Experience, impact and needs of informal parental caregivers around the communication of a diagnosis of schizophrenia

Abstract

Aims: To qualitatively characterize the experience, impact and needs of informal family caregivers around the communication of a diagnosis of schizophrenia. Methods: In all, 13 informal family caregivers were recruited. All were parents. Semi-structured interviews were used to explore their experience of the diagnosis of schizophrenia, the impacts of the diagnosis and the needs related to the diagnosis around its communication. Interviews were recorded, transcribed, codes generated and mixed deductive–inductive thematic analysis undertaken. Results: Participants described receiving the diagnosis of schizophrenia for their relative as a devastating experience, although some nuanced the experience with a sense of relief of finally naming the disorder and getting access to care. Caregivers’ experience and representations prior to hearing the diagnosis played an important role in the way the ‘news’ was internalized. The communication of the diagnosis constituted a starting point for acceptance of the reality of the illness in participants. Numerous unmet needs around the communication of the diagnosis were reported by participants, including personnalized support, specific explanations about the disorder and guidance on their role as caregiver. Conclusion: A specific attention must be given to the communication of the diagnosis of schizophrenia to the informal family caregivers. Information giving must be early, comprehensive, personalized and embedded into tailored education and support programmes for caregivers to facilitate illness acceptance and adaptation.