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Tytuł:
Needs of amyloidosis patients and their care providers: design & first results of the  A MY-NEED S research and care program.
Autorzy:
Ihne-Schubert SM; Interdisciplinary Amyloidosis Center of Northern Bavaria, University Hospital of Würzburg, Würzburg, Germany. ihne_.; Department of Internal Medicine II, Hematology, University Hospital of Würzburg, Würzburg, Germany. ihne_.; Department of Internal Medicine IV, University Hospital of Gießen and Marburg, Gießen, Germany. ihne_.; Centre for Innovation Research, Lund University, Lund, Sweden. ihne_.
Radovic T; Technical University of Applied Sciences Würzburg-Schweinfurt, Würzburg, Germany.
Fries S; Interdisciplinary Amyloidosis Center of Northern Bavaria, University Hospital of Würzburg, Würzburg, Germany.; Technical University of Applied Sciences Würzburg-Schweinfurt, Würzburg, Germany.
Frantz S; Interdisciplinary Amyloidosis Center of Northern Bavaria, University Hospital of Würzburg, Würzburg, Germany.; Comprehensive Heart Failure Center (CHFC), University and University Hospital of Würzburg, Würzburg, Germany.; Department of Internal Medicine I, Cardiology, University Hospital of Würzburg, Würzburg, Germany.
Einsele H; Interdisciplinary Amyloidosis Center of Northern Bavaria, University Hospital of Würzburg, Würzburg, Germany.; Department of Internal Medicine II, Hematology, University Hospital of Würzburg, Würzburg, Germany.
Störk S; Interdisciplinary Amyloidosis Center of Northern Bavaria, University Hospital of Würzburg, Würzburg, Germany.; Comprehensive Heart Failure Center (CHFC), University and University Hospital of Würzburg, Würzburg, Germany.; Department of Internal Medicine I, Cardiology, University Hospital of Würzburg, Würzburg, Germany.
Neuderth S; Technical University of Applied Sciences Würzburg-Schweinfurt, Würzburg, Germany.
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Źródło:
Orphanet journal of rare diseases [Orphanet J Rare Dis] 2024 Feb 10; Vol. 19 (1), pp. 58. Date of Electronic Publication: 2024 Feb 10.
Typ publikacji:
Journal Article
MeSH Terms:
Caregivers*/psychology
Amyloidosis*
Humans ; Health Personnel ; Focus Groups
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
An integrated understanding of the impact of hospital at home: a mixed-methods study to articulate and test a programme theory.
Autorzy:
Chen H; Warwick Medical School, Gibbet Hill Campus, University of Warwick, Coventry, CV4 7AL, UK.
Ignatowicz A; Murray Learning Centre, Institute of Applied Health Research, University of Birmingham, Birmingham, B15 2TTT, UK.
Skrybant M; Murray Learning Centre, Institute of Applied Health Research, University of Birmingham, Birmingham, B15 2TTT, UK.
Lasserson D; Warwick Medical School, Gibbet Hill Campus, University of Warwick, Coventry, CV4 7AL, UK. .; Department of Geriatric Medicine, Oxford University Hospitals NHS Foundation Trust, John Radcliffe Hospital, Oxford, OX3 9DU, UK. .
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Źródło:
BMC health services research [BMC Health Serv Res] 2024 Feb 02; Vol. 24 (1), pp. 163. Date of Electronic Publication: 2024 Feb 02.
Typ publikacji:
Review; Journal Article
MeSH Terms:
Caregivers*
Hospitalization*
Humans ; Patient Satisfaction ; Hospitals ; Caregiver Burden
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
Are codesigned programmes more difficult to implement? A qualitative study of staff perceptions on the implementation of a new youth mental health programme.
Autorzy:
Kehoe M; Monash University and Alfred Health, Melbourne, Victoria, Australia.
Whitehead R; Alfred Health, Melbourne, Victoria, Australia.
de Boer K; Centre for Mental Health and Brain Science, Swinburne University, Melbourne, Victoria, Australia.
Meyer D; Centre for Mental Health and Brain Science, Swinburne University, Melbourne, Victoria, Australia.
Hopkins L; Alfred Health, Melbourne, Victoria, Australia.
Nedeljkovic M; Centre for Mental Health and Brain Science, Swinburne University, Melbourne, Victoria, Australia.
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Źródło:
Health expectations : an international journal of public participation in health care and health policy [Health Expect] 2024 Feb; Vol. 27 (1), pp. e13989.
Typ publikacji:
Journal Article
MeSH Terms:
Mental Health*
Caregivers*
Child ; Humans ; Adolescent ; Qualitative Research
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
Mental Health Outcomes of Immigrant- and US-Born Caregivers: California Health Interview Survey, 2019-2020.
Autorzy:
Zhou S; Sasha Zhou is with the Department of Public Health, Wayne State University, Detroit, MI. Minakshi Raj is with and Babatope Ayokunle Ogunjesa is a doctoral student in the College of Applied Health Sciences, University of Illinois, Urbana-Champaign.
Ogunjesa BA; Sasha Zhou is with the Department of Public Health, Wayne State University, Detroit, MI. Minakshi Raj is with and Babatope Ayokunle Ogunjesa is a doctoral student in the College of Applied Health Sciences, University of Illinois, Urbana-Champaign.
