{
  "abstract": "Objective To explore how parents of children with de novo retinoblastoma (RB) experience the diagnostic process and acute treatment phase, and to identify factors that may support parental coping and adaptation.Design A qualitative interview study using reflexive thematic analysis.Setting National Retinoblastoma Unit at Aarhus University Hospital, Denmark.Participants Thirty-one parents (21 mothers, 10 fathers) of 21 children diagnosed with de novo RB were recruited via hospital follow-up clinics and a support group day.Results For most parents, the diagnostic process was short. In cases of diagnostic delay, parents described frustration and guilt due to missed symptoms. Receiving the RB diagnosis was described as a surreal experience, accompanied by feelings of shock, grief and loss of control. Parents faced challenges in adapting to rapid medical decisions and the unfamiliar demands of hospital protocols. However, meeting the clinical experts was a relief, as parents felt they were in capable hands, experiencing empathetic communication and a clearly framed treatment plan. Parents emphasised the importance of support systems, including family, healthcare professionals and the child’s resilience, as crucial for coping with and managing the diagnosis.Conclusions 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": [
    {
      "affiliations": [
        "DEFACTUM - Public Health Research, Aarhus, Denmark",
        "Department of Clinical Medicine, Aarhus Universitet, Aarhus, Denmark"
      ],
      "name": "Stina Lou"
    },
    {
      "affiliations": [
        "DEFACTUM - Public Health Research, Aarhus, Denmark"
      ],
      "name": "Kathrine Carstensen"
    },
    {
      "affiliations": [
        "DEFACTUM - Public Health Research, Aarhus, Denmark"
      ],
      "name": "Pernille Aakjær Mikkelsen"
    },
    {
      "affiliations": [
        "Department of Ophthalmology, Aarhus University Hospital, Aarhus, Denmark"
      ],
      "name": "Peter Skov Jensen"
    },
    {
      "affiliations": [
        "Department of Ophthalmology, Aarhus University Hospital, Aarhus, Denmark"
      ],
      "name": "Morten Lyng Høgild"
    },
    {
      "affiliations": [
        "LIVSKRAFT, Childhood Cancer Rehabilitation, Aarhus, Denmark"
      ],
      "name": "Rasmus Thøger Christensen"
    },
    {
      "affiliations": [
        "Department of Experimental Clinical Oncology, Aarhus University Hospital, Aarhus, Denmark"
      ],
      "name": "Jens Overgaard"
    },
    {
      "affiliations": [
        "Department of Ophthalmology, Aarhus University Hospital, Aarhus, Denmark"
      ],
      "name": "Steen Fiil Urbak"
    },
    {
      "affiliations": [
        "Department of Ophthalmology, The Royal Children’s Hospital Melbourne, Parkville, Victoria, Australia",
        "Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, East Melbourne, Victoria, Australia",
        "Ophthalmology, Department of Surgery, University of Melbourne, Parkville, Victoria, Australia"
      ],
      "name": "Sandra E Staffieri"
    },
    {
      "affiliations": [
        "Department of Clinical Medicine, Aarhus Universitet, Aarhus, Denmark",
        "Department of Clinical Genetics, Aarhus University Hospital, Aarhus, Denmark",
        "Centre for Rare Diseases, Department of Paediatrics, Aarhus University Hospital, Aarhus, Denmark"
      ],
      "name": "Pernille Axél Gregersen"
    }
  ],
  "title": "At the epicentre: a qualitative study of how parents of a child with de novo retinoblastoma experience the diagnostic process and primary treatment",
  "uid": "03f337bb-cd45-5bbb-b2c5-8abafca407a9"
}