Bio-behavioural research in a rare disease population: a doctoral student’s experience
evidence and practice    

Bio-behavioural research in a rare disease population: a doctoral student’s experience

Ann Hammack Johnson Assistant professor, Nursing, Texas Christian University, Fort Worth, Texas
Mary Cazzell Director, Nursing research and evidence-based practice, Cook Children’s Medical Center, Fort Worth, Texas
Anne Turner-Henson Retired professor, University of Alabama at Birmingham, Birmingham, Alabama

Background Novice researchers who aspire to contribute to the body of knowledge concerning rare diseases face unique challenges in developing and conducting studies. These include unknown effect sizes in previous research, limitations in recruitment and enrolment, and managing data from a multi-site sample.

Aim To describe the challenges in researching rare diseases and possible solutions using a doctoral student exemplar from a cross-sectional correlational study of fatigue.

Discussion The authors discuss the lessons learned from the study, including the challenges in recruitment, communication, collecting biological data and managing data in general. They posit possible solutions, including improving multi-site coordination, feasible methods for exploring sleep and stress, and measures to prevent equipment and data loss.

Conclusion Rare populations, such as young survivors of childhood brain tumours, deserve a voice in building the body of knowledge needed for more precise, personalised healthcare. It is possible with foresight for the novice researcher to make such a contribution.

Implications for practice Improved knowledge and assessment of symptoms during childhood will improve the detection of health risk factors and enable earlier intervention.

Nurse Researcher. 28, 4, 16-23. doi: 10.7748/nr.2020.e1715

Correspondence

ann.h.johnson@tcu.edu

Peer review

This article has been subject to external double-blind peer review and has been checked for plagiarism using automated software

Conflict of interest

None declared

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