Raj M; Sasha Zhou is with the Department of Public Health, Wayne State University, Detroit, MI. Minakshi Raj is with and Babatope Ayokunle Ogunjesa is a doctoral student in the College of Applied Health Sciences, University of Illinois, Urbana-Champaign.
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Źródło:
American journal of public health [Am J Public Health] 2024 Feb; Vol. 114 (S2), pp. 189-199.
Typ publikacji:
Journal Article
MeSH Terms:
Caregivers*/psychology
Emigrants and Immigrants*
Adult ; Humans ; Cross-Sectional Studies ; Outcome Assessment, Health Care ; California
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
Supporting Caregivers Remotely During a Pandemic: Comparison of WHO Caregiver Skills Training Delivered Online Versus in Person in Public Health Settings in Italy.
Autorzy:
Ferrante C; Department of Psychology, University of Milan-Bicocca, Piazza dell'Ateneo Nuovo 1, 20126, Milan, Italy.
Sorgato P; Department of Psychology, University of Milan-Bicocca, Piazza dell'Ateneo Nuovo 1, 20126, Milan, Italy.
Fioravanti M; Department of Psychology, University of Milan-Bicocca, Piazza dell'Ateneo Nuovo 1, 20126, Milan, Italy.
Pacione L; Department of Mental Health and Substance Use, World Health Organization, Geneva, Switzerland.
Arduino GM; Centro Autismo e Sindrome di Asperger, Ospedale Regina Montis Regalis Mondovì, Mondovì (Cuneo), Italy.
Ghersi S; Fondazione Paideia, Turin, Italy.
Scattoni ML; Istituto Superiore di Sanità, Rome, Italy.
Servili C; Department of Mental Health and Substance Use, World Health Organization, Geneva, Switzerland.
Salomone E; Department of Psychology, University of Milan-Bicocca, Piazza dell'Ateneo Nuovo 1, 20126, Milan, Italy. .; Department of Mental Health and Substance Use, World Health Organization, Geneva, Switzerland. .
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Corporate Authors:
CST Italy Team
WHO CST Team
Źródło:
Journal of autism and developmental disorders [J Autism Dev Disord] 2024 Feb; Vol. 54 (2), pp. 765-784. Date of Electronic Publication: 2022 Dec 01.
Typ publikacji:
Journal Article
MeSH Terms:
Caregivers*/psychology
Autism Spectrum Disorder*
Humans ; Quality of Life ; Pandemics ; Public Health ; Italy ; World Health Organization
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
Depression Negatively Impacts Dyadic Quality of Life Following Neuro-ICU Admission: A Prospective Study of Cognitively Intact Patients and Caregivers.
Autorzy:
Quinn PA; Center for Health Outcomes and Interdisciplinary Research, Massachusetts General Hospital, One Bowdoin Square, Suite 100, Boston, MA, USA.; Harvard University, Cambridge, MA, USA.
Mace RA; Center for Health Outcomes and Interdisciplinary Research, Massachusetts General Hospital, One Bowdoin Square, Suite 100, Boston, MA, USA.; Harvard Medical School, Boston, MA, USA.
Presciutti A; Center for Health Outcomes and Interdisciplinary Research, Massachusetts General Hospital, One Bowdoin Square, Suite 100, Boston, MA, USA.; Department of Psychology, University of Colorado Denver, Denver, CO, USA.
Vranceanu AM; Center for Health Outcomes and Interdisciplinary Research, Massachusetts General Hospital, One Bowdoin Square, Suite 100, Boston, MA, USA. .; Harvard Medical School, Boston, MA, USA. .
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Źródło:
International journal of behavioral medicine [Int J Behav Med] 2024 Feb; Vol. 31 (1), pp. 97-108. Date of Electronic Publication: 2023 Feb 08.
Typ publikacji:
Observational Study; Journal Article
MeSH Terms:
Depression*/psychology
Caregivers*/psychology
Humans ; Quality of Life/psychology ; Prospective Studies ; Aftercare ; Patient Discharge ; Intensive Care Units
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
A web-based psychological support program for caregivers of children with rare chronic diseases: a randomized controlled trial.
Autorzy:
Tutus D; Department of Child and Adolescent Psychiatry/Psychotherapy, Ulm University, Steinhoevelstr, 5, 89075, Ulm, Germany. .
Niemitz M; Department of Child and Adolescent Psychiatry/Psychotherapy, Ulm University, Steinhoevelstr, 5, 89075, Ulm, Germany.
Plener PL; Department of Child and Adolescent Psychiatry/Psychotherapy, Ulm University, Steinhoevelstr, 5, 89075, Ulm, Germany.; Department of Child and Adolescent Psychiatry, Medical University of Vienna, Vienna, Austria.
Fegert JM; Department of Child and Adolescent Psychiatry/Psychotherapy, Ulm University, Steinhoevelstr, 5, 89075, Ulm, Germany.
Lehmann C; Department of Paediatric Respiratory Medicine, Immunology and Critical Care Medicine, Charité University Medicine Berlin, Berlin, Germany.
Weiss C; Department of Paediatric Respiratory Medicine, Immunology and Critical Care Medicine, Charité University Medicine Berlin, Berlin, Germany.
Knaevelsrud C; Department of Education and Psychology, Free University of Berlin, Berlin, Germany.
Biehl L; German Alliance of Chronic Rare Diseases, Berlin, Germany.
Rassenhofer M; Department of Child and Adolescent Psychiatry/Psychotherapy, Ulm University, Steinhoevelstr, 5, 89075, Ulm, Germany.
