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For several years stigma researchers in India have relied on Western instruments or semi-structured stigma scales in their studies. However, these scales have not been rigorously translated and adapted to the local cultural framework. In the current study, we describe the cultural adaptation of six stigma scales with the purpose of using it in the native language (Kannada) based on translation steps of forward translation, expert review and synthesis, cultural equivalence, back translation and cognitive interview processes.
Several items were modified in the target language at each stage of the cultural adaptation process as mentioned in the above steps across all scales. Cultural explanations for the same have been provided. Concepts such as “community forest” and “baby sitting" was replaced with equivalent native synonyms. We introduced native cultural and family values such as “joint family system” and modified the item of housing concept in one of the tools. The concept of “privacy” in the Indian rural context was observed to be familial than individual-based and modification of corresponding items according to the native context of “privacy”. Finally, items from each scale were modified but retained without affecting the meaning and the core construct.
Objectives: This work was aimed at characterizing the experiences of discrimination, and report initial psychometric properties of a new tool to capture these experiences, among a global sample of people living with dementia.
Methods: Data from 704 people living with dementia who took part in a global survey from 33 different countries and territories were analysed. Psychometric properties were examined, including internal consistency and construct validity.
Results: A total of 83% of participants reported discrimination in one or more areas of life, and this was similar across WHO Regions. The exploratory factor analysis factor loadings and scree plot supported a unidimensional structure for the Discrimination and Stigma Scale Ultra Short for People Living with Dementia (DISCUS-Dementia). The instrument demonstrated excellent internal consistency, with most of the construct validity hypotheses being confirmed and qualitative responses demonstrating face validity.
Conclusions: The DISCUS-Dementia performs well with a global sample of people living with dementia. This scale can be integrated into large-scale studies to understand factors associated with stigma and discrimination. It can also provide an opportunity for a structured Discussion around stigma and discrimination experiences important to people living with dementia, as well as planning psychosocial services and initiatives to reduce stigma and discrimination.
Many people achieve positive outcomes from psychological therapies for anxiety and depression. However, not everyone benefits and some may require additional support. Previous studies have examined the demographic and clinical characteristics of people starting treatment and identified a patient profile that is associated with poor clinical outcomes.
Aims:
To examine whether the addition of employment-related support alongside psychological therapy was associated with a greater chance of recovery for clients belonging to this patient profile.
Method:
We analysed 302 clients across three services, who were offered employment-related support alongside psychological therapy. The rate of clinical recovery (falling below clinical thresholds on measures of both anxiety and depression) was compared between individuals who accepted the offer and those who declined, while adjusting for potential confounders.
Results:
Logistic regression showed that receiving employment support was significantly associated with clinical recovery after controlling for baseline anxiety and depression scores, the number of psychological treatment sessions, and other clinical and demographic variables. The odds of recovery were 2.54 times greater if clients received employment support; 47% of clients who received employment support alongside psychological therapy were classified as recovered, compared with 27% of those receiving psychological therapy only.
Conclusions:
Providing employment support alongside therapy may be particularly helpful for clients belonging to this patient profile, who represent approximately 10% of referrals to NHS Talking Therapies for Anxiety and Depression services. Services could consider how to increase the provision and uptake of employment-focused support to enhance clients’ clinical outcomes.
The recent World Health Organization (WHO) blueprint for dementia research and Lancet Commission on ending stigma and discrimination in mental health has identified a gap around dementia-related measures of stigma and discrimination that can be used in different cultural, language and regional contexts.
Aims
We aimed to characterise experiences of discrimination, and report initial psychometric properties of a new tool to capture these experiences, among a global sample of people living with dementia.
Method
We analysed data from 704 people living with dementia who took part in a global survey from 33 different countries and territories. Psychometric properties were examined, including internal consistency and construct validity.
