Rita Damayanti

The Meaning of Leprosy and Everyday Experiences: An Exploration in Cirebon, Indonesia

It is imperative to consider the meaning of leprosy and everyday experiences of people affected by leprosy and key persons in the community if one aims to make leprosy services more effective, which appears necessary in Indonesia given the large numbers of new cases detected annually. However, little is written in the international literature about the experiences of people currently being treated for leprosy, those cured, or other key informants. This paper analyses the narratives of the people by drawing upon in-depth interviews with 53 participants and 20 focus groups discussions. The participants were purposively selected. We provide insights into the experiences of people and the meaning they give to leprosy and highlight aspect of aetiology, spirituality, religion, darkening of the skin, and sorcery. We also examine experiences of seeking care and focused on the impact of the disease in particular on the elderly and children. In conclusion, the continued need for implementation of leprosy services in Indonesia is very evident. The diversities in peoples experiences with leprosy indicate a demand for responsive leprosy services to serve the diverse needs, including services for those formally declared to be “cured.”

Improving Coverage and Compliance in Mass Drug Administration for the Elimination of LF in Two ‘Endgame’ Districts in Indonesia Using Micronarrative Surveys

Background As the Global Programme to Eliminate Lymphatic Filariasis (LF) approaches its 2020 goal, an increasing number of districts will enter the endgame phase where drug coverage rates from mass drug administration (MDA) are used to assess whether MDA can be stopped. As reported, the gap between reported and actual drug coverage in some contexts has overestimated the true rates, thus causing premature administration of transmission assessment surveys (TAS) that detect ongoing LF transmission. In these cases, districts must continue with additional rounds of MDA. Two districts in Indonesia (Agam District, Depok City) fit this criteria—one had not met the pre-TAS criteria and the other, had not passed the TAS criteria. In both cases, the district health teams needed insight into their drug delivery programs in order to improve drug coverage in the subsequent MDA rounds. Methodology/Principal Findings To inform the subsequent MDA round, a micronarrative survey tool was developed to capture community members’ experience with MDA and the social realm where drug delivery and compliance occur. A baseline survey was implemented after the 2013 MDA in endemic communities in both districts using the EPI sampling criteria (n = 806). Compliance in the last MDA was associated with perceived importance of the LF drugs for health (p<0.001); perceived safety of the LF drugs (p<0.001) and knowing someone in the household has complied (p<0.001). Results indicated that specialized messages were needed to reach women and younger men. Both districts used these recommendations to implement changes to their MDA without additional financial support. An endline survey was performed after the 2014 MDA using the same sampling criteria (n = 811). Reported compliance in the last MDA improved in both districts from 57% to 77% (p<0.05). Those who reported having ever taken the LF drug rose from 79% to 90% (p<0.001) in both sites. Conclusions/Significance Micronarrative surveys were shown to be a valid and effective tool to detect operational issues within MDA programs. District health staff felt ownership of the results, implementing feasible changes to their programs that resulted in significant improvements to coverage and compliance in the subsequent MDA. This kind of implementation research using a micronarrative survey tool could benefit underperforming MDA programs as well as other disease control programs where a deeper understanding is needed to improve healthcare delivery.

