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‘Arthriting’

arthriting‘Arthriting’ Exploring the relationship between identity and medicines use, and to identify the contribution of medicines and pharmacy services, for the care of young people with arthritis

  • Dr Janet McDonagh, Senior Lecturer in Paediatric and Adolescent
  • Rheumatology at Birmingham Children’s Hospital1, and Dr Nicola Gray, an independent pharmacist researcher.

Aim

To investigate the relationship between identity and medication use amongst young people with arthritis, and to explore the role of pharmacy in delivering services to this group.

Introduction

Taking medicines as intended is difficult for everybody, but we know that young people going through adolescence have greater problems than adults and younger children. We do not know all of the reasons for this. One of the most important things that happen during the teenage years is the development of individual identities, which might not remain constant during this time and can be affected deeply by the diagnosis of a long-term condition. Young people with arthritis have extra challenges: they may feel different about their body image, and they may have complex medicine routines – including injections – that don’t fit with their ideas of ‘normal’, and that interfere with the activities that they would like to do. Their medicines can make them feel really sick, can prevent them from drinking alcohol, and have to be taken even when they feel well – to keep them that way.

Pharmacists in community and hospital practice have the potential to help young people with long-term conditions like arthritis. Their help can be very practical, like putting a system for getting repeat prescriptions in place, or it can be focused on the information that young people need about the risks and benefits of their medicines. Pharmacists do not get much training, however, about the special needs of young people – these include keeping discussions and information private; helping young people to work with their families to keep healthy; and creating a friendly and welcoming environment where young people will feel comfortable. This project will help us to raise awareness of young people’s concerns with pharmacists and other people who are involved in the supply and use of medication for arthritis.

Objectives

To investigate the relationship between identity and medication use amongst young people with juvenile arthritis.

To map out current patterns of health care among young people with juvenile arthritis, and to map how pharmacy and medicines are part of their treatment.

To explore current knowledge and practice of pharmacists about young people and juvenile arthritis.

During the project, young people with arthritis from the clinics at Birmingham Children’s Hospital (BCH) – and some parents – are writing blogs on our website www.arthriting.org.uk , specially created for the project under the guidance of young people at BCH. These private blogs include thoughts about how arthritis affects how they see the world, and perhaps how the world sees them; positive and negative aspects of taking medication, how arthritis might affect their goals in life, and advice that they would give to other young people with arthritis. Young people and parents will also have the chance to complete a survey about the tasks that they have to do with their medication, and where they get their information about arthritis and medication. We will also explore messages sent to the Young People’s Discussion Forum of the Arthritis Care website that cover similar issues about arthritis, identity and medication.

From this project, we will share our findings with young people and professionals together. We will do this through a joint workshop in April 2013, and through conference presentations and writing articles in journals that professionals read. The website will be a place where people can get the results and read about the project. We will also look for further funding to explore how we can promote better understanding of young people’s and their families’ medication support needs among pharmacists, doctors and nurses.

This project has now been completed with a full report and executive summary for viewing.

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