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Źródło:
Orphanet journal of rare diseases [Orphanet J Rare Dis] 2024 Jan 27; Vol. 19 (1), pp. 27. Date of Electronic Publication: 2024 Jan 27.
Typ publikacji:
Randomized Controlled Trial; Journal Article
MeSH Terms:
Caregivers*/psychology
Cognitive Behavioral Therapy*/methods
Child ; Humans ; Rare Diseases ; Depression ; Quality of Life ; Chronic Disease ; Disease Progression ; Internet
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
Lessons from two series by physicians and caregivers' self-reported data in DDX3X-related disorders.
Autorzy:
Ruault V; Genetic Department, Montpellier University, INSERM Unit 1183, Montpellier, France.; Reference Center for Rare Diseases Developmental Anomaly and Malformative Syndromes, Genetics Department, Montpellier Hospital, Montpellier, France.
Burger P; Institute of Genetics and Molecular and Cellular Biology (IGBMC), Université de Strasbourg, INSERM U1258, CNRS UMR7104, Illkirch, France.
Gradels-Hauguel J; Center for Rare Psychiatric Disorders - GHU Paris Psychiatrie et Neurosciences - Paris - France APHP, GHU Sainte Anne, Paris, France.
Ruiz N; Genetic Department, Montpellier University, INSERM Unit 1183, Montpellier, France.; Reference Center for Rare Diseases Developmental Anomaly and Malformative Syndromes, Genetics Department, Montpellier Hospital, Montpellier, France.
Jamra RA; Institute of Human Genetics, University of Leipzig Medical Center, Leipzig, Germany.
Afenjar A; Département de Génétique Paris, Centre de Référence Malformations et maladies congénitales du cervelet et déficiences intellectuelles de causes rares, APHP, Sorbonne Université, Paris, France.
Alembik Y; Service de Génétique Médicale, Institut de Génétique Médicale d'Alsace, Hôpitaux Universitaires de Strasbourg, Strasbourg, France.
Alessandri JL; CHU La Réunion, Service de génétique, Saint Denis, France.
Arpin S; Genetics Department, University Hospital, UMR1253 iBrain INSERM, University of Tours, Tours, France.
Barcia G; Service de Médecine Génomique des Maladies Rares, Hôpital Necker - Enfants Malades, Assistance Publique-Hôpitaux de Paris, Paris, France.
Bendová Š; Department of Biology and Medical Genetics, Charles University Second Faculty of Medicine and University Hospital Motol, Prague, Czech Republic.
Bruel AL; Unité Fonctionnelle Innovation en Diagnostic Génomique des maladies rares, CHU Dijon Bourgogne, Dijon, France.; UFR Des Sciences de Santé, INSERM-Université de Bourgogne UMR1231 GAD 'Génétique des Anomalies du Développement', FHUTRANSLAD, Dijon, France.
Charles P; APHP La Pitié Salpétrière, Paris, France.
Chatron N; Department of Medical Genetics, University Hospital of Lyon and Claude Bernard Lyon I University, Lyon, France.; Pathophysiology and Genetics of Neuron and Muscle (PNMG), UCBL, CNRS UMR5261 - INSERM U1315, Lyon, France.
Chopra M; Department of Neurology, Rosamund Stone Zander Translational Neuroscience Center, Boston Children's Hospital, Boston, Massachusetts, USA.; Genetic Department, Harvard Medical School, Boston, Massachusetts, USA.
Conrad S; Genetic Department, CHU Nantes, Service de Génétique, Nantes, France.
Daire VC; Service de Médecine Génomique des Maladies Rares, Hôpital Necker - Enfants Malades, Assistance Publique-Hôpitaux de Paris, Paris, France.
Cospain A; Genetic Department, CHU Rennes, Service de Génétique, CLAD Ouest CRDI, Rennes, France.
Coubes C; Genetic Department, Montpellier University, INSERM Unit 1183, Montpellier, France.; Reference Center for Rare Diseases Developmental Anomaly and Malformative Syndromes, Genetics Department, Montpellier Hospital, Montpellier, France.
Coursimault J; Department of Genetics and Reference Center for Developmental Disorders, University of Rouen Normandie, Inserm U1245, CHU Rouen, Rouen, France.
Delahaye-Duriez A; Medical Genomics and Clinical Genetics Unit, AP-HP, Hôpital Jean Verdier, Bondy, France.; Genetic Department, UFR SMBH, Université Sorbonne Paris Nord, Paris, France.; Genetic Department, Inserm 1141 NeuroDiderot, Paris, France.
Doco M; Genetic Department, CHU Nantes, Service de Génétique, Nantes, France.; Centre Hospitalier Universitaire de Reims, Pôle de Biologie Médicale et Pathologie, Service de Génétique, Reims, France.
Dufour W; Department of Medical Genetics, University Hospital of Lyon and Claude Bernard Lyon I University, Lyon, France.
Durand B; Service de Génétique Médicale, Institut de Génétique Médicale d'Alsace, Hôpitaux Universitaires de Strasbourg, Strasbourg, France.
Engel C; Oncobiologie Génétique Bioinformatique, PC BIO, CHU Besançon, Besançon, France.
Faivre L; Unité Fonctionnelle Innovation en Diagnostic Génomique des maladies rares, CHU Dijon Bourgogne, Dijon, France.; Centre de Génétique et Centre de référence maladies rares « Anomalies du Développement et Syndromes Malformatifs », FHU TRANSLAD, Hôpital d'Enfants, CHU Dijon, Dijon, France.
