ReviewExperiencing mental health diagnosis: a systematic review of service user, clinician, and carer perspectives across clinical settings
Introduction
Receiving a formal diagnosis can have considerable impact.1 It can help service users to understand their experiences; provide a sense of relief, control, and containment; offer hope for recovery; improve relationships with services; and reduce uncertainty.2, 3, 4 Nonetheless, diagnosis can have unintended consequences, increasing individual and societal burden. These consequences include feelings of hopelessness, disempowerment, and frustration; stigma and discrimination; exacerbated symptoms; and disengagement from services.5, 6, 7
Qualitative research designs most appropriately capture people's views and experiences.8 Evidence suggests that the impact of diagnosis depends on various factors, including service delivery. For example, diagnosis was experienced negatively when individuals felt that they received insufficient information from clinicians.4 Conversely, when people felt knowledgable about their diagnosis, it could foster a sense of control, meaning, and hope.6 The experience is also affected by the method of communication (eg, a letter vs face to face), time taken to decide and disclose a diagnosis, and whether diagnosis is framed as enduring or malleable.3, 4, 5, 9, 10, 11
Previous studies that considered service-user experience of mental health diagnosis have focused on a single diagnosis, setting, or stage of the process (eg, disclosure), which limits generalisability. Studies typically explore isolated viewpoints of service users, clinicians, carers, or family. Understanding the process of diagnosis from the perspective of a single stakeholder has restricted usefulness for guiding service provision, which must be implemented at individual, service, and organisational levels. We identified one previous review, but it was limited to whether service users received the information they desired.12 To our knowledge, no published reviews have yet synthesised data on the entire diagnostic process or included the views of carers and family.
This Review aims to incorporate the views of all key stakeholders, throughout the diagnostic process, across mental health conditions. This broad scope offers opportunity to gain a comprehensive and widely applicable understanding of the factors that influence service-user experience, through which we seek to reveal nuanced consideration of the experiential similarities and differences across contexts, such as diagnosis and service setting. This understanding will support the diagnostic process to improve service-user experience and outcomes. Our Review is timely, considering the upcoming release of the 11th revision of the International Classification of Diseases (ICD-11), which includes a chapter on mental and behavioural disorders.13 Clinicians have reported uncertainty regarding best practice for the diagnostic process, resulting in discomfort and hesitance in implementing diagnostic manuals.14, 15, 16, 17, 18 We aim to offer practical guidance for clinicians. This Review also seeks to inform service users, as well as carers and family, how to navigate the diagnostic process and support participation of all involved.19
Section snippets
Search strategy and selection criteria
We searched PsychINFO, Embase, MEDLINE, and CINAHL from inception to July 20, 2017 (initial search was done in October, 2016, and updated in July, 2017). Our search strategy was as follows: (“experienc* ADJ5 diagno*” or “perspective* ADJ5 diagno*” or “view* ADJ5 diagno*” or “perce* ADJ5 diagno*” or “communicat* ADJ5 diagno*” or “receiv* ADJ5 diagno*” or “deliver* ADJ5 diagno*” or “giv* ADJ5 diagno*” or “process* ADJ5 diagno*” or “news ADJ5 diagno*” or “inform* ADJ5 diagno*” or “disclos* ADJ5
Information extraction
Two reviewers (AP and JR) extracted data. A pre-piloted table was used to extract demographic and methodological information (table). We assessed study quality using the Critical Appraisal Skills Programme qualitative assessment checklist,85 supplemented with narrative appraisal within which we considered alternative reporting checklists (eg, consolidated criteria for reporting qualitative research [COREQ]).86 Three reviewers (AP, JR, and DB) assigned quantified quality scores (table). NVivo
Thematic synthesis
Thematic synthesis involved the development of descriptive and analytical themes, going beyond initial coding by accounting for transferability to different contexts, relevancy to the research objectives, and frequency of data. Themes were combined into a model representing groups of factors that influence service-user experience of diagnosis. To examine variance across context, we compared themes of papers focused on different stakeholders, diagnoses, service settings, countries, time periods,
Studies and participants included in the systematic review
Our searches of databases and other sources yielded 18 104 results, of which we screened 533 full-text articles for eligibility (figure 1). We included 67 studies (reported in 78 papers) in thematic synthesis (table). Total sample size was 2228 (mean 33 [SD 44]; median 19 [IQR 10–45]). Studies were done in two middle-income and 11 high-income countries: the UK (21), the USA (17), Australia (13), Canada (five), the Netherlands (two), Brazil (two), Sweden (one), New Zealand (one), Latvia (one),
Drivers of diagnosis
Whether decisions were driven by service-user need was a major theme contributing to a diagnosis being experienced as accurate and validating. Some service users felt that diagnoses were instead driven by political motives such as power and control; business, financial, and resource affairs (eg, treatment costs); or clinician fears of causing harm (eg, damaging therapeutic relationships). Clinicians reported feeling pressured by these issues during diagnostic decision making.
