Inviting parents to take part in paediatric palliative care research

Myra Bluebond-Langner, Professor and True Colours Chair in Palliative Care for Children and Young People, Louis Dundas Centre for Children’s Palliative Care, University College London-Institute of Child Health, London, UK, explains the background to the longer article selected as ‘Editor’s Choice’ in the March issue of Palliative Medicine.

Prof Myra Bluebond-Langner

Prof Myra Bluebond-Langner

In 2010 I moved to London to assume a post that was the result of two different and separate efforts to improve the care of children and young people with life- threatening and life-limiting illnesses. One of those efforts was the True Colours Trust’s establishment of an academic chair in palliative care for children and young people. The other was the decision of the Dundas family to create a centre at Great Ormond Street Hospital (GOSH) that would join clinical practice with research to contribute to what was generally acknowledged as an evidence base, which lagged behind practice (see Legacy for Louis: The Next Chapter, our short video).

Great Ormond Street’s proposal, written largely by the Palliative Care Team there, to host the True Colours Chair was successful and brought the True Colour’s Chair to the Institute of Child Health, GOSH’s research partner. The Chair also directs the Louis Dundas Centre, now an integrated clinical and academic enterprise which spans the two institutions.

One of the early projects of the Louis Dundas Centre aimed toward integrating research and practice was a pilot study of parents’ experience of advance care planning. The recruitment goals were very modest and yet we encountered delays. Eligible parents of both actively treated and deceased children were to be approached by clinical staff about participation in the study. We found that approaches to eligible patients were being delayed – always for well-intended purposes. Looking at the literature we found that others involved in studies of children and young people with life-limiting conditions and life-threatening illnesses reported not only delays but also the failure to recruit a single individual or family.

Our current article in Palliative Medicine is an attempt to understand the ‘gate keeping’ that we encountered in this pilot study. Was it having a negative impact on research by introducing sample bias? Did clinicians have personal attitudes and beliefs about research which did not accord with public statements about the importance and need for research? Or were clinicians acting to protect families from what they believed might be the harmful impact of research?

We are now undertaking the BRAVES project (Barriers to Research Access: Views, Experiences and Solutions) to look at issues of barriers to research from the perspective of all stakeholders – parents, patients, clinicians, researchers, ethics committees and society. The issue of gate keeping will be incorporated into a broader investigation of the barriers to and the real and perceived burdens of research, which frustrate researchers, perhaps constrain the research they might attempt and delay the completion of projects.

PM March.coverDownload a free copy of the full article…
This post relates to a longer article, ‘Inviting parents to take part in paediatric palliative care research: a mixed methods examination of selection bias’ by Joanna C Crocker, Emma Beecham, Paula Kelly, Andrew P Dinsdale, June Hemsley, Louise Jones and Myra Bluebond-Langner, published in Palliat Med. March 2015 29: 231-240, first published on December 17, 2014 doi: 10.1177/0269216314560803.

EAPC members and registered users of the EAPC website can download a free copy of this article and other ‘Editor’s choice’ papers from the EAPC website. (If you need to register or login to download this paper please follow the instructions in the top right-hand corner of EAPC home page and scroll down to the article). Click here to view other EAPC-originated papers.

EAPC congress 2015Are you coming to Copenhagen?
If you’re attending the 14th World Congress of the EAPC please join us at the parallel session, Paediatric Palliative Care: Moving Forward, on Saturday 9 May, 2015. Check the programme for full details. Follow us on Twitter @EAPCOnlus – our official congress hashtag is #eapc2015 

This entry was posted in CHILDREN'S PALLIATIVE CARE, EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, RESEARCH and tagged , . Bookmark the permalink.

2 Responses to Inviting parents to take part in paediatric palliative care research

  1. I’m saddened to read that where there are studies, parents are not given options to join, for whatever reasons. This needs to change.

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