Results
A total of 83% of participants reported discrimination in one or more areas of life, and this was similar across WHO Regions. The exploratory factor analysis factor loadings and scree plot supported a unidimensional structure for the Discrimination and Stigma Scale Ultra Short for People Living with Dementia (DISCUS-Dementia). The instrument demonstrated excellent internal consistency, with most of the construct validity hypotheses being confirmed and qualitative responses demonstrating face validity.
Conclusions
Our analyses suggest that the DISCUS-Dementia performs well with a global sample of people living with dementia. This scale can be integrated into large-scale studies to understand factors associated with stigma and discrimination. It can also provide an opportunity for a structured discussion around stigma and discrimination experiences important to people living with dementia, as well as planning psychosocial services and initiatives to reduce stigma and discrimination.
Research on the measurement of mental illness stigma and discrimination has grown rapidly in the past 15 years with a large number of measures developed. This chapter first defines mental illness stigma and discrimination and highlights the importance of using an appropriately targeted measurement strategy including consideration of key measurement principles such as content validity, context of use, and psychometric properties. Nine commonly used measures of perceived, experienced, and self -stigma and discrimination are then highlighted with measurement considerations summarized. We also discuss global and local measurement issues including translation and cross-cultural adaptation. Future directions for stigma and discrimination measurement research in mental illness stigma and discrimination are presented including the need to ensure that research includes consideration of complexity and variation in the experience of stigma and discrimination and that research is focused proportionately on communities that experience the most mental illness stigma and discrimination.
This chapter focuses on the interventions designed to reduce the stigma and discrimination against people with mental illness at the person-level for individuals and small groups. The current evidence for anti-stigma interventions using social contact and educational strategies will be presented with a focus on interventions for specific target groups including healthcare professionals, police, and students, as well as in low- and middle-income countries (LMIC). The chapter addresses the need for further high-quality research evaluating the long-term sustainability of interventions aiming to reduce stigma and discrimination relating to mental illness, and the urgent need for further research in LMIC settings.
The Discrimination and Stigma Scale (DISC) is a patient-reported outcome measure which assesses experiences of discrimination among persons with a mental illness globally.
Methods
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.
Results
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].
Conclusions
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.
To identify: 1) best practice aged care principles and practices for Aboriginal and Torres Strait Islander older peoples, and 2) actions to integrate aged care services with Aboriginal community-controlled primary health care.
Background:
There is a growing number of older Aboriginal and Torres Strait Islander peoples and an unmet demand for accessible, culturally safe aged care services. The principles and features of aged care service delivery designed to meet the unique needs of Aboriginal and Torres Strait Islander peoples have not been extensively explored and must be understood to inform aged care policy and primary health care planning into the future.
Methods:
The research was governed by leaders from across the Aboriginal community-controlled primary health care sector who identified exemplar services to explore best practice in culturally aligned aged care. In-depth case studies were undertaken with two metropolitan Aboriginal community-controlled services. We conducted semi-structured interviews and yarning circles with 46 staff members to explore key principles, ways of working, enablers and challenges for aged care service provision. A framework approach to thematic analysis was undertaken with emergent findings reviewed and refined by participating services and the governance panel to incorporate national perspectives.
Findings:
A range of principles guided Aboriginal community-controlled aged care service delivery, such as supporting Aboriginal and Torres Strait Islander identity, connection with elders and communities and respect for self-determination. Strong governance, effective leadership and partnerships, Aboriginal and Torres Strait Islander workforce and culturally safe non-Indigenous workforce were among the identified enablers of aged care. Nine implementation actions guided the integration of aged care with primary health care service delivery. Funding limitations, workforce shortages, change management processes and difficulties with navigating the aged care system were among the reported challenges. These findings contribute to an evidence base regarding accessible, integrated, culturally safe aged care services tailored to the needs of Aboriginal and Torres Strait Islander peoples.
UK Biobank is a well-characterised cohort of over 500 000 participants including genetics, environmental data and imaging. An online mental health questionnaire was designed for UK Biobank participants to expand its potential.