Ferroul F; CHU La Réunion, Service de génétique, Saint Denis, France.
Fradin M; Genetic Department, CHU Rennes, Service de Génétique, CLAD Ouest CRDI, Rennes, France.; CH Saint Brieuc, Service de Génétique, Saint Brieux, France.
Frenkiel H; Xtraordinaire Association, Paris, France.
Fusco C; Child Neurology and Psychiatry Unit, Azienda USL-IRCCS di Reggio Emilia, Reggio Emilia, Italy.
Garavelli L; Medical Genetics Unit, Azienda USL-IRCCS di Reggio Emilia, Reggio Emilia, Italy.
Garde A; Unité Fonctionnelle Innovation en Diagnostic Génomique des maladies rares, CHU Dijon Bourgogne, Dijon, France.; Centre de Génétique et Centre de référence maladies rares « Anomalies du Développement et Syndromes Malformatifs », FHU TRANSLAD, Hôpital d'Enfants, CHU Dijon, Dijon, France.
Gerard B; Service de Génétique Médicale, Institut de Génétique Médicale d'Alsace, Hôpitaux Universitaires de Strasbourg, Strasbourg, France.
Germanaud D; Genetic Department, CEA Paris-Saclay, NeuroSpin, Gif-sur-Yvette, France.; Département de Génétique, Centre de référence Déficiences intellectuelles de causes rares, Assistance publique-Hopitaux de Paris (AP-HP), Hopital Robert-Debré, Paris, France.
Goujon L; Genetic Department, CEA Paris-Saclay, NeuroSpin, Gif-sur-Yvette, France.; Département de Génétique, Centre de référence Déficiences intellectuelles de causes rares, Assistance publique-Hopitaux de Paris (AP-HP), Hopital Robert-Debré, Paris, France.
Gouronc A; Service de Génétique Médicale, Institut de Génétique Médicale d'Alsace, Hôpitaux Universitaires de Strasbourg, Strasbourg, France.
Ginglinger E; Génétique médicale GHRMSA, Hopital Emile Muller, Mulhouse, France.
Goldenberg A; Department of Genetics and Reference Center for Developmental Disorders, University of Rouen Normandie, Inserm U1245, CHU Rouen, Rouen, France.
Hancarova M; Department of Biology and Medical Genetics, Charles University Second Faculty of Medicine and University Hospital Motol, Prague, Czech Republic.
Havlovicová M; Department of Biology and Medical Genetics, Charles University Second Faculty of Medicine and University Hospital Motol, Prague, Czech Republic.
Heron D; APHP Trousseau, Paris, France.
Isidor B; Genetic Department, CHU Nantes, Service de Génétique, Nantes, France.
Marçais NJ; Genetic Department, CHU Rennes, Service de Génétique, CLAD Ouest CRDI, Rennes, France.
Keren B; Département de Génétique, Centre de Référence Déficiences Intellectuelles de Causes Rares, APHP Sorbonne Université, Paris, France.
Koch-Hogrebe M; Institute of Human Genetics, Medical Faculty, University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany.
Kuentz P; UFR Des Sciences de Santé, INSERM-Université de Bourgogne UMR1231 GAD 'Génétique des Anomalies du Développement', FHUTRANSLAD, Dijon, France.; Oncobiologie Génétique Bioinformatique, PC BIO, CHU Besançon, Besançon, France.
Lamure V; Genetic Department, UFR SMBH, Université Sorbonne Paris Nord, Paris, France.
Lebre AS; Centre Hospitalier Universitaire de Reims, Pôle de Biologie Médicale et Pathologie, Service de Génétique, Reims, France.; Institute of Psychiatry and Neuroscience of Paris (IPNP), INSERM U1266, Université Paris Cité, Paris, France.
Lecoquierre F; Department of Genetics and Reference Center for Developmental Disorders, University of Rouen Normandie, Inserm U1245, CHU Rouen, Rouen, France.
Lehman N; Genetic Department, Montpellier University, INSERM Unit 1183, Montpellier, France.; Reference Center for Rare Diseases Developmental Anomaly and Malformative Syndromes, Genetics Department, Montpellier Hospital, Montpellier, France.
Lesca G; Department of Medical Genetics, University Hospital of Lyon and Claude Bernard Lyon I University, Lyon, France.; Pathophysiology and Genetics of Neuron and Muscle (PNMG), UCBL, CNRS UMR5261 - INSERM U1315, Lyon, France.
Lyonnet S; Service de Médecine Génomique des Maladies Rares, Hôpital Necker - Enfants Malades, Assistance Publique-Hôpitaux de Paris, Paris, France.; Laboratoire Embryologie et Génétique des Malformations, Université Paris Cité, INSERM, IHU Imagine - Institut des maladies génétiques, Paris, France.
Martin D; Xtraordinaire Association, Paris, France.
Mignot C; Département de Génétique, Centre de Référence Déficiences Intellectuelles de Causes Rares, APHP Sorbonne Université, Paris, France.
Neuhann TM; Genetic Department, Medizinisch Genetisches Zentrum, Munich, Germany.
Nicolas G; Department of Genetics and Reference Center for Developmental Disorders, University of Rouen Normandie, Inserm U1245, CHU Rouen, Rouen, France.
Nizon M; Genetic Department, CHU Nantes, Service de Génétique, Nantes, France.
