The unbreakable journey: using photovoice to raise awareness and fight leprosy stigma in Papua, Indonesia.
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ABSTRACT:
SUBMITTER: Dien R
PROVIDER: S-EPMC10230960 | biostudies-literature | 2023 May
REPOSITORIES: biostudies-literature
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The unbreakable journey: using photovoice to raise awareness and fight leprosy stigma in Papua, Indonesia.
Dien Ragil R Krismawati Hana H Ayomi Ivon I Timoria Diana D Chambers Mary M Soebono Hardyanto H Grijsen Marlous L ML
The British journal of dermatology 20230501 6
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Project description:ObjectiveTo provide knowledge about the domains of life affected by stigma towards leprosy in Indonesia, including its manifestations, driving factors and consequences.DesignQualitative systematic review.Study selectionPubMed, CINAHL, ProQuest, Taylor&Francis and Google Scholar were used to systematically search studies with qualitative component that were conducted in Indonesia and published from January 2000 to December 2020 in English or Indonesian language. The search was started in November 2020 and reran in April 2021. Quality assessment and thematic synthesis were applied.Data extractionOf the 3184 studies, 37 manuscripts were reviewed. Information relating to study characteristics, stigma domains and types following Weiss Extended Scambler's Hidden Stress Model, stigma consequences and drivers were extracted.ResultsSeven themes were identified. Three themes-community, domestic and intimate relationships-impacted private domains. Four themes-health, economics, education and public entitlements-concerned public domains. Studies mainly discussed enacted stigma rather than anticipated and internalised stigma. Ten stigma-driving factors were found, ranging from negative and positive concepts linked with the condition to aspects not related to the disease process. Five areas of consequences were shown. Impact on public rights, such as education, was very minimally explored, although school absence was often mentioned. Stigma manifestation, drivers and consequences in most public domains were least explored.ConclusionLeprosy-affected persons in Indonesia experienced and felt stigma in private and public domains. Disease-related aspects, the culture and history of a particular region are linked with stigma manifestations. Approaches in one domain can affect another domain. More exploratory studies are needed in the endemic areas outside Java, especially considering both the lack of studies there and the unique culture of each Indonesian region.
| S-EPMC9716944 | biostudies-literature
Project description:BackgroundThis paper assesses the impact of a counselling intervention on reducing leprosy-related stigma in Cirebon District, Indonesia. The unique features of this intervention are its rights-based approach, the underlying Cognitive Behavioural Therapy (CBT) model, the three types of counselling and the lay and peer counsellors who were involved.Methodology/principal findingsMixed methods (e.g. three scales, interviews, focus group discussions and reflection notes) were used to assess the impact of the intervention, which ran over a two-year period. There was a control area with no interventions. The study participants were people affected by leprosy and other key persons (e.g. family members). The sample size differs per method, for example, data regarding 67 counselling clients and 57 controls from a cohort, and notes from 207 counselling clients were examined. The notes showed that most clients faced stigma on a daily basis, whether internalized, anticipated and/or enacted. A significant reduction was found between the before and after total scores of the SARI Stigma Scale (p-value < 0.001), Participation Scale Short (p-value < 0.001) and WHO Quality of Life score (p-value < 0.001) among the counselling clients. While there is also an effect in the control group, it is much larger in the intervention group. Qualitative data indicates that knowledge and rights trigger change. Clients took steps to improve their life such as re-connecting with neighbours, helping in household activities and applying for jobs. Challenges include the wish to conceal their condition.Conclusion/significanceThe findings show that the counselling intervention was effective in reducing stigma, promoting the rights of people with leprosy and facilitating their social participation. More research is needed on how to create a more sustainable intervention, preferably structurally embedded in the health or social services.
