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{"title"=>"Patient, carer and professional perspectives on barriers and facilitators to quality care in advanced heart failure", "type"=>"journal", "authors"=>[{"first_name"=>"Susan", "last_name"=>"Browne", "scopus_author_id"=>"22940364200"}, {"first_name"=>"Sara", "last_name"=>"Macdonald", "scopus_author_id"=>"13409158000"}, {"first_name"=>"Carl R.", "last_name"=>"May", "scopus_author_id"=>"7201679264"}, {"first_name"=>"Una", "last_name"=>"Macleod", "scopus_author_id"=>"6602811891"}, {"first_name"=>"Frances S.", "last_name"=>"Mair", "scopus_author_id"=>"7004850729"}], "year"=>2014, "source"=>"PLoS ONE", "identifiers"=>{"sgr"=>"84899845483", "doi"=>"10.1371/journal.pone.0093288", "issn"=>"19326203", "pui"=>"373030926", "isbn"=>"1932-6203", "pmid"=>"24676421", "scopus"=>"2-s2.0-84899845483"}, "id"=>"375b9200-0602-3d26-9304-8ea0e521e0a3", "abstract"=>"BACKGROUND: Those with advanced heart failure (HF) experience high levels of morbidity and mortality, similar to common cancers. However, there remains evidence of inequity of access to palliative care services compared to people with cancer. This study examines patient, carer, and professional perspectives on current management of advanced HF and barriers and facilitators to improved care.\\n\\nMETHODS: Qualitative study involving semi-structured interviews and focus groups with advanced HF patients (n = 30), carers (n = 20), and professionals (n = 65). Data analysed using Normalisation Process Theory (NPT) as the underpinning conceptual framework.\\n\\nFINDINGS: Uncertainty is ubiquitous in accounts from advanced HF patients and their caregivers. This uncertainty relates to understanding of the implications of their diagnosis, appropriate treatments, and when and how to seek effective help. Health professionals agree this is a major problem but feel they lack knowledge, opportunities, or adequate support to improve the situation. Fragmented care with lack of coordination and poor communication makes life difficult. Poor understanding of the condition extends to the wider circle of carers and means that requests for help may not be perceived as legitimate, and those with advanced HF are not prioritised for social and financial supports. Patient and caregiver accounts of emergency care are uniformly poor. Managing polypharmacy and enduring concomitant side effects is a major burden, and the potential for rationalisation exists. This study has potential limitations because it was undertaken within a single geographical location within the United Kingdom.\\n\\nCONCLUSIONS: Little progress is being made to improve care experiences for those with advanced HF. Even in the terminal stages, patients and caregivers are heavily and unnecessarily burdened by health care services that are poorly coordinated and offer fragmented care. There is evidence that these poor experiences could be improved to a large extent by simple organisational rather than complex clinical mechanisms.", "link"=>"http://www.mendeley.com/research/patient-carer-professional-perspectives-barriers-facilitators-quality-care-advanced-heart-failure", "reader_count"=>37, "reader_count_by_academic_status"=>{"Unspecified"=>3, "Professor > Associate Professor"=>1, "Librarian"=>1, "Student > Doctoral Student"=>3, "Researcher"=>7, "Student > Ph. D. Student"=>4, "Student > Postgraduate"=>6, "Student > Master"=>7, "Other"=>2, "Student > Bachelor"=>1, "Lecturer"=>1, "Lecturer > Senior Lecturer"=>1}, "reader_count_by_user_role"=>{"Unspecified"=>3, "Professor > Associate Professor"=>1, "Librarian"=>1, "Student > Doctoral Student"=>3, "Researcher"=>7, "Student > Ph. D. Student"=>4, "Student > Postgraduate"=>6, "Student > Master"=>7, "Other"=>2, "Student > Bachelor"=>1, "Lecturer"=>1, "Lecturer > Senior Lecturer"=>1}, "reader_count_by_subject_area"=>{"Unspecified"=>5, "Nursing and Health Professions"=>9, "Medicine and Dentistry"=>18, "Psychology"=>2, "Social Sciences"=>3}, "reader_count_by_subdiscipline"=>{"Medicine and Dentistry"=>{"Medicine and Dentistry"=>18}, "Social Sciences"=>{"Social Sciences"=>3}, "Psychology"=>{"Psychology"=>2}, "Nursing and Health Professions"=>{"Nursing and Health Professions"=>9}, "Unspecified"=>{"Unspecified"=>5}}, "reader_count_by_country"=>{"Canada"=>1, "Argentina"=>1, "Spain"=>1}, "group_count"=>1}

