affiliation></affiliation></author><author><name sortKey="Mcdermott, Michael P" sort="Mcdermott, Michael P" uniqKey="Mcdermott M" first="Michael P." last="Mcdermott">Michael P. Mcdermott</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Rochester, Rochester, NY</mods:affiliation></affiliation></author><author><name sortKey="Amyot, Donna" sort="Amyot, Donna" uniqKey="Amyot D" first="Donna" last="Amyot">Donna Amyot</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: McGill University, Montreal, PQ</mods:affiliation></affiliation></author><author><name sortKey="Barter, Ruth" sort="Barter, Ruth" uniqKey="Barter R" first="Ruth" last="Barter">Ruth Barter</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Kansas, KS</mods:affiliation></affiliation></author><author><name sortKey="Cornelius, Lisa" sort="Cornelius, Lisa" uniqKey="Cornelius L" first="Lisa" last="Cornelius">Lisa Cornelius</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Miami, Miami, FL</mods:affiliation></affiliation></author><author><name sortKey="Demong, Carol" sort="Demong, Carol" uniqKey="Demong C" first="Carol" last="Demong">Carol Demong</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Calgary Medical Clinic, Calgary, AB</mods:affiliation></affiliation></author><author><name sortKey="Dobson, Judith" sort="Dobson, Judith" uniqKey="Dobson J" first="Judith" last="Dobson">Judith Dobson</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Iowa, Iowa City, IA</mods:affiliation></affiliation></author><author><name sortKey="Duff, Jan" sort="Duff, Jan" uniqKey="Duff J" first="Jan" last="Duff">Jan Duff</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Toronto Western Hospital, Toronto, ON</mods:affiliation></affiliation></author><author><name sortKey="Erickson, Judi" sort="Erickson, Judi" uniqKey="Erickson J" first="Judi" last="Erickson">Judi Erickson</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Nebraska Medical Center, Omaha, NE</mods:affiliation></affiliation></author><author><name sortKey="Gardiner, Nita" sort="Gardiner, Nita" uniqKey="Gardiner N" first="Nita" last="Gardiner">Nita Gardiner</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Rochester, Rochester, NY</mods:affiliation></affiliation></author><author><name sortKey="Gauger, Lisa" sort="Gauger, Lisa" uniqKey="Gauger L" first="Lisa" last="Gauger">Lisa Gauger</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of South Florida, Tampa, FL</mods:affiliation></affiliation></author><author><name sortKey="Gray, Peggy" sort="Gray, Peggy" uniqKey="Gray P" first="Peggy" last="Gray">Peggy Gray</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Ottawa Civic Hospital, Ottawa, ON</mods:affiliation></affiliation></author><author><name sortKey="Kanigan, Bernice" sort="Kanigan, Bernice" uniqKey="Kanigan B" first="Bernice" last="Kanigan">Bernice Kanigan</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Saskatchewan, Saskatoon, SK</mods:affiliation></affiliation></author><author><name sortKey="Kiryluk, Barbara" sort="Kiryluk, Barbara" uniqKey="Kiryluk B" first="Barbara" last="Kiryluk">Barbara Kiryluk</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: St. Luke's Hospital, Denver, CO</mods:affiliation></affiliation></author><author><name sortKey="Lewis, Paula" sort="Lewis, Paula" uniqKey="Lewis P" first="Paula" last="Lewis">Paula Lewis</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: California Parkinson's Foundation, Sunnyvale, CA</mods:affiliation></affiliation></author><author><name sortKey="Mistura, Kathie" sort="Mistura, Kathie" uniqKey="Mistura K" first="Kathie" last="Mistura">Kathie Mistura</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Sinai Hospital of Detroit, Detroit, MI</mods:affiliation></affiliation></author><author><name sortKey="Malapira, Teri" sort="Malapira, Teri" uniqKey="Malapira T" first="Teri" last="Malapira">Teri Malapira</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of South Florida, Tampa, FL</mods:affiliation></affiliation></author><author><name sortKey="Pay, Mary" sort="Pay, Mary" uniqKey="Pay M" first="Mary" last="Pay">Mary Pay</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of California at San Diego, San Diego, CA</mods:affiliation></affiliation></author><author><name sortKey="Sheldon, Carol" sort="Sheldon, Carol" uniqKey="Sheldon C" first="Carol" last="Sheldon">Carol Sheldon</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Miami, Miami, FL</mods:affiliation></affiliation></author><author><name sortKey="Winfield, Linda" sort="Winfield, Linda" uniqKey="Winfield L" first="Linda" last="Winfield">Linda Winfield</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Columbia University, New York, NY</mods:affiliation></affiliation></author><author><name sortKey="Wolfington Hallow, Kathy" sort="Wolfington Hallow, Kathy" uniqKey="Wolfington Hallow K" first="Kathy" last="Wolfington-Shallow">Kathy Wolfington-Shallow</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Pennsylvania, Philadelphia, PA</mods:affiliation></affiliation></author><author><name sortKey="Zoog, Kim" sort="Zoog, Kim" uniqKey="Zoog K" first="Kim" last="Zoog">Kim Zoog</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Ohio State University, Columbus, OH</mods:affiliation></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">ISTEX</idno><idno type="RBID">ISTEX:14FDC4D2301D29DFA44FF2248B14AE4E90C3B27E</idno><date when="1998" year="1998">1998</date><idno type="doi">10.1002/mds.870130108</idno><idno type="url">https://api.istex.fr/document/14FDC4D2301D29DFA44FF2248B14AE4E90C3B27E/fulltext/pdf</idno><idno type="wicri:Area/Main/Corpus">000062</idno></publicationStmt><sourceDesc><biblStruct><analytic><title level="a" type="main" xml:lang="en">Living with a person who has parkinson's disease: The Spouse's perspective by stage of disease</title><author><name sortKey="Carter, Julie H" sort="Carter, Julie H" uniqKey="Carter J" first="Julie H." last="Carter">Julie H. Carter</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Department of Neurology, Oregon Health Sciences University, Portland, OR</mods:affiliation></affiliation><affiliation><mods:affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</mods:affiliation></affiliation></author><author><name sortKey="Stewart, Barbara J" sort="Stewart, Barbara J" uniqKey="Stewart B" first="Barbara J." last="Stewart">Barbara J. Stewart</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</mods:affiliation></affiliation></author><author><name sortKey="Archbold, Patricia G" sort="Archbold, Patricia G" uniqKey="Archbold P" first="Patricia