W.H. van Brakel

Stigma and social participation in Southern India: Differences and commonalities among persons affected by leprosy and persons living with HIV/AIDS

Stigma is a common phenomenon worldwide and infectious diseases like HIV/AIDS and leprosy are often associated with high levels of stigma. Several studies have been conducted concerning the effects of stigma and the impact on social participation, but comparative studies are rare. The objective of this study was to identify differences and similarities between HIV/AIDS and leprosy-related stigma. From April till July 2009, 190 questionnaire-based interviews were conducted to assess the levels of internalized stigma (Internalized Stigma of Mental Illness scale), perceived stigma (Explanatory Model Interview Catalogue stigma scale) and social participation (Participation scale) in a cross-sectional sample of people affected by leprosy (PL) and people living with HIV/AIDS (PLHA). Respondents were selected from several hospitals, charity projects and during home visits in Vellore district, Tamil Nadu. Our results showed that both PLHA (n = 95) and leprosy-affected respondents (n = 95) faced a substantial burden of internalized and perceived stigma, with the former reporting a significantly higher level of stigma. As a result, PLHA faced more frequent and also more severe participation restrictions than PL. Especially, restrictions in work-related areas were reported by the majority of the respondents. In conclusion, PLHA faced a significantly higher level of stigma and participation restriction than PL. However, the latter also reported a substantial burden of stigma and participation restrictions. The study suggests that it may be possible to develop joint interventions based on the commonalities found. More research is needed to define these more precisely and to test the effectiveness of such joint interventions in reducing stigma and improving social participation.

A scale to assess activities of daily living in persons affected by leprosy

The aim of this study was to develop a scale for identifying disability among people in the rural areas of developing countries. The studies were carried out in the Green Pastures Hospital and the leprosy field programme of the Western Region of Nepal. With the help of staff experienced in working with people with disability, a 68-question questionnaire was made, based on the International Classification of Impairments, Activities and Participation (ICIDH-2). A survey was carried out of 269 people affected by leprosy who had impairments, as well as a sample of those who were unimpaired. The survey results were used to develop the questionnaire into a scale, using standard scale development methods. This included checking of criterion validity, discrimination and reliability and stability using weighted kappa statistics. Of the 68 questions, 38 were included in the second draft of the instrument. Eight questions were added to identify difficulty in relationships, about the use of aids and about occupation and employment. The sum score of the scale against the expert score gave a Spearman correlation coefficient of 0.72. Intra- and inter-interviewer reliability coefficients were 0.77 (95% CI 0.73-0.81) and 0.61 (95% CI 0.56-0.67), respectively. The stability test gave an overall kappa of 0.76 (95% CI 0.70-0.82). Four questions with particularly poor results were omitted from the final draft of the instrument. An interview-based instrument was developed for identifying limitations in activities of daily living (disability) in people living in a rural setting in a developing country--the Green Pastures Activity Scale (GPAS). The scale performed well during validity and reliability testing. It consists of 34 activity questions, five relationship questions, and three questions on the use of aids, occupation and employment.

The cross-cultural equivalence of participation instruments: a systematic review

Purpose: Concepts such as health-related quality of life, disability and participation may differ across cultures. Consequently, when assessing such a concept using a measure developed elsewhere, it is important to test its cultural equivalence. Previous research suggested a lack of cultural equivalence testing in several areas of measurement. This paper reviews the process of cross-cultural equivalence testing of instruments to measure participation in society. Methods: An existing cultural equivalence framework was adapted and used to assess participation instruments on five categories of equivalence: conceptual, item, semantic, measurement and operational equivalence. For each category, several aspects were rated, resulting in an overall category rating of ‘minimal/none’, ‘partial’ or ‘extensive’. The best possible overall study rating was five ‘extensive’ ratings. Articles were included if the instruments focussed explicitly on measuring ‘participation’ and were theoretically grounded in the ICIDH(-2) or ICF. Cross-validation articles were only included if it concerned an adaptation of an instrument developed in a high or middle-income country to a low-income country or vice versa. Results: Eight cross-cultural validation studies were included in which five participation instruments were tested (Impact on Participation and Autonomy, London Handicap Scale, Perceived Impact and Problem Profile, Craig Handicap Assessment Reporting Technique, Participation Scale). Of these eight studies, only three received at least two ‘extensive’ ratings for the different categories of equivalence. The majority of the cultural equivalence ratings given were ‘partial’ and ‘minimal/none’. The majority of the ‘none/minimal’ ratings were given for item and measurement equivalence. Conclusion: The cross-cultural equivalence testing of the participation instruments included leaves much to be desired. A detailed checklist is proposed for designing a cross-validation study. Once a study has been conducted, the checklist can be used to ensure comprehensive reporting of the validation (equivalence) testing process and its results. Implications for Rehabilitation Participation instruments are often used in a different cultural setting than initial developed for. The conceptualization of participation may vary across cultures. Therefore, cultural equivalence – the extent to which an instrument is equally suitable for use in two or more cultures – is an important concept to address. This review showed that the process of cultural equivalence testing of the included participation instruments was often addressed insufficiently. Clinicians should be aware that application of participations instruments in a different culture than initially developed for needs prior testing of cultural validity in the next context.

Vasomotor reflex testing in leprosy patients, healthy contacts and controls: a cross-sectional study in western Nepal.

