Subscribe X
Back to Top


July 9, 2019 by Corinna Hackmann, PhD et al | The Lancet Psychiatry

Perspectives on ICD-11 to understand and improve mental health diagnosis using expertise by experience (INCLUDE Study): an international qualitative study


Developed in collaboration with WHO Department of Mental Health and Substance Abuse, this study (conducted in India, the UK, and the USA) integrated feedback from mental health service users into the development of the chapter on mental, behavioural, and neurodevelopmental disorders for ICD-11. The ICD-11 will be used for health reporting from January, 2022. As a reporting standard and diagnostic classification system, ICD-11 will be highly influential by informing policy, clinical practice, and research that affect mental health service users. We report here the first study to systematically seek and collate service user perspectives on a major classification and diagnostic guideline. Focus groups were used to collect feedback on five diagnoses: depressive episode, generalised anxiety disorder, schizophrenia, bipolar type 1 disorder, and personality disorder. Participants were given the official draft diagnostic guidelines and a parallel lay translation. Data were then thematically analysed, forming the basis of co-produced recommendations for WHO, which included features that could be added or revised to better reflect lived experience and changes to language that was confusing or objectionable to service users. The findings indicated that an accessible lay language version of the ICD-11 could be beneficial for service users and their supporters.


The ICD-11 will be used for health reporting by WHO’s 194 member states beginning in January, 2022. The chapter on mental and behavioural disorders in the ICD-10 is the most widely used classification system for mental disorders globally.

The WHO Department of Mental Health and Substance Abuse (MSD) has developed detailed diagnostic guidelines for mental, behavioural, and neurodevelopmental disorders in the ICD-11 to be used by health professionals in clinical settings. Priorities for MSD have included enhancing the clinical utility and global applicability of the ICD-11 diagnostic guidelines.

Achieving this aim will have a large influence on the mental health policy and service provision that affect the lives of people who experience mental health difficulties. Our study represents the first systematic and programmatic research study of mental health service users during the revision process of a major diagnostic guideline (ICD or the Diagnostic and Statistical Manual of Mental Disorders, and the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association).

The Lancet Commissionon Global Mental Health and sustainable development identified the crucial importance of service users as experts by experience in the global development and provision of mental health innovation and services: reaffirming the mental health recovery and disability rights philosophy of “nothing about us without us”. The value of expertise by experience in innovation, service provision, and research is increasingly recognised by policy makers, service providers, and researchers.

Classification and diagnostic guidelines are designed to offer guidance to clinicians and researchers, and the language and terminology are often technical. Despite this potential barrier, the diagnostic features of a disorder are easily accessed via the internet. Receiving a diagnosis can be beneficial to service users but it has also been reported to have negative consequences, such as feeling labelled, reduced, and stigmatised.

It is therefore essential to gain an understanding of the way that service users respond to the content of the major diagnostic systems as this could enhance clinical utility and help to avoid potential unintended negative consequences.


We aimed to gain the perspective of service users across international contexts. With agreement from WHO, five diagnoses were selected: schizophrenia, bipolar disorder type 1, depressive episode, personality disorder, and generalised anxiety disorder. These diagnoses were selected because they include a wide range of symptom phenomena, have a high disease burden,and are experienced as stigmatising.

This study was done in a tertiary level hospital in India, a Mental Health NHS Foundation Trust in the UK and a peer led Collaborative Support Program in the USA. The UK and India sites sought feedback on the five diagnoses as they are listed in the ICD-11. The US site implemented the protocol for depressive episode, schizophrenia, and bipolar disorder type 1. We aimed to systematically collate feedback on the draft content of the ICD-11, whether the features fit with lived experience, and the language used.

We also sought feedback from clinicians in India and the UK who routinely use the ICD-10: including psychiatrists, primary care doctors, and clinical psychologists. We were primarily concerned with the perspectives of service users and we used the clinician data to verify and interpret these findings.