G." last="Archbold">Patricia G. Archbold</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</mods:affiliation></affiliation></author><author><name sortKey="Inoue, Iku" sort="Inoue, Iku" uniqKey="Inoue I" first="Iku" last="Inoue">Iku Inoue</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</mods:affiliation></affiliation></author><author><name sortKey="Jaglin, Jeana" sort="Jaglin, Jeana" uniqKey="Jaglin J" first="Jeana" last="Jaglin">Jeana Jaglin</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Rush‐Presbyterian/St. Luke's Medical Center, Chicago, IL</mods:affiliation></affiliation></author><author><name sortKey="Lannon, Meg" sort="Lannon, Meg" uniqKey="Lannon M" first="Meg" last="Lannon">Meg Lannon</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Brown University, Providence, RI</mods:affiliation></affiliation></author><author><name sortKey="Rost Uffner, Elke" sort="Rost Uffner, Elke" uniqKey="Rost Uffner E" first="Elke" last="Rost-Ruffner">Elke Rost-Ruffner</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Virginia, Charlottesville, VA</mods:affiliation></affiliation></author><author><name sortKey="Tennis, Marsha" sort="Tennis, Marsha" uniqKey="Tennis M" first="Marsha" last="Tennis">Marsha Tennis</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Massachusetts General Hospital, Boston, MA</mods:affiliation></affiliation></author><author><name sortKey="Mcdermott, Michael P" sort="Mcdermott, Michael P" uniqKey="Mcdermott M" first="Michael P." last="Mcdermott">Michael P. Mcdermott</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Rochester, Rochester, NY</mods:affiliation></affiliation></author><author><name sortKey="Amyot, Donna" sort="Amyot, Donna" uniqKey="Amyot D" first="Donna" last="Amyot">Donna Amyot</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: McGill University, Montreal, PQ</mods:affiliation></affiliation></author><author><name sortKey="Barter, Ruth" sort="Barter, Ruth" uniqKey="Barter R" first="Ruth" last="Barter">Ruth Barter</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Kansas, KS</mods:affiliation></affiliation></author><author><name sortKey="Cornelius, Lisa" sort="Cornelius, Lisa" uniqKey="Cornelius L" first="Lisa" last="Cornelius">Lisa Cornelius</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Miami, Miami, FL</mods:affiliation></affiliation></author><author><name sortKey="Demong, Carol" sort="Demong, Carol" uniqKey="Demong C" first="Carol" last="Demong">Carol Demong</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Calgary Medical Clinic, Calgary, AB</mods:affiliation></affiliation></author><author><name sortKey="Dobson, Judith" sort="Dobson, Judith" uniqKey="Dobson J" first="Judith" last="Dobson">Judith Dobson</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Iowa, Iowa City, IA</mods:affiliation></affiliation></author><author><name sortKey="Duff, Jan" sort="Duff, Jan" uniqKey="Duff J" first="Jan" last="Duff">Jan Duff</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Toronto Western Hospital, Toronto, ON</mods:affiliation></affiliation></author><author><name sortKey="Erickson, Judi" sort="Erickson, Judi" uniqKey="Erickson J" first="Judi" last="Erickson">Judi Erickson</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Nebraska Medical Center, Omaha, NE</mods:affiliation></affiliation></author><author><name sortKey="Gardiner, Nita" sort="Gardiner, Nita" uniqKey="Gardiner N" first="Nita" last="Gardiner">Nita Gardiner</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Rochester, Rochester, NY</mods:affiliation></affiliation></author><author><name sortKey="Gauger, Lisa" sort="Gauger, Lisa" uniqKey="Gauger L" first="Lisa" last="Gauger">Lisa Gauger</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of South Florida, Tampa, FL</mods:affiliation></affiliation></author><author><name sortKey="Gray, Peggy" sort="Gray, Peggy" uniqKey="Gray P" first="Peggy" last="Gray">Peggy Gray</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Ottawa Civic Hospital, Ottawa, ON</mods:affiliation></affiliation></author><author><name sortKey="Kanigan, Bernice" sort="Kanigan, Bernice" uniqKey="Kanigan B" first="Bernice" last="Kanigan">Bernice Kanigan</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Saskatchewan, Saskatoon, SK</mods:affiliation></affiliation></author><author><name sortKey="Kiryluk, Barbara" sort="Kiryluk, Barbara" uniqKey="Kiryluk B" first="Barbara" last="Kiryluk">Barbara Kiryluk</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: St. Luke's Hospital, Denver, CO</mods:affiliation></affiliation></author><author><name sortKey="Lewis, Paula" sort="Lewis, Paula" uniqKey="Lewis P" first="Paula" last="Lewis">Paula Lewis</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: California Parkinson's Foundation, Sunnyvale, CA</mods:affiliation></affiliation></author><author><name sortKey="Mistura, Kathie" sort="Mistura, Kathie" uniqKey="Mistura K" first="Kathie" last="Mistura">Kathie Mistura</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Sinai Hospital of Detroit, Detroit, MI</mods:affiliation></affiliation></author><author><name sortKey="Malapira, Teri" sort="Malapira, Teri" uniqKey="Malapira T" first="Teri" last="Malapira">Teri Malapira</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of South Florida, Tampa, FL</mods:affiliation></affiliation></author><author><name sortKey="Pay, Mary" sort="Pay, Mary" uniqKey="Pay M" first="Mary" last="Pay">Mary Pay</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of California at San Diego, San Diego, CA</mods:affiliation></affiliation></author><author><name sortKey="Sheldon, Carol" sort="Sheldon, Carol" uniqKey="Sheldon C" first="Carol" last="Sheldon">Carol Sheldon</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Miami, Miami, FL</mods:affiliation></affiliation></author><author><name sortKey="Winfield, Linda" sort="Winfield, Linda" uniqKey="Winfield L" first="Linda" last="Winfield">Linda Winfield</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Columbia University, New York, NY</mods:affiliation></affiliation></author><author><name sortKey="Wolfington Hallow, Kathy" sort="Wolfington Hallow, Kathy" uniqKey="Wolfington Hallow K" first="Kathy" last="Wolfington-Shallow">Kathy Wolfington-Shallow</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: University of Pennsylvania, Philadelphia, PA</mods:affiliation></affiliation></author><author><name sortKey="Zoog, Kim" sort="Zoog, Kim" uniqKey="Zoog K" first="Kim" last="Zoog">Kim Zoog</name><affiliation><mods:affiliation>Members of the Parkinson Study Group: Ohio State University, Columbus, OH</mods:affiliation></affiliation></author></analytic><monogr></monogr><series><title level="j">Movement Disorders</title><title level="j" type="sub">Official Journal of the Movement Disorder Society</title><title level="j" type="abbrev">Mov. Disord.