A team of researchers and clinicians at Queen's university and Belfast Health and Social Care Trust are the UK clinical partner in a multi-centre European study.
The 'Passion-HF' study aims to develop an e-health product named “Abby” that will encourage patients to take more responsibility for their personal wellbeing, including self-care of their heart failure and self-prescription of medication.
The project has already been highlighted in the Northern Ireland's achievement in the Transnational programmes booklet published by SEUPB (LINK HERE)
Dr Carmel Kelly together with her team (Dr Michelle Templeton and Professor Maria Lohan) has completed a research project which has led to:
Launch of Improving sexual health of men in NI prisons at Hydebank Wood College (March 2018)
Included from L-R Catherine Baxter, Jaqueline Magennis (Nurses at HBW), Dr Michael Mc Bride (Chief Medical Officer), Professor Maria Lohan (School of Nursing and Midwifery QUB), Dr Carmel Kelly (Clinical Nurse Lead for sexual health SET, QUB), Dr Michelle Templeton (Research Fellow QUB), Prof Donna Fitsimons, Rachel Gibbs
Read more via: http://www.setrust.hscni.net/3932.htm
‘Cancer Caring Coping’ (www.cancercaringcoping.com) is a new online resource created by cancer caregivers for cancer caregivers. It is based on research by Dr Olinda Santin from Queen’s University Belfast, who found that cancer caregivers have poorer health compared to caregivers of other chronic conditions.
The project, led by Queen’s University, is a partnership between Belfast Health and Social Care Trust and The Northern Health and Social Care Trust, as well as involvement from the Men’s Health Forum in Ireland and Charis Cancer Care.
Dr Santin, who is a Lecturer in Supportive Cancer Care at Queen’s, said: “Cancer caregivers require specific support and information to prepare them to cope with their role. The aim of this new Cancer Caring Coping website is to give carers their own voice. The strongest stories of all use carers’ words and carers’ experiences, and that is what this website represents.
“Queen’s University recognises the unique role cancer caregivers provide and is dedicated to supporting cancer caregivers through evidence based approaches, making it truly effective in improving the lives of carers and those that they care for.”
Early evaluation of the website has identified that caregivers felt that the resource provided useful and relevant information, and reduced isolation and uncertainty in their caregiving role.
Dr Gillian Prue is a member of HPV Action, a collaborative partnership of 50 global organisations that are working together to reduce the health burden of HPV.
Gillian and her colleagues recently called for the HPV vaccine to be extended to all adolescent boys on the basis of their research evidence.
This research was cited as follows as part of the most recent parliamentary debate on the topic.
Jim Shannon (Strangford) (DUP) May 2nd 2018:
Is the Minister aware of the paper on this subject by Dr Gillian Prue of Queen’s University Belfast? Dr Prue’s six recommendations are very similar to what the hon. Member for North Thanet (Sir Roger Gale) and others have put forward today. They include: first, that both men and women should be vaccinated against HPV-related diseases; and secondly, and more importantly, that the significant human cost of HPV-related diseases should be the primary consideration for including boys in vaccination programmes. If the Minister has not been made aware of the paper, I am happy to furnish him with the copy. Its recommendations are integral to moving forward on the issue.
Professor Kevin Brazil, leading a research team from QUB, University of Ulster and Lancaster University, has developed an evidence based family carer decision support intervention to assist on care decisions for a family member living with dementia at the end of life
The booklet for patients & families can be accessed HERE
Evidence for this approach can be accessed HERE
Dr Helen Noble's research supports shared decision-making between patients & health professionals around patients' end of life care decisions.
Helen's research is developing and testing a new decision aid to help patients, along with doctors and nurses, to make the best decisions on whether or not to continue with kidney dialysis towards end of life.
Read more here about Dr Nobles recent workshop HERE
Pictured Left: Professor Donna Fitzsimons, Head of School, opening a renal workshop held at Belfast City Hospital attended by healthcare staff, patients and carers
International research led by Prof Donna Fitzsimons and Dr Loreena Hill has impacted clinical practice by identifying that all too often information concerning Implantable Cardioverter Defibrillator deactivation is discussed “too little, too late” with patients and family members.
Ultimately this lack of knowledge can have an adverse impact on choice and quality of life at the end-of-life.
Prof Fitzsimons & Dr Loreena Hill also sponsored a meeting of Northern Ireland Heart Failure and Palliative Care Professionals in May 2018. Prof Fitzsimons presented findings from Chest Heart and Stroke project 'Development of a supportive intervention to meet the needs of carers of people with advanced heart failure'.
Regional Heart Failure Nurses, Palliative care nurses, Consultants, & GPs contributed to a productive discussion. The consultation will lead to an update of the 2010 Northern Ireland supportive & palliative care guidelines, for use by primary and secondary multidisciplinary team members.
To read the research report, visit: http://journals.sagepub.com/doi/full/10.1177/1474515115584248
To see a video about the research, visit: https://www.youtube.com/watch?v=rYJkLapDjrk
Dr Jenny McGaughey’s research provokes new thinking on National Institute of Clinical Excellence Guidelines (NICE) guidelines on “track and trigger” protocols relating to acutely ill patients as well as staff training requirements.
Prof Fiona Alderdice and international research team have developed ‘At home with your premature baby’ - an evidence informed, online resource, co-produced with parents of premature babies.
TinyLife helps lessen the huge needs of the parents of tiny babies at the start of their long lives.
Dr Carmel Kelly’s research leads to the launch of an online patient informed educational resource to help doctors and nurses prepare to care for women and men affected by HIV and who are pregnant or who want to have children.
The resource is used in all Trusts in in Northern Ireland and is accessed and used throughout the world.