Participants were provided with two parallel versions of the relevant diagnostic guidelines to feedback on: a version taken from WHO’s draft clinical descriptions and diagnostic guideline (CDDG) for ICD-11 mental disorders,

and a summary of this guideline in an accessible lay language (produced for this project by medical professionals and reviewed by the research team, including service users). We also aimed to explore the service user responses to the lay version of the guidelines.


Study design
All aspects of this study (including the protocol, delivery, and analysis) were coproduced by researchers, service users, and clinicians. The INCLUDE study protocol has previously been published.

All sites received approval from appropriate review bodies. In the UK, this review body was Coventry and Warwickshire HRA Research Ethics Committee (ref 16/WM/0479); for India, approval was obtained from the Institute Ethics Committee of All India Institute of Medical Sciences (AIIMS) New Delhi (Ref No. IEC-442/04.08.2017); for the USA, approval was obtained from the New York State Psychiatric Institute Institutional Review Board (Ref Project #7573).

Data were collected through focus group discussions, which were considered the most appropriate method to capture opinions via a reflective process facilitated by social interaction.

In India, the draft guidelines and lay summary were provided in both English and Hindi.

We aimed to use purposive sampling to ensure a wide range of viewpoints were captured. Recruitment was, however, essentially pragmatic, with diverse recruitment pathways to ensure maximum inclusivity and heterogeneity for each diagnosis. In India and the UK, clinical staff in a mental health service setting approached service users who met inclusion criteria. Adult service users (≥18 years old) were included if they had formally received at least one of the five diagnoses, were accessing mental health services within the past 5 years, were able to take part in a focus group discussions in English (or in Hindi in India), and had the capacity to consent. Service users with multiple diagnoses were limited to one focus group discussion. To allow self-referral, the UK study was also promoted via posters in clinical spaces (eg, waiting rooms) and newsletters to the Mental Health Trust membership. Recruitment in the USA was done via staff with lived experience working in a peer led service, and the study was promoted by flyers circulated to the peer service members. All service users recruited via clinicians or peer-staff were aware of their diagnosis before recruitment. Clinicians who had expedience of using the diagnoses under investigation were recruited via emails to potentially interested parties. For all countries, interested people (service users and clinicians) approached the research team to discuss participation and were screened against inclusion criteria, including self-confirming that they had formally received at least one diagnosis under investigation. In order to facilitate engagement and reduce burden on participants, we did not collect standardised self-reported demographic data. To ensure that the samples were broadly mixed, we gathered visual estimated data for gender and age range (in India these data were gathered from medical records that were accessed with consent). Permission to share these data was not sought from participants and therefore we do not report them. Informed consent to participate in an audio recorded and transcribed focus group discussion was taken for all participants. Participants from the UK and the USA received a £10 voucher and $20, respectively, to thank them for their participation. Participants in India did not receive reimbursement because it is standard practice not to reimburse participants in India.


The number of focus groups was based on findings for the use of standardised topic guides or interviews for qualitative research.

A focus group size of 2 to 10 people was chosen to allow participants the opportunity to discuss detailed views and experiences, while maximising recruitment feasibility.

The sample size and number of focus group discussions was deemed sufficient to provide data to meet the research aims.

Table 1 shows the number of participants and focus groups for each country. In order to verify the outputs of the analyses and co-produce recommendations for revisions to the ICD-11, feedback groups were run with seven additional service users and four clinicians in the UK.

Table 1 Number of focus groups and participants per focus group discussion by country
Number of focus groups Total number of participants
Schizophrenia 2 7
Bipolar disorder 2 8
Depressive episode 2 8
Generalised anxiety disorder 2 4
Personality disorder 2 6
Physicians 2 11
Clinical psychologists 1 6
Schizophrenia 2 8
Bipolar disorder 2 7
Depressive episode 2 9
Generalised anxiety disorder 1 9
Personality disorder 2 4
Psychiatrists 1 6
Clinical psychologists 1 7
Schizophrenia 4 18
Bipolar disorder 4 20
Depressive episode 3 19
Total 35 157

Data collection

Handouts, including the draft ICD-11 guidelines and a lay summary, were used to inform all participants (service users and clinicians) of the proposed ICD-11 features. The ICD-11 guidelines were divided into set discussion points for the focus group discussions in all countries (developed by the UK team including clinicians and service users). These discussion points included feedback on the language and features proposed in the new guidelines. The same materials, including set discussion points, were used for all sites and participants (with questions and handouts also available in Hindi for focus group discussions done in India). Each focus group discussion lasted between 60 and 120 min. Focus group discussions were all facilitated by an experienced lead facilitator. All lead facilitators were members of the research team, who were clinicians, peer providers, or researchers.