| S-EPMC5154499 | biostudies-literature
Project description:BackgroundThe purpose of SNAP Out Stigma (SOS) was to design and implement a community-based intervention to reduce HIV-related stigma for people living with HIV (PLWH) in the Deep South. This region is a subset of 9 states including Memphis, Tennessee (project site) driving the epidemic in the United States. The purpose of this paper is to explain how PLWH in the U.S. South used Photovoice to communicate stigmatizing lived experiences and contextualize their intersection with multi-level sources of support.MethodsPLWH attended one-on-one and/or group sessions with other PLWH. In Session 1, PLWH received a project overview, met other participants, received a camera and camera training, completed a standardized internalized stigma scale, discussed experiences of internalized stigma, and were instructed to take 3-10 pictures that captured stigma. In Session 2, PLWH discussed the pictures and their meaning. In Session 3, PLWH expanded on what they shared in previous sessions in a one-on-one interview. Thematic analysis captured key patterns of how PLWH experienced stigma.ResultsForty-seven PLWH attended Session 1 and were issued a camera. Of those, 35 completed sessions 2 and 3. Participants self-identified as cis man who has sex with men (n = 18), ciswoman (n = 5), transwoman (n = 10), and non-binary (n = 2). Four emergent themes intersecting with internalizations of stigma were identified including: medical, social support, church, and self.ConclusionsThe SOS intervention created a safe space for PLWH to share lived experiences of stigmatization. Photovoice facilitated discussion topics ranging from healing and recovery to overcoming factors of social determinants of HIV. We identified trauma-informed growth as an area of future programs for PLWH.
| S-EPMC9208191 | biostudies-literature
Project description:IntroductionThe mainstay of leprosy treatment is multidrug treatment (MDT), which contains rifampicin, dapsone and clofazimine. The occurrence of dapsone hypersensitivity syndrome (DHS), a sudden, potentially fatal and traumatic adverse reaction due to dapsone, may affect treatment adherence and may result in fatality if untreated. Before MDT administration, screening for HLA-B*13:01 in patients with leprosy can potentially reduce DHS risk. The study aims to assess the effectiveness of using a screening test for HLA-B*13:01 in reducing the incidence of DHS and to evaluate the feasibility of using the quantitative PCR-based screening tool as DHS predictors before dapsone administration using individual patient testing in a referral centralised-lab model.Methods and analysisA total of 310 newly diagnosed patients with leprosy will be recruited from health centres in two highly endemic districts in Indonesia. Dried blood will be taken on filter paper as the specimen receptacle to collect DNA from the patients and transported at room temperature to the leprosy referral laboratory before MDT administration. Checking for HLA-B*13:01 from human DNA is performed using the Nala PGx 1301 V.1 kit. The results will be shared with the leprosy health workers on the site via phone call and courier. Patients with a positive test result will be treated with MDT without dapsone, and patients with a negative result will be treated with complete MDT. Physical examination (weight, height, skin, muscle and nerve function examination), complete blood tests (including renal function test) will be carried out at baseline. Follow-up will be performed at the fourth and eighth weeks to observe any development of adverse drug reactions.Ethics and disseminationThe ethical approval for the study was issued by the Ethical Committee of the National Institute of Health Research and Development, Ministry of Health, Indonesia. Written informed consent will be sought from all participants.