Aims
Describe the development, implementation and results of this questionnaire.
Method
An expert working group designed the questionnaire, using established measures where possible, and consulting a patient group. Operational criteria were agreed for defining likely disorder and risk states, including lifetime depression, mania/hypomania, generalised anxiety disorder, unusual experiences and self-harm, and current post-traumatic stress and hazardous/harmful alcohol use.
Results
A total of 157 366 completed online questionnaires were available by August 2017. Participants were aged 45–82 (53% were ≥65 years) and 57% women. Comparison of self-reported diagnosed mental disorder with a contemporary study shows a similar prevalence, despite respondents being of higher average socioeconomic status. Lifetime depression was a common finding, with 24% (37 434) of participants meeting criteria and current hazardous/harmful alcohol use criteria were met by 21% (32 602), whereas other criteria were met by less than 8% of the participants. There was extensive comorbidity among the syndromes. Mental disorders were associated with a high neuroticism score, adverse life events and long-term illness; addiction and bipolar affective disorder in particular were associated with measures of deprivation.
Conclusions
The UK Biobank questionnaire represents a very large mental health survey in itself, and the results presented here show high face validity, although caution is needed because of selection bias. Built into UK Biobank, these data intersect with other health data to offer unparalleled potential for crosscutting biomedical research involving mental health.
UK Biobank is a well-characterised cohort of over 500 000 participants that offers unique opportunities to investigate multiple diseases and risk factors.
Aims
An online mental health questionnaire completed by UK Biobank participants was expected to expand the potential for research into mental disorders.
Method
An expert working group designed the questionnaire, using established measures where possible, and consulting with a patient group regarding acceptability. Case definitions were defined using operational criteria for lifetime depression, mania, anxiety disorder, psychotic-like experiences and self-harm, as well as current post-traumatic stress and alcohol use disorders.
Results
157 366 completed online questionnaires were available by August 2017. Comparison of self-reported diagnosed mental disorder with a contemporary study shows a similar prevalence, despite respondents being of higher average socioeconomic status than the general population across a range of indicators. Thirty-five per cent (55 750) of participants had at least one defined syndrome, of which lifetime depression was the most common at 24% (37 434). There was extensive comorbidity among the syndromes. Mental disorders were associated with high neuroticism score, adverse life events and long-term illness; addiction and bipolar affective disorder in particular were associated with measures of deprivation.
Conclusions
The questionnaire represents a very large mental health survey in itself, and the results presented here show high face validity, although caution is needed owing to selection bias. Built into UK Biobank, these data intersect with other health data to offer unparalleled potential for crosscutting biomedical research involving mental health.
Declaration of interest
G.B. received grants from the National Institute for Health Research during the study; and support from Illumina Ltd. and the European Commission outside the submitted work. B.C. received grants from the Scottish Executive Chief Scientist Office and from The Dr Mortimer and Theresa Sackler Foundation during the study. C.S. received grants from the Medical Research Council and Wellcome Trust during the study, and is the Chief Scientist for UK Biobank. M.H. received grants from the Innovative Medicines Initiative via the RADAR-CNS programme and personal fees as an expert witness outside the submitted work.
Edited by
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There has been a substantial increase in research on the stigma related to mental illness over the past 10 years (Major & O'Brien, 2005; Weiss et al, 2006). This chapter clarifies current practice in one area: the survey measurement of stigma among those who have personal experience of mental illness. The definition and construct of stigma are first discussed, and then the method and results of a review of current measures of personal mental illness stigma are presented.
Defining stigma
The classic starting point for defining the stigma of mental illness is Goffman's ‘an attribute that is deeply discrediting’. The recognition of this attribute leads the stigmatised person to be ‘reduced … from a whole and usual person to a tainted or discounted one’ (Goffman, 1963, p. 3). This presents stigma as the relationship between attribute and stereotype. In Goffman's terms, attributes can be categorised in three main groups: abominations of the body (e.g. physical disability or visible deformity); blemishes of individual character (e.g. mental illness, criminal conviction); and ‘tribal’ stigmas (e.g. race, gender, age).