Petit F; Genetic Department, CHU Lille, Clinique de Génétique Guy Fontaine, Lille, France.
Philippe C; Unité Fonctionnelle Innovation en Diagnostic Génomique des maladies rares, CHU Dijon Bourgogne, Dijon, France.; UFR Des Sciences de Santé, INSERM-Université de Bourgogne UMR1231 GAD 'Génétique des Anomalies du Développement', FHUTRANSLAD, Dijon, France.
Piton A; Service de Génétique Médicale, Institut de Génétique Médicale d'Alsace, Hôpitaux Universitaires de Strasbourg, Strasbourg, France.
Pollazzon M; Medical Genetics Unit, Azienda USL-IRCCS di Reggio Emilia, Reggio Emilia, Italy.
Prchalová D; Department of Biology and Medical Genetics, Charles University Second Faculty of Medicine and University Hospital Motol, Prague, Czech Republic.
Putoux A; Department of Medical Genetics, University Hospital of Lyon and Claude Bernard Lyon I University, Lyon, France.; INSERM U1028, CNRS UMR5292, Centre de Recherche en Neurosciences de Lyon, GENDEV Team, Université Claude Bernard Lyon 1, Bron, France.
Rio M; Service de Médecine Génomique des Maladies Rares, Hôpital Necker - Enfants Malades, Assistance Publique-Hôpitaux de Paris, Paris, France.
Rondeau S; Service de Médecine Génomique des Maladies Rares, Hôpital Necker - Enfants Malades, Assistance Publique-Hôpitaux de Paris, Paris, France.
Rossi M; Department of Medical Genetics, University Hospital of Lyon and Claude Bernard Lyon I University, Lyon, France.; INSERM U1028, CNRS UMR5292, Centre de Recherche en Neurosciences de Lyon, GENDEV Team, Université Claude Bernard Lyon 1, Bron, France.
Sabbagh Q; Genetic Department, Montpellier University, INSERM Unit 1183, Montpellier, France.; Reference Center for Rare Diseases Developmental Anomaly and Malformative Syndromes, Genetics Department, Montpellier Hospital, Montpellier, France.
Saugier-Veber P; Department of Genetics and Reference Center for Developmental Disorders, University of Rouen Normandie, Inserm U1245, CHU Rouen, Rouen, France.
Schmetz A; Institute of Human Genetics, Medical Faculty, University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany.
Steffann J; Service de Médecine Génomique des Maladies Rares, Hôpital Necker - Enfants Malades, Assistance Publique-Hôpitaux de Paris, Paris, France.
Thauvin-Robinet C; Unité Fonctionnelle Innovation en Diagnostic Génomique des maladies rares, CHU Dijon Bourgogne, Dijon, France.; UFR Des Sciences de Santé, INSERM-Université de Bourgogne UMR1231 GAD 'Génétique des Anomalies du Développement', FHUTRANSLAD, Dijon, France.; Centre de Génétique et Centre de référence maladies rares « Anomalies du Développement et Syndromes Malformatifs », FHU TRANSLAD, Hôpital d'Enfants, CHU Dijon, Dijon, France.
Toutain A; Genetics Department, University Hospital, UMR1253 iBrain INSERM, University of Tours, Tours, France.
Them FTM; Unité Fonctionnelle Innovation en Diagnostic Génomique des maladies rares, CHU Dijon Bourgogne, Dijon, France.; UFR Des Sciences de Santé, INSERM-Université de Bourgogne UMR1231 GAD 'Génétique des Anomalies du Développement', FHUTRANSLAD, Dijon, France.
Trimarchi G; Medical Genetics Unit, Azienda USL-IRCCS di Reggio Emilia, Reggio Emilia, Italy.
Vincent M; Genetic Department, CHU Nantes, Service de Génétique, Nantes, France.
Vlčková M; Department of Biology and Medical Genetics, Charles University Second Faculty of Medicine and University Hospital Motol, Prague, Czech Republic.
Wieczorek D; Institute of Human Genetics, Medical Faculty, University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany.
Willems M; Genetic Department, Montpellier University, INSERM Unit 1183, Montpellier, France.; Reference Center for Rare Diseases Developmental Anomaly and Malformative Syndromes, Genetics Department, Montpellier Hospital, Montpellier, France.
Yauy K; Genetic Department, Montpellier University, INSERM Unit 1183, Montpellier, France.; Reference Center for Rare Diseases Developmental Anomaly and Malformative Syndromes, Genetics Department, Montpellier Hospital, Montpellier, France.
Zelinová M; Department of Biology and Medical Genetics, Charles University Second Faculty of Medicine and University Hospital Motol, Prague, Czech Republic.
Ziegler A; Genetic Department, Service de Génétique, CHU d'Angers, Angers Cedex 9, France.
Chaumette B; Center for Rare Psychiatric Disorders - GHU Paris Psychiatrie et Neurosciences - Paris - France APHP, GHU Sainte Anne, Paris, France.; Institute of Psychiatry and Neuroscience of Paris, Université Paris Cité, INSERM U1266, Paris, France.; Department of Psychiatry, McGill University, Montreal, Quebec, Canada.
Sadikovic B; Department of Pathology and Laboratory Medicine, Western University, London, Ontario, Canada.; Verspeeten Clinical Genome Centre, London Health Sciences Centre, London, Ontario, Canada.
