Pre-diagnosis emotions and experiences of parents of children with immunodeficiency disorders: A qualitative study.
TL;DR
It was found that parents of children with immunodeficiency disorders experienced negative emotions and experiences prior to diagnosis, and parents' experiences were characterized by a perceived lack of control over their children's recurrent illnesses.
Abstract
Background
Parents of children with immunodeficiency disorders may experience emotional difficulties prior to diagnosis. For this reason, the present study aims to examine the pre-diagnosis emotions and experiences of parents of children with immunodeficiency disorders by using a phenomenological approach.
Methods
This qualitative study employed a descriptive phenomenological design. The study was conducted between January and April 2026 with parents of children receiving treatment for immunodeficiency disorders at the Pediatric Day Treatment Unit of a university hospital. Nineteen parents were recruited using purposive sampling. Data were collected through semi-structured, in-depth interviews, all of which were audio-recorded. The data were analyzed using Braun and Clarke's six-step inductive thematic analysis method.
Results
The thematic analysis revealed six interconnected themes reflecting parents' experiences before the diagnosis of immunodeficiency: helplessness during the prediagnostic period, anxiety during the prediagnostic period, perceived inadequacy and guilt, protective responses to recurrent infections, social isolation and being judged, and the burden of prolonged caregiving. Overall, parents' experiences were characterized by a perceived lack of control over their children's recurrent illnesses, uncertainty surrounding the diagnostic process, self-questioning and guilt, intensive efforts to prevent infections, feelings of being misunderstood and judged, and substantial physical and emotional caregiving burden.
Conclusion
It was found that parents of children with immunodeficiency disorders experienced negative emotions and experiences prior to diagnosis. APPLICATION TO PRACTICE Identifying the emotions and experiences of parents of children with immunodeficiency disorders prior to diagnosis can facilitate the individualization of nursing care and the planning of appropriate psychosocial support interventions.