Health researchers at the University of Stirling are calling for an overhaul of services for children living with chronic pain.
A new study, led by Dr Emma France and funded by the National Institute for Health and Care Research, found children are often left without effective pain management and struggle to access support from health services.
The research, which was carried out over a three-year period, is the first to specifically look at all the research about how children living with chronic pain and their families are experiencing pain and pain management.
"Serious impacts on whole family"
Dr France said: “Chronic pain in children is a huge public health issue, however this is the first time that all existing research on the experiences of chronic pain and services for children has been pulled together and studied comprehensively.
“We found that when children have chronic pain that’s moderate or severe, it has really serious impacts on the whole family – affecting all aspects of their lives, from the ability of parents to have paid employment, to the wellbeing of siblings and the education and future career prospects of the child living with chronic pain.
“A lot of families are left to deal with chronic pain on their own and are resorting to managing it as best they can at home, having given up hope of effective support from health services.
“What’s desperately required is a fully integrated service for chronic pain management that is very different to what we have just now, that is able to treat the whole family, not just the child."
Around 25% to 30% of children worldwide are known to have chronic pain – pain that lasts for 12 weeks or longer – and approximately 5% have chronic pain which causes them a disability.
A mother of a 16-year-old who has lived with chronic pain for four years, who supported the research, said: “So many of us have bad experiences with medical professionals that we have an innate trauma response when talking of anything medical related and we automatically pretend everything is fine.
“Working on this study, with caring medical professionals and understanding researchers, as well as others who have had very similar experiences, was a freeing and validating experience. For once, I felt heard, I felt believed, I felt accepted. I can’t actually articulate how powerful an experience this was because of that.”
Recommendations
The researchers have published a list of recommendations for primary care services – GPs and nurse practitioners – and policy makers. This includes the recommendation that a new model of caring for children with chronic pain is developed, which incorporates support for the whole family.
Dr France said: “We know that there are not many specialist services for children with chronic pain or a clear care pathway – that’s the steps in treatment and what the outcome would be – for children with chronic pain.
“We need a new model where other support services are included too – not just healthcare – so schools, charities and other organisations which address biological, psychological and social aspects, to better manage children’s chronic pain.”
The research, 'Managing children’s chronic non-cancer pain better (CHAMPION study)', involved experts from Stirling’s Nursing Midwifery and Allied Health Professions Research Unit (NMAHP-RU) and the Institute of Social Marketing and Health, as well as the University of Bath and Bangor University.
More information about the research can be found on the Cochrane Library website.