The cultural validation of two scales to assess social stigma in leprosy

Background Stigma plays in an important role in the lives of persons affected by neglected tropical diseases, and assessment of stigma is important to document this. The aim of this study is to test the cross-cultural validity of the Community Stigma Scale (EMIC-CSS) and the Social Distance Scale (SDS) in the field of leprosy in Cirebon District, Indonesia. Methodology/principle findings Cultural equivalence was tested by assessing the conceptual, item, semantic, operational and measurement equivalence of these instruments. A qualitative exploratory study was conducted to increase our understanding of the concept of stigma in Cirebon District. A process of translation, discussions, trainings and a pilot study followed. A sample of 259 community members was selected through convenience sampling and 67 repeated measures were obtained to assess the psychometric measurement properties. The aspects and items in the SDS and EMIC-CSS seem equally relevant and important in the target culture. The response scales were adapted to ensure that meaning is transferred accurately and no changes to the scale format (e.g. lay out, statements or questions) of both scales were made. A positive correlation was found between the EMIC-CSS and the SDS total scores (r = 0.41). Cronbachs alphas of 0.83 and 0.87 were found for the EMIC-CSS and SDS. The exploratory factor analysis indicated for both scales an adequate fit as unidimensional scale. A standard error of measurement of 2.38 was found in the EMIC-CSS and of 1.78 in the SDS. The test-retest reliability coefficient was respectively, 0.84 and 0.75. No floor or ceiling effects were found. Conclusions/significance According to current international standards, our findings indicate that the EMIC-CSS and the SDS have adequate cultural validity to assess social stigma in leprosy in the Bahasa Indonesia-speaking population of Cirebon District. We believe the scales can be further improved, for instance, by adding, changing and rephrasing certain items. Finally, we provide suggestions for use with other neglected tropical diseases.

Psychosocial correlates of the motivation to abstain from sexual intercourse among Indonesian adolescents

Adolescents in Indonesia have limited access to sexuality education, resulting in increased risk of sexually transmitted infections and unplanned pregnancies. This study aimed to understand psychosocial correlates of sexual abstinence intentions to inform future sexuality education.

Assessing knowledge about lymphatic filariasis and the implementation of mass drug administration amongst drug deliverers in three districts/cities of Indonesia

BackgroundThis research assesses knowledge amongst drug deliverers about the implementation of mass drug administration (MDA) for lymphatic filariasis (LF) in Agam District (West Sumatera Province), the City of Depok (West Java Province) and the City of Batam (Kepulauan Riau Province), Indonesia.MethodsA cross-sectional survey was conducted from January to March 2015 at these three sites. Respondents were identified using purposive sampling (i.e. cadre, health worker or community representatives). A total of 318 questionnaires were accepted for analysis. Three outcomes were assessed: knowledge about LF; knowledge about MDA implementation; and was informed about MDA coverage. Logistic regression analyses were employed to examine factors associated with these three outcomes.ResultsLess than half of respondents were charactersised as having a high level of LF knowledge and less than half a high level of knowledge about MDA. The odds of having a high level of knowledge of LF was significantly lower in Batam City than Agam District, yet higher amongst health workers than cadres. Deliverers living in urban areas reported more feedback on MDA outcomes than in the rural district. Health workers received more feedback than cadres (P < 0.001). Deliverers perceived the difference between coverage (drug receipt) and compliance (drug ingestion) in the community.ConclusionsThere are variations in knowledge about LF and MDA as well as feedback across drug deliverers in MDA across geographical areas. Adaptation of the MDA guidelines, supportive supervision, increasing the availability of supporting materials and directly-observed therapy might be beneficial to improve coverage and compliance in all areas.

Poor Knowledge and Nonuse of Long-Acting/Permanent Methods of Contraceptives in Six Districts in Indonesia:

This analysis aimed at examining the association between the level of knowledge about long-acting/permanent methods of contraceptives (LAPM) and nonuse of LAPM among currently married, nonpregnant, and fecund women aged 15 to 49 years intending to limit childbearing. Data were derived from a cross-sectional study in Tuban, Kediri, and Lumajang District (East Java Province) and Lombok Barat, Lombok Timur, and Sumbawa District (Nusa Tenggara Barat Province) in June 2012. Information was obtained from 4323 respondents. Using multivariate logistic regression, we found that women with moderate levels of LAPM knowledge were less likely to use LAPM than women with high levels of knowledge (adjusted odds ratio [aOR] = 2.01, 95% CI = 1.51-2.68). Women with low level of LAPM knowledge were less likely to use LAPM than women with high levels of knowledge (aOR = 4.25, 95% CI = 3.37-5.36). Efforts to strengthen counseling services and increased provider knowledge and counselling skills are important to improve women’s knowledge about and use of LAPM.