“We Weren’t Given a Manual” So We Wrote One: An Irish Traveller Family Navigates Rare Genetics, Systemic Barriers, and Unseen Labour
DOI:
https://doi.org/10.33178/SMJ.2026.10Keywords:
Complex Care Needs, Medical Humanism, Inclusive Medicine, Rare Genetic Disorders, Intersection of ethnicity and healthcareAbstract
N/A. This is a special edition feature submission based on the interview of the family of the only documented paediatric congenital titin myopathy with central, bulbar dysfunction in Ireland.
References
1. McFadden, P., O’Connell, R., O’Leary, M., & Walsh, F. (2024). Health disparities among Traveller families in Ireland: Barriers, bias, and unmet needs. Irish Journal of Social Policy, 12(1), 45–63.
2. O’Shea, N., Doran, T., & Kavanagh, A. (2025). Invisible labor: The mental health cost of caregiving in ethnic minority communities in Ireland. Irish Medical Review, 78(2), 112–128.
3. Center for Research on Humanism in Medicine. (n.d.). Humanism in medicine: What does it mean and why does it matter? Saint Louis University School of Medicine. https://www.slu.edu/medicine/about/faculty-resources/cedar/posts/humanism.php
4. Temerty Faculty of Medicine. (2023, May 18). Teaching humanism, nurturing empathy. University of Toronto. https://temertymedicine.utoronto.ca/news/teaching-humanism-nurturing-empathy
Published
License
Copyright (c) 2026 Samiha Sajida
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
How to Cite