Mandel JL; Institute of Genetics and Molecular and Cellular Biology (IGBMC), Université de Strasbourg, INSERM U1258, CNRS UMR7104, Illkirch, France.; Genetic Department, University of Strasbourg Institute for Advanced Studies (USIAS), Strasbourg, France.
Geneviève D; Genetic Department, Montpellier University, INSERM Unit 1183, Montpellier, France.; Reference Center for Rare Diseases Developmental Anomaly and Malformative Syndromes, Genetics Department, Montpellier Hospital, Montpellier, France.
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Corporate Authors:
Xtraordinaire; Xtraordinaire Association, Paris, France.
GENIDA Project; Institute of Genetics and Molecular and Cellular Biology (IGBMC), Université de Strasbourg, INSERM U1258, CNRS UMR7104, Illkirch, France.
Źródło:
Molecular genetics & genomic medicine [Mol Genet Genomic Med] 2024 Jan; Vol. 12 (1), pp. e2363.
Typ publikacji:
Journal Article
MeSH Terms:
Attention Deficit Disorder with Hyperactivity*/genetics
Attention Deficit Disorder with Hyperactivity*/therapy
Caregivers*
Child, Preschool ; Humans ; DEAD-box RNA Helicases ; Self Report ; Infant
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
Exploring the needs and coping strategies of family caregivers taking care of dying patients at home: a field study.
Autorzy:
Zhang X; School of Nursing, Capital Medical University, 10 Xitoutiao, Youanmen, Fengtai District, Beijing, 100069, China.
Xu T; Wenzhou Medical University, University Town, Chashan, Wenzhou, Zhejiang, 325035, China.
Qin Y; Hospice & Palliative Care Department Ward of Beijing Haidian Hospital, Beijing, 100080, China.
Wang M; Puhuangyu community health center, Fengtai District, Beijing, 100079, China.
Li Z; School of Nursing, Capital Medical University, 10 Xitoutiao, Youanmen, Fengtai District, Beijing, 100069, China.
Song J; School of Nursing, Capital Medical University, 10 Xitoutiao, Youanmen, Fengtai District, Beijing, 100069, China.
Tang Q; School of Nursing, Capital Medical University, 10 Xitoutiao, Youanmen, Fengtai District, Beijing, 100069, China.
Wang Z; School of Nursing, Capital Medical University, 10 Xitoutiao, Youanmen, Fengtai District, Beijing, 100069, China.
Xu L; School of Nursing, Capital Medical University, 10 Xitoutiao, Youanmen, Fengtai District, Beijing, 100069, China.
Wu L; Puhuangyu community health center, Fengtai District, Beijing, 100079, China.
Yue P; School of Nursing, Capital Medical University, 10 Xitoutiao, Youanmen, Fengtai District, Beijing, 100069, China. .
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Źródło:
BMC palliative care [BMC Palliat Care] 2023 Dec 12; Vol. 22 (1), pp. 196. Date of Electronic Publication: 2023 Dec 12.
Typ publikacji:
Journal Article
MeSH Terms:
Caregivers*
Home Care Services*
Humans ; Quality of Life ; Palliative Care/methods
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
Caring for a home-dwelling older parent with mental health problems: a narrative analysis of family caregivers' experiences.
Autorzy:
Sunde OS; Faculty of Health and Social Sciences, Western Norway University of Applied Sciences, Førde, Norway.
Alteren J; Health Science, Faculty of Health Sciences and Social Care, Molde University College Specialized University in Logistics, Molde, Norway.
Ytrehus S; Health Science, Faculty of Health and Social Sciences, Western Norway University of Applied Sciences, Førde, Norway.
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Źródło:
International journal of qualitative studies on health and well-being [Int J Qual Stud Health Well-being] 2023 Dec; Vol. 18 (1), pp. 2236373.
Typ publikacji:
Journal Article
MeSH Terms:
Caregivers*/psychology
Mental Health*
Humans ; Aged ; Stress, Psychological/psychology ; Parents ; Family/psychology
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknieSzczegóły
Tytuł:
Caregiving Preparedness and Caregiver Burden in Omani Family Caregivers for Patients with Acquired Brain Injury.
Autorzy:
Roslin H; Department of Adult Health & Critical Care, College of Nursing, Sultan Qaboos University, Muscat, Oman.
Muliira JK; School of Nursing, Ball State University, Muncie, USA.
Lazarus ER; Department of Adult Health & Critical Care, College of Nursing, Sultan Qaboos University, Muscat, Oman.
Jacob D; Department of Adult Health & Critical Care, College of Nursing, Sultan Qaboos University, Muscat, Oman.
Al-Habsi W; Directorate General of Khoula Hospital, Ministry of Health, Muscat, Oman.
Al-Musallami F; Directorate General of Khoula Hospital, Ministry of Health, Muscat, Oman.
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Źródło:
Sultan Qaboos University medical journal [Sultan Qaboos Univ Med J] 2023 Nov; Vol. 23 (4), pp. 493-501. Date of Electronic Publication: 2023 Nov 30.
Typ publikacji:
Observational Study; Journal Article
MeSH Terms:
Caregivers*/psychology
Brain Injuries*/therapy
Humans ; Female ; Adult ; Middle Aged ; Male ; Caregiver Burden ; Aftercare ; Patient Discharge
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknieSzczegóły
Tytuł:
Predictors of Quality of Life Among Omani Family Caregivers of Patients With Traumatic Brain Injury.