</title><idno type="ISSN">0885-3185</idno><idno type="eISSN">1531-8257</idno><imprint><publisher>Wiley Subscription Services, Inc., A Wiley Company</publisher><pubPlace>Hoboken</pubPlace><date type="published" when="1998-01">1998-01</date><biblScope unit="volume">13</biblScope><biblScope unit="issue">1</biblScope><biblScope unit="page" from="20">20</biblScope><biblScope unit="page" to="28">28</biblScope></imprint><idno type="ISSN">0885-3185</idno></series><idno type="istex">14FDC4D2301D29DFA44FF2248B14AE4E90C3B27E</idno><idno type="DOI">10.1002/mds.870130108</idno><idno type="ArticleID">MDS870130108</idno></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">0885-3185</idno></seriesStmt></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Caregiver strain</term><term>Parkinson's disease</term><term>Spousal caregiving</term></keywords></textClass><langUsage><language ident="en">en</language></langUsage></profileDesc></teiHeader><front><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></front></TEI><istex><corpusName>wiley</corpusName><author><json:item><name>Julie H. Carter</name><affiliations><json:string>Members of the Parkinson Study Group: Department of Neurology, Oregon Health Sciences University, Portland, OR</json:string><json:string>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</json:string></affiliations></json:item><json:item><name>Barbara J. Stewart</name><affiliations><json:string>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</json:string></affiliations></json:item><json:item><name>Patricia G. Archbold</name><affiliations><json:string>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</json:string></affiliations></json:item><json:item><name>Iku Inoue</name><affiliations><json:string>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</json:string></affiliations></json:item><json:item><name>Jeana Jaglin</name><affiliations><json:string>Members of the Parkinson Study Group: Rush‐Presbyterian/St. Luke's Medical Center, Chicago, IL</json:string></affiliations></json:item><json:item><name>Meg Lannon</name><affiliations><json:string>Members of the Parkinson Study Group: Brown University, Providence, RI</json:string></affiliations></json:item><json:item><name>Elke Rost‐Ruffner</name><affiliations><json:string>Members of the Parkinson Study Group: University of Virginia, Charlottesville, VA</json:string></affiliations></json:item><json:item><name>Marsha Tennis</name><affiliations><json:string>Members of the Parkinson Study Group: Massachusetts General Hospital, Boston, MA</json:string></affiliations></json:item><json:item><name>Michael P. McDermott</name><affiliations><json:string>Members of the Parkinson Study Group: University of Rochester, Rochester, NY</json:string></affiliations></json:item><json:item><name>Donna Amyot</name><affiliations><json:string>Members of the Parkinson Study Group: McGill University, Montreal, PQ</json:string></affiliations></json:item><json:item><name>Ruth Barter</name><affiliations><json:string>Members of the Parkinson Study Group: University of Kansas, KS</json:string></affiliations></json:item><json:item><name>Lisa Cornelius</name><affiliations><json:string>Members of the Parkinson Study Group: University of Miami, Miami, FL</json:string></affiliations></json:item><json:item><name>Carol Demong</name><affiliations><json:string>Members of the Parkinson Study Group: University of Calgary Medical Clinic, Calgary, AB</json:string></affiliations></json:item><json:item><name>Judith Dobson</name><affiliations><json:string>Members of the Parkinson Study Group: University of Iowa, Iowa City, IA</json:string></affiliations></json:item><json:item><name>Jan Duff</name><affiliations><json:string>Members of the Parkinson Study Group: Toronto Western Hospital, Toronto, ON</json:string></affiliations></json:item><json:item><name>Judi Erickson</name><affiliations><json:string>Members of the Parkinson Study Group: University of Nebraska Medical Center, Omaha, NE</json:string></affiliations></json:item><json:item><name>Nita Gardiner</name><affiliations><json:string>Members of the Parkinson Study Group: University of Rochester, Rochester, NY</json:string></affiliations></json:item><json:item><name>Lisa Gauger</name><affiliations><json:string>Members of the Parkinson Study Group: University of South Florida, Tampa, FL</json:string></affiliations></json:item><json:item><name>Peggy Gray</name><affiliations><json:string>Members of the Parkinson Study Group: Ottawa Civic Hospital, Ottawa, ON</json:string></affiliations></json:item><json:item><name>Bernice Kanigan</name><affiliations><json:string>Members of the Parkinson Study Group: University of Saskatchewan, Saskatoon, SK</json:string></affiliations></json:item><json:item><name>Barbara Kiryluk</name><affiliations><json:string>Members of the Parkinson Study Group: St. Luke's Hospital, Denver, CO</json:string></affiliations></json:item><json:item><name>Paula Lewis</name><affiliations><json:string>Members of the Parkinson Study Group: California Parkinson's Foundation, Sunnyvale, CA</json:string></affiliations></json:item><json:item><name>Kathie Mistura</name><affiliations><json:string>Members of the Parkinson Study Group: Sinai Hospital of Detroit, Detroit, MI</json:string></affiliations></json:item><json:item><name>Teri Malapira</name><affiliations><json:string>Members of the Parkinson Study Group: University of South Florida, Tampa, FL</json:string></affiliations></json:item><json:item><name>Mary Pay</name><affiliations><json:string>Members of the Parkinson Study Group: University of California at San Diego, San Diego, CA</json:string></affiliations></json:item><json:item><name>Carol Sheldon</name><affiliations><json:string>Members of the Parkinson Study Group: University of Miami, Miami, FL</json:string></affiliations></json:item><json:item><name>Linda Winfield</name><affiliations><json:string>Members of the Parkinson Study Group: Columbia University, New York, NY</json:string></affiliations></json:item><json:item><name>Kathy Wolfington‐Shallow</name><affiliations><json:string>Members of the Parkinson Study Group: University of Pennsylvania, Philadelphia, PA</json:string></affiliations></json:item><json:item><name>Kim Zoog</name><affiliations><json:string>Members of the Parkinson Study Group: Ohio State University, Columbus, OH</json:string></affiliations></json:item></author><subject><json:item><lang><json:string>eng</json:string></lang><value>Spousal caregiving</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>Caregiver strain</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>Parkinson's disease</value></json:item></subject><articleId><json:string>MDS870130108</json:string></articleId><language><json:string>eng</json:string></language><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.