World's largest cleft lip research project is launched
The largest ever research database and genetic study into cleft lips in the world has been launched in the UK.
It is hoped the five year project – named The Cleft Collective – will enable experts to finally identify the cause of a cleft lip or a cleft palette, something that is currently unknown.
A gene bank is being established at the University of Bristol, which will jointly host the project in conjunction with the University of Manchester.
Parents of children with the condition are now being asked to come forward and join the programme, which will analyse their child’s DNA.
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An estimated 3,000 children will be involved in the research, which will follow them throughout their life to try and identify which treatment options are most suited to cleft lips or palettes.
Researchers are aiming to collect the DNA of all children born with the condition in the UK from autumn 2012 onwards.
Although the universities of Bristol and Manchester will lead the effort, the University of the West of England (UWE), University of Liverpool and NIHR Medicines for Children Research Network will also be involved.
“Children born with cleft often face unique challenges,” said Professor Jonathan Sandy, the lead researcher from the Bristol-based gene bank.
“These include speech and language issues, educational difficulties and broader health concerns.
"We do not know if these problems are caused by the genes that may be responsible for cleft or by other factors, such as lifestyle or 'environmental' factors.
“This study will help answer these important questions and could also solve the ultimate mystery of what causes cleft in the first place,” he added.
Another part of The Cleft Collective will be to investigate the support – practical and emotional – that the parents of cleft children require.
Sandy continued: “The birth of a cleft is a frightening time for mums.
“The mother is particularly sensitive to a change in the body language of the midwife and knows when something is wrong.
"We are constantly asked three questions. Firstly, what has caused this? Secondly, how will the child get on in life? Thirdly, what is the best treatment?
“This study is trying to answer those questions. This is a huge opportunity and we are fortunate to have found a generous funder,” he said.
This line of research will be taken care of by the Centre for Appearance Research (CAR) at the UWE.
Commenting on its involvement, Professor Nichola Rumsey, the co-director of CAR, said: “CAR is a leader in the study of the psychological impacts of cleft.
“Our focus will be to gather psychological data from parents on their experience of diagnosis and the early issues of parenting a child with a cleft and their support needs.
“This is a rare opportunity to follow a cohort of 3,000 babies and their parents during a two to three year period, and hopefully beyond.”
In total, The Cleft Collective is expected to cost £11 million.
So far £5 million worth of funding has been received from the Healing Foundation, with the remainder of the costs expected to be contributed by the universities involved and NHS partners.
The project has been welcomed by The Cleft Lip and Palate Association (CLAPA) and the organisation’s Acting CEO, Sue Carroll, said: “We at CLAPA welcome this new and exciting research programme which, over the next five years, will provide huge insights into cleft lip and/or palate.
“We urge as many people as possible nationwide to get involved.”
Parents are being asked to register their interest in The Cleft Collective at www.cleftcollective.org.uk.
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COVID-19 "causing mass trauma among world’s nurses"
Healthcare providers are facing ongoing nursing shortages, and hospitals are reporting high rates of staff turnover and burnout as a result of the COVID-19 pandemic. In June a report found that levels of burnout among staff in England had reached "emergency" levels.
Registered nurses Molly Rindt and Erika Haywood are nurse mentors on US recruitment platform Incredible Health. In this joint Q&A they tell Healthcare Global about their own experiences of burnout and what can be done to tackle it.
What does it mean to be suffering from burnout?
Some of the most common reasons for nurse burnout include long work hours, sleep deprivation, a high-stress work environment, lack of support, and emotional strain from patient care.
While every profession has its stressors, the nursing industry has some of the highest burnout rates. The massive influence on patients’ lives, the long hours, and many other factors put nurses at risk of severe burnout. And with the rise of COVID-19, many healthcare professionals feel the strain more than ever.
Burnout in nurses affects everyone — individual nurses suffer, patients are impacted, and employers struggle with enormous turnover. This is why it’s crucial for healthcare systems and management to watch for signs of nurse burnout and take steps to provide a healthier workplace. Employers should be careful to watch for burnout symptoms in their healthcare staff — and not ignore them.
Symptoms include constant tiredness, constant anxiety related to work, emotional detachment and unexplained sickness.
How widespread is this problem?
Unfortunately, burnout affects approximately 38% of nurses per year and even the WHO recently labelled burnout as an official medical diagnosis. To put this statistic into perspective, nearly 4 out of 10 nurses will drive to work dreading their shift. Burnout is a reason nurses leave their positions.
Other top reasons for leaving included a stressful work environment, lack of good management or leadership, inadequate staffing, and finding better pay or benefits elsewhere.
Even before the pandemic, demanding workloads and aspects of the work environment such as poor staffing ratios, lack of communication between physicians and nurses, and lack of organisational leadership were known to be associated with burnout in nurses.
Have either of you experienced burnout?
Rindt: I have experienced burnout as an RN. I was constantly fatigued, never felt like I was off work, and would frequently dream I was still at work taking care of patients. In my particular situation, I needed to take a step back and restructure my work schedule to allow for more time off. After doing this, I was able to reduce burnout by deciding to work two shifts back-to-back and then have 2-3 days off.
Haywood: I definitely experienced constant anxiety related to work - so much so it would impact the days I wasn’t at work. At one point, I was even on medication to help combat the anxiety and stress I was facing on the job.
I had heart palpitations, chest pain, and wouldn’t be able to sleep before working the next day, which slowly started to impact other aspects of my life. I knew I couldn’t continue to live this way, it wasn’t sustainable. Because of this, I began to focus on my needs and prioritising self-care, especially during the beginning of the pandemic. Putting my needs first and not feeling guilty were necessary for me to overcome burnout.
What impact is COVID-19 having on nurses' wellbeing?
Some nurses have suffered devastating health consequences. Many nurses have dealt with excessive on-the-job stress, fears of becoming infected, and grief over seeing patients succumb to COVID-19 while isolated from their families.
New evidence gathered by the International Council of Nurses (ICN) suggests COVID-19 is causing mass trauma among the world’s nurses. The number of confirmed nurse deaths now exceeds 2,200, and with high levels of infections in the nursing workforce continuing, overstretched staff are experiencing increasing psychological distress in the face of ever-increasing workloads, continued abuse and protests by anti-vaccinators.
However, other small silver linings that came from the pandemic include increased professional autonomy, leadership opportunities and career growth potential.
How much of the cause of burnout is due to the hospitals or healthcare providers, and what can they do to address it?
Nurse fatigue poses serious problems for healthcare organisations, and a recent survey from Kronos found 63% of nurses say their job has caused burnout. The survey also found that more than 4 out of 5 nurses think hospitals today are losing good staff because other employers offer a better work/life balance.
Nurse burnout not only contributes to staff turnover, but it can impact the facility’s quality of care, patient satisfaction, and even medical outcomes.
Strategies to address burnout include training improving nurse-to-patient ratios, include nurses in policy discussions, and prioritise fostering a healthy work culture in hospitals.
What does your role mentoring nurses on the Incredible Health platform involve?
Rindt: My role can vary based on the needs of the nurses. The nurses love knowing they have someone in their corner who can give interview preparation advice or provide suggestions on how to improve their resume. Knowing that there is someone who is well-versed in the job process and can help set expectations on what to anticipate, really helps to remove a layer of uncertainty.
Haywood: When screening nurses, it is customised to what their individual RN or nurse practitioner needs, and at a time that is most convenient for them. Nurses are busy and often aren’t thought of first. Being able to provide support from the very beginning of their career advancement journey helps tremendously. We also provide resources such as resume templates and tips that can help nurses be successful and feel supported.