Autorzy:
Jacob D; Department of Adult Health & Critical Care, College of Nursing, Sultan Qaboos University, Muscat, Oman.
Muliira JK; School of Nursing, Ball State University, Muncie, USA.
Lazarus ER; Department of Adult Health & Critical Care, College of Nursing, Sultan Qaboos University, Muscat, Oman.
Roslin H; Department of Adult Health & Critical Care, College of Nursing, Sultan Qaboos University, Muscat, Oman.
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Źródło:
Sultan Qaboos University medical journal [Sultan Qaboos Univ Med J] 2023 Nov; Vol. 23 (4), pp. 463-471. Date of Electronic Publication: 2023 Nov 30.
Typ publikacji:
Journal Article
MeSH Terms:
Brain Injuries, Traumatic*/therapy
Caregivers*/psychology
Quality of Life*/psychology
Humans ; Aftercare ; Cross-Sectional Studies ; Patient Discharge
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknieSzczegóły
Tytuł:
Feasibility of caregiver-administered anthropometric measurements of children under age 5: evidence from Zambia.
Autorzy:
Fink G; Swiss Tropical and Public Health Institute and University of Basel, Kreuzstrasse 2, 4123, Allschwil, Basel, Switzerland. .
Chembe M; Innovations for Poverty Action Zambia, Lusaka, Zambia.
Henderson S; Innovations for Poverty Action, Washington, DC, USA.
Rockers PC; School of Public Health, Boston University, Boston, USA.
Parkerson D; Innovations for Poverty Action, New Haven, USA.
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Źródło:
Population health metrics [Popul Health Metr] 2024 Jan 31; Vol. 22 (1), pp. 2. Date of Electronic Publication: 2024 Jan 31.
Typ publikacji:
Clinical Trial; Journal Article
MeSH Terms:
Caregivers*
Thinness*
Child, Preschool ; Humans ; Infant ; Feasibility Studies ; Nutritional Status ; Pandemics ; Reproducibility of Results ; Zambia
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
Factors associated with memory of informal caregivers: A scoping review protocol.
Autorzy:
Wang D; School of Nursing, Duke University, Durham, NC, United States of America.
Rushton S; School of Nursing, Duke University, Durham, NC, United States of America.
Ledbetter L; Duke University Medical Center & Archives, School of Medicine, Durham, NC, United States of America.
Graton M; Duke University Medical Center & Archives, School of Medicine, Durham, NC, United States of America.
Ramos K; Des Moines University, West Des Moines, IA, United States of America.
Hendrix CC; School of Nursing, Duke University, Durham, NC, United States of America.; GRECC Durham Veterans Affairs Medical Center, Durham, NC, United States of America.
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Źródło:
PloS one [PLoS One] 2024 Jan 26; Vol. 19 (1), pp. e0295449. Date of Electronic Publication: 2024 Jan 26 (Print Publication: 2024).
Typ publikacji:
Journal Article
MeSH Terms:
Caregivers*/psychology
Memory*
Adult ; Humans ; Chronic Disease ; Systematic Reviews as Topic
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
Exploring pathways to optimise care in malignant bowel obstruction (EPOC): Protocol for a three-phase critical realist approach to theory-led intervention development for shared decision-making.
Autorzy:
Bravington A; Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, United Kingdom.
Boland JW; Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, United Kingdom.
Greenley S; Hull York Medical School, University of Hull, Hull, United Kingdom.
Lind M; Hull York Medical School, University of Hull, Hull, United Kingdom.
Murtagh FEM; Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, United Kingdom.
Patterson M; Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, United Kingdom.
Pearson M; Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, United Kingdom.
Johnson MJ; Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, United Kingdom.
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Źródło:
PloS one [PLoS One] 2024 Jan 25; Vol. 19 (1), pp. e0294218. Date of Electronic Publication: 2024 Jan 25 (Print Publication: 2024).
Typ publikacji:
Journal Article
MeSH Terms:
Decision Making, Shared*
Caregivers*
Humans ; Communication
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
Comparison of anxiety and depression levels in caregivers of patients with percutaneous endoscopic gastrostomy for home enteral tube feeding against other enteral nutrition methods.
Autorzy:
Özceylan G; Tekirdağ DRIFC State Hospital palliative service, TekİrdaĞ, Turkey. .
Findik İ; Tekirdağ DRIFC State Hospital palliative service, TekİrdaĞ, Turkey.
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Źródło:
BMC palliative care [BMC Palliat Care] 2024 Jan 22; Vol. 23 (1), pp. 20. Date of Electronic Publication: 2024 Jan 22.
Typ publikacji:
Journal Article
MeSH Terms:
Enteral Nutrition*
Caregivers*
Humans ; Gastrostomy ; Anxiety/therapy ; Caregiver Burden
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
Experiences of hospital care for people with multiple long-term conditions: a scoping review of qualitative research.
Autorzy:
Bellass S; Department of Sport and Exercise Sciences, Manchester Metropolitan University, Manchester, UK. .
Scharf T; Population Health Sciences Institute, Faculty of Medical Sciences, Newcastle University, Newcastle Upon Tyne, UK.
Errington L; School of Biomedical Nutritional and Sport Sciences, Newcastle University, Newcastle Upon Tyne, UK.
Bowden Davies K; Department of Sport and Exercise Sciences, Manchester Metropolitan University, Manchester, UK.