</abstract><qualityIndicators><score>7.7</score><pdfVersion>1.3</pdfVersion><pdfPageSize>612 x 792 pts (letter)</pdfPageSize><refBibsNative>true</refBibsNative><keywordCount>3</keywordCount><abstractCharCount>1552</abstractCharCount><pdfWordCount>5237</pdfWordCount><pdfCharCount>32640</pdfCharCount><pdfPageCount>9</pdfPageCount><abstractWordCount>225</abstractWordCount></qualityIndicators><title>Living with a person who has parkinson's disease: The Spouse's perspective by stage of disease</title><genre><json:string>article</json:string></genre><host><volume>13</volume><publisherId><json:string>MDS</json:string></publisherId><pages><total>9</total><last>28</last><first>20</first></pages><issn><json:string>0885-3185</json:string></issn><issue>1</issue><subject><json:item><value>Article</value></json:item></subject><genre><json:string>Journal</json:string></genre><language><json:string>unknown</json:string></language><eissn><json:string>1531-8257</json:string></eissn><title>Movement Disorders</title><doi><json:string>10.1002/(ISSN)1531-8257</json:string></doi></host><publicationDate>1998</publicationDate><copyrightDate>1998</copyrightDate><doi><json:string>10.1002/mds.870130108</json:string></doi><id>14FDC4D2301D29DFA44FF2248B14AE4E90C3B27E</id><fulltext><json:item><original>true</original><mimetype>application/pdf</mimetype><extension>pdf</extension><uri>https://api.istex.fr/document/14FDC4D2301D29DFA44FF2248B14AE4E90C3B27E/fulltext/pdf</uri></json:item><json:item><original>false</original><mimetype>application/zip</mimetype><extension>zip</extension><uri>https://api.istex.fr/document/14FDC4D2301D29DFA44FF2248B14AE4E90C3B27E/fulltext/zip</uri></json:item><istex:fulltextTEI uri="https://api.istex.fr/document/14FDC4D2301D29DFA44FF2248B14AE4E90C3B27E/fulltext/tei"><teiHeader><fileDesc><titleStmt><title level="a" type="main" xml:lang="en">Living with a person who has parkinson's disease: The Spouse's perspective by stage of disease</title></titleStmt><publicationStmt><authority>ISTEX</authority><publisher>Wiley Subscription Services, Inc., A Wiley Company</publisher><pubPlace>Hoboken</pubPlace><availability><p>WILEY</p></availability><date>1998</date></publicationStmt><sourceDesc><biblStruct type="inbook"><analytic><title level="a" type="main" xml:lang="en">Living with a person who has parkinson's disease: The Spouse's perspective by stage of disease</title><author><persName><forename type="first">Julie H.</forename><surname>Carter</surname></persName><note type="correspondence"><p>Correspondence: Oregon Health Sciences University, L‐226, 3181 SW Sam Jackson Park Road, Portland, OR 97201‐3098, U.S.A</p></note><affiliation>Members of the Parkinson Study Group: Department of Neurology, Oregon Health Sciences University, Portland, OR</affiliation><affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</affiliation></author><author><persName><forename type="first">Barbara J.</forename><surname>Stewart</surname></persName><affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</affiliation></author><author><persName><forename type="first">Patricia G.</forename><surname>Archbold</surname></persName><affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</affiliation></author><author><persName><forename type="first">Iku</forename><surname>Inoue</surname></persName><affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</affiliation></author><author><persName><forename type="first">Jeana</forename><surname>Jaglin</surname></persName><affiliation>Members of the Parkinson Study Group: Rush‐Presbyterian/St. Luke's Medical Center, Chicago, IL</affiliation></author><author><persName><forename type="first">Meg</forename><surname>Lannon</surname></persName><affiliation>Members of the Parkinson Study Group: Brown University, Providence, RI</affiliation></author><author><persName><forename type="first">Elke</forename><surname>Rost‐Ruffner</surname></persName><affiliation>Members of the Parkinson Study Group: University of Virginia, Charlottesville, VA</affiliation></author><author><persName><forename type="first">Marsha</forename><surname>Tennis</surname></persName><affiliation>Members of the Parkinson Study Group: Massachusetts General Hospital, Boston, MA</affiliation></author><author><persName><forename type="first">Michael P.</forename><surname>McDermott</surname></persName><affiliation>Members of the Parkinson Study Group: University of Rochester, Rochester, NY</affiliation></author><author><persName><forename type="first">Donna</forename><surname>Amyot</surname></persName><affiliation>Members of the Parkinson Study Group: McGill University, Montreal, PQ</affiliation></author><author><persName><forename type="first">Ruth</forename><surname>Barter</surname></persName><affiliation>Members of the Parkinson Study Group: University of Kansas, KS</affiliation></author><author><persName><forename type="first">Lisa</forename><surname>Cornelius</surname></persName><affiliation>Members of the Parkinson Study Group: University of Miami, Miami, FL</affiliation></author><author><persName><forename type="first">Carol</forename><surname>Demong</surname></persName><affiliation>Members of the Parkinson Study Group: University of Calgary Medical Clinic, Calgary, AB</affiliation></author><author><persName><forename type="first">Judith</forename><surname>Dobson</surname></persName><affiliation>Members of the Parkinson Study Group: University of Iowa, Iowa City, IA</affiliation></author><author><persName><forename type="first">Jan</forename><surname>Duff</surname></persName><affiliation>Members of the Parkinson Study Group: Toronto Western Hospital, Toronto, ON</affiliation></author><author><persName><forename type="first">Judi</forename><surname>Erickson</surname></persName><affiliation>Members of the Parkinson Study Group: University of Nebraska Medical Center, Omaha, NE</affiliation></author><author><persName><forename type="first">Nita</forename><surname>Gardiner</surname></persName><affiliation>Members of the Parkinson Study Group: University of Rochester, Rochester, NY</affiliation></author><author><persName><forename type="first">Lisa</forename><surname>Gauger</surname></persName><affiliation>Members of the Parkinson Study Group: University of South Florida, Tampa, FL</affiliation></author><author><persName><forename type="first">Peggy</forename><surname>Gray</surname></persName><affiliation>Members of the Parkinson Study Group: Ottawa Civic Hospital, Ottawa, ON</affiliation></author><author><persName><forename type="first">Bernice</forename><surname>Kanigan</surname></persName><affiliation>Members of the Parkinson Study Group: University of Saskatchewan, Saskatoon, SK</affiliation></author><author><persName><forename type="first">Barbara</forename><surname>Kiryluk</surname></persName><affiliation>Members of the Parkinson Study Group: St. Luke's Hospital, Denver, CO</affiliation></author><author><persName><forename type="first">Paula</forename><surname>Lewis</surname></persName><affiliation>Members of the Parkinson Study Group: California Parkinson's Foundation, Sunnyvale, CA</affiliation></author><author><persName><forename type="first">Kathie</forename><surname>Mistura</surname></persName><affiliation>Members of the Parkinson Study Group: Sinai Hospital of Detroit, Detroit, MI</affiliation></author><author><persName><forename type="first">Teri</forename><surname>Malapira</surname></persName><affiliation>Members of the Parkinson Study Group: University of South Florida, Tampa, FL</affiliation></author><author><persName><forename type="first">Mary</forename><surname>Pay</surname></persName><affiliation>Members of the Parkinson Study Group: University of California at San Diego, San Diego, CA</affiliation></author><author><persName><forename type="first">Carol</forename><surname>Sheldon</surname></persName><affiliation>Members of the Parkinson Study Group: University of Miami, Miami, FL</affiliation></author><author><persName><forename type="first">Linda</forename><surname>Winfield</surname></persName><affiliation>Members of the Parkinson Study Group: Columbia University, New York, NY</affiliation></author><author><persName><forename type="first">Kathy</forename><surname>Wolfington‐Shallow</surname></persName><affiliation>Members of the Parkinson Study Group: University of Pennsylvania, Philadelphia, PA</affiliation></author><author><persName><forename type="first">Kim</forename><surname>Zoog</surname></persName><affiliation>Members of the Parkinson Study Group: Ohio State University, Columbus, OH</affiliation></author></analytic><monogr><title level="j">Movement Disorders</title><title level="j" type="sub">Official Journal of the Movement Disorder Society</title><title level="j" type="abbrev">Mov. Disord.</title><idno type="pISSN">0885-3185</idno><idno type="eISSN">1531-8257</idno><idno type="DOI">10.1002/(ISSN)1531-8257</idno><imprint><publisher>Wiley Subscription Services, Inc., A Wiley Company</publisher><pubPlace>Hoboken</pubPlace><date type="published" when="1998-01"></date><biblScope unit="volume">13</biblScope><biblScope unit="issue">1</biblScope><biblScope unit="page" from="20">20</biblScope><biblScope unit="page" to="28">28</biblScope></imprint></monogr><idno type="istex">14FDC4D2301D29DFA44FF2248B14AE4E90C3B27E</idno><idno type="DOI">10.1002/mds.870130108</idno><idno type="ArticleID">MDS870130108</idno></biblStruct></sourceDesc></fileDesc><profileDesc><creation><date>1998</date></creation><langUsage><language ident="en">en</language></langUsage><abstract xml:lang="en"><p>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.</p></abstract><textClass xml:lang="en"><keywords scheme="keyword"><list><head>Keywords</head><item><term>Spousal caregiving</term></item><item><term>Caregiver strain</term></item><item><term>Parkinson's disease</term></item></list></keywords></textClass><textClass><keywords scheme="Journal Subject"><list><head>article category</head><item><term>Article</term></item></list></keywords></textClass></profileDesc><revisionDesc><change when="1996-09-23">Received</change><change when="1997-06-18">Registration</change><change when="1998-01">Published</change></revisionDesc></teiHeader></istex:fulltextTEI><json:item><original>false</original><mimetype>text/plain</mimetype><extension>txt</extension><uri>https://api.istex.fr/document/14FDC4D2301D29DFA44FF2248B14AE4E90C3B27E/fulltext/txt</uri></json:item></fulltext><metadata><istex:metadataXml wicri:clean="Wiley, elements deleted: body"><istex:xmlDeclaration>version="1.0" encoding="UTF-8" standalone="yes"</istex:xmlDeclaration><istex:document><component version="2.0" type="serialArticle" xml:lang="en"><header><publicationMeta level="product"><publisherInfo><publisherName>Wiley Subscription Services, Inc., A Wiley Company</publisherName><publisherLoc>Hoboken</publisherLoc></publisherInfo><doi registered="yes">10.1002/(ISSN)1531-8257</doi><issn type="print">0885-3185</issn><issn type="electronic">1531-8257</issn><idGroup><id type="product" value="MDS"></id></idGroup><titleGroup><title type="main" xml:lang="en" sort="MOVEMENT DISORDERS">Movement Disorders</title><title type="tocForm">Movement Disorders</title><title type="subtitle">Official Journal of the Movement Disorder Society</title><title type="short">Mov. Disord.</title></titleGroup></publicationMeta><publicationMeta level="part" position="10"><doi origin="wiley" registered="yes">10.1002/mds.v13:1</doi><numberingGroup><numbering type="journalVolume" number="13">13</numbering><numbering type="journalIssue">1</numbering></numberingGroup><coverDate startDate="1998-01">January 1998</coverDate></publicationMeta><publicationMeta level="unit" type="article" position="8" status="forIssue"><doi origin="wiley" registered="yes">10.1002/mds.870130108</doi><idGroup><id type="unit" value="MDS870130108"></id></idGroup><countGroup><count type="pageTotal" number="9"></count></countGroup><titleGroup><title type="articleCategory">Article</title><title type="tocHeading1">Articles</title></titleGroup><copyright ownership="thirdParty">Copyright © 1998 Movement Disorder Society</copyright><eventGroup><event type="manuscriptReceived" date="1996-09-23"></event><event type="manuscriptRevised" date="1997-04-29"></event><event type="manuscriptAccepted" date="1997-06-18"></event><event type="firstOnline" date="2004-11-04"></event><event type="publishedOnlineFinalForm" date="2004-11-04"></event><event type="xmlConverted" agent="Converter:JWSART34_TO_WML3G version:2.3.2 mode:FullText source:HeaderRef result:HeaderRef" date="2010-03-09"></event><event