Data analysis

A critical realist epistemological stance was used for the analysis; recognising that participants have their own individual experience of reality, but analysing data at face value, using the perspectives of individuals as they represent themselves during the focus group discussions.

This approach was selected to capture the nuance of individual experience and develop useful feedback for WHO.

All focus group discussions were audio-recorded and transcribed verbatim. Thematic analysis was used to identify patterns within the data relating to perceptions of the draft content of the guidelines.

This analysis was supported by qualitative data management software (NVivo-11 and Dedoose). We inductively coded patterns or themes that reoccurred (a cutoff of a minimum of three codes was applied) or appeared to be salient.

The transcripts were initially read and coded directly and descriptively using participant’s wording or terms where possible (using the same language as participants when possible); for all three countries, a minimum of 25% of the transcripts were independently coded by a second researcher. These codes were compared and discussed until a consensus was reached. As the codes were descriptive of the data, a consensus was reached with minimal disagreement and without involving a third analyst. This process was used to develop coding frames of key themes for each diagnosis for service users and clinicians for all countries before making comparisons among countries: ensuring that the findings from each context were not influenced by other contexts. When the coding frames were complete, 329 (52%) of 634 participants’ codes were checked for validity by independently analysing the codes against the themes. A high degree of inter-rater agreement was found for all three sites (0·84 for India, 0·79 for the UK, and 0·82 for USA). To verify and interpret the service user findings, we compared the coding frames developed from the service user and clinician data. We found that there was a good level of superordinate theme co-occurrence (with the exception of themes relating to the lay summaries and the addition of themes relating to the utility of the ICD-11 system in the coding frames developed from the clinician data). The analysis output was overarching superordinate themes (reflecting broad conceptual categories), containing more nuanced subsidiary themes.


Table 2 shows the key superordinate and subsidiary themes found for service users for all three countries. These themes were developed from the analysis outlined in the Methods section.

Table 2 Superordinate and subsidiary themes for all three countries by number of times theme was coded



Additional features
Difficulty communicating 18 11 1
Interpersonal difficulties 15 7 5
Fear or distress 17 0 2
Psychotic features feel “real” 10 0 7
Irritability or sensitivity 0 7 0
Psychotic features: pattern, significance 5 0 0
Memory difficulties 1 0 7
Disliked language
“Disorganised” 0 5 0
“Bizarre” 0 3 0
Non-resonant features
Disorganised thinking or behaviour 9 0 2
Lay summary
Positive feedback 11 6 8
Bipolar disorder type 1
Additional features
Anxiety or distress 8 1 4
Anger 6 5 0
Frequent mood fluctuations 0 8 0
Interpersonal sensitivity 0 6 0
Psychotic features: pattern, significance 5 0 0
Creativity 3 0 0
Non-resonant features
Sleep difficulties include insomnia 0 0 4
Cultural description
Native language and idioms are better 0 5 0
Lay summary
Positive feedback 3 6 30
Depressive episode
Missing features
Anxiety or tension 6 6 2
Pain 0 6 5
Disliked or confusing language
“Psychomotor retardation” 1 0 11
“Neuro-vegetative” 3 0 0
Lay summary
Positive feedback 18 4 8
Personality disorder
Additional features
Distress 11 0 n/a
Vulnerability to others 5 0 n/a
Non-resonant features
Harm to others 6 6 n/a
Maladaptive cognition and behaviour 3 0 n/a
Disliked language
“Maladaptive” 4 0 n/a
Lay summary
Positive feedback 7 7 n/a
Generalised anxiety disorder
Additional features
Anger 12 0 n/a
Pain 0 5 n/a
Cultural description
Native language and idioms are better 0 6 n/a
Lay summary
Positive feedback 10 6 n/a
* Themes discussed in this manuscript were coded a minimum of 3 times.

