Innovative research methods extend pharmacy’s reach to young people

Charlotte Coates, research manager at the Royal Pharmaceutical Society, describes “Arthriting”, a pharmacy-led project to help young people cope with their arthritis.

Many people find adhering to a complicated medication regimen challenging. Young people with long-term conditions are known to find keeping on top of their medicines harder than children and adults.1

For a young person developing his or her individual identity, moving away from parental support and searching for their place among their peer group, the management of a long-term condition can have a considerable impact on sense of self and body image. Add to that the need to take a range of medicines with side effects that make a young person feel “different” from their peers and limit their sporting and social activities and you have a challenging problem for healthcare professionals, young people themselves and their carers.

Research originally commissioned by the Pharmacy Practice Research Trust, now Pharmacy Research UK, explores this issue, focusing on young people with juvenile idiopathic arthritis (JIA). This condition, perhaps more than many others, carries with it many associations at odds with the perception of what it is to be young.

The project, “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”, was led by Nicola Gray, a pharmacist and researcher, and Janet McDonagh, consultant rheumatologist at Birmingham Children’s Hospital NHS Foundation Trust (BCH).2 Young people (aged 11 to 15 years) undergoing treatment for JIA at BCH were invited to blog about their feelings around their identity, condition, medication and use of health services.

The project team

The Arthriting project team was a multidisciplinary group of professionals working to understand better the needs of young people with juvenile idiopathic arthritis — Nicola Gray (pharmacy), Janet McDonagh (rheumatology), Kevin Harvey (sociolinguistics), Julie Prescott (psychology), Karen Shaw (psychology), Felicity Smith (pharmacy), Rachel Stephenson (occupational therapy), David Terry (pharmacy), Kate Fleck (Arthritis Care), and Rachel Roberts (Pharmacy Research UK).

The project was enhanced by additional data provided by a survey that young people and their parents had the chance to complete about medication and information-seeking, and a case note review of 150 young people attending the rheumatology clinics at BCH. There was also an observation of the young people’s discussion forum on the Arthritis Care website.

Young people attending rheumatology clinics at BCH, and their parents, were given an information sheet about the project and invited to attend a meeting to generate ideas to inform the development of the project website. The purpose of the website was to contain information about the project along with a blogging area — a safe space for the young people to contribute anonymously.

Their posts were viewed only by the researchers. When asked to think about possible names for the project, one girl suggested “Arthriting” and the group of young people recruited to participate in the project named themselves the “Arthriters”. Twenty-one young people, along with six of their parents, signed up, posting an average of eight blogs each.

Over the course of the project, we at Pharmacy Research UK were heartened to hear Dr Gray’s updates: it was clear, from early on, that the project had captured the imagination of the young people. The online space enabled them to speak candidly about their lives in a way that they would perhaps not feel able to face to face.

In the blog postings, the participants unpacked their feelings about their condition and medication. Their reflections included attitudes to school, medication side effects and myths about arthritis that they encountered on a regular basis.

Blog postings (samples of which are reproduced, unedited, below) included humorous, perceptive and mature viewpoints:

“I kind of enjoy being in charge of my medication because sometimes I feel like a pharmacist. (Weird. I know!!!)”

“I used to do a lot of running, and when I was diagnosed I was unable to do it. I do at times miss it, and I do feel that people saw me differently. I only say this because I was known as a runner, and when I was unable to run anymore I was almost isolated from the rest of my peers.”

“I’m just tired of taking meds, every day and going to school and my wrist is hurting so bad it hurts just to hold it up or grip things I can’t write, just about typing with my left hand.”

“I often find that explaining to people what arthritis is and why you go to hospitals a lot, it gets tiring and annoying especially when they end it with comments like ‘my nan has that’ or whatever. Yes your nan may have it but others can get it too! I am however lucky to have my boyfriend as he too is familiar with hospitals and i can totally rely on him to carry me when im in pain. Result! :)”

In the executive summary of the research, Dr Gray outlines a summary of key themes from the blogs: “Key comments about identity included a largely positive self-image, and determination to achieve their goals, while realising that there were some limits to their physical and emotional endurance that manifested themselves at school and in social activities. They strove for ‘normality’, like any other young person, and expressed a need to communicate with other young people with arthritis to compare their experiences with someone who would understand their life context. The condition might be hidden from other people: choices about disclosure were complex.

“The young people’s comments on their arthritis condition included reflections on the physical and emotional demands of the condition, and changes since diagnosis. Pain was the most common symptom mentioned, but stiffness and tiredness were also common. Mood changes beyond the normal swings of adolescence were reported: parents showed their own emotional challenges seeing a loved one in pain.