Robinson S; AGE Research Group, Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University, Newcastle Upon Tyne, UK.; NIHR Newcastle Biomedical Research Centre, Newcastle University, Newcastle Upon Tyne NHS Foundation Trust and Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Newcastle Upon Tyne, UK.
Runacres A; Department of Sport and Exercise Sciences, Manchester Metropolitan University, Manchester, UK.
Ventre J; NIHR ARC Greater Manchester, School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK.
Witham MD; AGE Research Group, Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University, Newcastle Upon Tyne, UK.; NIHR Newcastle Biomedical Research Centre, Newcastle University, Newcastle Upon Tyne NHS Foundation Trust and Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Newcastle Upon Tyne, UK.
Sayer AA; AGE Research Group, Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University, Newcastle Upon Tyne, UK.; NIHR Newcastle Biomedical Research Centre, Newcastle University, Newcastle Upon Tyne NHS Foundation Trust and Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Newcastle Upon Tyne, UK.
Cooper R; AGE Research Group, Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University, Newcastle Upon Tyne, UK.; NIHR Newcastle Biomedical Research Centre, Newcastle University, Newcastle Upon Tyne NHS Foundation Trust and Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Newcastle Upon Tyne, UK.
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Źródło:
BMC medicine [BMC Med] 2024 Jan 17; Vol. 22 (1), pp. 25. Date of Electronic Publication: 2024 Jan 17.
Typ publikacji:
Review; Journal Article; Research Support, Non-U.S. Gov't
MeSH Terms:
Caregivers*
Health Personnel*
Humans ; Delivery of Health Care ; Qualitative Research ; Hospitals
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
Family caregivers' preferences for support when caring for a family member with cancer in late palliative phase who wish to die at home - a grounded theory study.
Autorzy:
Nysaeter TM; Department of Health and Nursing Sciences, Inland Norway University of Applied Sciences, Elverum, 2400, Norway. .
Olsson C; Department of Health Sciences, Karlstad University SE, Karlstad, Sweden.; Department of Bachelor Education in Nursing, Lovisenberg Diaconal University College, Oslo, Norway.
Sandsdalen T; Department of Health and Nursing Sciences, Inland Norway University of Applied Sciences, Elverum, 2400, Norway.
Hov R; Department of Health and Nursing Sciences, Inland Norway University of Applied Sciences, Elverum, 2400, Norway.; Centre for Development of Institutional and Home Care Services (USHT), Inland (Hedmark), Hamar, Norway.
Larsson M; Department of Health Sciences, Karlstad University SE, Karlstad, Sweden.
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Źródło:
BMC palliative care [BMC Palliat Care] 2024 Jan 11; Vol. 23 (1), pp. 15. Date of Electronic Publication: 2024 Jan 11.
Typ publikacji:
Journal Article
MeSH Terms:
Caregivers*
Neoplasms*/therapy
Adult ; Humans ; Grounded Theory ; Family ; Death ; Palliative Care/methods ; Qualitative Research
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
Cat caregivers' perceptions, motivations, and behaviours for feeding treats: A cross sectional study.
Autorzy:
Nielson SA; Department of Population Medicine, Ontario Veterinary College, University of Guelph, Guelph, Ontario, Canada.
Khosa DK; Department of Population Medicine, Ontario Veterinary College, University of Guelph, Guelph, Ontario, Canada.
Verbrugghe A; Department of Clinical Studies, Ontario Veterinary College, University of Guelph, Guelph, Ontario, Canada.
Clow KM; Department of Population Medicine, Ontario Veterinary College, University of Guelph, Guelph, Ontario, Canada.
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Źródło:
PloS one [PLoS One] 2024 Jan 10; Vol. 19 (1), pp. e0296011. Date of Electronic Publication: 2024 Jan 10 (Print Publication: 2024).
Typ publikacji:
Journal Article
MeSH Terms:
Motivation*
Caregivers*
Animals ; Humans ; Cross-Sectional Studies ; Tomography, X-Ray Computed ; Nutrients
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
Tytuł:
Challenges with pediatric antiretroviral therapy administration: Qualitative perspectives from caregivers and HIV providers in Kenya.
Autorzy:
Sliefert M; University of Kansas Medical Center, Kansas City, KS, United States of America.
Maloba M; Global Health Innovations, Nairobi, Kenya.
Wexler C; University of Kansas Medical Center, Kansas City, KS, United States of America.
Were F; University of Nairobi, Nairobi, Kenya.
Mbithi Y; University of Nairobi, Nairobi, Kenya.
Mugendi G; University of Nairobi, Nairobi, Kenya.
Maliski E; Oak Therapeutics, Lawrence, KS, United States of America.
Nicolay Z; Oak Therapeutics, Lawrence, KS, United States of America.
Thomas G; University of Kansas, Lawrence, KS, United States of America.
Kale S; Global Health Innovations, Nairobi, Kenya.
Maosa N; Global Health Innovations, Nairobi, Kenya.
Finocchario-Kessler S; University of Kansas Medical Center, Kansas City, KS, United States of America.
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Źródło:
PloS one [PLoS One] 2024 Jan 09; Vol. 19 (1), pp. e0296713. Date of Electronic Publication: 2024 Jan 09 (Print Publication: 2024).
Typ publikacji:
Journal Article
MeSH Terms:
Caregivers*
Quality of Life*
Infant ; Humans ; Child ; Kenya ; Health Personnel ; Records
Czasopismo naukowe
Pełny tekst  Link otwiera się w nowym oknie Pełny tekstSzczegóły
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