| S-EPMC9096541 | biostudies-literature
Project description:BackgroundSevere acute malnutrition (SAM) is the most life-threatening form of malnutrition, and in 2019, approximately 14.3 million children under the age of 5 were considered to have SAM. The prevalence of child malnutrition is recorded through large-scale household surveys run at multi-year intervals. However, these surveys are expensive, yield estimates with high levels of aggregation, are run over large time intervals, and may show gaps in area coverage. Geospatial modelling approaches could address some of these challenges by combining geo-located survey data with geospatial data to produce mapped estimates that predict malnutrition risk in both surveyed and non-surveyed areas.MethodsA secondary analysis of cluster-level program evaluation data (n = 123 primary sampling units) was performed to map severe acute malnutrition (SAM) in Papuan children under 2 years (0-23 months) of age with a spatial resolution of 1 × 1 km in Papua, Indonesia. The approach used Bayesian geostatistical modelling techniques and publicly available geospatial data layers.ResultsIn Papua, Indonesia, SAM was predicted in geostatistical models by using six geospatial covariates related primarily to conditions of remoteness and inaccessibility. The predicted 1-km spatial resolution maps of SAM showed substantial spatial variation across the province. By combining the predicted rates of SAM with estimates of the population under 2 years of age, the prevalence of SAM in late 2018 was estimated to be around 15,000 children (95% CI 10,209-26,252). Further tests of the predicted levels suggested that in most areas of Papua, more than 5% of Papuan children under 2 years of age had SAM, while three districts likely had more than 15% of children with SAM.ConclusionsEradication of hunger and malnutrition remains a key development goal, and more spatially detailed data can guide efficient intervention strategies. The application of additional household survey datasets in geostatistical models is one way to improve the monitoring and timely estimation of populations at risk of malnutrition. Importantly, geospatial mapping can yield insights for both surveyed and non-surveyed areas and can be applied in low-income country contexts where data is scarce and data collection is expensive or regions are inaccessible.
| S-EPMC8842923 | biostudies-literature
Project description:BackgroundThere has been limited research on college campus' green spaces and their benefits to students. This study aimed to identify relationships between a Texas campus's green spaces and students' knowledge of their health benefits and their perception of their health compared to the campus' indoor built environments.MethodsPhotovoice was utilized to answer this study's research questions. Participants were instructed to take a photograph inside a building on campus and one outdoors anywhere on campus. Participants answered a questionnaire containing health-related questions, demographics, and nature relationship questions. Additionally, there was an in-class analysis and discussion to characterize overarching themes, knowledge, and evoked emotions. Frequencies, percentages, and a paired t-test were utilized to investigate the hypothesis that through the application of photovoice, participants would display more knowledge of nature's health benefits and a better perception of areas providing emotional, mental, physical, and social health benefits when in these green spaces compared to the indoor built environments on campus.Results122 students took photographs and answered the questionnaire. 91 students participated in the in-class discussion. Most students felt more positive (80%) and perceived better health with their outdoor location compared to their indoor. They also responded higher to having more positive overall health benefits (63%) outdoors than indoors.ConclusionsThese findings further solidified nature improves overall mood, there is a positive relationship between health and nature, and people are aware of it. Future studies should attempt to identify barriers accessing campus green spaces and develop interventions to encourage students to utilize these spaces.
| S-EPMC10722688 | biostudies-literature
Project description:In urbanized societies that are increasingly disconnected from nature, communicating ecological and species awareness is crucial to revert the global environmental crisis. However, our understanding of the effectiveness of this process is limited. We present a framework for describing how such awareness may be transferred and test it on the popular BBC show Planet Earth 2 by analyzing Twitter and Wikipedia big data activity. Despite lacking explicit conservation themes, this show generated species awareness, stimulating audience engagement for information at magnitudes comparable to those achieved by other conservation-focused campaigns. Results suggest that natural history films can provide vicarious connections to nature and can generate durable shifts in audience awareness beyond the broadcast of the show-key factors for changing environmental attitudes. More broadly, this study underscores how open-source big data analysis can inform effective dissemination of ecological awareness and provides a framework for future research for investigating behavioral change.