type="xmlConverted" agent="Converter:WILEY_ML3G_TO_WILEY_ML3GV2 version:3.8.8" date="2014-02-02"></event><event type="xmlConverted" agent="Converter:WML3G_To_WML3G version:4.1.7 mode:FullText,remove_FC" date="2014-10-31"></event></eventGroup><numberingGroup><numbering type="pageFirst">20</numbering><numbering type="pageLast">28</numbering></numberingGroup><correspondenceTo>Oregon Health Sciences University, L‐226, 3181 SW Sam Jackson Park Road, Portland, OR 97201‐3098, U.S.A</correspondenceTo><linkGroup><link type="toTypesetVersion" href="file:MDS.MDS870130108.pdf"></link></linkGroup></publicationMeta><contentMeta><countGroup><count type="figureTotal" number="1"></count><count type="tableTotal" number="6"></count><count type="referenceTotal" number="24"></count></countGroup><titleGroup><title type="main" xml:lang="en">Living with a person who has parkinson's disease: The Spouse's perspective by stage of disease</title><title type="short" xml:lang="en">PARKINSON'S DISEASE: THE SPOUSE'S PERSPECTIVE</title></titleGroup><creators><creator xml:id="au1" creatorRole="author" affiliationRef="#af1 #af2" corresponding="yes"><personName><givenNames>Julie H.</givenNames><familyName>Carter</familyName></personName></creator><creator xml:id="au2" creatorRole="author" affiliationRef="#af2"><personName><givenNames>Barbara J.</givenNames><familyName>Stewart</familyName></personName></creator><creator xml:id="au3" creatorRole="author" affiliationRef="#af2"><personName><givenNames>Patricia G.</givenNames><familyName>Archbold</familyName></personName></creator><creator xml:id="au4" creatorRole="author" affiliationRef="#af2"><personName><givenNames>Iku</givenNames><familyName>Inoue</familyName></personName></creator><creator xml:id="au5" creatorRole="author" affiliationRef="#af3"><personName><givenNames>Jeana</givenNames><familyName>Jaglin</familyName></personName></creator><creator xml:id="au6" creatorRole="author" affiliationRef="#af4"><personName><givenNames>Meg</givenNames><familyName>Lannon</familyName></personName></creator><creator xml:id="au7" creatorRole="author" affiliationRef="#af5"><personName><givenNames>Elke</givenNames><familyName>Rost‐Ruffner</familyName></personName></creator><creator xml:id="au8" creatorRole="author" affiliationRef="#af6"><personName><givenNames>Marsha</givenNames><familyName>Tennis</familyName></personName></creator><creator xml:id="au9" creatorRole="author" affiliationRef="#af7"><personName><givenNames>Michael P.</givenNames><familyName>McDermott</familyName></personName></creator><creator xml:id="au10" creatorRole="author" affiliationRef="#af8"><personName><givenNames>Donna</givenNames><familyName>Amyot</familyName></personName></creator><creator xml:id="au11" creatorRole="author" affiliationRef="#af9"><personName><givenNames>Ruth</givenNames><familyName>Barter</familyName></personName></creator><creator xml:id="au12" creatorRole="author" affiliationRef="#af21"><personName><givenNames>Lisa</givenNames><familyName>Cornelius</familyName></personName></creator><creator xml:id="au13" creatorRole="author" affiliationRef="#af10"><personName><givenNames>Carol</givenNames><familyName>Demong</familyName></personName></creator><creator xml:id="au14" creatorRole="author" affiliationRef="#af11"><personName><givenNames>Judith</givenNames><familyName>Dobson</familyName></personName></creator><creator xml:id="au15" creatorRole="author" affiliationRef="#af12"><personName><givenNames>Jan</givenNames><familyName>Duff</familyName></personName></creator><creator xml:id="au16" creatorRole="author" affiliationRef="#af13"><personName><givenNames>Judi</givenNames><familyName>Erickson</familyName></personName></creator><creator xml:id="au17" creatorRole="author" affiliationRef="#af7"><personName><givenNames>Nita</givenNames><familyName>Gardiner</familyName></personName></creator><creator xml:id="au18" creatorRole="author" affiliationRef="#af19"><personName><givenNames>Lisa</givenNames><familyName>Gauger</familyName></personName></creator><creator xml:id="au19" creatorRole="author" affiliationRef="#af14"><personName><givenNames>Peggy</givenNames><familyName>Gray</familyName></personName></creator><creator xml:id="au20" creatorRole="author" affiliationRef="#af15"><personName><givenNames>Bernice</givenNames><familyName>Kanigan</familyName></personName></creator><creator xml:id="au21" creatorRole="author" affiliationRef="#af16"><personName><givenNames>Barbara</givenNames><familyName>Kiryluk</familyName></personName></creator><creator xml:id="au22" creatorRole="author" affiliationRef="#af17"><personName><givenNames>Paula</givenNames><familyName>Lewis</familyName></personName></creator><creator xml:id="au23" creatorRole="author" affiliationRef="#af18"><personName><givenNames>Kathie</givenNames><familyName>Mistura</familyName></personName></creator><creator xml:id="au24" creatorRole="author" affiliationRef="#af19"><personName><givenNames>Teri</givenNames><familyName>Malapira</familyName></personName></creator><creator xml:id="au25" creatorRole="author" affiliationRef="#af20"><personName><givenNames>Mary</givenNames><familyName>Pay</familyName></personName></creator><creator xml:id="au26" creatorRole="author" affiliationRef="#af21"><personName><givenNames>Carol</givenNames><familyName>Sheldon</familyName></personName></creator><creator xml:id="au27" creatorRole="author" affiliationRef="#af22"><personName><givenNames>Linda</givenNames><familyName>Winfield</familyName></personName></creator><creator xml:id="au28" creatorRole="author" affiliationRef="#af23"><personName><givenNames>Kathy</givenNames><familyName>Wolfington‐Shallow</familyName></personName></creator><creator xml:id="au29" creatorRole="author" affiliationRef="#af24"><personName><givenNames>Kim</givenNames><familyName>Zoog</familyName></personName></creator></creators><affiliationGroup><affiliation xml:id="af1" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: Department of Neurology, Oregon Health Sciences University, Portland, OR</unparsedAffiliation></affiliation><affiliation xml:id="af2" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</unparsedAffiliation></affiliation><affiliation xml:id="af3" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: Rush‐Presbyterian/St. Luke's Medical Center, Chicago, IL</unparsedAffiliation></affiliation><affiliation xml:id="af4" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: Brown University, Providence, RI</unparsedAffiliation></affiliation><affiliation xml:id="af5" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: University of