Palliative care for children and young people with life-limiting conditions and life-threatening illnesses is a relatively new discipline, and one where current practice in services has developed beyond the evidence base available. Barriers to conducting research in this area are numerous, and span the entire length of the research process.
CLAHRC researchers from the BRAVES project, based at the Louis Dundas Centre, are working to identify these barriers to recruiting children with life-limiting conditions to research, and to develop solutions.
“Establishing robust evidence is going to require concerted effort on everyone’s part: clinicians, parents, patients, and researchers.”
Professor Myra Bluebond-Langner, principal investigator on the BRAVES project, has recently recorded a podcast with the journal Palliative Medicine, discussing the need for an increased understanding of barriers to research in paediatric palliative care, findings from the project so far, and outlining the future research planned by the team.
Initial findings from the study, and previous work at the Louis Dundas Centre, have suggested that fundamental barriers exist at both the individual level, e.g. clinicians’ attitudes to involving young people in research, as well as at the institutional level, e.g. ethics committees and resource constraints, even though children and young people want to participate in research.
“So, why, if we no longer accept paternalism in clinical practice, are we willing to accept it, indeed demur to it, in research practice?
The overall goal of the BRAVES project is to develop guidance based on the experience of all stakeholders, which in turn will help to develop the evidence base in the field of paediatric palliative care.
Based on the findings outlined in the podcast, the research team has since conducted a study investigating the experiences and difficulties of chief investigators recruiting children and young people with life-limiting conditions and life-threatening illnesses to research. The findings from this study are expected to be published soon. The next step for the CLAHRC researchers is to analyse data collected from a nationwide research groups’ applications to Research Ethics Committees, and to interview members of these committees to develop further insights.
Click here to read the journal article on which this podcast is based.
A new report from healthcare think tank the King’s Fund sets out progress in delivering the Getting It Right First Time (GIRFT) programme deliver improvements in quality and reductions in the cost of orthopaedic care in England.
Tackling variations in clinical care Assessing the Getting It Right First Time (GIRFT) programme gives an overview of the programme, how clinicians have responded and what it has already highlighted in terms of variations of care across the NHS.
The CLAHRC is carrying out an evaluation of the planned changes to orthopaedics, to identify lessons to inform future efforts to improve the organisation and delivery of services.
The CLAHRC Academy held its latest installment of the popular Introduction to Evaluation workshop on Tuesday 13 June.
With 28 delegates from a wide range of NHS Trusts, Local Authorities and CCGs, there was in-depth discussion and engagement around all aspects of the evaluation process.
Throughout the day, delegates applied what they had learnt to create their own plans for service evaluations, and shared ideas and experiences with tutors and each other.
A few comments from our participants:
“Vey engaging, I particularly enjoyed/liked the exercises after each session.”
“A good comprehnsive overview of evaluation technniques“.
“Very professional & informative. Useful & applicable to the work I do.”
Thank you to all those who attended – your engaged participation made for a very interesting workshop.
Interested in attending this course? We will be running the Introduction to Evaluation workshop again on 13 December 2017: click here for details.
Want to keep up to date with news on our upcoming courses? Email us at at Clahrc.firstname.lastname@example.org to be added to our mailing list.
CLAHRC PhD Sarah Robertson is focusing on the quality of life of people living with dementia. Part of Sarah’s work compares the perspective of paid and family carers in quality of life. In a blog published on the Economic and Social Research Council website Sarah discusses the views of care home staff and relatives.
Congratulations go out to Jennifer Martin, who has had an image she took in India chosen to represent the UCL India Voices project in 2017.
A PhD student with the Nurture Early for Optimal Nutrition (NEON) project, Jennifer took the picture while conducting research with women in Mumbai. After submitting it to a UCL photography competition, Jennifer’s photograph was selected as the image for UCL India Voices poster.
Advertising UCL’s Grand Challenge of Cultural Understanding India Voices cross-disciplinary programme of film, debate and the arts, the poster can be seen across UCL.
Details of the India Voices programme can be found on the UCL Grand Challenges website.
A new CLAHRC publication offers valuable insight into the types of evidence used by decision-makers working in public health. In 2013, responsibility for public health services and planning shifted from the “health” boundary to local authority control. These services can range from health checks to open access sexual health.
CLAHRC researchers examined English local public health decision-making in a new review of what evidence is used and how by those planning, designing and commissioning services.
The review, published in a new paper in the Journal Implementation Science identifies three clear trends in evidence use
- the primacy of local evidence
- the important role of local experts in providing evidence and knowledge, and
- the high value placed on local evaluation evidence despite the varying methodological rigour.
Barriers to the use of research evidence included issues around access and availability of applicable research evidence, and indications that the use of evidence could be perceived as a bureaucratic process.
This is part of a wider project entitled Exploring decision-making processes and knowledge requirements in public health
Read the full paper
Kneale et al. Implementation Science (2017) 12:53
The use of evidence in English local public health decision-making: a systematic scoping review