Evidence and Practice

Clinical

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

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

Why you should read this article: • To gain confidence in implementing a multi-site study as a novice researcher • To benefit from the ‘lessons learned’ in a bio-behavioural exploration study • To understand the special needs of child/parent dyad participants 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.

Using legitimation criteria to establish rigour in sequential mixed-methods research

Using legitimation criteria to establish rigour in sequential mixed-methods research

Legitimation criteria enable researchers to maintain quality throughout their studies

Using exploratory factor analysis to define levels of ontology in critical realism

Using exploratory factor analysis to define levels of ontology in critical realism

How exploratory factor analysis can help define the domains of ontology in critical realism

Psychoanalytically informed research interviewing: notes on the free association...

How to carry out and analyse research interviews informed by psychoanalysis

How to synthesise original findings back into the literature: a reintroduction to concurrent analysis

How to synthesise original findings back into the literature

A reintroduction to concurrent analysis

The application and tailoring of Colaizzi’s phenomenological approach to a hospital setting

Application and tailoring of Colaizzi’s phenomenological approach to a hospital setting

Validating findings is an important part of research methodology