Dr Claire Kerr and Dr Oliver Perra are directors of the Northern Ireland Cerebral Palsy Register for Northern Ireland.
Founded in 1991, the NICPR is used for the monitoring and surveillance of cerebral palsy in the Northern Ireland population, and to support research into the condition. The register is a unique resource as it is the only active cerebral palsy register in the UK.
The NICPR has influenced service planning and policy in the UK and has been cited in recently published NICE guidelines. A copy of the NICE guidelines ‘Cerebral palsy in under 25s: assessment and management’ can be found by clicking here.
Clinicians working in all five Health and Social Care Trusts in Northern Ireland have used the NICPR for the improvement of clinical practice through audits on current assessment and treatment methods. Recent audits have included neuroimaging in children with cerebral palsy, medical management of spasticity and hip joint management of children with the condition. These audits have highlighted areas for service improvement, thus directly benefitting children with cerebral palsy and their families.
More recently the NICPR was selected as one of 10 test-bed projects in the UK to participate in a National Institute for Health Research (NIHR) study on public involvement. The NICPR will work closely with NIHR and the Public Health Agency in Northern Ireland to test the National Standards for Public Involvement in Research. As part of this research the NICPR will create a public involvement group for persons with cerebral palsy, their families, carers and friends.
The most recent Transition Newsletter highlights some implications from the Programme and can be found by clicking here.
Dr Maria Healy’s research provides clear guidelines to doctors and midwives as well as expectant mothers and their partners on when and how to choose midwifery-led care for pregnancy care and giving birth in Northern Ireland.
Maria Healy’s research is also informing the World Health Organisation’s global development of midwifery-led care.
Maria presented the work she chaired and co-led with Dr Patricia Gillen (South Eastern Health and Social Care Trust/University of Ulster) – Guideline for admission to midwife-led units in Northern Ireland and Northern Ireland Normal Labour & Birth Care Pathway - at the WHO-ICM-UNFPA global consultation midwifery meetings held at World Health Organisation, Geneva from 21st-23rd March 2018.
The work was showcased as an example of how to implement midwife-led care within a country and questions from many of the global leaders present highlighted the potential of future impact through translation of the guideline and pathway into practice within lower and middle income countries.
Professor Maria Lohan and Dr Carmel Kelly and team’s research generates new relationship and sexuality educational programmes in schools and is pioneering relationship and sexual health in prisons.
A cluster randomised controlled trial (cRCT) of If I were Jack in eight post-primary schools among 831 pupils in NI demonstrated that this RSE programme is acceptable to schools, pupils, teachers and parents (including in faith based schools), can be feasibly implemented and is cost-effective (under £14 per pupil).
Dr Michelle Templeton delivered If I were Jack with young men in Hydebank Wood College (HWC) (Young Offender’s Centre) together with Barnardo’s NI and used this opportunity to better assess the RSE needs of young offenders. https://goo.gl/bHfMkx The team is now developing a Future Relationships and Fatherhood Programme for incarcerated men.
Dr Breidge Boyle’s work with EUROCAT and EUROmediCAT has influenced the development of UK guidelines on the use of psychotropic drugs in women of childbearing age as a primary prevention measure for preventing congenital anomaly.
Maria Lohan is working as a consultant to the World Health Organization Human Reproduction Programme.
She and team (Dr Esther Reid, Dr Fiona Lynn, Dr Eimear Ruane-McAteer & Dr Jennifer Hanratty) are undertaking a review of the evidence base relating to involving men, alongside women, in sexual and reproductive health.
The aim of the Think Family NI initiative is to enhance greater partnership working between statutory agencies and organisations working with children and young people, and those working with adults to improve outcomes for family members with mental health issues, their parents and carers by establishing a ‘Think Child, Think Parent, Think Family’ approach to planning and delivery of services.
Dr Anne Grant, Lecturer at the School of Nursing and Midwifery at Queen’s University explained: “The knowledge generated from the research will contribute to the development of an integrated policy, practice and research strategy, including performance indicators to move systems change forward in Northern Ireland and internationally.
Cochrane Review Team led by Emma McCall and Professor Fiona Alderdice, in collaboration with the Design Team at NPEU, create a simple infographic to convey key findings quickly and clearly to those who care for preterm babies.
Available for download: ‘Interventions to prevent hypothermia at birth in preterm and or low birthweight infants.’ https://neonatal.cochrane.org/our-work/infographics
NIHR SIGNAL: Plastic wraps or bags keep preterm infants warm immediately after birth.
McCall EM, Alderdice F, Halliday HL, Vohra S, Johnston L. Interventions to prevent hypothermia at birth in preterm and/or low birth weight infants. Cochrane Database of Systematic Reviews2018, Issue 2. Art. No.: CD004210. DOI: 10.1002/14651858.CD004210.pub5.
Factors that contribute to a successful transition to adult services for young adults with life -limiting conditions were identified by young adults, parents and services providers.
Dr Helen Kerr’s study identified eight factors associated with a successful transition to adult services for young adults with life-limiting conditions.
Helen was awarded the International Journal of Palliative Nursing, Researcher of the Year award, and was also runner up in the Royal College of Nursing, Northern Ireland Nurse Researcher of the Year, for this research. Helen secured the national Florence Nightingale Travel Scholarship award in 2016 to continue developing this research.
Over 80 services users and service providers attended an all-Ireland ‘Transition Workshop’ to identify the key priorities of action in improving the transition to adult services.
Download the report on the Transition Workshop: http://www.professionalpalliativehub.com/sites/default/files/Transition from children’s to adult services for young adults with life-limiting conditions in Ireland.pdf
Download Dr Kerr’s published papers on this study;
Research findings paper: https://www.sciencedirect.com/science/article/pii/S0020748918301536
Literature review of transition services for young adults with life-limiting conditions:
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