 Additional features

The most frequently occurring themes of the focus group discussions were features that participants, on the basis of their lived experience, felt had been omitted from the draft ICD-11. Most of these additional features reflected internal experience or “felt” experience (as described by the UK feedback group), comprising emotional, psychological, and somatic experiences.
The diagnosis with the largest number of additional features was schizophrenia. These additional features included irritability, fear, and memory difficulties.
“I always misplace things or lose things, because I have a very bad short-term memory”(Participant from a schizophrenia focus group discussion)
Additionally, the schizophrenia focus group discussions identified that their experience of interpersonal difficulties (feelings of distance, isolation, or alienation from other people) and difficulties communicating internal experiences were not reflected in the proposed ICD-11.
“I like to do things my way. My father and my brother criticise some of my actions…They may not understand the reason, but there is a reason for it that I can’t explain to anyone”(Participant from a schizophrenia focus group discussion)
Additional features for bipolar disorder type 1 included anxiety and anger, nausea, and sickness. Participants reported that they felt that the proposed features reflected negative aspects of bipolar disorder type 1 and identified increased amounts of creativity as a positive aspect.
“I do feel it should have something about creativity in it because I think that [it is] an important aspect of mania”(Participant from a bipolar disorder type 1 focus group discussion)
Fewer missing features were identified for generalised anxiety disorder and depressive episode. Anxiety and pain were identified for both depressive episode and generalised anxiety disorder.
The personality disorder focus group discussion reported that the proposed features did not reflect their internal felt-experience, including distress and difficulty. The features do include vulnerability in relationships, but the participants additionally identified that they did not explicitly include that people with personality disorder might be vulnerable to exploitation by others.
“A lot of this stuff is one-sided; it problematises the sufferer, it doesn’t talk about their vulnerabilities, nothing about them being open to exploitation or predation, nothing like that. Nothing about how potentially their fears, and suspiciousness, and avoidance might be caused by previous abuse.”(Participant from a personality disorder focus group discussion)
There were parallels between the clinician and service user data in terms of additional features; however, far fewer additional features were identified by clinicians. They noted the omission of anxiety from the features of depressive episode and vulnerability to exploitation by others from personality disorder. In the ICD-11 there are qualifiers for the features of depression that include anxiety symptoms. These qualifiers were considered out of scope for the material presented to participants.
Participants in the focus group discussions for schizophrenia, personality disorder, and bipolar disorder type 1 identified that features tended to reflect an external perspective rather than the internal or felt-experience of features. This observation aligns with the finding that the majority of additional features reflected internal experience.
“It’s the internal experience that’s getting missed again, this is all rated on what’s being seen outside”(Participant from a personality disorder focus group discussion)

 Features that do not resonate with lived experience

Another superordinate theme relates to features that were identified as not resonating with lived experience. This theme was identified for schizophrenia, bipolar disorder type 1, and personality disorder.
Many participants in the schizophrenia focus group discussions in India and the UK objected to the word “disorganised” (relating to both thinking and behaviour). Participants reported the felt-experience of psychotic symptoms (including thought disorder and delusions) might appear disorganised but is often linked to a felt-experience of patterns or connections between things or experiences that could feel particularly important (this opinion was also found for psychotic phenomena in bipolar disorder type 1). Therefore, thinking or behaviour that appears disorganised could actually be goal-directed in ways that are hard for people to explain (this observation also relates to the findings of communication difficulties).
“What appears meaningless or disorganised to you may not be so for me… it can have a very clear meaning for me… I may not be able to explain every action”(Participant from a schizophrenia focus group discussion)
In the personality disorder focus group discussions, participants reported that the word “maladaptive” (as in, “maladaptive patterns of cognition, emotional experience, emotional expression, and behaviour”) did not fit with their experience.
“I absolutely hate the word maladaptive… It’s somebody else’s judgement if it’s a bad adaption or not, but it’s an adaptation that somebody has had to make to survive their circumstances, so therefore it’s actually a very valid adaption for that person in the situation.”(Participant from a personality disorder focus group discussion)
Clinicans from focus group discussions in the UK also reported that the concept of maladaptive is culturally defined.
The proposed ICD-11 features for bipolar disorder type 1 include “decreased need for sleep”, as distinct from insomnia. Participants in the USA reported that their lived experience was that they could not sleep but did not necessarily need less sleep.
“I didn’t sleep because I was thinking about other things, but I didn’t necessarily feel less need for sleep”(Participant from a bipolar disorder type 1 focus group discussion)


