Understanding Stigmatisation: Results of a Qualitative Formative Study with Adolescents and Adults in DR Congo

While stigmatisation is universal, stigma research in low- and middle-income countries (LMIC) is limited. LMIC stigma research predominantly concerns health-related stigma, primarily regarding HIV/AIDS or mental illness from an adult perspective. While there are commonalities in stigmatisation, there are also contextual differences. The aim of this study in DR Congo (DRC), as a formative part in the development of a common stigma reduction intervention, was to gain insight into the commonalities and differences of stigma drivers (triggers of stigmatisation), facilitators (factors positively or negatively influencing stigmatisation), and manifestations (practices and experiences of stigmatisation) with regard to three populations: unmarried mothers, children formerly associated with armed forces and groups (CAAFAG), and an indigenous population. Group exercises, in which participants reacted to statements and substantiated their reactions, were held with the ‘general population’ (15 exercises, n = 70) and ‘populations experiencing stigma’ (10 exercises, n = 48). Data was transcribed and translated, and coded in Nvivo12. We conducted framework analysis. There were two drivers mentioned across the three populations: perceived danger was the most prominent driver, followed by perceived low value of the population experiencing stigma. There were five shared facilitators, with livelihood and personal benefit the most comparable across the populations. Connection to family or leaders received mixed reactions. If unmarried mothers and CAAFAG were perceived to have taken advice from the general population and changed their stereotyped behaviour this also featured as a facilitator. Stigma manifested itself for the three populations at family, community, leaders and services level, with participation restrictions, differential treatment, anticipated stigma and feelings of scapegoating. Stereotyping was common, with different stereotypes regarding the three populations. Although stigmatisation was persistent, positive interactions between the general population and populations experiencing stigma were shared as well. This study demonstrated utility of a health-related stigma and discrimination framework and a participatory exercise for understanding non-health related stigmatisation. Results are consistent with other studies regarding these populations in other contexts. This study identified commonalities between drivers, facilitators and manifestations—albeit with population-specific factors. Contextual information seems helpful in proposing strategy components for stigma reduction

Reducing stigma impacting children and adolescents in low- and middle-income countries:The development of a common multi-component stigma reduction intervention

Introduction Stigmatisation impedes health and quality of life. Evidence regarding stigma reduction interventions is, albeit growing, limited. There is a gap in the availability and evidence of interventions for reducing stigma among children and adolescents, especially in low- and middle-income countries. This paper describes the process that led to a stigma reduction intervention impacting children and adolescents in low- and middle-income countries, following previously conducted formative research. Methods In this study, we conducted (i) online stakeholder consultations (FGD) (n = 43), including a survey assessing intervention acceptability, appropriateness, feasibility and scalability (n = 16); and (ii) preliminary field-testing of intervention content online and in a refugee settlement in Uganda. Findings Stakeholder consultation showed the initial version of STRETCH (Stigma Reduction to Trigger Change for Children), albeit positively received, required adaptations. We made adjustments to i) take into account implementation duration, intervention flexibility and intersectionality; (ii) strengthen the involvement of individuals, including adolescents/youth, with lived stigma experience; (iii) target people close to individuals with lived stigma experience; and (iv) address feasibility and sustainability concerns. Preliminary field-testing simplified STRETCH while adding a community outreach component and revisiting the intervention setup, to ensure STRETCH can also be applied from a modular perspective. Conclusion We conducted a process to develop a child-focused multi-component stigma reduction intervention, with intended applicability across stigmas and settings. This paper provides an overview of the intervention development process, generating intervention-specific learnings with generic value. STRETCH aims to reduce stigmatisation at the implementing organisation, create community-wide reflection and stigma reduction demand, and reduce stigmatisation among various target groups.</p

Experiences of living with leprosy: A systematic review and qualitative evidence synthesis

OBJECTIVE: The objective of the review was to identify, appraise, and synthesise qualitative studies on the lived experience of individuals diagnosed with leprosy, the impact of the disease, and how they coped with the disease burden. INTRODUCTION: Leprosy is a chronic disease with long-term biopsychosocial impact and is a leading cause of preventable disabilities. It traps the individuals with leprosy in a vicious circle of disease, stigma, and poverty. The efforts to reduce stigma and discrimination and improve their quality of life have not kept pace with the success of the multidrug treatment. INCLUSION CRITERIA: This review considered published literature on the lived experience of individuals diagnosed with leprosy. There were no limitations on gender, background, or country. All qualitative or mixed-methods studies were accepted. METHODS: The review followed the JBI meta-aggregation approach for qualitative systematic reviews. A structured literature search was undertaken using multiple electronic databases: PubMed, Embase, Web of Science, and CINAHL. RESULTS: The search identified 723 publications, and there were 446 articles after deduplication. Forty-nine studies met the inclusion criteria. The final 173 findings were synthesised into ten categories and aggregated into four synthesised findings: biophysical impact, social impact, economic impact, and mental and emotional impact. These synthesised findings were consistent across the included studies from a patient's perspective. The way people coped with leprosy depended on their interpretation of the disease and its treatment. It affected their help-seeking behaviour and their adherence to treatment and self-care. The review has identified a multi-domain effect on the affected individuals, which goes beyond the biological and physical effects, looking at the social issues, specific difficulties, emotions, and economic hardships. CONCLUSIONS: The researchers, health professionals, and policymakers could use the synthesised findings to address the concerns and needs of the leprosy-affected individuals and offer appropriate support to manage their lives. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO Registration number: CRD42021243223

