Sharon Stevelink

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.

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.

The Use of Facebook in Recruiting Participants for Health Research Purposes: A Systematic Review

Background Social media is a popular online tool that allows users to communicate and exchange information. It allows digital content such as pictures, videos and websites to be shared, discussed, republished and endorsed by its users, their friends and businesses. Adverts can be posted and promoted to specific target audiences by demographics such as region, age or gender. Recruiting for health research is complex with strict requirement criteria imposed on the participants. Traditional research recruitment relies on flyers, newspaper adverts, radio and television broadcasts, letters, emails, website listings, and word of mouth. These methods are potentially poor at recruiting hard to reach demographics, can be slow and expensive. Recruitment via social media, in particular Facebook, may be faster and cheaper. Objective The aim of this study was to systematically review the literature regarding the current use and success of Facebook to recruit participants for health research purposes. Methods A literature review was completed in March 2017 in the English language using MEDLINE, EMBASE, Web of Science, PubMed, PsycInfo, Google Scholar, and a hand search of article references. Papers from the past 12 years were included and number of participants, recruitment period, number of impressions, cost per click or participant, and conversion rate extracted. Results A total of 35 studies were identified from the United States (n=22), Australia (n=9), Canada (n=2), Japan (n=1), and Germany (n=1) and appraised using the Critical Appraisal Skills Programme (CASP) checklist. All focused on the feasibility of recruitment via Facebook, with some (n=10) also testing interventions, such as smoking cessation and depression reduction. Most recruited young age groups (16-24 years), with the remaining targeting specific demographics, for example, military veterans. Information from the 35 studies was analyzed with median values being 264 recruited participants, a 3-month recruitment period, 3.3 million impressions, cost per click of US

The prevalence of mental health disorders in (ex-)military personnel with a physical impairment: a systematic review

0.51, conversion rate of 4% (range 0.06-29.50), eligibility of 61% (range 17-100), and cost per participant of US

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

14.41. The studies showed success in penetrating hard to reach populations, finding the results representative of their control or comparison demographic, except for an over representation of young white women. Conclusions There is growing evidence to suggest that Facebook is a useful recruitment tool and its use, therefore, should be considered when implementing future health research. When compared with traditional recruitment methods (print, radio, television, and email), benefits include reduced costs, shorter recruitment periods, better representation, and improved participant selection in young and hard to reach demographics. It however, remains limited by Internet access and the over representation of young white women. Future studies should recruit across all ages and explore recruitment via other forms of social media.

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

Background Having a visual, hearing or physical impairment (defined as problems in body function or structure) may adversely influence the mental well-being of military personnel. This paper reviews the existing literature regarding the prevalence of mental health problems among (ex-)military personnel who have a permanent, predominantly, physical impairment. Method Multiple electronic literature databases were searched for relevant studies (EMBASE (1980–January 2014), MEDLINE (1946–January 2014), PsycINFO (2002–January 2014), Web of Science (1975–January 2014)). Results 25 papers were included in the review, representing 17 studies. Studies conducted among US military personnel (n=8) were most represented. A range of mental health disorders were investigated; predominately post-traumatic stress disorder (PTSD), but also depression, anxiety disorder (excluding PTSD), psychological distress and alcohol misuse. The findings indicate that mental health disorders including PTSD (range 2–59%), anxiety (range 16.1–35.5%), depression (range 9.7–46.4%) and psychological distress (range 13.4–36%) are frequently found whereby alcohol misuse was least common (range 2.2–26.2%). Conclusions Common mental health disorders were frequently identified among (ex-)military personnel with a physical impairment. Adequate care and support is necessary during the impairment adaptation process to facilitate the psychosocial challenges (ex-)military personnel with an impairment face. Future research should be directed into factors impacting on the mental well-being of (ex-)military personnel with an impairment, how prevalence rates vary across impairment types and to identify and act on specific needs for care and support.

Stigma-related barriers and facilitators to help seeking for mental health issues in the armed forces: a systematic review and thematic synthesis of qualitative literature

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.

The prevalence of mental health disorders in elderly US military veterans: a meta-analysis and systematic review

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.

Psychosocial impact of visual impairment and coping strategies in female ex-Service personnel

A recent quantitative review in the area of stigma and help seeking in the armed forces has questioned the association between these factors (Sharp et al. 2015). To date, the contribution of qualitative literature in this area has largely been ignored, despite the value this research brings to the understanding of complex social constructs such as stigma. The aim of the current systematic review of qualitative studies was to identify appropriate literature, assess the quality and synthesize findings across studies regarding evidence of stigma-related barriers and facilitators to help seeking for mental health issues within the armed forces. A multi-database text word search incorporating searches of PsycINFO, MEDLINE, Social Policy and Practice, Social Work Abstracts, EMBASE, ERIC and EBM Review databases between 1980 and April 2015 was conducted. Literature was quality assessed using the Critical Appraisal Skills Programme tool. Thematic synthesis was conducted across the literature. The review identified eight studies with 1012 participants meeting the inclusion criteria. Five overarching themes were identified across the literature: (1) non-disclosure; (2) individual beliefs about mental health; (3) anticipated and personal experience of stigma; (4) career concerns; and (5) factors influencing stigma. The findings from the current systematic review found that unlike inconsistent findings in the quantitative literature, there was substantial evidence of a negative relationship between stigma and help seeking for mental health difficulties within the armed forces. The study advocates for refinement of measures to accurately capture the complexity of stigma and help seeking in future quantitative studies.

UK support services for families of wounded, injured or sick Service personnel: the need for evaluation

OBJECTIVE Older veterans may be vulnerable to mental health problems. Meta-analytic and systematic review methods sought to determine the prevalence rate of mental health disorders in older military veterans (≥65 years). METHODS Eleven studies were eligible, and meta-analyses of veteran depression, substance abuse, post-traumatic stress disorder (PTSD), anxiety, dementia, bipolar disorder, and schizophrenia were conducted. RESULTS Although conducted exclusively with U.S. veterans, high prevalence rates of substance (5.7%) and alcohol use disorders (5.4%) in older veterans were found. However, the prevalence of other mental health disorders, including PTSD and depression, in older veterans was not markedly high. CONCLUSION The rates of disorder prevalence observed indicates a need for continued awareness of mental health difficulties, particularly substance and alcohol use disorders, in older veterans. In the future studies with non-U.S. military samples using a longitudinal design are required to further understand the prevalence of mental health disorders in geriatric veterans.