Patients' perceptions of life shift after deep brain stimulation for primary dystonia—A qualitative study
Identifieur interne : 001521 ( Main/Merge ); précédent : 001520; suivant : 001522Patients' perceptions of life shift after deep brain stimulation for primary dystonia—A qualitative study
Auteurs : Gun-Marie Hariz [Suède] ; Patricia Limousin [Royaume-Uni] ; Stephen Tisch [Australie] ; Marjan Jahanshahi [Royaume-Uni] ; Anncristine Fjellman-Wiklund [Suède]Source :
- Movement Disorders [ 0885-3185 ] ; 2011-09.
English descriptors
- KwdEn :
- Adult, Aged, Deep Brain Stimulation (methods), Disabled Persons, Dystonic Disorders (physiopathology), Dystonic Disorders (psychology), Dystonic Disorders (therapy), Female, Humans, Male, Middle Aged, Perception (physiology), Quality of Life, Treatment Outcome, deep brain stimulation, dystonia, grounded theory, patient perspective, patient‐related outcome.
- MESH :
- methods : Deep Brain Stimulation.
- physiology : Perception.
- physiopathology : Dystonic Disorders.
- psychology : Dystonic Disorders.
- therapy : Dystonic Disorders.
- Adult, Aged, Disabled Persons, Female, Humans, Male, Middle Aged, Quality of Life, Treatment Outcome.
Abstract
Studies of deep brain stimulation for dystonia have shown significant motor improvement. However, patients' perceptions of surgery and its effects have been less studied. We aimed to explore perceptions of changes in life in patients with primary dystonia after deep brain stimulation. Thirteen patients underwent thematic interviews 8–60 months after pallidal deep brain stimulation. Interviews were transcribed verbatim and analyzed with grounded theory. Patients described a profound impact of dystonia on daily life. After surgery, physical changes with a more upright posture and fewer spasms translated into an easier, more satisfying life with greater confidence. Notwithstanding this positive outcome, the transition from a limited life before surgery to opportunities for a better life exhibited obstacles: The “new life” after deep brain stimulation was stressful, including concern about being dependent on the stimulator as well as having to deal with interfering side effects from deep brain stimulation. The whole coping process meant that patients had to quickly shift focus from struggling to adapt to a slowly progressive disorder to adjustment to a life with possibilities, but also with new challenges. In this demanding transition process, patients wished to be offered better professional guidance and support. Even though deep brain stimulation provides people with primary dystonia with a potential for better mobility and more confidence, patients experienced new challenges and expressed the need for support and counseling after surgery. Grounded theory is a useful method to highlight patients' own experience and contributes to a deeper understanding of the impact of deep brain stimulation on patients with dystonia. © 2011 Movement Disorder Society
Url:
DOI: 10.1002/mds.23796
Links toward previous steps (curation, corpus...)
- to stream Istex, to step Corpus: 000882
- to stream Istex, to step Curation: 000882
- to stream Istex, to step Checkpoint: 000200
- to stream PubMed, to step Corpus: 001158
- to stream PubMed, to step Curation: 001158
- to stream PubMed, to step Checkpoint: 001159
- to stream Ncbi, to step Merge: 003270
- to stream Ncbi, to step Curation: 003270
- to stream Ncbi, to step Checkpoint: 003270
Links to Exploration step
ISTEX:7755C14388583067AE0F783944F6A920631A415BLe document en format XML
<record><TEI wicri:istexFullTextTei="biblStruct"><teiHeader><fileDesc><titleStmt><title xml:lang="en">Patients' perceptions of life shift after deep brain stimulation for primary dystonia—A qualitative study</title><author><name sortKey="Hariz, Gun Arie" sort="Hariz, Gun Arie" uniqKey="Hariz G" first="Gun-Marie" last="Hariz">Gun-Marie Hariz</name></author><author><name sortKey="Limousin, Patricia" sort="Limousin, Patricia" uniqKey="Limousin P" first="Patricia" last="Limousin">Patricia Limousin</name></author><author><name sortKey="Tisch, Stephen" sort="Tisch, Stephen" uniqKey="Tisch S" first="Stephen" last="Tisch">Stephen Tisch</name></author><author><name sortKey="Jahanshahi, Marjan" sort="Jahanshahi, Marjan" uniqKey="Jahanshahi