The 21-month study involving health specialists at The University of Nottingham and The University of Leicester will draw on the experiences of school children with asthma, diabetes, congenital heart disease and epilepsy to learn about the barriers that prevent them from taking medicines prescribed for them.
Funded with £328,247 from the National Institute for Health Research (NIHR) Service Delivery and Organisation Programme, the study will also devise a new strategy which will allow healthcare professionals to work more closely with children and their parents to overcome problems with sticking to their medication.
A whole host of different factors can influence children, particularly adolescents, in when and how they take their medication. This can range from peer pressure, for example not wanting to be seen as different by using their asthma inhaler in front of their friends, to a fear that the medication may have an unwanted side effect, which has been a particular problem in girls with diabetes who worry that their insulin will cause them to gain weight.
In addition to this, there may be other barriers such as learning difficulties or reluctant parents who worry about the long-term effect that drugs are having on their child’s health.
Problems can also arise from the healthcare system too. Often if a medicine is not licensed for children and needs to be specially produced in a different dosage or liquid form for ease of use there can be problems with establishing a regular supply. When visiting a GP, the doctor will often talk to the parent rather than the child, sometimes causing a breakdown in communication or preventing the child from raising any concerns they might have.
Professor Rachel Elliott, Lord Trent Professor of Medicines and Health in The University of Nottingham’s School of Pharmacy, is leading the study. She said: “Healthcare professionals like GPs and pharmacists are not always good at spotting patients who are not adhering to their medication. They also find it difficult to understand why someone wouldn’t take a medicine that would substantially improve their health.
“Other efforts have been made to improve adherence to medicines among children but studies have shown that simply trying to educate young patients about the benefit of using their medication is not enough. There are so many different reasons why a child might choose not to take their medication. One big issue is that simply by having to take medicine every day it’s a reminder that they have an incredibly serious illness and it’s often about denial or feeling like they have some control over their life.”
The first phase of the study will be to look at methods previously tried to address the problem and to talk to three groups of school-age children — five to seven year olds, 10 to 12-year-olds and 15 to 17-year-olds — and their parents about their experiences of the healthcare system and medication. They will also interview a range of healthcare professionals including GPs, hospital paediatricians, community paediatricians and pharmacists, nurses and GP practice managers and secretaries about the issues they face in communicating their services to young people. Lastly, they will consult with other stakeholder groups including patient groups such as Asthma UK and Epilepsy Action and healthcare-related organisations such as the Royal College of Practice Nurses.
During the second phase they will design a new strategy that can be embedded within the whole range of healthcare services for children — this may include encouraging children and parents to write down their concerns or questions as a driver for their consultation with their GP and giving health practitioners a range of extra resources targeted specifically at supporting younger patients.
Dr Monica Lakhanpaul, Community Paediatrician and Senior Lecturer in Child Health at The University of Leicester, said: “We are fully aware that children may not take medicines sometimes prescribed to them by health professionals.
“Reasons for this vary — children and families may not receive information that facilitates their understanding of why they are taking their medicine and therefore not understand its importance; they may not understand how to take the medicine or the health professionals may not prescribe the type of medication that children could take easily, eg tablets instead of liquids.
“We wish to find out why — and why not — children take their medicine and use this information to develop a tool allowing health professionals to work together with children and parents and carers to improve the medicine they are prescribed.
“A very important element of the study is to gain views from a number of different perspectives i.e from parents/carers, health professionals and children themselves.”
Lecturers at The University of Leicester are key collaborators in the study. Dr Hitesh Pandya is able to provide experience of working with families who are seen in the hospital and Dr Lakhanpaul, a Community Paediatrician, works with children who are managed out of hospital and who, in most cases, will not have a nurse or doctor giving their medication but need to take responsibility within the home or school environment.
Dr Lakhanpaul added: “Another advantage at Leicester is that we can provide access to a multi-ethnic community who are often under-represented in research studies. It is important to have perspectives from individuals from different socio-economic and cultural backgrounds. We hope to achieve this by involving families from Leicestershire.”
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