Search results for: Caregiving burden

• Ultra-rare ultra-care: The unique burden of ultra rare disease caregiving

  Publication

  • J. Domaradzki
  • D. Walkowiak

  - EUROPEAN JOURNAL OF PAEDIATRIC NEUROLOGY - Year 2023

  Background: We sought to assesses the impact of caring for children with ultra rare diseases (URDs) on familycarers and to analyse the way these experiences differ among the caregivers of children diagnosed throughprenatal or newborn screening, and those with symptom-based diagnosis.Methods: A total of 200 caregivers of 219 URDs children completed an on-line survey regarding the challengesand experiences...

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• Digital Government and Administrative Burden Reduction

  Publication

  • L. Veiga
  • L. Barbosa
  • T. Janowski

  - Year 2016

  Administrative burden represents the costs to businesses, citizens and the administration itself of complying with government regulations and procedures. The burden tends to increase with new forms of public governance that rely less on direct decisions and actions undertaken by traditional government bureaucracies, and more on government creating and regulating the environment for other, non-state actors to jointly address public...

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• Emotional experiences of family caregivers of children with Dravet syndrome

  Publication

  • J. Domaradzki

  - EPILEPSY & BEHAVIOR - Year 2023

  Background: Since the psychosocial implications of Dravet syndrome (DS) are much more serious and far-reaching than in other types of epilepsy, caring for a DS child seriously affects the entire family. This study describes the emotional experiences of family caregivers of DS children and evaluates the way caregiving affects their perceived quality of life. Methods: An anonymous, self-administered...

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• Bordón

  Journals

  ISSN: 0210-5934 , eISSN: 2340-6577

• State of global health – hypertension burden and control

  Publication

  • T. Hedner
  • S. Kjeldsen
  • K. Narkiewicz

  - BLOOD PRESSURE - Year 2012

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• The Global Burden of Disease Study 2015 and Blood Pressure

  Publication

  • S. Kjeldsen
  • K. Narkiewicz
  • M. Burnier
  • S. Oparil

  - BLOOD PRESSURE - Year 2017

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• Burgen und Schlösser

  Journals

  ISSN: 0007-6201

• Burden of COVID-19 Pandemic Perceived by Polish Patients with Multiple Sclerosis

  Publication

  • A. Pokryszko-Dragan
  • J. Chojdak-Łukasiewicz
  • E. Gruszka
  • M. Pawłowski
  • T. Pawłowski
  • A. Rudkowska-Mytych
  • J. Rymaszewska
  • S. Budrewicz

  - Journal of Clinical Medicine - Year 2021

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• Belarusian – Polish Border: The Politics of Cross-Border Migration

  Publication

  - Border Crossing - Year 2023

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• Belarusian – Polish Border: The Diplomacy of Cross-Border Migration

  Publication

  • M. Shankar Bharti

  - Border Crossing - Year 2023

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