M" first="Marjan" last="Jahanshahi">Marjan Jahanshahi</name></author><author><name sortKey="Fjellman Iklund, Anncristine" sort="Fjellman Iklund, Anncristine" uniqKey="Fjellman Iklund A" first="Anncristine" last="Fjellman-Wiklund">Anncristine Fjellman-Wiklund</name></author></titleStmt><publicationStmt><idno type="wicri:source">ISTEX</idno><idno type="RBID">ISTEX:7755C14388583067AE0F783944F6A920631A415B</idno><date when="2011" year="2011">2011</date><idno type="doi">10.1002/mds.23796</idno><idno type="url">https://api.istex.fr/document/7755C14388583067AE0F783944F6A920631A415B/fulltext/pdf</idno><idno type="wicri:Area/Istex/Corpus">000882</idno><idno type="wicri:Area/Istex/Curation">000882</idno><idno type="wicri:Area/Istex/Checkpoint">000200</idno><idno type="wicri:doubleKey">0885-3185:2011:Hariz G:patients:perceptions:of</idno><idno type="wicri:source">PubMed</idno><idno type="RBID">pubmed:21626564</idno><idno type="wicri:Area/PubMed/Corpus">001158</idno><idno type="wicri:Area/PubMed/Curation">001158</idno><idno type="wicri:Area/PubMed/Checkpoint">001159</idno><idno type="wicri:Area/Ncbi/Merge">003270</idno><idno type="wicri:Area/Ncbi/Curation">003270</idno><idno type="wicri:Area/Ncbi/Checkpoint">003270</idno><idno type="wicri:Area/Main/Merge">001521</idno></publicationStmt><sourceDesc><biblStruct><analytic><title level="a" type="main" xml:lang="en">Patients' perceptions of life shift after deep brain stimulation for primary dystonia—A qualitative study</title><author><name sortKey="Hariz, Gun Arie" sort="Hariz, Gun Arie" uniqKey="Hariz G" first="Gun-Marie" last="Hariz">Gun-Marie Hariz</name><affiliation wicri:level="1"><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå</wicri:regionArea><wicri:noRegion>Umeå</wicri:noRegion></affiliation><affiliation wicri:level="1"><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Clinical Neuroscience, Umeå University, Umeå</wicri:regionArea><wicri:noRegion>Umeå</wicri:noRegion></affiliation></author><author><name sortKey="Limousin, Patricia" sort="Limousin, Patricia" uniqKey="Limousin P" first="Patricia" last="Limousin">Patricia Limousin</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>UCL Institute of Neurology, Sobell Department of Motor Neuroscience and Movement Disorders, Unit of Functional Neurosurgery, London</wicri:regionArea><placeName><settlement type="city">Londres</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Londres</region></placeName></affiliation></author><author><name sortKey="Tisch, Stephen" sort="Tisch, Stephen" uniqKey="Tisch S" first="Stephen" last="Tisch">Stephen Tisch</name><affiliation wicri:level="1"><country xml:lang="fr">Australie</country><wicri:regionArea>Department of Neurology, St. Vincent's Hospital, Darlinghurst, NSW</wicri:regionArea><wicri:noRegion>NSW</wicri:noRegion></affiliation></author><author><name sortKey="Jahanshahi, Marjan" sort="Jahanshahi, Marjan" uniqKey="Jahanshahi M" first="Marjan" last="Jahanshahi">Marjan Jahanshahi</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>UCL Institute of Neurology, Sobell Department of Motor Neuroscience and Movement Disorders, Unit of Functional Neurosurgery, London</wicri:regionArea><placeName><settlement type="city">Londres</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Londres</region></placeName></affiliation></author><author><name sortKey="Fjellman Iklund, Anncristine" sort="Fjellman Iklund, Anncristine" uniqKey="Fjellman Iklund A" first="Anncristine" last="Fjellman-Wiklund">Anncristine Fjellman-Wiklund</name><affiliation wicri:level="1"><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Community Medicine and Rehabilitation, Physiotherapy, Umeå University, Umeå</wicri:regionArea><wicri:noRegion>Umeå</wicri:noRegion></affiliation></author></analytic><monogr></monogr><series><title level="j">Movement Disorders</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="2011-09">2011-09</date><biblScope unit="vol">26</biblScope><biblScope unit="issue">11</biblScope><biblScope unit="page" from="2101">2101</biblScope><biblScope unit="page" to="2106">2106</biblScope></imprint><idno type="ISSN">0885-3185</idno></series><idno type="istex">7755C14388583067AE0F783944F6A920631A415B</idno><idno type="DOI">10.1002/mds.23796</idno><idno