Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review of Qualitative Research
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{"title"=>"Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review of Qualitative Research", "type"=>"generic", "authors"=>[{"first_name"=>"Katie", "last_name"=>"Gallacher", "scopus_author_id"=>"6508219880"}, {"first_name"=>"Deborah", "last_name"=>"Morrison", "scopus_author_id"=>"44961284100"}, {"first_name"=>"Bhautesh", "last_name"=>"Jani", "scopus_author_id"=>"55190844300"}, {"first_name"=>"Sara", "last_name"=>"Macdonald", "scopus_author_id"=>"13409158000"}, {"first_name"=>"Carl R.", "last_name"=>"May", "scopus_author_id"=>"7201679264"}, {"first_name"=>"Victor M.", "last_name"=>"Montori", "scopus_author_id"=>"7005319198"}, {"first_name"=>"Patricia J.", "last_name"=>"Erwin", "scopus_author_id"=>"7004707786"}, {"first_name"=>"G. David", "last_name"=>"Batty", "scopus_author_id"=>"7003988354"}, {"first_name"=>"David T.", "last_name"=>"Eton", "scopus_author_id"=>"55567309400"}, {"first_name"=>"Peter", "last_name"=>"Langhorne", "scopus_author_id"=>"7006811185"}, {"first_name"=>"Frances S.", "last_name"=>"Mair", "scopus_author_id"=>"7004850729"}], "year"=>2013, "source"=>"PLoS Medicine", "identifiers"=>{"isbn"=>"1549-1676", "scopus"=>"2-s2.0-84879357091", "pui"=>"369184414", "doi"=>"10.1371/journal.pmed.1001473", "sgr"=>"84879357091", "pmid"=>"23824703", "issn"=>"15491277"}, "id"=>"8bd09e81-c59f-300a-afcd-925ff4c521fb", "abstract"=>"BACKGROUND: Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed 'treatment burden' and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.\\n\\nMETHODS AND FINDINGS: The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.\\n\\nCONCLUSIONS: Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems.", "link"=>"http://www.mendeley.com/research/uncovering-treatment-burden-key-concept-stroke-care-systematic-review-qualitative-research-1", "reader_count"=>55, "reader_count_by_academic_status"=>{"Professor > Associate Professor"=>5, "Librarian"=>1, "Researcher"=>14, "Student > Doctoral Student"=>4, "Student > Ph. D. Student"=>11, "Student > Postgraduate"=>4, "Student > Master"=>7, "Other"=>3, "Student > Bachelor"=>4, "Lecturer > Senior Lecturer"=>1, "Unspecified"=>1}, "reader_count_by_user_role"=>{"Professor > Associate Professor"=>5, "Librarian"=>1, "Researcher"=>14, "Student > Doctoral Student"=>4, "Student > Ph. D. 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  • {"files"=>["https://ndownloader.figshare.com/files/1100953"], "description"=>"<p>Each study was appraised using the questions shown in the table. The number of studies with the answers ‘yes’, ‘no’, or ‘unclear’ are shown for each question.</p>", "links"=>[], "tags"=>["Clinical research design", "Qualitative studies", "Systematic reviews", "neurology", "Cerebrovascular diseases", "Ischemic stroke", "Hemorrhagic stroke", "appraisal", "included", "studies"], "article_id"=>731400, "categories"=>["Medicine"], "users"=>["Katie Gallacher", "Deborah Morrison", "Bhautesh Jani", "Sara Macdonald", "Carl R. May", "Victor M. Montori", "Patricia J. Erwin", "G. David Batty", "David T. Eton", "Peter Langhorne", "Frances S. Mair"], "doi"=>"https://dx.doi.org/10.1371/journal.pmed.1001473.t001", "stats"=>{"downloads"=>1, "page_views"=>1, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_A_summary_of_the_quality_appraisal_of_included_studies_50_/731400", "title"=>"A summary of the quality appraisal of included studies [50].", "pos_in_sequence"=>0, "defined_type"=>3, "published_date"=>"2013-06-25 03:18:59"}
  • {"files"=>["https://ndownloader.figshare.com/files/1100954", "https://ndownloader.figshare.com/files/1100955", "https://ndownloader.figshare.com/files/1100956", "https://ndownloader.figshare.com/files/1100957", "https://ndownloader.figshare.com/files/1100958", "https://ndownloader.figshare.com/files/1100959", "https://ndownloader.figshare.com/files/1100968", "https://ndownloader.figshare.com/files/1100975"], "description"=>"<div><p>Background</p><p>Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed ‘treatment burden’ and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.</p><p>Methods and Findings</p><p>The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.</p><p>Conclusions</p><p>Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems.</p><p>Systematic Review Registration</p><p>International Prospective Register of Systematic Reviews <a href=\"http://www.crd.york.ac.uk/NIHR_PROSPERO/display_record.asp?ID=CRD42011001123\" target=\"_blank\">CRD42011001123</a></p><p><i>Please see later in the article for the Editors' Summary</i></p></div>", "links"=>[], "tags"=>["Clinical research design", "Qualitative studies", "Systematic reviews", "neurology", "Cerebrovascular diseases", "Ischemic stroke", "Hemorrhagic stroke", "systematic", "qualitative"], "article_id"=>731401, "categories"=>["Medicine"], "users"=>["Katie Gallacher", "Deborah Morrison", "Bhautesh Jani", "Sara Macdonald", "Carl R. May", "Victor M. Montori", "Patricia J. Erwin", "G. David Batty", "David T. Eton", "Peter Langhorne", "Frances S. Mair"], "doi"=>["https://dx.doi.org/10.1371/journal.pmed.1001473.s001", "https://dx.doi.org/10.1371/journal.pmed.1001473.s002", "https://dx.doi.org/10.1371/journal.pmed.1001473.s003", "https://dx.doi.org/10.1371/journal.pmed.1001473.s004", "https://dx.doi.org/10.1371/journal.pmed.1001473.s005", "https://dx.doi.org/10.1371/journal.pmed.1001473.s006", "https://dx.doi.org/10.1371/journal.pmed.1001473.s007", "https://dx.doi.org/10.1371/journal.pmed.1001473.s008"], "stats"=>{"downloads"=>69, "page_views"=>9, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Uncovering_Treatment_Burden_as_a_Key_Concept_for_Stroke_Care_A_Systematic_Review_of_Qualitative_Research_/731401", "title"=>"Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review of Qualitative Research", "pos_in_sequence"=>0, "defined_type"=>4, "published_date"=>"2013-06-25 03:18:59"}
  • {"files"=>["https://ndownloader.figshare.com/files/1100950"], "description"=>"<p>Inclusions and exclusions are shown at each stage.</p>", "links"=>[], "tags"=>["Clinical research design", "Qualitative studies", "Systematic reviews", "neurology", "Cerebrovascular diseases", "Ischemic stroke", "Hemorrhagic stroke", "demonstrating", "papers", "systematic"], "article_id"=>731397, "categories"=>["Medicine"], "users"=>["Katie Gallacher", "Deborah Morrison", "Bhautesh Jani", "Sara Macdonald", "Carl R. May", "Victor M. Montori", "Patricia J. Erwin", "G. David Batty", "David T. Eton", "Peter Langhorne", "Frances S. Mair"], "doi"=>"https://dx.doi.org/10.1371/journal.pmed.1001473.g001", "stats"=>{"downloads"=>0, "page_views"=>0, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Flowchart_demonstrating_the_screening_process_of_papers_in_the_systematic_review_/731397", "title"=>"Flowchart demonstrating the screening process of papers in the systematic review.", "pos_in_sequence"=>0, "defined_type"=>1, "published_date"=>"2013-06-25 03:18:59"}
  • {"files"=>["https://ndownloader.figshare.com/files/1100951"], "description"=>"<p>The arrows represent the possible pathways between components that stroke patients may follow. The ‘enacting management strategies’ component has four subcomponents.</p>", "links"=>[], "tags"=>["Clinical research design", "Qualitative studies", "Systematic reviews", "neurology", "Cerebrovascular diseases", "Ischemic stroke", "Hemorrhagic stroke"], "article_id"=>731398, "categories"=>["Medicine"], "users"=>["Katie Gallacher", "Deborah Morrison", "Bhautesh Jani", "Sara Macdonald", "Carl R. May", "Victor M. Montori", "Patricia J. Erwin", "G. David Batty", "David T. Eton", "Peter Langhorne", "Frances S. Mair"], "doi"=>"https://dx.doi.org/10.1371/journal.pmed.1001473.g002", "stats"=>{"downloads"=>3, "page_views"=>16, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Conceptual_model_of_stroke_treatment_burden_/731398", "title"=>"Conceptual model of stroke treatment burden.", "pos_in_sequence"=>0, "defined_type"=>1, "published_date"=>"2013-06-25 03:18:59"}
  • {"files"=>["https://ndownloader.figshare.com/files/1100952"], "description"=>"<p>A taxonomy of treatment burden in stroke, grouped within categories that correspond to the conceptual model of treatment burden shown in <a href=\"http://www.plosmedicine.org/article/info:doi/10.1371/journal.pmed.1001473#pmed-1001473-g002\" target=\"_blank\">Figure 2</a>.</p>", "links"=>[], "tags"=>["Clinical research design", "Qualitative studies", "Systematic reviews", "neurology", "Cerebrovascular diseases", "Ischemic stroke", "Hemorrhagic stroke"], "article_id"=>731399, "categories"=>["Medicine"], "users"=>["Katie Gallacher", "Deborah Morrison", "Bhautesh Jani", "Sara Macdonald", "Carl R. May", "Victor M. Montori", "Patricia J. Erwin", "G. David Batty", "David T. Eton", "Peter Langhorne", "Frances S. Mair"], "doi"=>"https://dx.doi.org/10.1371/journal.pmed.1001473.t002", "stats"=>{"downloads"=>1, "page_views"=>7, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Treatment_burden_identified_from_the_literature_/731399", "title"=>"Treatment burden identified from the literature.", "pos_in_sequence"=>0, "defined_type"=>3, "published_date"=>"2013-06-25 03:18:59"}

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