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The Discrimination and Stigma Scale (DISC) is a patient-reported outcome measure which assesses experiences of discrimination among persons with a mental illness globally.
This study evaluated whether the psychometric properties of a short-form version, DISC-Ultra Short (DISCUS) (11-item), could be replicated in a sample of people with a wide range of mental disorders from 21 sites in 15 countries/territories, across six global regions. The frequency of experienced discrimination was reported. Scaling assumptions (confirmatory factor analysis, inter-item and item-total correlations), reliability (internal consistency) and validity (convergent validity, known groups method) were investigated in each region, and by diagnosis group.
1195 people participated. The most frequently reported experiences of discrimination were being shunned or avoided at work (48.7%) and discrimination in making or keeping friends (47.2%). Confirmatory factor analysis supported a unidimensional model across all six regions and five diagnosis groups. Convergent validity was confirmed in the total sample and within all regions [ Internalised Stigma of Mental Illness (ISMI-10): 0.28–0.67, stopping self: 0.54–0.72, stigma consciousness: −0.32–0.57], as was internal consistency reliability (α = 0.74–0.84). Known groups validity was established in the global sample with levels of experienced discrimination significantly higher for those experiencing higher depression [Patient Health Questionnaire (PHQ)-2: p < 0.001], lower mental wellbeing [Warwick-Edinburgh Well-being Scale (WEMWBS): p < 0.001], higher suicidal ideation [Beck Hopelessness Scale (BHS)-4: p < 0.001] and higher risk of suicidal behaviour [Suicidal Ideation Attributes Scale (SIDAS): p < 0.001].
The DISCUS is a reliable and valid unidimensional measure of experienced discrimination for use in global settings with similar properties to the longer DISC. It offers a brief assessment of experienced discrimination for use in clinical and research settings.
Stigma related to mental disorders is a barrier to quality mental healthcare. This scoping review aimed to synthesise literature on stigma related to mental disorders in Nepal to understand stigma processes. The anthropological concept of ‘what matters most’ to understand culture and stigma was used to frame the literature on explanatory models, manifestations, consequences, structural facilitators and mitigators, and interventions.
We conducted a scoping review with screening guided by the Preferred Reporting Items for Systematic Review and Meta-analysis Extension for Scoping Reviews (PRISMA-ScR). A structured search was done using three international databases (PsycINFO, Medline and Web of Science), one Nepali database (NepJol) and cross-referencing for publications from 1 January 2000 through 24 June 2020. The search was repeated to include structural stigma-related terms. Quality of quantitative studies was assessed using the Systematic Assessment of Quality in Observational Research (SAQOR) tool. The review was registered through the Open Science Framework (OSF) (osf.io/u8jhn).
The searches yielded 57 studies over a 20-year period: 19 quantitative, 19 qualitative, nine mixed methods, five review articles, two ethnographies and three other types of studies. The review identified nine stigma measures used in Nepal, one stigma intervention, and no studies focused on adolescent and child mental health stigma. The findings suggest that ‘what matters most’ in Nepali culture for service users, caregivers, community members and health workers include prestige, productivity, privacy, acceptance, marriage and resources. Cultural values related to ‘what matters most’ are reflected in structural barriers and facilitators including lack of policies, programme planning and resources. Most studies using quantitative tools to assess stigma did not describe cultural adaptation or validation processes, and 15 out of the 18 quantitative studies were ‘low-quality’ on the SAQOR quality rating. The review revealed clear gaps in implementation and evaluation of stigma interventions in Nepal with only one intervention reported, and most stigma measures not culturally adapted for use.
As stigma processes are complex and interlinked in their influence on ‘what matters most’ and structural barriers and facilitators, more studies are required to understand this complexity and establish effective interventions targeting multiple domains. We suggest that stigma researchers should clarify conceptual models to inform study design and interpretations. There is a need to develop procedures for the systematic cultural adaptation of stigma assessment tools. Research should be conducted to understand the forms and drivers of structural stigma and to expand intervention research to evaluate strategies for stigma reduction.
This chapter opens with a summary of advice on interviewing people with intellectual disabilities. Then the need rating algorithm is provided, as it applies to CANDID-S and Section 1 of CANDID-R. Need ratings of met (M), unmet (U) and no need (N) represent a change from the numerical ratings of CANDID 1st edition. Furthermore, a set of frequently asked questions and comprehensive answers is provided. The questions are applicable to both CANDID-S and CANDID-R.
A comprehensive training programme for completing the CANDID is described. It covers both versions of CANDID and provides all training slides and notes for the trainer. Learning points covered are the background to the CAN approach, the policy background to needs assessment in intellectual disabilities services, the concept of need, research using CANDID thus far, CANDID domains, need rating (no need, met need, unmet need), CANDID rating algorithm, structure of the CANDID (including trigger questions, anchor points, perceptions of help of interventions, and the differences between staff, service user and informal carers assessment of needs. Two case vignettes are provided along with expected ratings. A role play is suggested in order to give participants the opportunity to learn, practice or consolidate needs assessment using CANDID. A discussion focusses on the rationale behind each rating,
The development and psychometric evaluation of the CANDID is reported. It was developed by modification of the Camberwell Assessment of Need (CAN). The four principles that informed the development of the CAN and the CANDID are 1. people with intellectual disabilities and mental health problems have basic needs like everybody else along with specific needs associated with their conditions
2. the primary aim is to identify rather than describe in detail each need; once a need is identified more specialist assessment can be conducted in those domains
3. needs assessment should be possible to be conducted by a wide range of people, so that it can be applied in routine clinical practice
4. there may be differences of opinion about the existence of need amongst people involved and therefore different points of view should be recorded separately.
The reliability and validity of CAN have been investigated and found to be acceptable. Research studies using CANDID are summarised here.
The policy background is provided that underpins the assessment of needs in intellectual disabilities mental health services. Developments since the publication of the 1st edition of the CANDID are provided along with an updated list of measures and instruments used to assess needs in this population.
Step by step description of using the CANDID-R as a needs assessment tool is provided. This includes suggestions on what CANDID-S can be used for (as an audit and research tool, as well as as an aid for a CANDID-S user to familiarise themselves with the approach) and who can use CANDID-R (no formal training is required and can be used by any person with experience in working with adults with intellectual disabilities and mental health problems). Then, the question of who should be interviewed is addressed, whilst highlighting the importance of assessing needs of the person from three perspectives: that of the person being assessed, their informal carer and the staff involved in their care. A description is provided as to how the instrument is used by way of a semi-structured interview using trigger questions in each domain, to initiate discussion. As with CANDID-S, a timeframe of 4 weeks is used. In addition, the rating of informal and formal help and satisfaction with the latter is described. Thus, the interview with each respondent takes typically 20–30 minutes. Finally, the approach to recording the need ratings and summary scores is descibed: one recording sheet for each interview or record ratings on CANDID-R.