type="ArticleID">MDS23796</idno></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">0885-3185</idno></seriesStmt></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adult</term><term>Aged</term><term>Deep Brain Stimulation (methods)</term><term>Disabled Persons</term><term>Dystonic Disorders (physiopathology)</term><term>Dystonic Disorders (psychology)</term><term>Dystonic Disorders (therapy)</term><term>Female</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Perception (physiology)</term><term>Quality of Life</term><term>Treatment Outcome</term><term>deep brain stimulation</term><term>dystonia</term><term>grounded theory</term><term>patient perspective</term><term>patient‐related outcome</term></keywords><keywords scheme="MESH" qualifier="methods" xml:lang="en"><term>Deep Brain Stimulation</term></keywords><keywords scheme="MESH" qualifier="physiology" xml:lang="en"><term>Perception</term></keywords><keywords scheme="MESH" qualifier="physiopathology" xml:lang="en"><term>Dystonic Disorders</term></keywords><keywords scheme="MESH" qualifier="psychology" xml:lang="en"><term>Dystonic Disorders</term></keywords><keywords scheme="MESH" qualifier="therapy" xml:lang="en"><term>Dystonic Disorders</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Adult</term><term>Aged</term><term>Disabled Persons</term><term>Female</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Quality of Life</term><term>Treatment Outcome</term></keywords></textClass><langUsage><language ident="en">en</language></langUsage></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Studies of deep brain stimulation for dystonia have shown significant motor improvement. However, patients' perceptions of surgery and its effects have been less studied. We aimed to explore perceptions of changes in life in patients with primary dystonia after deep brain stimulation. Thirteen patients underwent thematic interviews 8–60 months after pallidal deep brain stimulation. Interviews were transcribed verbatim and analyzed with grounded theory. Patients described a profound impact of dystonia on daily life. After surgery, physical changes with a more upright posture and fewer spasms translated into an easier, more satisfying life with greater confidence. Notwithstanding this positive outcome, the transition from a limited life before surgery to opportunities for a better life exhibited obstacles: The “new life” after deep brain stimulation was stressful, including concern about being dependent on the stimulator as well as having to deal with interfering side effects from deep brain stimulation. The whole coping process meant that patients had to quickly shift focus from struggling to adapt to a slowly progressive disorder to adjustment to a life with possibilities, but also with new challenges. In this demanding transition process, patients wished to be offered better professional guidance and support. Even though deep brain stimulation provides people with primary dystonia with a potential for better mobility and more confidence, patients experienced new challenges and expressed the need for support and counseling after surgery. Grounded theory is a useful method to highlight patients' own experience and contributes to a deeper understanding of the impact of deep brain stimulation on patients with dystonia. © 2011 Movement Disorder Society</div></front></TEI><double doi="10.1002/mds.23796"><ISTEX><TEI wicri:istexFullTextTei="biblStruct"><teiHeader><fileDesc><titleStmt><title xml:lang="en">Patients' perceptions of life shift after deep brain stimulation for primary dystonia—A qualitative study</title><author><name sortKey="Hariz, Gun Arie" sort="Hariz, Gun Arie" uniqKey="Hariz G" first="Gun-Marie" last="Hariz">Gun-Marie Hariz</name></author><author><name sortKey="Limousin, Patricia" sort="Limousin, Patricia" uniqKey="Limousin P" first="Patricia" last="Limousin">Patricia Limousin</name></author><author><name sortKey="Tisch, Stephen" sort="Tisch, Stephen" uniqKey="Tisch S" first="Stephen" last="Tisch">Stephen Tisch</name></author><author><name sortKey="Jahanshahi, Marjan" sort="Jahanshahi, Marjan" uniqKey="Jahanshahi M" first="Marjan" last="Jahanshahi">Marjan Jahanshahi</name></author><author><name sortKey="Fjellman