There was a superordinate theme of language that service users disliked. This observation was found for schizophrenia, depressive episode, and personality disorder. For the descriptions of schizophrenia, participants disliked the words “bizarre” (as in, “behaviour that appears bizarre or purposeless”) and “disorganised” (as previously discussed) because these were perceived to be negative descriptions of the phenomena.
“Terms such as disorganised or bizarre are negative terms. These terms should not be there.”(Participant from a schizophrenia focus group discussion)
There were also technical terms that participants misunderstood or interpreted in a negative way. These negative terms included “retardation” and “neuro-vegetative” in depressive episode. The clinicians also felt that the term neuro-vegetative could be confusing to service users and felt that the use of the term “maladaptive” for personality disorder could be objectionable to service users.
“When you say ‘retardation’ it gives the idea that we can’t actually halfway defend ourselves or we’re helpless or we need to actually–someone needs to be watching us every 5 seconds”(Participant from a depressive episode focus group discussion)

 Specific themes for personality disorder

Harm to others is included in the proposed ICD-11 (eg, “Severe Personality Disorder is often associated with harm to self or others”). Service users reported that they were concerned that it might be interpreted that harm to others is always a feature of personality disorder.
“I don’t agree with some of the content written here, especially that the person with personality disorder can kill or harm others. If you describe personality disorder like this, I would hesitate in disclosing my illness to others.”(Participant from a personality disorder focus group discussion)
There was feedback on the move to a dimensional approach. It was reported that the inclusion of a milder diagnosis might risk people exhibiting more severe symptoms in order to obtain a diagnosis that validated their perceived amount of difficulty or to gain access to care or treatment.
“You’re invalidating people who score at a particular point, as mild…you’re not getting rid of the stigma; you’re adding what I used to call a ‘meta-stigma’, which is a stigma of not being ill enough.”(Participant from a personality disorder focus group discussion)

Lay summaries

Positive feedback on the lay summaries was a superordinate theme that was found for all diagnoses, across all three countries. Participants reported that the lay summaries were clearer, more accessible, and easier to understand than the official draft diagnostic guidelines; consequently, they were reported to be more resonant with, and descriptive of, lived-experience.
“It just seems to be much easier to associate with this [lay summary] than all this [official ICD-11 text].”(Participant from a schizophrenia focus group discussion).
Participants also reported that the lay summaries would be a beneficial resource for service users and could support a shared language with friends and family, as well as shared decision-making with clinicians.
“I want to keep a copy of this document to share it with my family.”(Participant from a generalised anxiety disorder focus group discussion)“Is the idea of this now it’s going to be more shared? When the diagnosis is done it’s a shared experience, so you’re looking at this? [lay summary] Because you never actually get shown anything”(Participant from a depressive episode focus group discussion)

