“If I go down, if I crumble, then everybody does” — identity crisis and emotional strain in parents of children with rare and undiagnosed conditions: a qualitative study
Tara Maria Hoffmann, Bettina Friedrich, Celine Lewis · 2026
Read “If I go down, if I crumble, then everybody does” — identity crisis and emotional strain in parents of children with rare and undiagnosed conditions: a qualitative study by Tara Maria Hoffmann, Bettina Friedrich, Celine Lewis (2026) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/pmc-13602518.txt.
Description
Tara Maria Hoffmann and colleagues explored identity strain in parents of children with rare, undiagnosed conditions. Caring for such a child strains emotional health, yet lived experience research remains thin. Their 2026 interview study spoke with 24 parents of undiagnosed children undergoing whole-genome sequencing across English NHS sites, sampled for high anxiety, family impact, or low resilience, before results returned.
Parents rebuilt their sense of self around caregiving, torn between heroic carer and ordinary parent, while grieving the family life they had pictured. Health-system navigation and social expectations deepened the strain, with mothers most often adopting the heroic role. Uncertainty itself weighed on mental health. Hoffmann and colleagues call for counselling support across the testing journey and research on how result return affects wellbeing.
Catalog record
| CREATOR | Tara Maria Hoffmann, Bettina Friedrich, Celine Lewis |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 76 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |