Validity and reliability of the tuberculosis-related stigma scale version for Brazilian Portuguese

Tuberculosis-related stigma has been studied around the world. Patients’ behaviour in response to social discrimination has contributed to diagnostic delays and the abandonment of treatment, resulting in an increased number of multidrug-resistant tuberculosis (TB) cases [1, 2].

Among the political and social commitments to reduce the stigma, the identification of affected populations is highlighted, as well as the assessment of the stigma by means of valid and reliable tools, developed or adapted for the target culture. The use of these instruments in different countries and languages contributes to the identification of the health needs, decision taking and care improvements, besides enhancing the communication among researchers and professionals from different cultures [3].

Few instruments were found in the literature that serve to measure tuberculosis-related stigma and were subject to validity and reliability assessments [4–6]. No formally adapted scales exist in Brazil for measuring TB-related stigma.

To analyse the determining factors of this stigma, identify the intervention points and assess the quality of care and its effectiveness in the reduction of the stigma, Van Rie et al. developed a scale called the Tuberculosis-Related Stigma scale, which measures tuberculosis stigma in quantitative terms [6].

The Tuberculosis-Related Stigma scale was built in southern Thailand and its initial items were selected based on the following key domains: fear of transmitting the disease, values and attitudes associated with shame, guilt, judgment and revelation of one’s status, obtained through the literature review. After interviews and focus groups with patients, relatives, health professionals and community members, the scale was adapted culturally and linguistically for use in Brazil [6].

The scale was translated into English, Thai and Malayan (Austronesian language of the Malay people and those of other ethnic origins living in southern Thailand) with satisfactory internal consistency (Cronbach’s alpha >0.70). The construct validity showed an inverse correlation with social support, confirming the statistical hypothesis the authors presented in the validation process.

In view of the disease’s current epidemiological reality in the country and around the world, in which the sociocultural aspects involved in the early diagnosis and cure of TB are increasingly important, and as there are no tools available in Brazilian Portuguese to measure it, the validation of the Tuberculosis-Related Stigma scale for use in Brazil is both appropriate and relevant. The objective in this study was to analyse the initial psychometric properties of the Tuberculosis-Related Stigma scale in Brazil for TB patients.

Eighty-three patients who were under treatment for TB at the four referral outpatient clinics participated in the study. The minimal sample at each service consisted of seven patients and one patient refused to participate. As regards the patients’ sex, 56 (67.5%) were men and 27 (32.5%) women. As far as professional occupation is concerned, 38 (45.8%) were unemployed at the time of the data collection. The age ranged between 19 and 92 years, with a mean age of 43 (SD 13.9); the mean length of education was about seven years and the mean family income was less than two minimum wages per month.

When testing the impact of removing each item on the total alpha coefficient of the scale dimensions, changes were observed, ranging from 0.62 (Some people may not want to eat or drink with family members who have TB) to 0.72 (Some people prefer not to have individuals with TB living in their community) in the first dimension, and from 0.65 (Some people with TB fear telling people outside their families that they have the disease) to 0.74 (Some people with TB are not worried about the possibility of having Aids too) in the second dimension.

The Cronbach’s alpha was considered good for both the dimension Community perspectives on TB (0.70) and the dimension Patient perspectives on TB (0.71).

For the divergent validity, the results of both scale dimensions presented coefficients different from 100% (Table 6).

The objective of the study was to test the initial psychometric properties of the version of the Tuberculosis-related stigma scale adapted to Brazilian Portuguese, with a view to offering an instrument to measure and assess the TB-related stigma. Therefore, the guidelines found in international and Brazilian literature were followed [19–21].

The psychometric properties obtained through the pilot test, which included a sample of 83 patients under treatment for TB at the four referral outpatient clinics, permitted a preliminary analysis of the reliability and validity of the scale version adapted for use in Brazil.

With respect to the descriptive statistical measures of the scale, the mean score in each dimension was higher than the mean score for the entire scale, with 83.1% for the dimension Community perspectives on TB and 62.7% for the dimension Patient perspectives on TB.

With regard to the presence of floor and ceiling effects, in this study, these were not found in any of the scale dimensions. This predicts good responsiveness [17], an important characteristic in detecting changes in TB patients’ health condition over time, related to the presence or absence of stigma.

Authors [22] consider that the approach based on statistical distribution, i.e. measures based on the longitudinal distribution of the sample, is one of the measures for assessing the responsiveness. Any change in the variability of the scores, i.e. floor and ceiling effects, can minimize the responsiveness to changes.

Although there is no clarity about the type of change a responsible scale should be capable of detecting, i.e. changes related to treatment compliance and continuity or changes in the current value of the construct studied, psychosocial measures such as stigma can be used in the clinical assessment of TB patients. Nevertheless, it is essential to demonstrate its accurate detection of changes over time, by means of valid and reliable tools.

