A Qualitative Exploration of Service Users’ Information Needs and Preferences When Receiving a Serious Mental Health Diagnosis

Abstract

Helpful strategies for communicating news of a serious mental health diagnosis are poorly understood. This study explored service users' preferences for how they would like clinicians to deliver such news when a diagnosis of mental illness is made. Qualitative interviews were conducted with forty-five individuals identifying with serious mental illness in eleven community based mental health facilities. Inductive thematic analysis resulted in eight primary themes. Five themes related to the structure and content of the discussion; including a focus on information exchange, using an individualized collaborative partnership paradigm, addressing stigma, balancing hope with realism, and recognizing the dynamic nature of diagnosis. The remaining themes related to the involvement of others; including the importance of clinicians' communication and relationship skills, involvement and education of carers, and offering an opportunity for peer support. The product of the synthesis of themes is a step-wise model for communicating news of mental health diagnosis.

Experiencing mental health diagnosis: a systematic review of service user, clinician, and carer perspectives across clinical settings

“…(p.1227) 64 I knew what was wrong with me, and if I knew what was wrong with me I had a chance of possibly understanding it better and maybe work on it a bit more… (p.461) 76 Because some people just think borderline personality means difficult patient you know and I, that's not my opinion, but the thing is because of all that bad press of borderline um I don't bring that up right away. (p.87) 86 Open diagnostic information sharing was often recommended by participants as it provided an understanding of the issues and symptoms, and facilitated access to treatment and support… (p.461) 76 It was a matter of concern that several people reported they had only discovered their diagnosis by accident, for example, on the back of a Disability Living Allowance form, on a hospital discharge certificate and, in one case unfortunately, on receiving a letter from their consultant asking if they would like to take part in this research… Apart from the shock of finding out such sensitive information in this way, the lack of any accompanying explanation left these individuals feeling anxious and upset. (pp.363-4) 7…”

“…(p.53) 5 I can't emphasise this enough… I would have accepted it more if they explained what schizophrenia was… (p.731) 3 Individuals indicated that diagnostic conversations that were devoid of hope were extremely immobilizing and potentially dangerous…hope-focused discussions centered on recognition that individuals could live meaningful lives and be productive members of society. (p.462) 76 Where diagnosis was disclosed, sometimes the lack of information that accompanied that disclosure was one of the main causes of disempowerment. Lack of information meant participants often experienced diagnosis as 'a prognosis of doom' about their future.…”

“…… overall, I think it is better to know and they talk to you about it [diagnosis], although it might take time to adjust to the thought of things, it's the "old nothing about me without me" idea. (p.463) 76 Clinicians spoke of the importance of being as approachable as possible, attending to the patient's needs during the interview being a priority, and rapport being the basis of therapeutic interaction… (p.176) 80 Most participants said they preferred a multidisciplinary approach... (p.176) 80 Danielle described how any questions about the diagnosis were met with ''No, this is definitely what you have. We are 100% sure".…”

“…They don't do that enough, they just treat the patient. (p.463) 76 … the majority of family members reported that learning more about the illness and understanding its effects helped them to accept the diagnosis. (p.138) 48 A proportion of participants described family involvement as crucial as they supported the persons to navigate the system.…”

Living with personality disorder and seeking mental health treatment: patients and family members reflect on their experiences

“…Experiences of mental health services have been studied from the perspectives of consumers with various mental illnesses and their carers. Consumers describe the importance of mental health professionals discussing diagnoses with consumers and carers, and providing hope and information regarding diagnosis [15]. Regarding treatment planning, consumers want to be involved in their treatment decisions [16], although they are often excluded from participating in decision making [17].…”