Virginia, Charlottesville, VA</unparsedAffiliation></affiliation><affiliation xml:id="af6" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: Massachusetts General Hospital, Boston, MA</unparsedAffiliation></affiliation><affiliation xml:id="af7" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: University of Rochester, Rochester, NY</unparsedAffiliation></affiliation><affiliation xml:id="af8" countryCode="CA" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: McGill University, Montreal, PQ</unparsedAffiliation></affiliation><affiliation xml:id="af9" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: University of Kansas, KS</unparsedAffiliation></affiliation><affiliation xml:id="af10" countryCode="CA" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: University of Calgary Medical Clinic, Calgary, AB</unparsedAffiliation></affiliation><affiliation xml:id="af11" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: University of Iowa, Iowa City, IA</unparsedAffiliation></affiliation><affiliation xml:id="af12" countryCode="CA" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: Toronto Western Hospital, Toronto, ON</unparsedAffiliation></affiliation><affiliation xml:id="af13" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: University of Nebraska Medical Center, Omaha, NE</unparsedAffiliation></affiliation><affiliation xml:id="af14" countryCode="CA" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: Ottawa Civic Hospital, Ottawa, ON</unparsedAffiliation></affiliation><affiliation xml:id="af15" countryCode="CA" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: University of Saskatchewan, Saskatoon, SK</unparsedAffiliation></affiliation><affiliation xml:id="af16" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: St. Luke's Hospital, Denver, CO</unparsedAffiliation></affiliation><affiliation xml:id="af17" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: California Parkinson's Foundation, Sunnyvale, CA</unparsedAffiliation></affiliation><affiliation xml:id="af18" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: Sinai Hospital of Detroit, Detroit, MI</unparsedAffiliation></affiliation><affiliation xml:id="af19" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: University of South Florida, Tampa, FL</unparsedAffiliation></affiliation><affiliation xml:id="af20" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: University of California at San Diego, San Diego, CA</unparsedAffiliation></affiliation><affiliation xml:id="af21" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: University of Miami, Miami, FL</unparsedAffiliation></affiliation><affiliation xml:id="af22" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: Columbia University, New York, NY</unparsedAffiliation></affiliation><affiliation xml:id="af23" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: University of Pennsylvania, Philadelphia, PA</unparsedAffiliation></affiliation><affiliation xml:id="af24" countryCode="US" type="organization"><unparsedAffiliation>Members of the Parkinson Study Group: Ohio State University, Columbus, OH</unparsedAffiliation></affiliation></affiliationGroup><keywordGroup xml:lang="en" type="author"><keyword xml:id="kwd1">Spousal caregiving</keyword><keyword xml:id="kwd2">Caregiver strain</keyword><keyword xml:id="kwd3">Parkinson's disease</keyword></keywordGroup><abstractGroup><abstract type="main" xml:lang="en"><title type="main">Abstract</title><p>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 <i>t</i> 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.</p></abstract></abstractGroup></contentMeta></header></component></istex:document></istex:metadataXml><mods version="3.6"><titleInfo lang="en"><title>Living with a person who has parkinson's disease: The Spouse's perspective by stage of disease</title></titleInfo><titleInfo type="abbreviated" lang="en"><title>PARKINSON'S DISEASE: THE SPOUSE'S PERSPECTIVE</title></titleInfo><titleInfo type="alternative" contentType="CDATA" lang="en"><title>Living with a person who has parkinson's disease: The Spouse's perspective by stage of disease</title></titleInfo><name type="personal"><namePart type="given">Julie H.</namePart><namePart type="family">Carter</namePart><affiliation>Members of the Parkinson Study Group: Department of Neurology, Oregon Health Sciences University, Portland, OR</affiliation><affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</affiliation><description>Correspondence: Oregon Health Sciences University, L‐226, 3181 SW Sam Jackson Park Road, Portland, OR 97201‐3098, U.S.A</description><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Barbara J.</namePart><namePart type="family">Stewart</namePart><affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Patricia G.</namePart><namePart type="family">Archbold</namePart><affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Iku</namePart><namePart type="family">Inoue</namePart><affiliation>Members of the Parkinson Study Group: School of Nursing, Oregon Health Sciences University, Portland, OR</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Jeana</namePart><namePart type="family">Jaglin</namePart><affiliation>Members of the Parkinson Study Group: Rush‐Presbyterian/St. Luke's Medical Center, Chicago, IL</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Meg</namePart><namePart type="family">Lannon</namePart><affiliation>Members of the Parkinson Study Group: Brown University, Providence, RI</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Elke</namePart><namePart type="family">Rost‐Ruffner</namePart><affiliation>Members of the Parkinson Study Group: University of Virginia, Charlottesville, VA</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Marsha</namePart><namePart type="family">Tennis</namePart><affiliation>Members of the Parkinson Study Group: Massachusetts General Hospital, Boston, MA</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Michael P.