Iklund, Anncristine" sort="Fjellman Iklund, Anncristine" uniqKey="Fjellman Iklund A" first="Anncristine" last="Fjellman-Wiklund">Anncristine Fjellman-Wiklund</name></author></titleStmt><publicationStmt><idno type="wicri:source">ISTEX</idno><idno type="RBID">ISTEX:7755C14388583067AE0F783944F6A920631A415B</idno><date when="2011" year="2011">2011</date><idno type="doi">10.1002/mds.23796</idno><idno type="url">https://api.istex.fr/document/7755C14388583067AE0F783944F6A920631A415B/fulltext/pdf</idno><idno type="wicri:Area/Istex/Corpus">000882</idno><idno type="wicri:Area/Istex/Curation">000882</idno><idno type="wicri:Area/Istex/Checkpoint">000200</idno><idno type="wicri:doubleKey">0885-3185:2011:Hariz G:patients:perceptions:of</idno></publicationStmt><sourceDesc><biblStruct><analytic><title level="a" type="main" xml:lang="en">Patients' perceptions of life shift after deep brain stimulation for primary dystonia—A qualitative study</title><author><name sortKey="Hariz, Gun Arie" sort="Hariz, Gun Arie" uniqKey="Hariz G" first="Gun-Marie" last="Hariz">Gun-Marie Hariz</name><affiliation wicri:level="1"><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå</wicri:regionArea><wicri:noRegion>Umeå</wicri:noRegion></affiliation><affiliation wicri:level="1"><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Clinical Neuroscience, Umeå University, Umeå</wicri:regionArea><wicri:noRegion>Umeå</wicri:noRegion></affiliation></author><author><name sortKey="Limousin, Patricia" sort="Limousin, Patricia" uniqKey="Limousin P" first="Patricia" last="Limousin">Patricia Limousin</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>UCL Institute of Neurology, Sobell Department of Motor Neuroscience and Movement Disorders, Unit of Functional Neurosurgery, London</wicri:regionArea><placeName><settlement type="city">Londres</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Londres</region></placeName></affiliation></author><author><name sortKey="Tisch, Stephen" sort="Tisch, Stephen" uniqKey="Tisch S" first="Stephen" last="Tisch">Stephen Tisch</name><affiliation wicri:level="1"><country xml:lang="fr">Australie</country><wicri:regionArea>Department of Neurology, St. Vincent's Hospital, Darlinghurst, NSW</wicri:regionArea><wicri:noRegion>NSW</wicri:noRegion></affiliation></author><author><name sortKey="Jahanshahi, Marjan" sort="Jahanshahi, Marjan" uniqKey="Jahanshahi M" first="Marjan" last="Jahanshahi">Marjan Jahanshahi</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>UCL Institute of Neurology, Sobell Department of Motor Neuroscience and Movement Disorders, Unit of Functional Neurosurgery, London</wicri:regionArea><placeName><settlement type="city">Londres</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Londres</region></placeName></affiliation></author><author><name sortKey="Fjellman Iklund, Anncristine" sort="Fjellman Iklund, Anncristine" uniqKey="Fjellman Iklund A" first="Anncristine" last="Fjellman-Wiklund">Anncristine Fjellman-Wiklund</name><affiliation wicri:level="1"><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Community Medicine and Rehabilitation, Physiotherapy, Umeå University, Umeå</wicri:regionArea><wicri:noRegion>Umeå</wicri:noRegion></affiliation></author></analytic><monogr></monogr><series><title level="j">Movement Disorders</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="2011-09">2011-09</date><biblScope unit="vol">26</biblScope><biblScope unit="issue">11</biblScope><biblScope unit="page" from="2101">2101</biblScope><biblScope unit="page" to="2106">2106</biblScope></imprint><idno type="ISSN">0885-3185</idno></series><idno type="istex">7755C14388583067AE0F783944F6A920631A415B</idno><idno type="DOI">10.1002/mds.23796</idno><idno type="ArticleID">MDS23796</idno></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">0885-3185</idno></seriesStmt></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>deep brain stimulation</term><term>dystonia</term><term>grounded theory</term><term>patient perspective</term><term>patient‐related outcome</term></keywords></textClass><langUsage><language ident="en">en</language></langUsage></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Studies of deep brain stimulation for dystonia have shown significant motor improvement. However, patients' perceptions