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

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.

A developmental arrest? Interruption and identity in adolescent chronic pain

“…Consistent with existing studies of youth with arthritis and type 1 diabetes, our findings highlighted that youth with pain described that their condition influenced their perception of the world and resulted in a sense of loss of identity for some. 6 , 23 Yet, there are important differences in our findings compared with those of other studies, which may reflect the unique nature of chronic pain. In our study, this perceived loss of identity seemed to be due to social labelling as a “patient” or “disabled,” rather than the actual experience of pain or associated disability and resulting inability to undertake previously valued activities.…”

“…This would provide information concerning the dynamic changes in adolescents' perspectives and experiences regarding development in the context of chronic pain across this period and elucidate the potential impact of an individual's pain journey on identity development. Consistent with findings in juvenile arthritis, 23 it is possible that the nature of identity formation in adolescents with chronic pain may differ between those whose pain began in adolescence vs those whose pain began in childhood.…”

Untimely illness: When diagnosis does not match age‐related expectations

“…Similarly, the relevance of “biographical disruption” is also unclear when the experiences and meanings of chronic illness take into account that a major task of adolescent development, healthy or otherwise, is the development of one's identity or “self‐concept” . In this context, chronic illness can be seen more as “biographical contingency” than as “biographical disruption”, with young people attempting to reconcile their pre‐illness identity with developing an altered identity that incorporates chronic illness as an accepted component of life . However, other researchers such as Grinyer have suggested that adolescent development in fact exacerbates biographical disruption, given that at this stage, identity is particularly fragile and key developmental goals such as increased autonomy and independence could be compromised.…”

The impact of arthritis on the educational and early work experiences of young people: a qualitative secondary analysis

“…For some, this included the pressure of being able to achieve a professional status that ensured enough autonomy so as to secure any required accommodations without having to depend on other people's understanding and decisions. Alongside these issues, that young people felt that being able to take their arthritis into consideration when planning for their future gave them a sense of balance in their lives, suggest that there is an important impact on identity formation -an implication raised by previous research on young people with chronic illness [35], [36]. Sociological concepts of 'biographical disruption' in adults [37] describe how chronic conditions can force individuals to reappraise the meaning of their lives as highlighted in this study with reference to career aspirations.…”