| S-EPMC7074017 | biostudies-literature
Project description:PurposeOral cancer is an underestimated health problem, and its existence and the relevant prevention measures are not sufficiently known by the general population. The project thus aimed to develop, implement and evaluate an oral cancer campaign in Northern Germany, and to increase problem awareness on various levels: draw public attention to the tumour by media coverage increase awareness of early detection opportunities for the target group, and raise awareness of carrying out early detection measures by the professional groups involved.MethodsFor each level, a campaign concept was developed and documented in terms of content and timing. The identified target group was elderly educationally disadvantaged male citizens ≥ 50 years. The evaluation concept for each level included pre-, post- and process evaluations.ResultsThe campaign was carried out from April 2012 to December 2014. The issue of awareness within the target group was significantly increased. Media coverage showed that regional media adopted the topic of oral cancer and placed it on their published agenda. Furthermore, the continuous involvement of the professional groups over the course of the campaign led to an increased awareness of oral cancer.ConclusionThe development of the campaign concept with a comprehensive evaluation showed that the target group was successfully reached. The campaign was adapted to the required target group and specific conditions, and was also designed to be context sensitive. It is, therefore, recommended that the development and implementation of an oral cancer campaign on a national level be discussed.
| S-EPMC10374765 | biostudies-literature
Project description:BackgroundInterpretation of Leprosy as a sickness differs among society. The set of beliefs, knowledge and perceptions towards a disease play a vital role in the construction of stigma towards a disease. The main purpose of this study was to explore the extent and correlates of the perceived stigma towards leprosy in the community living close to the leprosy colony in Non Somboon region of Khon Kaen Province of Thailand.MethodsA cross-sectional study was conducted among 257 leprosy unaffected community participants, above the age of 18 who were living close to the Leprosy colony in Non Somboon region of Thailand. Each participant was asked a questionnaire containing characteristics of the participants in terms of socio-demographic background and knowledge regarding the disease. In addition perceived stigma towards leprosy was measured using EMIC (Explanatory Model Interview Catalogue) questionnaire.ResultsAmong EMIC items, shame or embarrassment in the community due to leprosy was felt by 54.5%, dislike to buy food from leprosy affected persons were 49.8% and difficulty to find work for leprosy affected persons were perceived by 47.1%. Higher total EMIC score was found in participants age 61 years or older (p = 0.021), staying longer in the community (p = 0.005), attending fewer years of education (p = 0.024) and who were unemployed (p = 0.08). Similarly, perceptions about leprosy such as difficult to treat (p = 0.015), severe disease (p = 0.004) and punishment by God (p = 0.011) were significantly associated with higher perceived stigma.ConclusionsPerceived stigma towards leprosy was found highest among participants with age 61 years or older, longer duration of stay in community close to the leprosy colony, lower duration of education and participants who were unemployed had higher perceived stigma. Similarly, participants with perceptions of leprosy such as difficult to treat, severe disease and punishment by God had higher perceived stigma towards leprosy. There is an urgent need of stigma reduction strategies focused on education and awareness concerning leprosy.
| S-EPMC4457619 | biostudies-literature
Project description:Stigmatisation is a major issue faced by those affected by leprosy globally. Reducing stigmatisation encourages care seeking behaviour to occur earlier and can help reduce harm and spread of leprosy. This systematic literature review aimed to summarise what effective stigma reducing interventions exist for leprosy, and as a secondary question explore what evidence exists regarding their cost. A systematic literature review was conducted. Three databases-PubMed, Embase and Web of science-were searched using the search terms "leprosy", "interven*", "reduc*", and "stigma*".Seventeen publications were eligible for inclusion in the review. The current manuscript identified interventions under 6 main categories (i) Information, education, and communication (IEC) (ii) community led projects, (iii) Socioeconomic rehabilitation, (iv) mixed interventions, (v) integration of leprosy within the health system and (vi) Cosmetic or surgical care. Specific evidence regarding cost was only provided by one out of the seventeen papers. Multiple interventions were shown to successfully reduce leprosy related stigma, however, information on their cost is not readily available. The evidence uncovered by this review is restricted to three Asian countries; Nepal, India and Indonesia. To ensure the success of stigma reduction in leprosy interventions worldwide these interventions need to be tried in other leprosy endemic areas to test their effectiveness across contextual and cultural scenarios.
| S-EPMC11340997 | biostudies-literature