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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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.
|Divisions :||Faculty of Health and Medical Sciences > School of Biosciences and Medicine|
|Date :||October 2015|
|Identification Number :||https://doi.org/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|
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