As regards the reliability of the scale, these findings demonstrated that the Tuberculosis-Related Stigma scale presents good coefficients in both dimensions (0.70 and 0.71). In the version used in southern Thailand, the coefficient corresponds to 0.88 in the Community dimension and 0.82 in the Patient dimension. The coefficients in Brazil are lower than those found in southern Thailand, but indicate the internal consistency of the scale according to criteria proposed in the literature, with scores ranging between 0.7 and 0.95, therefore the scale is really appropriate to the population of the study [15].

It is important to highlight that an excellent internal consistency in scales with more than one dimension (multidimensionality) indicates that the items in the different dimensions of a scale are strongly correlated, although the relation between the dimensions is inferior to that observed between the component items [18].

Cronbach’s alpha is a useful indicator for investigating the reliability of a measure, and thus permits the precision of an instrument to be studied. Nevertheless, this estimate is subject to different influences that should be interpreted with caution [18].

According to authors [23], when calculating Cronbach’s alpha, each item should be tested individually in relation to the other scale items. Thus, an item should be eliminated from the scale if the final alpha coefficient of the scale is higher without it. In a strictly psychometric analysis of the impact that the removal of each item would have on the total alpha of the dimension Patient perspectives toward tuberculosis, it was observed that items 6 and 9, written inversely, possess low item-total coefficients and should be eliminated. Both items translate behaviours that represent the TB-associated stigma, though, and keeping them in the scale does not represent any great loss of internal consistency, which can be tested in larger samples to verify whether these preliminary findings are coherent.

One author changed the order of the question, using positive and negative questions in the same instrument, and detected that this procedure confounds the respondents, advising against its use [24]. When inverting the order of the question, the items may not be perceived in exactly the opposite sense, which results in a lower reliability and validity of the data [25].

To study the construct validity, convergent and divergent validity were used, in which a linear correlation exists between the items of the scale version adapted to Brazil, mostly above 0.30, and the dimension they belong to (convergent validity), which is ideal for initial studies [17].

In the divergent validity, the results of both dimensions presented coefficients different to 100%. According to Fayers and Machin (2002) [17], the closer to 100%, the better the divergent validity. We believe that this kind of data can be related to the following aspects: a) subjectivity of the measure; b) background experience with internalized stigma. These aspects could be considered in future studies for analysing these results.

According to Link and Phelan (2001) [26], the distinct coefficients related to the stigmatization process, the different operations of these concepts, and the lack of particularity of the measures and constructs used make it impossible to construct syntheses that evidence how stigma influences people’s lives.

Nevertheless, the use of scales to assess the social stigma related to TB allows an explanation of why this can be a predictive factor of diagnostic delays and non-compliance with treatment in some contexts and not in others. This serves as a tool for assessing and redirecting resources to strengthen social support networks that involve intersectoral TB actions in health services [27].

In addition, the scale might be used as technology in TB care as algorithms screening for TB diagnosis or detection [28]. In this case, it will be able to be used to stratify the risk of TB stigma and support health-care professionals and health managers in taking decisions about more appropriate interventions to face the prejudices and myths related to TB as well to raise the awareness of the patients, their families and communities that the disease has a cure since the patients have a prompt diagnosis, social support and worthwhile treatment. Although the negative effect of stigma in the disease course is recognized, unfortunately there are still not enough tools to help health-care professionals manage the problem.

Brazil has a low treatment success rate of 71% even though it has adopted the DOTS as a universal strategy for all TB patients, and the stigma is probably an explanation for that. The WHO has launched an End TB strategy in which, among three pillars, one requires social protection as a resource for alleviating the situation of TB patients in terms of poverty and catastrophic expenditures [29].

However, social protection is more than just cash and social transfers, it includes the transformation of the social environment in which people live and also tackling stigma and discrimination just as has been done with HIV [30]. Therefore the study can contribute to moving TB care out of the box [31].

Among the study limitations, it is important to consider the small sample size, which is why confirmatory factor analysis could not be applied; it requires at least 10 subjects for each scale item [32]. Another limitation is that Brazil is a huge country, with cultural, historical and social differences, which might influence the cultural adaptation and validation of the Tuberculosis-Related Stigma scale.

Therefore, a methodological study was proposed to serve as a reference for Brazilian researchers for the mapping and monitoring of social stigma in different Brazilian regions. The use of specific tools can entail advances for care by taking into account psychosocial aspects, beyond the patient’s own expectations concerning his disease.

The scale presented favourable initial psychometric properties in the pilot test, which sustains the validity and reliability of the scale in the Brazilian context. It would be interesting to apply the scale more widely to confirm through more robust statistical tests the relevance of the scale for Brazil. It was the first scale validated in the Portuguese language, which might be helpful for other Portuguese-speaking countries that are equally affected by tuberculosis and stigma as the African countries since the scale is adapted and assessed for their contexts. In any case, the Tuberculosis-Related Stigma scale can stimulate the advancement of operational research and the development of strategic actions to reduce the stigma of TB.