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Health Expect. 2015 Oct;18(5):1105-13. doi: 10.1111/hex.12083. Epub 2013 May 27.

Self-management and skills acquisition in boys with haemophilia.

Author information

1
Great Ormond Street Hospital for Children NHS Foundation Trust London, London, UK.
2
University of Greenwich, London, UK.
3
Great Ormond Street Hospital for Children NHS Foundation Trust and London South Bank University, London, UK.

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.

KEYWORDS:

children; haemophilia; self-management; young people

PMID:
23711015
PMCID:
PMC5060849
DOI:
10.1111/hex.12083
[Indexed for MEDLINE]
Free PMC Article

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