of surgery and its effects have been less studied. We aimed to explore perceptions of changes in life in patients with primary dystonia after deep brain stimulation. Thirteen patients underwent thematic interviews 8–60 months after pallidal deep brain stimulation. Interviews were transcribed verbatim and analyzed with grounded theory. Patients described a profound impact of dystonia on daily life. After surgery, physical changes with a more upright posture and fewer spasms translated into an easier, more satisfying life with greater confidence. Notwithstanding this positive outcome, the transition from a limited life before surgery to opportunities for a better life exhibited obstacles: The “new life” after deep brain stimulation was stressful, including concern about being dependent on the stimulator as well as having to deal with interfering side effects from deep brain stimulation. The whole coping process meant that patients had to quickly shift focus from struggling to adapt to a slowly progressive disorder to adjustment to a life with possibilities, but also with new challenges. In this demanding transition process, patients wished to be offered better professional guidance and support. Even though deep brain stimulation provides people with primary dystonia with a potential for better mobility and more confidence, patients experienced new challenges and expressed the need for support and counseling after surgery. Grounded theory is a useful method to highlight patients' own experience and contributes to a deeper understanding of the impact of deep brain stimulation on patients with dystonia. © 2011 Movement Disorder Society</div></front></TEI></ISTEX><PubMed><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">Patients' perceptions of life shift after deep brain stimulation for primary dystonia--A qualitative study.</title><author><name sortKey="Hariz, Gun Marie" sort="Hariz, Gun Marie" uniqKey="Hariz G" first="Gun-Marie" last="Hariz">Gun-Marie Hariz</name><affiliation wicri:level="1"><nlm:affiliation>Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå, Sweden. gun-marie.hariz@neuro.umu.se</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå</wicri:regionArea><wicri:noRegion>Umeå</wicri:noRegion></affiliation></author><author><name sortKey="Limousin, Patricia" sort="Limousin, Patricia" uniqKey="Limousin P" first="Patricia" last="Limousin">Patricia Limousin</name></author><author><name sortKey="Tisch, Stephen" sort="Tisch, Stephen" uniqKey="Tisch S" first="Stephen" last="Tisch">Stephen Tisch</name></author><author><name sortKey="Jahanshahi, Marjan" sort="Jahanshahi, Marjan" uniqKey="Jahanshahi M" first="Marjan" last="Jahanshahi">Marjan Jahanshahi</name></author><author><name sortKey="Fjellman Wiklund, Anncristine" sort="Fjellman Wiklund, Anncristine" uniqKey="Fjellman Wiklund A" first="Anncristine" last="Fjellman-Wiklund">Anncristine Fjellman-Wiklund</name></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2011">2011</date><idno type="doi">10.1002/mds.23796</idno><idno type="RBID">pubmed:21626564</idno><idno type="pmid">21626564</idno><idno type="wicri:Area/PubMed/Corpus">001158</idno><idno type="wicri:Area/PubMed/Curation">001158</idno><idno type="wicri:Area/PubMed/Checkpoint">001159</idno><idno type="wicri:Area/Ncbi/Merge">003270</idno><idno type="wicri:Area/Ncbi/Curation">003270</idno><idno type="wicri:Area/Ncbi/Checkpoint">003270</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Patients' perceptions of life shift after deep brain stimulation for primary dystonia--A qualitative study.</title><author><name sortKey="Hariz, Gun Marie" sort="Hariz, Gun Marie" uniqKey="Hariz G" first="Gun-Marie" last="Hariz">Gun-Marie Hariz</name><affiliation wicri:level="1"><nlm:affiliation>Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå, Sweden. gun-marie.hariz@neuro.umu.se</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå</wicri:regionArea><wicri:noRegion>Umeå</wicri:noRegion></affiliation></author><author><name sortKey="Limousin, Patricia" sort="Limousin, Patricia" uniqKey="Limousin P" first="Patricia" last="Limousin">Patricia Limousin</name></author><author><name sortKey="Tisch, Stephen" sort="Tisch, Stephen" uniqKey="Tisch S" first="Stephen" last="Tisch">Stephen