The work of Jones et al (1984) built on these categorisations with a focus on the study of ‘marked relationships’. In this definition, stigma occurs when the mark links the identified person, via attributional processes, to undesirable characteristics, which discredit him or her. They propose six dimensions of stigma:
concealability – how obvious or detectable a characteristic is to others
course – whether the difference is lifelong or reversible over time
disruptiveness – the impact of the difference on interpersonal Relationships
aesthetics – whether the difference elicits a reaction of disgust or is perceived as unattractive
origin – the causes of the difference, particularly whether the individual is perceived as responsible for this difference
peril – the degree to which the difference induces feelings of threat or danger in others.
Elliott et al (1982) emphasised the social interaction in stigma. In their definition, stigma is a form of deviance that leads others to judge an individual as illegitimate for participation in a social interaction. This occurs because of a perception that that person lacks the skills or abilities to carry out such an interaction, and is also influenced by judgements about the dangerousness and unpredictability of the person.
Many mental health service users delay or avoid disclosing their condition to employers because of experience, or anticipation, of discrimination. However, non-disclosure precludes the ability to request ‘reasonable adjustments’. There have been no intervention studies to support decisionmaking about disclosure to an employer.
Aims
To determine whether the decision aid has an effect that is sustained beyond its immediate impact; to determine whether a large-scale trial is feasible; and to optimise the designs of a larger trial and of the decision aid.
Method
In this exploratory randomised controlled trial (RCT) in London, participants were randomly assigned to use of a decision aid plus usual care or usual care alone. Follow-up was at 3 months. Primary outcomes were: (a) stage of decision-making; (b) decisional conflict; and (c) employment-related outcomes (trial registration number: NCT01379014).
Results
We recruited 80 participants and interventions were completed for 36 out of 40 in the intervention group; in total 71 participants were followed up. Intention-to-treat analysis showed that reduction in decisional conflict was significantly greater in the intervention group than among controls (mean improvement −22.7 (s.d. = 15.2) v. −11.2 (s.d. = 18.1), P = 0.005). More of the intervention group than controls were in full-time employment at follow-up (P = 0.03).
Conclusions
The observed reduction in decisional conflict regarding disclosure has a number of potential benefits which next need to be tested in a definitive trial.
Project Energize, a region-wide whole-school nutrition and physical activity programme, commenced as a randomised controlled trial (RCT) in the period 2004–6 in 124 schools in Waikato, New Zealand. In 2007, sixty-two control schools were engaged in the programme, and by 2011, all but two of the 235 schools in the region were engaged. Energizers (trained nutrition and physical activity specialists) work with eight to twelve schools each to achieve the goals of the programme, which are based on healthier eating and enhanced physical activity. In 2011, indices of obesity and physical fitness of 2474 younger (7·58 (sd 0·57) years) and 2330 older (10·30 (sd 0·51) years) children attending 193 of the 235 primary schools were compared with historical measurements. After adjusting for age, sex, ethnicity, socio-economic status (SES) and school cluster effects, the combined prevalence of obesity and overweight among younger and older children in 2011 was lower by 31 and 15 %, respectively, than that among ‘unEnergized’ children in the 2004 to 2006 RCT. Similarly, BMI was lower by 3·0 % (95 % CI − 5·8, − 1·3) and 2·4 % (95 % CI − 4·3, − 0·5). Physical fitness (time taken to complete a 550 m run) was significantly higher in the Energized children (13·7 and 11·3 %, respectively) than in a group of similarly aged children from another region. These effects were observed for boys and girls, both indigenous Māori and non-Māori children, and across SES. The long-term regional commitment to the Energize programme in schools may potentially lead to a secular reduction in the prevalence of overweight and obesity and gains in physical fitness, which may reduce the risk of developing obesity and type 2 diabetes.