‘Getting on with life’: resilience and normalcy in adolescents living with chronic illness

Abstract

This paper shows the ways in which ‘resilience’ operates with adolescents whose lives have been marked by a significant health condition. It is based on a qualitative study that followed 31 adolescents, dealing with chronic illness, across 3 years of their lives. The study placed the adolescents at the centre of the research process, allowing them to articulate their experiences and perceptions of themselves, both visually and verbally. A complex portrayal of risk and resilience emerged as the young people spoke about the challenges they faced. Described by many around them as ‘resilient’, the research found that one key component of this was the participants’ desire to live lives as ‘normal’ as possible even when faced with management challenges associated with their health conditions. Even though many described ongoing disconnection with school, education still played an important role in their life goal setting.

Keywords:

• adolescence
• resilience
• normalcy
• chronic illness

Notes on contributors

Peter Ferguson is an academic within the Melbourne Graduate School of Education, University of Melbourne and has taught and researched in the area of adolescence and connection with schooling for many years. Research interests include adloescent perceptions of school, curriculum and assessment.

Hannah Walker is a research officer in the School of Population Health, University of Melbourne. She has worked as a social researcher for many years and has experience in a number of disciplines including sociology, education, and public health. Her research interests include the sociology of health and illness, particularly the lived experience of illness.

Notes

1. For the purposes of this research, chronic illness is defined as ‘a condition which: lasts for a considerable period of time or has a sequelae which persists for a substantial period and/or persists for more than three months in a year or necessitates a period of continuous hospitalisations for more than a month’ (Thompson and Gustafson 1996 in Shiu 2001, 270).

2. The Royal Children's Hospital Education Institute supports young people to continue their education during time spent in hospital through the activities of education consultants and their teaching and learning activities on the wards.

3. Participants had all used the services of The Royal Children's Hospital Education Institute at the Royal Children's Hospital, based in Melbourne, Victoria. The majority of the young people who visit the hospital are from metropolitan, regional and rural areas of Victoria; however, a small number of inter-state patients also visit the hospital and some of the participants in this study were from Tasmania.

4. http://www.education.unimelb.edu.au/keepingconnected/.