Exploration between countries

As shown by table 2, there were differences between the three research contexts but these did not appear to follow a particular pattern. For example, the ICD-11 proposed content for depressive episode states that “In some cultural contexts, mood changes are more readily expressed in the form of bodily symptoms (eg, pain, fatigue, weakness)”. Despite these differences, pain was reported for depressive episode by participants in both Indian and US focus group discussions.
Participants in India reported that for bipolar disorder type 1 and generalised anxiety disorder, the proposed descriptions did not necessarily reflect their experience as well as local words or idioms did.
“It would be easy to understand if you can call it as an illness of udaasi and tezi”(Participant from a bipolar disorder type 1 focus group discussion)
These data from the USA included more references to the effects of substance use: an area that was not discussed in the focus group discussions in the other two countries but was coded for all diagnoses in the USA.
“Drugs and alcohol can…trigger it, activate it.”(Participant from a schizophrenia focus group discussion)
There were similarities between the countries; eg, service users in the schizophrenia focus group discussions from all three countries reported that the ICD-11 features did not reflect their experience of interpersonal difficulties, and anxiety was universally reported as a feature of depression.


This studywas, to our knowledge, the first to systematically seek service user perspectives on a major diagnostic guideline. Participants identified additional features for all diagnoses. These additional features mainly reflected internal experience (eg, pain or distress). Many additional features could be externally observed (eg, interpersonal difficulties) but even for these features, much of the feedback centred on felt-experience. Participants identified instances when features did not resonate with lived experience. Examples of these features included disorganised behaviour in schizophrenia and maladaptive behaviour in personality disorder. The feedback from participants suggested that these features might not reflect the internal experience. Participants also identified that features tended to reflect the external perspective of non-service users. Classification systems operationalise features and prioritise what can be described from an external perspective to enhance reliability and support clinical use.

Our data suggest that this operationalisation might have the unintended consequences for service users of feeling alienated, misunderstood, or invalidated.

There were commonalities between the service user and clinician findings. Clinicians identified some overlapping additional features (eg, vulnerability to others in personality disorder and anxiety in depressive episode) but far fewer than those identified by service users. There were also overlaps in language identified as potentially confusing or objectionable to service users (eg, “neuro-vegetative” and “maladaptive”). The superordinate theme of positive feedback on the lay summaries was not coded from the clinician data. The clinician data did include superordinate themes relating to the utility of the ICD system for all diagnoses. These superordinate themes are not discussed in this Health Policy as this subject has been comprehensively covered elsewhere in the ICD-11 development.

Participants identified that language is important and offered feedback on words or terms that were confusing, misinterpreted, or objectionable. In the draft ICD-11 guidelines, terms such as “retardation” and “neuro-vegetative” were misinterpreted, whereas “bizarre”, “disorganised”, and “maladaptive” were objectionable. Participants from India reported that there are words or idioms in their native language that better resonate with lived experience. This finding aligns with the ICD-11 commitment to provide latitude in the diagnostic system that allows for cultural difference.

Cultural considerations were not included in the materials evaluated in the study.

A second goal of our study was to explore responses to the lay language summaries. Service users across all sites and diagnoses offered positive feedback; these data suggest that such summaries could aid understanding, offer a common language or explanation, and potentially facilitate a so-called “shared” or collaborative diagnostic process. Findings also suggest that explanatory information received during the diagnostic process can aid understanding.


Our study was developed in collaboration with WHO and offers a unique insight into the views of service users on the proposed ICD-11. Coproduced recommendations, based on the themes described above, were included in a report (currently unpublished) written by the research team and submitted to WHO, which has established a process of review and consideration of incorporation into revisions of the clinical descriptions and diagnostic guideline for ICD-11 Mental, Behavioural and Neurodevelopmental Disorders. These recommendations include the finding that service users might benefit from a version of the ICD-11 system that is understandable to them and includes more information about the felt-experience underlying the operationalised features.
Our study was limited by the number of included diagnoses, participants, countries, and languages: thus limiting the generalisability of our findings. However, as a qualitative study, our findings present both useful recommendations and transferable methods for the systematic integration of the perspectives of service users into present and future iterations of the ICD. Future feedback from service users could incorporate a wider range of countries and service contexts, particularly in low-income and middle-income countries. The absence of reportable demographic data is also a limitation of our study.

From the perspective of service users, diagnosis can validate and help make sense of distressing and complex mental health experiences.