Tisch</name></author><author><name sortKey="Jahanshahi, Marjan" sort="Jahanshahi, Marjan" uniqKey="Jahanshahi M" first="Marjan" last="Jahanshahi">Marjan Jahanshahi</name></author><author><name sortKey="Fjellman Wiklund, Anncristine" sort="Fjellman Wiklund, Anncristine" uniqKey="Fjellman Wiklund A" first="Anncristine" last="Fjellman-Wiklund">Anncristine Fjellman-Wiklund</name></author></analytic><series><title level="j">Movement disorders : official journal of the Movement Disorder Society</title><idno type="eISSN">1531-8257</idno><imprint><date when="2011" type="published">2011</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adult</term><term>Aged</term><term>Deep Brain Stimulation (methods)</term><term>Disabled Persons</term><term>Dystonic Disorders (physiopathology)</term><term>Dystonic Disorders (psychology)</term><term>Dystonic Disorders (therapy)</term><term>Female</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Perception (physiology)</term><term>Quality of Life</term><term>Treatment Outcome</term></keywords><keywords scheme="MESH" qualifier="methods" xml:lang="en"><term>Deep Brain Stimulation</term></keywords><keywords scheme="MESH" qualifier="physiology" xml:lang="en"><term>Perception</term></keywords><keywords scheme="MESH" qualifier="physiopathology" xml:lang="en"><term>Dystonic Disorders</term></keywords><keywords scheme="MESH" qualifier="psychology" xml:lang="en"><term>Dystonic Disorders</term></keywords><keywords scheme="MESH" qualifier="therapy" xml:lang="en"><term>Dystonic Disorders</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Adult</term><term>Aged</term><term>Disabled Persons</term><term>Female</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Quality of Life</term><term>Treatment Outcome</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Studies of deep brain stimulation for dystonia have shown significant motor improvement. However, patients' perceptions of surgery and its effects have been less studied. We aimed to explore perceptions of changes in life in patients with primary dystonia after deep brain stimulation. Thirteen patients underwent thematic interviews 8-60 months after pallidal deep brain stimulation. Interviews were transcribed verbatim and analyzed with grounded theory. Patients described a profound impact of dystonia on daily life. After surgery, physical changes with a more upright posture and fewer spasms translated into an easier, more satisfying life with greater confidence. Notwithstanding this positive outcome, the transition from a limited life before surgery to opportunities for a better life exhibited obstacles: The "new life" after deep brain stimulation was stressful, including concern about being dependent on the stimulator as well as having to deal with interfering side effects from deep brain stimulation. The whole coping process meant that patients had to quickly shift focus from struggling to adapt to a slowly progressive disorder to adjustment to a life with possibilities, but also with new challenges. In this demanding transition process, patients wished to be offered better professional guidance and support. Even though deep brain stimulation provides people with primary dystonia with a potential for better mobility and more confidence, patients experienced new challenges and expressed the need for support and counseling after surgery. Grounded theory is a useful method to highlight patients' own experience and contributes to a deeper understanding of the impact of deep brain stimulation on patients with dystonia.</div></front></TEI></PubMed></double></record>Pour manipuler ce document sous Unix (Dilib)
EXPLOR_STEP=$WICRI_ROOT/Wicri/Santé/explor/MovDisordV3/Data/Main/Merge
HfdSelect -h $EXPLOR_STEP/biblio.hfd -nk 001521 | SxmlIndent | more
Ou
HfdSelect -h $EXPLOR_AREA/Data/Main/Merge/biblio.hfd -nk 001521 | SxmlIndent | more
Pour mettre un lien sur cette page dans le réseau Wicri
{{Explor lien
|wiki= Wicri/Santé
|area= MovDisordV3
|flux= Main
|étape= Merge
|type= RBID
|clé= ISTEX:7755C14388583067AE0F783944F6A920631A415B
|texte= Patients' perceptions of life shift after deep brain stimulation for primary dystonia—A qualitative study
}}
| This area was generated with Dilib version V0.6.23. |  |