Literature DB >> 22171673

A qualitative study identifying the knowledge, attitudes and behaviours of young men with mild haemophilia.

J Nilson1, C Schachter, K Mulder, M Hahn, M Steele, P Hilliard, C Jarock.   

Abstract

The Canadian Physiotherapists in Hemophilia Care (CPHC) sought to learn about attitudes and behaviours of young male adults with mild haemophilia towards their condition and care. Semi-structured in-person or telephone interviews were conducted with 18 young men from and across Canada. This report summarizes the participants' attitudes towards their haemophilia, previous injuries, perceived barriers to seeking treatment, as well as their decision-making process when self-assessing injury. The interviews demonstrated that communication between the young adults and the health care team was not optimal, with common reference to the ineffectiveness of lecture style education. Gaps in knowledge also emerged regarding bleed identification and management.
© 2011 Blackwell Publishing Ltd.

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Year:  2011        PMID: 22171673     DOI: 10.1111/j.1365-2516.2011.02714.x

Source DB:  PubMed          Journal:  Haemophilia        ISSN: 1351-8216            Impact factor:   4.287


  8 in total

1.  Treatment-related knowledge and skills of patients with haemophilia and their informal caregivers.

Authors:  Teddy Novais; Antoine Duclos; Remi Varin; Isabelle Lopez; Valérie Chamouard
Journal:  Int J Clin Pharm       Date:  2016-02

Review 2.  The role of patient and healthcare professionals in the era of new hemophilia treatments in developed and developing countries.

Authors:  Fadi Nossair; Courtney D Thornburg
Journal:  Ther Adv Hematol       Date:  2018-07-02

Review 3.  Living with a rare disorder: a systematic review of the qualitative literature.

Authors:  Charlotte von der Lippe; Plata S Diesen; Kristin B Feragen
Journal:  Mol Genet Genomic Med       Date:  2017-07-23       Impact factor: 2.183

4.  The Nature of Patient- and Family-Centred Care for Young Adults Living with Chronic Disease and their Family Members: A Systematic Review.

Authors:  David Allen; Nerina Scarinci; Louise Hickson
Journal:  Int J Integr Care       Date:  2018-05-18       Impact factor: 5.120

5.  Exploring the Impact of Infusion Frequency in Hemophilia A: Exit Interviews with Patients Participating in BAY 94-9027 Extension Studies (PROTECT VIII).

Authors:  Jane R Wells; Adam Gater; Chris Marshall; Theo Tritton; Parth Vashi; Sophia Kessabi
Journal:  Patient       Date:  2019-12       Impact factor: 3.883

6.  Optimizing language for effective communication of gene therapy concepts with hemophilia patients: a qualitative study.

Authors:  Daniel P Hart; Brian R Branchford; Sarah Hendry; Robert Ledniczky; Robert F Sidonio; Claude Négrier; Michelle Kim; Michelle Rice; Matthew Minshall; Claire Arcé; Steve Prince; Maria Kelleher; Sharon Lee
Journal:  Orphanet J Rare Dis       Date:  2021-04-28       Impact factor: 4.123

Review 7.  Measuring therapeutic relationship in the care of patients with haemophilia: A scoping review.

Authors:  Erin McCabe; Maxi Miciak; Liz Dennett; Patricia Manns; Christine Guptill; Jeremy Hall; Douglas P Gross
Journal:  Health Expect       Date:  2018-08-29       Impact factor: 3.377

8.  Haemo-Adhaesione: A New Measure of Adherence for Adolescent and Adult Patients with Haemophilia.

Authors:  Ana Torres-Ortuño; Rubén Cuesta-Barriuso; Joaquín Nieto-Munuera; Álvaro Castiello-Munuera; Manuel Moreno-Moreno; José Antonio López-Pina
Journal:  Patient Prefer Adherence       Date:  2020-03-03       Impact factor: 2.711

  8 in total

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