First appeared in The OT Magazine issue 23, July/August 2018
Occupational therapy students at the University of Southampton, Bridget Crowley, Hannah Gibbs and Aiesha Ramsey embarked on a project to produce a self-management guide for young people diagnosed with inflammatory arthritis. Here they share their experience and the success of the project.
During the second year of our three-year course at the University of Southampton, one of our modules involved the incorporating of design principles with regards to occupational therapy. This includes aspects such as the design of the environment, architecture, sports and exercise, bespoke products and animal therapy. We were tasked with forming a group and this encompassed the three of us working closely with a service user who provided feedback throughout the project. We were given the opportunity to work with the hand therapy department at the Queen Alexandra Hospital in Hampshire to design an aid, tool or information packet that would enable service users with inflammatory arthritis to formulate better coping strategies and encourage self-management and education.
The design of the leaflet was initially inspired by Rosie Norman, an OT at the Queen Alexandra Hospital who expressed that patients would benefit from self-management education before seeing a therapist, due to the long waiting lists. Additionally, when they are given an appointment; they are usually presented with a box of “dated” joint protection tools, which consists of mainly jam jar openers and information literature aimed at older people, with the front covers using people of a more advanced age – our design mentor did mention that she didn’t have access to sources directed at younger people.
Much of the self-management literature provided is often directed towards older generations and is weighted with statistics and medical jargon. When designing the layout of the leaflet we used feedback from those with arthritis and from young people to influence the outcome of the leaflet.
Aim of project
The aim of the project was to design a self-management guide for younger people (18–35 years) diagnosed with inflammatory arthritis who were on a waiting list to see an occupational therapist at Queen Alexandra Hospital, Portsmouth. This was to introduce the concept of self-management and the importance of this when living with a long-term chronic condition before meeting a therapist. It was designed to assist in the dynamic process of making lifestyle changes and incorporating coping strategies to the patient’s life in light of their diagnosis.
We wanted to provide a holistic approach, involving occupational, medical and mental health perspectives, to inform the reader about how their life may change with their new diagnosis and make suggestions about how to adapt and manage their long-term condition.
When designing the self-management guide, we found that although there is a plethora of research and information on arthritis, it was still a variable and diverse disorder that affects people in many different ways. This highlighted the importance of incorporating service user experiences and feedback, particularly as none of us have personal experiences with this disease. As training occupational therapists, it’s part of our mantra and education to involve the service users continually and collaboratively throughout the process of treatment, as they are the experts on themselves. The world is becoming more technological and gone are the days of searching through catalogues for equipment. We want to highlight that a diagnosis of a long-term condition does not mean life is now over, it just now needs some modification with a little trial-and-error to each individual. Self-management techniques can now include more technological perspectives and should take advantage of programmes like free apps that can be downloaded on smart phones and tablets.
We are currently in talks with Arthritis Research UK who have expressed interest in our guide and potentially using our work as a future publication and resource for the general public and in hospitals, as they are at a stage of amalgamating their patient education leaflets.
We would like to work with this organisation to further highlight arthritis as a disease among younger populations and reach more people to expand awareness.
We would like to acknowledge the supervision and guidance of Rosie Norman (OT) at Queen Alexandra Hospital and Maggie Bracher (OT/ lecturer at The University of Southampton).