“Sometimes I feel like a pharmacist”: identity and medication use among adolescents with juvenile arthritis

J E Mcdonagh,F J Smith,J Prescott,K L Shaw,N J Gray,R Roberts

doi:10.1186/s12969-016-0117-1

J E Mcdonagh, F J Smith + Show 4 more

Open Access

https://doi.org/10.1186/s12969-016-0117-1

Copy DOI

Abstract

BackgroundTaking medicines as intended is difficult for everybody, but young people going through adolescence have greater problems than adults and younger children. 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. The aim of this study was to examine the relationships between identity and medication use among young people with juvenile arthritis.MethodsA prospective qualitative study was undertaken to collect private online ‘blog’ style data from young people (aged 11–19 years) with juvenile arthritis, and their parents, to examine their views about their condition, identity, medication and use of health services. Participants were identified from a large paediatric hospital in the UK.ResultsYoung people (n = 21) with a median age 14 years (range 11–17 years) posted a median (range) of 8 (1–36) blogs and parents (n = 6) posted 4 (1–12) blogs. Young people gave a strong sense of both private and public identity that was intertwined with their arthritis and treatment. It was evident that young people’s self-care was intrinsically linked to their attempts to maintain a sense of individually and socially constructed definitions of normality. The act of taking medication, and the consequences (positive or negative) of that act, had an impact both personally and socially.ConclusionsYoung people with juvenile arthritis reflect on their medication as a factor affecting their perception of themselves. Acknowledging the roles of both personal and social identity will be important in any strategies to support optimal medication use. This includes an understanding of the identity transformations that young people can experience and how decision-making may be affected by their attempts to retain pre-diagnosis identities and/or develop new social identities.

Highlights

Taking medicines as intended is difficult for everybody, but young people going through adolescence have greater problems than adults and younger children
Age and developmentally appropriate services, with particular reference to adolescents, have been reported nationally and internationally as a key mechanism to improve health outcomes for young people [1]. This has been recognised in rheumatology for over a decade [2]
While there have been some encouraging advances in youth-friendly care [3], many young people remain inadequately prepared to manage their condition in adulthood [4, 5]

Summary

Introduction

Taking medicines as intended is difficult for everybody, but young people going through adolescence have greater problems than adults and younger children. Age and developmentally appropriate services, with particular reference to adolescents, have been reported nationally and internationally as a key mechanism to improve health outcomes for young people [1]. That young people want to assume self-care responsibilities [6, 14, 15], McDonagh et al Pediatric Rheumatology (2016) 14:57 and that some rheumatology professionals encourage them to do so [11, 12], effective self-management training is not routinely provided [16, 17] The implications of this include adverse health outcomes, reduced quality of life and lost healthcare resources [7, 18]

Objectives

Methods

Results

Discussion

Conclusion