title: 'We didn't have a clue': Family caregivers' experiences of the communication of a diagnosis of schizophrenia.
abstract: BACKGROUND
  Despite widespread acceptance of the principle that patients should be informed about their diagnosis, many clinicians are reluctant to provide a diagnosis of schizophrenia. This study examines family caregivers' experiences of the communication of a schizophrenia diagnosis and related information.
  
  
  METHODS
  A generic qualitative methodological approach was used. In all, 13 family caregivers were recruited in regional New South Wales, Australia. Semi-structured interviews were used to explore their experiences and perceptions of discussing the diagnosis, prognosis and treatment of schizophrenia with mental health professionals. Interviews were recorded, transcribed, codes generated and thematic analysis undertaken.
  
  
  RESULTS
  Family caregivers described long and difficult pathways to being given a diagnosis, haphazard means of finding out the diagnosis, high unmet needs for information, exclusion from the medical care process and problematic communication and general interactions with mental health clinicians. Caregivers were unanimous about the importance of receiving a timely diagnosis, for them and their relative with schizophrenia.
  
  
  CONCLUSIONS
  Family caregivers are an integral part of the mental health-care system, and they should be included early in discussions of diagnosis and treatment of a person with schizophrenia. Their perspectives on communicating a diagnosis of schizophrenia provide important information for communication skills training of psychiatrists and other mental health professionals.
authors.affiliation: Discipline of Health Behaviour Sciences, Priority Research Centre for Health Behaviour, School of Medicine and Public Health, University of Newcastle, Newcastle, NSW, Australia sue.outram@newcastle.edu.au.
authors.forename: Sue
authors.initials: S
authors.lastname: Outram
authors.affiliation: Priority Research Centre for Translational Neuroscience and Mental Health, School of Medicine and Public Health, University of Newcastle, Newcastle, NSW, Australia.
authors.forename: Gillian
authors.initials: G
authors.lastname: Harris
authors.affiliation: Priority Research Centre for Translational Neuroscience and Mental Health, School of Medicine and Public Health, University of Newcastle, Newcastle, NSW, Australia Hunter New England Mental Health, Waratah, NSW, Australia.
authors.forename: Brian
authors.initials: B
authors.lastname: Kelly
authors.affiliation: Department of Medical Education, Hamad Medical Corporation, Dohar, Qatar.
authors.forename: Carma L
authors.initials: CL
authors.lastname: Bylund
authors.affiliation: Hunter New England Mental Health, Waratah, NSW, Australia.
authors.forename: Martin
authors.initials: M
authors.lastname: Cohen
authors.affiliation: Department of Psychiatry and Department of Public Health, Weill Cornell Medical College, New York, NY, USA.
authors.forename: Yulia
authors.initials: Y
authors.lastname: Landa
authors.affiliation: Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
authors.forename: Tomer
authors.initials: T
authors.lastname: Levin
authors.affiliation: Hunter New England Mental Health, Waratah, NSW, Australia.
authors.forename: Harsimrat
authors.initials: H
authors.lastname: Sandhu
authors.affiliation: Priority Research Centre for Translational Neuroscience and Mental Health, School of Medicine and Public Health, University of Newcastle, Newcastle, NSW, Australia Hunter New England Mental Health, Waratah, NSW, Australia.
authors.forename: Marina
authors.initials: M
authors.lastname: Vamos
authors.affiliation: Priority Research Centre for Translational Neuroscience and Mental Health, School of Medicine and Public Health, University of Newcastle, Newcastle, NSW, Australia Hunter New England Mental Health, Waratah, NSW, Australia Schizophrenia Research Institute (SRI), Darlinghurst, NSW, Australia.
authors.forename: Carmel
authors.initials: C
authors.lastname: Loughland
mesh_terms: D017028:Caregivers / Q000523:psychology*; D003142:Communication; D057210:Delayed Diagnosis; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D009517:New South Wales; D011368:Professional-Family Relations; D011379:Prognosis; D036301:Qualitative Research; D012559:Schizophrenia / Q000175:diagnosis*
keywords: Communication; diagnosis; family carers; psychiatry; schizophrenia