At the epicentre: a qualitative study of how parents of a child with <i>de novo</i> retinoblastoma experience the diagnostic process and primary treatment
Parents faced a sudden and disruptive transition from symptom recognition to life-altering diagnosis and treatment. While professional care and communication were experienced as supportive, they did not eliminate the emotional impact. Clinical pathways should prioritise early validation of parental concerns and provide transparent communication, both prior to referral and throughout treatment. Future research should examine longer-term parental adjustment and identify interventions that support emotional resilience beyond the acute phase.
Authors
- Morten Lyng Høgild (ORCID: https://orcid.org/0000-0002-2442-6992)
- Kathrine Carstensen (ORCID: https://orcid.org/0000-0002-4999-1314)
- Pamela Mikkelsen (ORCID: https://orcid.org/0000-0001-5102-6655)
- R Christensen
- Pernille Axél Gregersen (ORCID: https://orcid.org/0000-0003-3424-0590)
- Steen F. Urbak (ORCID: https://orcid.org/0000-0002-6849-4073)
- Peter Skov Jensen (ORCID: https://orcid.org/0000-0002-2487-3223)
- Jens Overgaard (ORCID: https://orcid.org/0000-0002-0814-8179)
- Stina Lou (ORCID: https://orcid.org/0000-0001-6177-5780)
- Sandra E. Staffieri (ORCID: https://orcid.org/0000-0003-3131-9359)
Institutions
- Royal Children's Hospital (AU)
- The University of Melbourne (AU)
- Aarhus University (DK)
- Aarhus University Hospital (DK)
- Centre for Eye Research Australia (AU)
- Central Denmark Region (DK)
- Danish Cancer Society (DK)
Publication Details
- Journal
- BMJ Open
- Published
- 2025-11-01
- DOI
- https://doi.org/10.1136/bmjopen-2025-106738
- Primary Topic
- Childhood Cancer Survivors' Quality of Life
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Børnecancerfonden