However, our findings suggest that one unintended consequence of major classification systems is that the operationalised features do not always reflect internal or felt experience. Diagnosis can also offer a shared language for service users, families, and clinicians but we found that the technical and medical language in major systems can be confusing or alienating for people who are not professionally trained, which could reinforce a power imbalance between service users and clinicians.

Diagnoses could also support a shared understanding between service users, families, and clinicians. This consequence is best achieved when there is an understanding between the service user and clinician of both the clinician’s reasoning and service user’s experience.

One future direction is to co-produce (with service users, carers, and clinicians) the shared summaries of the diagnostic features and related phenomena for collaborative use by clinicians and service users. This communication could offer a shared language that captures additional aspects of lived experience, avoids medical terminology, provides lay understanding of the operational features, and enriches these features with the underlying felt-experience. We hope that these summaries could encourage a reciprocal and collaborative diagnostic process and sharing of power between clinicians and service users. There is also evidence that collaboration facilitates rapport and engagement and could support recovery.

Coproduced shared summaries could also allow greater elaboration of contextually situated lived and felt-experience and the local language and idioms used to describe mental health phenomena. These shared summaries could also be used for public engagement, health education, and clinical training.

Our study represents an overdue milestone and watershed moment in mental health research. It is the first time that service users have participated in systematic research to provide review and recommendations on proposed diagnostic guidelines for a major system. Given this novelty, it is worth remarking that the proposed guidelines were in many cases perceived as useful and relevant to lived experience. It is also profoundly important to acknowledge and document the recommendations that our study generated. Crucially, our study validates the essential engagement of service users and the essential role of co-production. As shown in this Health Policy, such practices have the potential to enhance the descriptive accuracy and maximise the acceptability of the guidelines from the service user perspective: a key constituent group for whom the system is crucially relevant.
CH, CN, GMR, JW, TS contributed to the study conceptualisation and original protocol. YPSB, KC, PBN, KMP, PS, MSR, JS, and MS developed protocols in their respective countries (with support from CH). CH, YPSB, KC, PBN, CN, KP, PS, JS, MS, MSR, JW, and TS delivered recruitment and data collection in respective countries. CH, YPSB, KC, PBN, CN, KP, PS, JS, MS, MSR, and HZ analysed and combined the data. All authors contributed to writing or revising the paper.
Declaration of interests
We declare no competing interests.
All authors had responsibility for the decision to submit for publication. We would like to acknowledge the contribution of Amanda Green to the original conception and protocol design, and Amorette Perkins and Joseph Ridler for contribution to the protocol and delivering UK focus group discussions. We would also like to thank library staff at Norfolk and Suffolk Foundation NHS Trust and Dr Bonnie Teague for her advice and support.


