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.
Held on Thursday 12 October 2017, Becoming Research Active – what does it involve and where do I start? is an introductory level course for nurses, allied health professionals, public health and local government members of staff who are interested in research.
As a first step towards becoming “research active”, by the end of the course attendees will be able to understand the research process and will have produced an action plan for taking their research idea forward.
For more details on the workshop, including how to apply,
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.
Registration for our next CLAHRC North Thames Academy short course, Introduction to Demand, Capacity and Flow, is now open!
Aimed at staff from NHS Trusts, CCGs and Local Authorities, this hands-on, one-day workshop may be for you if you are interested in learning more about:
What we mean by demand, capacity and flow
The role of variability in demand forecasting and capacity planning
How these concepts relate to flow within and between organisations
Common pitfalls including the role and limitations of using historical data
Some useful rules of thumb from ‘queueing theory’
Practical skills and tips for applying these concepts within your own organisations
Date: Tuesday 26 September 2017
Time: 10:00 – 16:00
Venue: Woburn House, 20-24 Tavistock Place, Central London
For more details on the workshop, including how to apply, please see the event page here.
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.