Podcast – A call for increased paediatric palliative care research: Identifying barriers

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.

Professor Rosalind Raine

In the last 5 years Rosalind Raine has been awarded £16M (as PI and co-applicant) in AHR grants from NIHR, MRC, Wellcome Trust and other funders. Her research is of value to policy makers due to its diversity (spans acute & chronic conditions and all NHS settings), representativeness (national datasets,long time periods) and applied nature, allowing direct policy translation.

Her analyses have influenced national inequalities policies, EU policy makers, the Cabinet Office, the GLA, LAs and PCTs. She has held national leadership positions including the National Chair of the Heads of Academic Departments of Public Health (2010-2014). Her commitment to internationally competitive research which makes a major contribution to NHS, patients and the public is demonstrated by her membership of the: REF2014 Sub Panel for Public Health, Health Services Research and Primary Care; MRC Career Development Panels (2005-12); NIHR Programme Grant Experts Panel (2007-12) and the MRC Health Services & Public Health Research Board (2005-8). As National and Regional Chair of the UK Clinical Research Network (CRN) NIHR Health Services Research (HSR) Speciality Group (2009-11), she established networks of applied researchers across London Universities to promote research collaborations.

Nationally she worked with the CRN to achieve more appropriate inclusion of HSR in the CRN. Raine’s effective leadership and commitment to capacity building, led her to being asked to establish and lead the UCL Department of Applied Health Research (2012-). Current grants in the Department total £59.3M (as lead and co-applicants).

 

Prof Jonathan Grigg

Professor Jonathan Grigg is one of the UK’s top paediatricians and an international leader in paediatric respiratory research. Since 2003, he has obtained over £11M in research grants as PI and co-applicant from MRC, NIHR, DH and charities. These funds supported air pollution and asthma research with national and international impact. He is the lead paediatrician for government advice on air pollution and children’s health as a member of the Committee on the Medical Effects of Air Pollution, and provides ad hoc advice on respiratory toxicity to the Committee on Carcinogens. He co-chairs the Royal College of Physicians Committee into “air pollution throughout the life course”. In leading the national paediatric research agenda, he organises all paediatric input into British Thoracic Society’s meetings, and as elected secretary to the Royal College Paediatrics and Child Health’s Academic Board, organises its Annual Meeting. He develops national research priorities in paediatric respiratory medicine as Chair of the British Paediatric Respiratory Society, ex chair and, now member, of the Clinical Study Group (Respiratory) for the Medicines for Children network, NIHR Programme Grant Experts Panel. He leads on paediatric respiratory infection and immunology as elected chair of this group in the European Respiratory Society. Nationally, he evaluates the cost effectiveness of therapies, as the paediatric lead of NICE Appraisal Panel A, and is an RCPCH-appointed expert adviser on asthma therapies to other appraisal panels. Locally, he leads on paediatric non-medicines research in NE London as regional LCRN representative to the national committee, and supports academic training as the RCPCH regional academic advisor.

Prof Monica Lakhanpaul

Professor Monica Lakhanpaul leads a multi-disciplinary translational research group at UCL, that focuses on Health Services Research which has direct impact on health policy and clinical practice. Her research program aims to take a multi-disciplinary, integrated and collaborative approach to improving outcomes for children. Her research also aims to transform services for patients.

Professor Lakhanpaul’s research focuses on the translation of evidence into clinical practice and health policy, drawing together education, primary and secondary research to improve health outcomes for children. Her research crosses primary, community and hospital care, social care and education.

Professor Lakhanpaul’s research falls under four main themes; Applied Translation of Evidence In to Policy and Practice (through systematic review, guideline development, decision and prediction rule development), Improvement Science (with a particular focus on partnership production with parents, patients and health professionals; co-production with communities to develop tailored health interventions: MIA study), Conditions (with a specific interest in respiratory illness; asthma, and the acutely sick child) and Inequalities in Health (tailoring interventions for hard to reach groups, health tourism and the use of translators and interpreters to reduce inequalities).

David Law

David Law is the Chief Executive of Hertfordshire Community NHS Trust. He has also worked in primary care and community services in London prior to working in Hertfordshire. He worked in a number of planning roles in health organisations in the County during the 1990s before joining West Hertfordshire Hospitals NHS Trust in 2001 as Director of Strategy. In 2004 he was appointed Chief Executive of the Trust, a post he held till 2007.

After leaving West Hertfordshire Hospitals, David worked at Healthcare for London, initially focusing on the organisation of acute services in the capital and then on end of life care.  He worked extensively for the NHS Institute for Innovation and Improvement. Before moving to Hertfordshire Community Trust he worked on the Transforming Community Services programme in Lambeth and Southwark and in Tower Hamlets.

Dr Taryn Smith

Taryn is a Research Associate working with Professor Monica Lakhanpaul on the NEON (Nurture Early for Optimal Nutrition) Project. Taryn’s background is in nutrition and her PhD research focused on establishing evidence-based dietary requirements for vitamin D in 14-18 year old adolescents. Taryn’s research interests include understanding the effects of nutrition on health outcomes in population groups at risk of nutritional deficiencies, particularly pregnant women, children and adolescents, and nutritional interventions targeted at these populations to improve health and nutritional status and avoid deficiencies.