  1. Reed GM, First MB, Kogan CS et al. Innovations and changes in the ICD-11 classification of mental, behavioural and neurodevelopmental disorders. World Psychiatry. 2019; 183-19
  2. Patel V, Saxena S, Lund C, et al. The Lancet Commission on global mental health and sustainable development. Lancet. 2018; 3921553-1598
  3. UK Department of Health. Closing the gap: priorities for essential change in mental health. Date: 2014. Date accessed: June 15, 2017
  4. Simpson EL, House AO. User and carer involvement in mental health services: from rhetoric to science. BJPsych. 2003; 18389-91
  5. Beresford P. The role of service user research in generating knowledge-based health and social care: from conflict to contribution. Evid Policy. 2007; 3329-341
  6. Hagen B, Nixon G. Spider in a jar: women who have recovered from psychosis and their experience of the mental health care system. Ethical Human Psychol Psychiatry. 2011; 1347-63
  7. Horn N, Johnstone L, Brooke S. Some service user perspectives on the diagnosis of borderline personality disorder. J Ment Health. 2007; 16255-269
  8. Loughland C, Cheng K, Harris G et al. Communication of a schizophrenia diagnosis: a qualitative study of patients’ perspectives. Int J Soc Psychiatry. 2015; 61729-734
  9. Bonnington O, Rose D. Exploring stigmatisation among people diagnosed with either bipolar disorder or borderline personality disorder: a critical realist analysis. Soc Sci Med. 2014; 1237-17
  10. WHO. The global burden of disease: 2004 update. Date: 2008. Date accessed: December 5, 2018
  11. Dinos S, Stevens S, Serfaty M, et al. Stigma: the feelings and experiences of 46 people with mental illness: qualitative study. Br J Psychiatry. 2004; 184176-181
  12. Crowe M, Inder M, Carlyle D et al. Feeling out of control: a qualitative analysis of the impact of bipolar disorder. J Psychiatr Ment Health Nurs. 2012; 19294-302
  13. First MB, Reed GM, Saxena S, Hyman SE. The development of the ICD-11 clinical descriptions and diagnostic guidelines for mental and behavioral disorders. World Psychiatry. 2015; 1482-90
  14. Hackmann C, Green A, Notley C et al. Protocol for a qualitative study exploring perspectives on the INternational CLassification of Diseases (11th revision); using lived experience to improve mental health Diagnosis in NHS England: INCLUDE study. BMJ Open. 2017; 7e018399
  15. Smithson J. Using and analysing focus groups: limitations and possibilities. Int J Soc Res Methodol. 2000; 3103-119
  16. Gibbs A. Focus Groups. Date: 1997. Date accessed: June 21, 2017
  17. Wilkinson S. Focus group methodology: a review. Int J Soc Res Methodol. 1998; 1181-203
  18. Morgan DL. Planning and research design for focus groups. in: Morgan DL Focus groups as qualitative research. SAGE PublicationsThousand Oaks, CA, USA199732-46
  19. Toner J. Small is not too small: reflections concerning the validity of very small focus groups (VSFGs). Qual Soc Work. 2009; 8179-192
  20. Guest G, Namey E, McKenna K. How many focus groups are enough? Building an evidence base for nonprobability sample sizes. Field Methods. 2016; 293-22
  21. Guba EG, Lincoln YS. Competing paradigms in qualitative research in Denzin. in: Denzin NK Lincoln YS The landscape of qualitative research: theories and issues. SAGE PublicationsThousand Oaks, CA, USA1994105-117
  22. Denzin NK, Lincoln YS. The sage handbook of qualitative research. SAGE Publications, Thousand Oaks, CA, USA2005
  23. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res in Psychol. 2006; 377-101
  24. Perkins A, Ridler J, Browes D et al. Experiencing mental health diagnosis: a systematic review of patient, clinician, and carer perspectives across clinical settings. Lancet Psychiatry. 2018; 5747-764
  25. Loughland C, Cheng K, Harris G et al. Communication of a schizophrenia diagnosis: a qualitative study of patients’ perspectives. Int J Soc Psychiatr. 2015; 61729-734
  26. Pitt L, Kilbride M, Welford M et al. Impact of a diagnosis of psychosis: user-led qualitative study. Psychiatr Bull. 2009; 33419-423
  27. Hayne YM. Experiencing psychiatric diagnosis: client perspectives on being named mentally ill. J Psychiatr Ment Health Nurs. 2003; 10722-729




Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Related Blogs

  • Dr. David Healy

    Dr. David Healy

    Dr. Healy is a professor of psychiatry at Cardiff University in Wales and an author on the history of pharmaceuticals and government regulation.
  • Mad In America: Robert Whitaker

    Mad In America: Robert Whitaker

    Journalist and author Bob Whitaker distills the latest in pharmaceutical and mental health research.
  • Selling Sickness

    Selling Sickness

    Creating a new partnership movement to challenge the selling of sickness.
  • Kathy Brous

    Kathy Brous

    A serial of Kathy's recovery journey as an adult with attachment disorder.
  • Nev Jones

    Nev Jones

    Exploring the intersections of psychiatry, philosophy, neuroscience, cultural theory, critical community psychology and the mad/user/survivor movement.
  • 1boringoldman


    Retired psychiatrist and raconteur offers insightful analysis of the day's events from the woods of Georgia.