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Self-management for adolescents with fluctuating chronic disease: time for a more holistic approach
  1. Basil Kadoura1,2,
  2. Alène Toulany1,2,3,4,5
  1. 1Division of Adolescent Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada
  2. 2Temerty Faculty of Medicine, Department of Paediatrics, University of Toronto, Toronto, Ontario, Canada
  3. 3Child Health Evaluative Sciences, SickKids Research Institute, Toronto, Ontario, Canada
  4. 4Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
  5. 5ICES, Toronto, Ontario, Canada
  1. Correspondence to Dr Alène Toulany, Division of Adolescent Medicine, The Hospital for Sick Children, Toronto, ON M5G 1X8, Canada; alene.toulany{at}sickkids.ca

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Living with a chronic health condition in adolescence frequently impacts a young person’s biopsychosocial developmental trajectory, especially their sense of self and strong desire to ‘fit-in’. Healthcare providers have an important role to play in supporting adolescents’ development of self-management skills, increased independence, positive self-esteem, and healthy peer and family relationships. In the article entitled, ‘Self-management support for young people living with fluctuating chronic diseases,’ Schoemaker et al1 highlight that young people with fluctuating chronic illness experience a duality of identity—an autonomous, self-confident adolescent during healthy periods, and a more dependent one with loss of control during flares, and thus require a unique approach to self-management skill development. This experience is not limited to adolescents with chronic illness. Many young people with marginalised intersectional identities (eg, sexual orientation, gender identity and socioeconomic status) also report the need to live ‘parallel lives’.

Furthermore, Schoemaker et al outline the unique challenges and needs of adolescents with fluctuating chronic illnesses, particularly the functional and social aspects of daily living.1 Based on the evidence and their personal experience, the authors believe current self-management programmes do not support young people with the unpredictability of flares and may even be counterproductive for adolescents with fluctuating disease. Furthermore, the authors describe that this population of adolescents with chronic illness have unique social experiences based on their disease status, choosing to interact with peers during their ‘good …

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Footnotes

  • Twitter @dralenetoulany

  • Contributors BK and AT worked jointly in the conception and writing of this editorial. AT provided supervision and critically revised the final submitted manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Commissioned; internally peer reviewed.

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