Oct 11, 2017
This episode features Briony Hudson (Louis Dundas Centre
for Children’s Palliative Care, UCL Institute of Child Health,
London, UK
and Marie Curie Palliative Care Research Department, UCL
Division of Psychiatry, London, UK) and Linda
Oostendorp, (Marie Curie Palliative Care
Research Department, UCL Division of Psychiatry, London, UK).
They describe their study which aimed to explore how children
and young people (aged 0–25 years) with life-limiting conditions or
life-threatening illnesses and their families were identified,
invited and consented to research published in the last
5 years. The study was a systematic of (quantitative,
qualitative and mixed methods) research published between
2009 and 2014, recruiting children and young people with
life-limiting conditions or life-threatening illness and their
families. A total of 215 studies – 152 qualitative, 54 quantitative
and 9 mixed methods – were included.
The study demonstrated that all stages of recruitment in children
were under reported. Most studies did not provide information of
how children were identified or invited to participate in
research. Transparency in reporting of participant identification,
invitation and consent is needed to enable researchers to
understand research implications, bias risk and to whom
results apply. Research is needed to explore why consenting
participants decide to take part or not and their experiences
of research recruitment. Consequently, future papers should clearly
state (1) how eligible participants were identified, (2)
how people were invited to participate and (3) why people
decide to take part or not. Full paper available
from: http://journals.sagepub.com/doi/abs/10.1177/0269216316663856
If you would like to record a podcast about your published (or
accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:
anwosu@liverpool.ac.uk