The end of being a straight child: an autoethnography of coping with adolescent idiopathic scoliosis

Abstract

Purpose

In the field of research on adolescent idiopathic scoliosis, the personal dimension is undervalued. Even the most comprehensive and current recommendations focus on biomedical issues and are entirely based on quantitative studies. Reports and narratives presenting people’s preferences, values, views, and opinions, especially of those affected by this health condition, are not considered in those reports. This article’s aim is to present personal experiences of scoliosis screening, diagnosis, and treatment, to contribute to the discussion.

Methods

This is an evocative narrative autoethnography study, which allows focusing on the personal story of the author’s experiences of adolescent idiopathic scoliosis management, connecting it to the rehabilitation context.

Results

Experiences of non-person-centred rehabilitation resulted in stigmatisation, distress, and emotional upset, including anxiety and fear. In contrast, person-centred therapeutic relationship involved more positive outcomes of care, such as becoming an engaged co-responsible and active partner in rehabilitation.

Conclusions

It is strongly suggested to promote biographical research into the personal experiences of all aspects of adolescent idiopathic scoliosis, to identify patients’ preferences and values more clearly. Furthermore, screening, diagnosis and treatment processes should be reviewed in terms of person-centredness, to ensure they are responsive to young people’s needs in the vulnerable time of puberty.

IMPLICATIONS FOR REHABILITATION

• Adolescent idiopathic scoliosis, including the treatment, and even the diagnosis, may be stigmatising and may lead to emotional and psychosocial harms

• Adolescent idiopathic scoliosis screening, diagnosis and treatment processes need to be person-centred, recognising young people’s needs for privacy and support in the vulnerable time of puberty

• Emotional support from therapists ought to be part of the professional relationship based upon being with another person

• An explication of experiences of living with adolescent idiopathic scoliosis should be considered as a legitimate contribution to the practical and scientific understanding of this health condition

Keywords:

• Scoliosis
• diagnosis
• treatment
• adverse effects
• person-centred care
• personal experiences
• qualitative research
• autoethnography

Acknowledgements

I wish to thank my both co-authors, for their indispensable help, expertise, inspiration, and faith in me in the formation of this article. Professor Ejgil Jespersen contributed to the research conception, as well as shared his methodological knowledge, scientific and in-depth understanding of body and ICF issues. Professor Maciej Płaszewski contributed with the issue of screening, diagnosis and treating AIS in terms of Evidence-Based Practice. Moreover, both assisted in numerous discussions and revisions of the article. I am the first author of this article and contributed with my life experiences, literature review and the issues around subjective experience. I also wish to thank my husband, Rob Grantham, for all his love and help, acceptance of what is, and an ongoing support.

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

There was no external funding for this study. The study was undertaken as part of University employment. The University had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript.