New Survey Results Show Childhood Liver Disease Negatively Affects Mental Health and Education of Young People
The British Liver Trust is urging for immediate action to improve public understanding of childhood liver disease, as new survey results reveal that two out of three young people affected by the condition experience poor mental health due to social isolation and stigma. While medical care for childhood liver conditions has significantly improved in the last forty years, the charity warns that social attitudes have not kept up, leaving many families struggling for recognition and support.
The survey, completed by both young people and parents, found that 67% believed childhood liver disease had a negative impact on mental health, 48% felt it affected their education (with the number increasing to 59% for young people under 25), and 72% felt society had little understanding of their illness.
Michelle Wilkins, Head of Children’s and Families Services at the British Liver Trust, stated, “We are fortunate in the UK that once a liver disease is diagnosed, a child will generally receive excellent medical care. However, the rest of society has yet to catch up. Families whose children require regular hospital treatment may receive warning letters from schools about attendance targets. Additionally, people may automatically assume a young person’s liver disease is caused by alcohol, when in fact, the causes of most childhood liver diseases are unknown. This leads to young patients facing not only the physical aspects of their condition but also stigma.”
Wilkins added, “There are many different types of liver diseases that affect children, and the lack of understanding means that families can feel very isolated on top of the stress of having a chronically ill child. Liver disease does not receive the same acceptance as other chronic conditions. These young people often face a lifetime of medical care and, in some cases, a liver transplant. Greater recognition of this fact would enable them to cope better with the issues they face at school, work, or during social activities.”
There are approximately 100 different types of liver disease that affect babies and children, all of which are considered rare. However, it is estimated that 400 new cases are diagnosed in the UK each year, and thousands of young people and adults are currently living with a childhood liver disease.
Dr. Jane Hartley, Consultant Paediatric Hepatologist at Birmingham Women’s and Children’s Hospital, commented, “This is important research that highlights how paediatric liver disease can often go unnoticed by the outside world but can have serious and potentially life-threatening consequences, leading to poor mental health. Raising awareness of the burden of care that liver disease has on a child, family, or young person can help establish community acceptance, empower families to seek support, and aid in policy-making. While medical care has made significant strides in helping children with liver disease survive, the focus must now be on providing support for them to live a fulfilling life without struggling with mental health issues.”
The British Liver Trust’s Children and Families service can be contacted here: Talk To Someone | Liver Support | Children’s Liver Disease Foundation.
