Assessing the supportive care needs of parents with a child with a bleeding disorder using the Parental Needs Scale for Rare Diseases (PNS‐RD): A single‐centre pilot study-Reference-Cited by-同舟云学术

Assessing the supportive care needs of parents with a child with a bleeding disorder using the Parental Needs Scale for Rare Diseases (PNS‐RD): A single‐centre pilot study

Published:2019-07-29 Issue:5 Volume:25 Page:831-837
ISSN:1351-8216
Container-title:Haemophilia
language:en
Short-container-title:Haemophilia

Author:

Khair Kate¹²^ORCID,Pelentsov Lemuel³

Affiliation:

1. Centre for Outcomes and Experience Research in Childhood Health, Illness and Disability (ORCHID) London UK

2. Haemophilia Centre Great Ormond Street Hospital for Children NHS Foundation Trust London UK

3. School of Nursing and Midwifery University of South Australia Adelaide South Australia Australia

Publisher

Wiley

Subject

Genetics (clinical),Hematology,General Medicine

Link

https://onlinelibrary.wiley.com/doi/pdf/10.1111/hae.13826

Reference21 articles.

1. Classification of rare bleeding disorders (RBDs) based on the association between coagulant factor activity and clinical bleeding severity

2. A review of inherited platelet disorders with guidelines for their management on behalf of the UKHCDO

3. Department of Health.The UK strategy for rare diseaseswww.raredisease.org.uk. Last accessed 22nd August 2018.

4. Who should care for people with bleeding disorders?

5. Understanding the experience of caring for children with haemophilia: cross-sectional study of caregivers in the United States

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