Comprehensiveness and quality of the diagnostic assessment
Service users found
Disclosure
This theme encompassed the most codes (figure 2). Disclosure was frequently described as a pivotal moment for service users. Clinicians described an internal struggle or dilemma, whereby they were unsure whether disclosure was beneficial. Most clinicians felt that service users had a right to know their diagnosis, while simultaneously fearing potential harm. Although sometimes experienced negatively, service users generally reported preference for disclosure, giving relief, validating their
Functional value of diagnosis
Service users experienced diagnosis more positively when it was offered as a tool for recovery, leading to appropriate treatment. It was considered most helpful when used to guide care in consideration with service-user preference and other factors (eg, previous treatment experiences); relying solely on diagnosis was considered to be negligent. Similarly, service users believed that diagnosis should not be a prerequisite to accessing services. Others felt that their diagnosis was meaningless
Collaborative and therapeutic relationships
Across all stages of the diagnostic process, service users felt respected when clinicians were empathetic, caring, and attuned to individual needs. Collaboration was preferred, although such practice was infrequently reported. Many service users described their diagnosing clinician as an authoritarian expert, causing them to feel uninvolved and unheard, and potentially to reject the diagnosis. Service users found diagnostic decision making more positive and credible when their expertise and
Stigma, discrimination, and culture
This theme accumulated the largest number of codes among non-service-related factors. Service users found the diagnostic process damaging when it resulted in stigma. Many reported negative social side-effects of diagnosis, including hostility, exclusion, and marginalisation by others. Some felt that they were no longer seen as a person, but as a diagnosis to be feared or avoided. Fear of stigma alone could create anxiety about being diagnosed and cause isolation. When a service user's culture
Service users' previous experiences and help seeking
Many service users had preconceptions of diagnoses, developed from previous experiences. If these were negative (eg, associated with poor outcome through negative familial experiences of mental health conditions), the diagnostic process could be particularly anxiety provoking. Many also developed theories about the cause of their symptoms. If these did not correspond with explanations offered by services (eg, believing symptoms were physical rather than psychological), the experience was
Subgroup analysis
We considered similarities and differences between stakeholders in the overall analysis. An overarching finding was that, despite uncertainty, clinicians aimed to provide the best care, yet the care provided was sometimes found to be unhelpful or harmful by service users. There are few papers on carer or family views for comparison, although a common theme among this group was feeling excluded from the process.
Analyses revealed substantial similarity between diagnoses, albeit with some
Discussion
Understanding the factors influencing service-user experience of diagnosis was limited by research focused on specific diagnoses, settings, or stages of the diagnostic process. Our synthesis identifies that how diagnoses are decided, communicated, and used by services is important. Disclosure, information provision, collaboration, timing, and functional value for recovery were among the most prominent themes. External and internal factors were found to further influence service-user experience
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