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Self-management and skills acquisition in boys with haemophilia.

Khair, K, Meerabeau, L and Gibson, F (2015) Self-management and skills acquisition in boys with haemophilia. Health Expect, 18 (5). pp. 1105-1113.

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Abstract

BACKGROUND: There is an increasing prevalence of children/young people with long-term conditions (LTC) in the UK due to improvements in health-care management and delivery. These children are often involved, from an early age, in their own care and management; yet, there are little data to support how or when they develop the necessary skills and knowledge to become competent at this care. OBJECTIVE: This study aimed to understand self-management of haemophilia, from a child's perspective, in the 21st century in the UK where intensive prophylactic therapy is given from early childhood. DESIGN: A qualitative study using grounded theory to evaluate life-experiences of children and young people with haemophilia. SETTING AND PARTICIPANTS: Thirty boys aged 4-16 with severe haemophilia treated at a single paediatric haemophilia care centre were interviewed at home or in a focus group. INTERVENTION/VARIABLES: Multimethod qualitative research including age-appropriate research tools (draw and write, photo-elicitation and interviews) to facilitate data collection from children. RESULTS: Boys develop self-management skills over time. They learn from health-care professionals, their parents and other family members with haemophilia. DISCUSSION: Self-management skills (bleed recognition, self-infusion, self and medicines management, pain and risk management and conceptualizing preventative therapy) are developed through experiential learning and individualized education, and not through formalized expert patient programmes. CONCLUSION: The boys in this study have benefited from early prophylactic factor replacement therapy. They develop skills in haemophilia and self-management at a relatively young age and are experts in their own haemophilia care.

Item Type: Article
Subjects : Biosciences
Divisions : Faculty of Health and Medical Sciences > School of Biosciences and Medicine
Authors :
AuthorsEmailORCID
Khair, KUNSPECIFIEDUNSPECIFIED
Meerabeau, LUNSPECIFIEDUNSPECIFIED
Gibson, FUNSPECIFIEDUNSPECIFIED
Date : October 2015
Identification Number : 10.1111/hex.12083
Copyright Disclaimer : © 2013 John Wiley & Sons Ltd
Uncontrolled Keywords : children, haemophilia, self-management, young people
Related URLs :
Additional Information : Full text not available from this repository.
Depositing User : Symplectic Elements
Date Deposited : 07 Jun 2016 14:03
Last Modified : 07 Jun 2016 14:03
URI: http://epubs.surrey.ac.uk/id/eprint/810951

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