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Why don't haemophilia nurses do research?

K Khair¹, M Holland, V Vidler

¹Haemophilia Centre, Great Ormond Street Hospital for Children NHS Trust, London, UK. kate.khair@gosh.nhs.uk

Haemophilia : the Official Journal of the World Federation of Hemophilia

|February 1, 2012

Summary

Haemophilia nurses in the UK recognize the importance of clinical research but face barriers. Providing dedicated research time, mentorship, and collaboration can promote greater nurse involvement in haemophilia research.

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Area of Science:

Nursing Research
Clinical Practice
Haemophilia Care

Background:

Clinical research is integral to the role of specialist haemophilia nurses.
The UK Haemophilia Nurses Association identified a need to explore barriers to research engagement among these nurses.

Purpose of the Study:

To determine barriers preventing UK haemophilia nurse specialists from engaging in research.
To identify strategies for promoting clinical research by haemophilia nurses.

Main Methods:

A web-based survey was distributed to UK haemophilia nurses.
Subsequent workshop discussions were held to elaborate on survey findings.

Main Results:

A 50% response rate (32 nurses) was achieved, with all agreeing on the importance of research.
Only 21 nurses had participated in haemophilia-specific research, often limited to educational programs or data collection.
Research involvement rarely led to publication, with identified barriers including lack of dedicated time and mentorship.

Conclusions:

Haemophilia nurses require dedicated research time, mentorship, and collaboration to overcome barriers to research and publication.
Key areas for future nurse-led research include carriership, antenatal decision-making, and the impact of specialist nurses on care, education, and empowerment.