OBJECTIVE To examine test characteristics of laser Doppler vasomotor reflex testing for leprosy and to determine the prevalence of abnormal responses in leprosy patients, healthy contacts and controls. DESIGN AND PARTICIPANTS Cross-sectional study including 89 leprosy patients (mean age 35 years, 74% male), 36 healthy contacts (29 years, 64% male) and 47 controls (30 years, 68% male), for a total of 172 participants. SETTING Leprosy hospital in an endemic region 200 km west of Kathmandu, Nepal. OUTCOME MEASURE Finger-tip and toe-tip vasomotor reflexes elicited by inspiratory gasp were measured using a laser-doppler flow temperature technique. Results were expressed in per cent as the maximal reduction in bloodflow from baseline. RESULTS For all 12 measurement sites there were highly significant (p > 0.0001 to < 0.004) differences between the three groups tested. Leprosy patients consistently had the lowest responses and controls the highest, with healthy contacts showing intermediate values. Thresholds defined as mean bloodflow reductions among controls minus 1.64 or minus 1.96 standard deviations provided optimal combinations of sensitivity and specificity. Using these cut-off values around 80% of leprosy patients, 50% of healthy contacts and 20% of controls had two or more abnormal reflexes (p < 0.0001 for differences between groups). CONCLUSIONS In endemic regions, subclinical autonomic neuropathy may be an early but detectable marker for the risk of subsequent leprosy, making early treatment and prevention of transmission possible. Prospective studies are needed to establish the predictive value of abnormal vasomotor reflexes.

Testing the psychometric properties of the Participation Scale in Eastern Nepal.

PurposeTo test the psychometric properties of the Participation Scale (P-scale) among people with various disabling conditions in Eastern Nepal.MethodsA sample of 153 individuals with disabling conditions was selected through systematic random sampling. The following psychometric properties were tested: structural validity (explanatory and confirmatory factor analyses), internal consistency, inter-tester reliability, construct validity and floor and ceiling effects.ResultsThe explanatory factor analysis indicated a two-factor structure (‘work-related participation’ and ‘general participation’). The confirmatory factor analysis suggested good model fit. The internal consistency measured with Cronbach’s alpha was 0.93 for the whole scale and 0.78 and 0.93 for the subscales. The inter-tester reliability coefficient was 0.90. All hypothesized correlations were as expected confirming the construct validity of the scale. No floor or ceiling effects were identified for the whole scale; only the subscale ‘work-related participation’ showed a ceiling effect.ConclusionThe results of the analyses suggest that the psychometric properties of the P-scale are sufficient in the context of Eastern Nepal. Use of the P-scale will require (re-) confirmation of its validity in each new cultural context.

Development and structural validation of a shortened version of the Participation Scale

Purpose: To validate a shortened version of the Participation Scale (P-scale) that will be quicker to use and to describe the factor structure found in the P-scale data in various study samples. Methods: A large multi-country and multi-cultural database was compiled consisting of 5125 respondents. Item analysis, explanatory factor analysis and confirmatory factor analysis were applied to identify items for deletion and investigate the factor structure of the P-scale. Results: The multi-country database included 11 databases from six different countries. Respondents were affected by a range of health conditions, including leprosy, HIV/AIDS, dermatological conditions and various disabilities. Of the respondents included 57% were male. The P-scale Short (PSS) contains 13 items. A two-factor structure, with factors named “work-related participation” (three items) and “general participation” (10 items), showed the best model fit (Comparative Fit Index = 0.983, Tucker Lewis Index = 0.979, Rooted Mean Square Error of Approximation = 0.061). The Cronbach’s alphas were very good for both the whole scale and the subscales, 0.91, 0.83 and 0.90, respectively. Correlation between the two factors was high (r = 0.75) indicating that interpreting the P-scale as measuring an overall factor “participation” is still valid. A very high correlation (r = 0.99) was found between the full P-scale and the PSS. Conclusions:The findings suggest good validity of the P-scale across a range of languages and cultures. However, field testing needs to confirm the validity of the PSS to measure the level of social participation restrictions across cultures and health conditions. Implications for Rehabilitation The Participation Scale can be used to measure restrictions in social participation. The Participation Scale showed consistent structural validity across many different cultural settings and target groups. A shorter version of the scale was developed, namely the Participation Scale Short. The Participation Scale Short needs field testing before application to test its reliability, validity, reduction in administration time and usefulness.

‘People like me don't make things like that’: Participatory video as a method for reducing leprosy-related stigma

ABSTRACT The Stigma Assessment and Reduction of Impact project aims to assess the effectiveness of stigma-reduction interventions in the field of leprosy. Participatory video seemed to be a promising approach to reducing stigma among stigmatized individuals (in this study the video makers) and the stigmatisers (video audience). This study focuses on the video makers and seeks to assess the impact on them of making a participatory video and to increase understanding of how to deal with foreseeable difficulties. Participants were selected on the basis of criteria and in collaboration with the community health centre. This study draws on six qualitative methods including interviews with the video makers and participant observation. Triangulation was used to increase the validity of the findings. Two videos were produced. The impact on participants ranged from having a good time to a greater sense of togetherness, increased self-esteem, individual agency and willingness to take action in the community. Concealment of leprosy is a persistent challenge, and physical limitations and group dynamics are also areas that require attention. Provided these three areas are properly taken into account, participatory video has the potential to address stigma at least at three levels – intrapersonal, interpersonal and community – and possibly more.

Learning from a leprosy project in Indonesia: making mindsets explicit for stigma reduction

International attention for disability recognises that it plays an important role in persistent poverty. Leprosy can cause preventable disability. Stigma associated with leprosy often has greater implications for people affected than physical impairments. The Stigma Assessment and Reduction of Impact (SARI) project in Indonesia employs an action research methodology to develop stigma reduction interventions. By exploring the different mindsets of the stakeholders in the reconnaissance phase of the project, the project identified differences in aspirations, attitudes to research, and conflicting intrinsic models of disability. The differences in mindsets are not symptoms of failure but, rather, should be actively sought out.