</namePart><namePart type="family">McDermott</namePart><affiliation>Members of the Parkinson Study Group: University of Rochester, Rochester, NY</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Donna</namePart><namePart type="family">Amyot</namePart><affiliation>Members of the Parkinson Study Group: McGill University, Montreal, PQ</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Ruth</namePart><namePart type="family">Barter</namePart><affiliation>Members of the Parkinson Study Group: University of Kansas, KS</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Lisa</namePart><namePart type="family">Cornelius</namePart><affiliation>Members of the Parkinson Study Group: University of Miami, Miami, FL</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Carol</namePart><namePart type="family">Demong</namePart><affiliation>Members of the Parkinson Study Group: University of Calgary Medical Clinic, Calgary, AB</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Judith</namePart><namePart type="family">Dobson</namePart><affiliation>Members of the Parkinson Study Group: University of Iowa, Iowa City, IA</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Jan</namePart><namePart type="family">Duff</namePart><affiliation>Members of the Parkinson Study Group: Toronto Western Hospital, Toronto, ON</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Judi</namePart><namePart type="family">Erickson</namePart><affiliation>Members of the Parkinson Study Group: University of Nebraska Medical Center, Omaha, NE</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Nita</namePart><namePart type="family">Gardiner</namePart><affiliation>Members of the Parkinson Study Group: University of Rochester, Rochester, NY</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Lisa</namePart><namePart type="family">Gauger</namePart><affiliation>Members of the Parkinson Study Group: University of South Florida, Tampa, FL</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Peggy</namePart><namePart type="family">Gray</namePart><affiliation>Members of the Parkinson Study Group: Ottawa Civic Hospital, Ottawa, ON</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Bernice</namePart><namePart type="family">Kanigan</namePart><affiliation>Members of the Parkinson Study Group: University of Saskatchewan, Saskatoon, SK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Barbara</namePart><namePart type="family">Kiryluk</namePart><affiliation>Members of the Parkinson Study Group: St. Luke's Hospital, Denver, CO</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Paula</namePart><namePart type="family">Lewis</namePart><affiliation>Members of the Parkinson Study Group: California Parkinson's Foundation, Sunnyvale, CA</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Kathie</namePart><namePart type="family">Mistura</namePart><affiliation>Members of the Parkinson Study Group: Sinai Hospital of Detroit, Detroit, MI</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Teri</namePart><namePart type="family">Malapira</namePart><affiliation>Members of the Parkinson Study Group: University of South Florida, Tampa, FL</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Mary</namePart><namePart type="family">Pay</namePart><affiliation>Members of the Parkinson Study Group: University of California at San Diego, San Diego, CA</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Carol</namePart><namePart type="family">Sheldon</namePart><affiliation>Members of the Parkinson Study Group: University of Miami, Miami, FL</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Linda</namePart><namePart type="family">Winfield</namePart><affiliation>Members of the Parkinson Study Group: Columbia University, New York, NY</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Kathy</namePart><namePart type="family">Wolfington‐Shallow</namePart><affiliation>Members of the Parkinson Study Group: University of Pennsylvania, Philadelphia, PA</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Kim</namePart><namePart type="family">Zoog</namePart><affiliation>Members of the Parkinson Study Group: Ohio State University, Columbus, OH</affiliation><role><roleTerm type="text">author</roleTerm></role></name><typeOfResource>text</typeOfResource><genre type="article" displayLabel="article"></genre><originInfo><publisher>Wiley Subscription Services, Inc., A Wiley Company</publisher><place><placeTerm type="text">Hoboken</placeTerm></place><dateIssued encoding="w3cdtf">1998-01</dateIssued><dateCaptured encoding="w3cdtf">1996-09-23</dateCaptured><dateValid encoding="w3cdtf">1997-06-18</dateValid><copyrightDate encoding="w3cdtf">1998</copyrightDate></originInfo><language><languageTerm type="code" authority="rfc3066">en</languageTerm><languageTerm type="code" authority="iso639-2b">eng</languageTerm></language><physicalDescription><internetMediaType>text/html</internetMediaType><extent unit="figures">1</extent><extent unit="tables">6</extent><extent unit="references">24</extent></physicalDescription><abstract 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.</abstract><subject lang="en"><genre>Keywords</genre><topic>Spousal caregiving</topic><topic>Caregiver strain</topic><topic>Parkinson's disease</topic></subject><relatedItem type="host"><titleInfo><title>Movement Disorders</title><subTitle>Official Journal of the Movement Disorder Society</subTitle></titleInfo><titleInfo type="abbreviated"><title>Mov. Disord.</title></titleInfo><genre type="Journal">journal</genre><subject><genre>article category</genre><topic>Article</topic></subject><identifier type="ISSN">0885-3185</identifier><identifier type="eISSN">1531-8257</identifier><identifier type="DOI">10.1002/(ISSN)1531-8257</identifier><identifier type="PublisherID">MDS</identifier><part><date>1998</date><detail type="volume"><caption>vol.</caption><number>13</number></detail><detail type="issue"><caption>no.</caption><number>1</number></detail><extent unit="pages"><start>20</start><end>28</end><total>9</total></extent></part></relatedItem><identifier type="istex">14FDC4D2301D29DFA44FF2248B14AE4E90C3B27E</identifier><identifier type="DOI">10.1002/mds.870130108</identifier><identifier type="ArticleID">MDS870130108</identifier><accessCondition type="use and reproduction" contentType="copyright">Copyright © 1998 Movement Disorder Society</accessCondition><recordInfo><recordContentSource>WILEY</recordContentSource><recordOrigin>Wiley Subscription Services, Inc., A Wiley Company</recordOrigin></recordInfo></mods></metadata><serie></serie></istex></record>Pour manipuler ce document sous Unix (Dilib)
EXPLOR_STEP=$WICRI_ROOT/Wicri/Sante/explor/ParkinsonV1/Data/Main/Corpus
HfdSelect -h $EXPLOR_STEP/biblio.hfd -nk 000062 | SxmlIndent | more
Ou
HfdSelect -h $EXPLOR_AREA/Data/Main/Corpus/biblio.hfd -nk 000062 | SxmlIndent | more
Pour mettre un lien sur cette page dans le réseau Wicri
{{Explor lien
|wiki= Wicri/Sante
|area= ParkinsonV1
|flux= Main
|étape= Corpus
|type= RBID
|clé= ISTEX:14FDC4D2301D29DFA44FF2248B14AE4E90C3B27E
|texte= Living with a person who has parkinson's disease: The Spouse's perspective by stage of disease
}}
| This area was generated with Dilib version V0.6.23. |  |