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• {"id"=>"449448711098093568", "text"=>"#PLOSONE: Patient/Carer/Professional Perspectives on Barriers/Facilitators to Quality Care in Advanced Heart Failure http://t.co/OMeCCTuGtf", "created_at"=>"2014-03-28T07:31:37Z", "user"=>"FrancesMair", "user_name"=>"Frances Mair", "user_profile_image"=>"http://pbs.twimg.com/profile_images/2207838130/francesmay12_NEW2jpeg_normal.jpg"}
• {"id"=>"449449441679142912", "text"=>"RT @FrancesMair: #PLOSONE: Patient/Carer/Professional Perspectives on Barriers/Facilitators to Quality Care in Advanced Heart Failure http:…", "created_at"=>"2014-03-28T07:34:31Z", "user"=>"SusanBrowne3", "user_name"=>"Susan Browne", "user_profile_image"=>"http://pbs.twimg.com/profile_images/378800000104124025/c5336e6ed690844050f01710f8c6d1fe_normal.jpeg"}
• {"id"=>"449452075056123904", "text"=>"We need to improve care for heart failure - this research illuminates problem (another high qual qual study) http://t.co/KjEnQjGTGE", "created_at"=>"2014-03-28T07:44:59Z", "user"=>"cj_pope", "user_name"=>"Catherine Pope", "user_profile_image"=>"http://pbs.twimg.com/profile_images/3069456320/6f9de79771993256ee02aa4208493f36_normal.jpeg"}
• {"id"=>"449454969373327361", "text"=>"Urgent need to improve care for heart failure patients. Great work from @SusanBrowne3 @CarlRMay @FrancesMair et al. http://t.co/IaMj6zBLQF", "created_at"=>"2014-03-28T07:56:29Z", "user"=>"odo_kate", "user_name"=>"Kate O'Donnell", "user_profile_image"=>"http://pbs.twimg.com/profile_images/378800000177874228/a5f534e4eebde76983f50b79345e3809_normal.jpeg"}
• {"id"=>"449455186030108672", "text"=>"RT @odo_kate: Urgent need to improve care for heart failure patients. Great work from @SusanBrowne3 @CarlRMay @FrancesMair et al. http://t.…", "created_at"=>"2014-03-28T07:57:21Z", "user"=>"gppcglasgow", "user_name"=>"GPPC Glasgow", "user_profile_image"=>"http://pbs.twimg.com/profile_images/3667624950/b60dcc10c793a2574217291ef15c9073_normal.jpeg"}
• {"id"=>"449459494305939456", "text"=>"RT @odo_kate: Urgent need to improve care for heart failure patients. Great work from @SusanBrowne3 @CarlRMay @FrancesMair et al. http://t.…", "created_at"=>"2014-03-28T08:14:28Z", "user"=>"cj_pope", "user_name"=>"Catherine Pope", "user_profile_image"=>"http://pbs.twimg.com/profile_images/3069456320/6f9de79771993256ee02aa4208493f36_normal.jpeg"}
• {"id"=>"449460569826144256", "text"=>"RT @cj_pope: We need to improve care for heart failure - this research illuminates problem (another high qual qual study) http://t.co/KjEn…", "created_at"=>"2014-03-28T08:18:45Z", "user"=>"CarlRMay", "user_name"=>"Carl May", "user_profile_image"=>"http://pbs.twimg.com/profile_images/2873690447/e28ee1ea34f456eebeb050e08fe0c061_normal.jpeg"}
• {"id"=>"449464311019487232", "text"=>"“@odo_kate: Urgent need to improve care for heart failure patients. http://t.co/fStA3K67Fw” read if interested in #palliative or #eol", "created_at"=>"2014-03-28T08:33:37Z", "user"=>"FrancesMair", "user_name"=>"Frances Mair", "user_profile_image"=>"http://pbs.twimg.com/profile_images/2207838130/francesmay12_NEW2jpeg_normal.jpg"}
• {"id"=>"449475097993437184", "text"=>"RT @cj_pope: We need to improve care for heart failure - this research illuminates problem (another high qual qual study) http://t.co/KjEn…", "created_at"=>"2014-03-28T09:16:28Z", "user"=>"MaryDixonWoods", "user_name"=>"Mary Dixon-Woods", "user_profile_image"=>"http://pbs.twimg.com/profile_images/2886287212/6469964617fbde5b5fe681e12c7d723b_normal.png"}
