How service users and carers understand, perceive, rephrase, and communicate about “depressive episode” and “schizophrenia” diagnoses: an international participatory research

Abstract

Background For ICD-11, the WHO emphasized the clinical utility of communication and the need to involve service users and carers in the revision process. Aims The objective was to assess whether medical vocabulary was accessible, which kinds of feelings it activated, whether and how users and carers would like to rephrase terms, and whether they used diagnosis to talk about mental health experiences. Method An innovative protocol focused on two diagnoses (depressive episode and schizophrenia) was implemented in 15 different countries. The same issues were discussed with users and carers: understanding, feelings, rephrasing, and communication.

The Understandability of Diagnostic Criteria Towards the Latest Version of ICD: A National Participatory Research For a More Democratic Approach In The Conceptualization of the Term “Schizophrenia” Among Service Users In Greece

“…One participant noted that the term is "very negative" and that this negativity is "… due to (the word) delusion and due to the emotional potency these words bear, the guilt, and the interconnection of all these…" Nevertheless, only 60% of Greek participants reported that the term 'persistent delusions' matched a present or past experience (less than international rates) and only 40% stated that they would propose a rephrasing of the term (signi cantly less than the international average). Equally, for the term 'persistent hallucinations', Greek participants reported higher rates of understanding than the international average (86,6% vs. 75,6%), with the term being associated with something negative for 80% of the sample (again signi cantly higher than the international average) (Roelandt et al, 2020). Seventy three percent of Greek service users, one of the highest internationally, stated that they would suggest a rephrasing for the term 'persistent hallucinations' since 60% of the national sample reported that the term matched a current or past experience.…”

“…Sixty-six percent (66,7%) of Greek participants reported that they would rephrase the term 'schizophrenia, which is the highest rate along with that of Hungary. The average international rate for rephrasing was 42,7%, with the lowest being reported in India (6,8%) and Mauritania (13,3%) (Roelandt et al, 2020). The high rates represented by the Greek sample may re ect the emotional impact that psychiatric language has, with the term 'schizophrenia', meaning split-mind in Greek, inducing the intended distress in its primary form, compared to other languages whereby the understanding of the term follows a top-down rather than a bottom-up process.…”

“…Clinical utility aside, effective communication requires that words are accessible and understandable particularly by service users and their carers and especially when it comes to psychiatric diagnosis and classi cation (Mavreas & Stylianidis, 2021). As changes in naming also re ect changes in medical and psychiatric practice, psychiatric language may also contribute towards a move from an asymmetrical, paternalistic relationship to a more equal one that evades labeling and marginalization, thus promoting the empowerment and recovery of mental health service users (Askevis-Leherpeux et al, 2021; Roelandt et al, 2020), with great reported effect (Oaks, 2012;Sartorius et al, 2014;Pomey et al, 2015). The 11th version of the ICD (WHO, 1992) was developed and came into effect in January 2022, whilst future updates are planned to take place every ten years.…”

“…The stigma associated with the term also seems to affect effective communication amongst mental health professionals, service users and carers with the former often being reluctant to use the term schizophrenia in referring to their diagnosis. This may account for the seemingly low reported incidence of schizophrenia but may also be affecting service user and carer comprehension and subjective distress in seeking prompt and appropriate treatment (Askevis-Leherpeux et al, 2021; Roelandt et al, 2018;Roelandt et al, 2020). This seems to be highlighted in the case of Greece, where the generalized use of 'psychotic spectrum disorder' is commonly noted amongst psychiatrists and other mental health professionals.…”

Online and Recovery-Oriented Support Groups Facilitated by Peer Support Workers in Times of COVID-19: Protocol for a Feasibility Pre-Post Study

“…We also question (Q3) how these potentials can be impacted by the COVID-19 pandemic and (Q4) how the lived experience of people in recovery can be mobilized to cope with the situation. Finally, we also explore (Q5) how sex and gender considerations can be taken into account for the pairing of PSWs with service users beyond considerations based solely on psychiatric diagnoses or specific MHPIs [35]. We aim to collect data for a future randomized controlled trial (RCT) [36] by clarifying a certain number of remaining uncertainties and by detecting an effect that would be specifically attributable to transitional peer support as facilitated by trained PSWs.…”