“Blogs regarding medication and health services showed active decisions were made regarding relative benefit and harm, and the significant side effects of some medication (notably methotrexate). Most health providers were spoken of positively, but pharmacist references were limited and mixed.”

Parents were key players in the supply and administration of medicines and transfer of responsibility varied in individual cases.

As part of the dissemination strategy for the project, the research team held a workshop for the young people, their parents and healthcare and rheumatology stakeholders, including those working in pharmacy. In keeping with the ethos of Arthriting, the workshop was underpinned by the participation of the young people. Working with an experienced facilitator from the Association for Young People’s Health (AYPH), a national charity working to raise the profile and understanding of young people’s health needs, the young people explored what they believed the recommendations of the research should be.

I attended the event and was touched by the impact that participating in the research had had on the young people and their parents. The young people were genuinely engaged in communicating about their condition, and several of the parents commented to me that being an “arthriter” had had a positive effect on the way their son or daughter felt about their condition and medication regimen. Meeting others in the same situation had enabled the young people to feel more normal.

The young people made a film in which they interviewed stakeholders including  John Ioannou, Debajit Sen and Lucy Wedderburn, consultant rheumatologists from University College London Hospital, and Alastair Buxton, head of NHS services at the Pharmaceutical Services Negotiating Committee. Mr Buxton reflected on the importance of actively consulting young people to ascertain their needs when designing NHS services. Anthony Sinclair, chief pharmacist at Birmingham Children’s Hospital, emphasised the importance of constant feedback from service users.

It was an informative evening for the young people and adult stakeholders alike. The young people bonded over their shared condition. For their parents it was an opportunity to share experiences of bringing up a child with a long-term condition in a relaxed supportive environment. During my time at the Royal Pharmaceutical Society, supporting the work of Pharmacy Research UK and its researchers, I had not — until the workshop — met any patients on whom our research had had a positive impact. It was exciting for myself, my colleague Rachel Roberts and Pharmacy Research UK trustee Brian Edwards to meet the young people at the workshop and find out more about their lives.

One of the key goals of our charity is to improve the health of the public through excellence in pharmacy research, so it was great to see this in action and pleasing to witness the innovative and inclusive way the researchers interacted with the young people.

Last year the RPS launched “Medicines optimisation: helping patients to make the most of their medicines”.3 This good practice guidance for healthcare professionals working in England underlines the importance of aiming to understand the patient’s experience. It is important to empower patients to have the confidence to share their views about what their conditions and medicines mean to them, and how these impact on their daily lives.

Work like the Arthriting project helps to underline how important it is for healthcare to connect with different groups in society, to extend our reach to meet groups such as young people on their own terms, and to understand the complex and personal attitudes that people have to their medicines.

The final reports from this project are available to read on our website ( and the key recommendations for pharmacy are reproduced in the Panel.


  • Pharmacists must ensure that young people enjoy the same level of welcome and access to pharmacy services for people with long-term conditions as people in other age groups do.
  • Pharmacists must consider their role in medicines optimisation for children and young people, both in terms of the technical supply of medicines under their guidance, and the provision of information.
  • Pharmacists must consider the developmental and psychosocial factors that influence medicine-taking in adolescence, and be flexible about their approach to information giving and adherence monitoring.
  • Medicines use review, the new medicine service and the chronic medication service should be used to supply, and annually revisit, age- and developmentally appropriate information for young people and families; these processes must be linked with members of the rheumatology multidisciplinary team and other agencies.
  • Activities must be underpinned by a research-informed training and education strategy that explores and develops pharmacists’ confidence and competence to engage with young people and families.
  • A discussion forum for young people with arthritis, particularly aimed towards 11- to 15-year-old users and only open to this age group, should be developed to enable communication about a range of topics.


  1. Petrie KJ, Perry K, Broadbent E et al. A text message programme designed to modify patients’ illness and treatment beliefs improves self-reported adherence to asthma preventer medication. British Journal of Health Psychology 2012;17:74–84.
  2. Gray N, McDonagh J, Harvey K et al. 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. Available at: (accessed 1 January 2014).
  3. Royal Pharmaceutical Society. Medicines optimisation. Available at: (accessed 6 January 2014).
Last updated
The Pharmaceutical Journal, PJ, 4/11 January 2014, Vol 292, No 7791/2;292(7791/2)::DOI:10.1211/PJ.2024.1.306910

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