• {"id"=>"449479965890060288", "text"=>"RT @cj_pope: We need to improve care for heart failure - this research illuminates problem (another high qual qual study) http://t.co/KjEn…", "created_at"=>"2014-03-28T09:35:49Z", "user"=>"RichardLehman1", "user_name"=>"Richard Lehman", "user_profile_image"=>"http://pbs.twimg.com/profile_images/1622675562/RLpic_normal.jpg"}
• {"id"=>"450578476056473600", "text"=>"“@cj_pope:need to improve care for heart failure -this illuminates problem http://t.co/fStA3K67Fw” youcanmakeadifference@tommyNtour read.", "created_at"=>"2014-03-31T10:20:54Z", "user"=>"FrancesMair", "user_name"=>"Frances Mair", "user_profile_image"=>"http://pbs.twimg.com/profile_images/2207838130/francesmay12_NEW2jpeg_normal.jpg"}
• {"id"=>"451357017169747968", "text"=>"Advanced heart failure patients not fully aware of implications of condition or getting enough support @SusanBrowne3 http://t.co/7IbK3Yk5L3", "created_at"=>"2014-04-02T13:54:33Z", "user"=>"gppcglasgow", "user_name"=>"GPPC Glasgow", "user_profile_image"=>"http://pbs.twimg.com/profile_images/3667624950/b60dcc10c793a2574217291ef15c9073_normal.jpeg"}
• {"id"=>"451361012835696641", "text"=>"RT @gppcglasgow: Advanced heart failure patients not fully aware of implications of condition or getting enough support @SusanBrowne3 http:…", "created_at"=>"2014-04-02T14:10:26Z", "user"=>"SusanBrowne3", "user_name"=>"Susan Browne", "user_profile_image"=>"http://pbs.twimg.com/profile_images/378800000104124025/c5336e6ed690844050f01710f8c6d1fe_normal.jpeg"}
• {"id"=>"693514691486859264", "text"=>"Very welcome #EOLC #palliative #cardiovascular and much overdue : https://t.co/s3t2QizKH6 https://t.co/OJjl2c6vum", "created_at"=>"2016-01-30T19:22:41Z", "user"=>"FrancesMair", "user_name"=>"Frances Mair", "user_profile_image"=>"http://pbs.twimg.com/profile_images/2207838130/francesmay12_NEW2jpeg_normal.jpg"}
• {"id"=>"693534689508880384", "text"=>"@drlfarrell try this link https://t.co/cz8BM9ncJ8", "created_at"=>"2016-01-30T20:42:09Z", "user"=>"KathyKastner", "user_name"=>"kathy kastner", "user_profile_image"=>"http://pbs.twimg.com/profile_images/564051822239694851/xq8ZNZgo_normal.png"}
• {"id"=>"693927501123489792", "text"=>"RT @KathyKastner: @drlfarrell try this link https://t.co/cz8BM9ncJ8", "created_at"=>"2016-01-31T22:43:03Z", "user"=>"kaceyaai25", "user_name"=>"kacey bockoven", "user_profile_image"=>"http://pbs.twimg.com/profile_images/644066742919032832/Oba053hm_normal.jpg"}
• {"id"=>"746643333708124160", "text"=>"If this type of work of interest it would be worth chatting : https://t.co/UA4TMJkUPm and https://t.co/s3t2QizKH6 https://t.co/q25eVVYUQO", "created_at"=>"2016-06-25T09:56:57Z", "user"=>"FrancesMair", "user_name"=>"Frances Mair", "user_profile_image"=>"http://pbs.twimg.com/profile_images/2207838130/francesmay12_NEW2jpeg_normal.jpg"}

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Figshare

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PMC Usage Stats | Further Information

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Relative Metric

{"start_date"=>"2014-01-01T00:00:00Z", "end_date"=>"2014-12-31T00:00:00Z", "subject_areas"=>[{"subject_area"=>"/Medicine and health sciences/Health care", "average_usage"=>[283, 456]}, {"subject_area"=>"/People and places/Population groupings", "average_usage"=>[300]}]}

F1000Prime