Non-communicable diseases-related stigma:A mixed-methods systematic review

This systematic review examines and consolidates existing evidence on stigma associated with the top four non-communicable diseases (NCDs)—cancers, cardiovascular diseases, chronic respiratory diseases, and diabetes—and its impact on the lives of people affected. We conducted a systematic literature search in PubMed, PsycINFO, JSTOR, Science Direct, and Web of Science for original research in English that explored health-related stigma among people living with either of the four NCDs. A three-step integrative synthesis of data was conducted. Twenty-six articles (qualitative = 15; quantitative = 11) were selected, with most (n = 15) related to cancers, followed by diabetes (n = 7), chronic respiratory diseases (n = 3), and cardiovascular diseases (n = 1). Blame, shame, and fear were the main causes of stigma, the origin and nature of which differed according to the disease-specific features. The manifestations (enacted and felt stigma) and consequences (social, behavioral, psychological, and medical) of stigma across NCDs were similar. Inconsistencies existed in the conceptualization of stigma processes. To fill this gap, we developed an NCD-related stigma framework. People living with NCDs can experience stigma, which can negatively impact their health, management of their disease, and quality of life. The new framework can help in improving the understanding of the processes and experiences of stigma related to NCDs

How do Positive Deviants Overcome Health-Related Stigma? An Exploration of Development of Positive Deviance Among People With Stigmatized Health Conditions in Indonesia

A constructivist grounded theory approach was used to understand how some people living with stigmatized health conditions develop positive deviance to overcome stigma. We examined interviews from 13 identified positive deviants living with four different stigmatized health conditions (HIV, leprosy, schizophrenia, and diabetes) in Indonesia. Positive deviance develops in the form of psychological empowerment through improvement of self-belief and perception (intrapersonal component), development of understanding and skill to exert control in life (interactional component), and self-discovery of successful behaviors and strategies to avert stigma (behavioral component). Positive deviants, after being empowered, start empowering others affected by sharing their knowledge and fostering social awareness and acceptance. The findings revealed the presence of problem-solving ability and agency within the community of stigmatized individuals in Indonesia and warrant researchers to partner with the community to expedite the diffusion of transferable positive deviant strategies within and outside the communities

The influence of leprosy and other disabilities on marital relationships and sexual health among married women in Indonesia: A qualitative study into experiences and coping

Objective: This study aims to increase the understanding of ways in which leprosy and other disabilities may impact the marital relationships and sexual health of married women living in Tegal regency, Indonesia. Method: We used a cross-sectional comparative study design with a qualitative approach. Three groups of married women were interviewed in-depth: (1) women affected by leprosy, (2) women without leprosy, but with physical disabilities, and (3) women without leprosy or disabilities (a control group). The ABC-X Model of family stress and coping was used to develop the interview guide and to analyse the data. The data were analysed by two independent researchers by means of deductive thematic analysis. Results Twenty-four women participated in the study. Most women in all groups had positive experiences regarding their marital relationships and support received from their husbands. Negative (physical) effects of leprosy on sexual health were present: over half of the women said they were reluctant to have sexual intercourse, either because they felt unwell because of their condition or because they were afraid of infecting their husband. It appeared that leprosy-affected women were more dissatisfied with their sexual health compared to the other two groups. Coping strategies to deal with difficulties in the marital relationship included silence, venting, religion, positive thinking, humour and acceptance. Conclusions Most participants perceived their marital relationship as satisfactory. However, findings from this study show leprosy can negatively impact sexual health. The results point to a compelling need to develop interventions to address sexual health of persons affected by leprosy in Indonesia

Meaningful Engagement of Persons Affected by Leprosy in Research: An Exploration of Its Interpretation, Barriers, and Opportunities

Despite the growing interest in public and patient involvement in research, best practices in the leprosy context have yet to be explored. This mixed-method study aimed to explore the interpretation, barriers and opportunities of meaningful engagement of persons affected by leprosy in research through: (i) an exploratory phase consisting of key informant interviews with experts in public and patient involvement (n = 2) and experts-by-experience (i.e., persons affected by leprosy; n = 4), and (ii) an in-depth phase among leprosy researchers consisting of an online survey (n = 21) and key informant interviews (n = 7). Qualitative data were thematically analyzed. Basic descriptive statistics were used to summarize the survey data. Key informant interviewees unanimously agreed to the importance of engagement in research. Survey results indicated that the level of engagement differed across research stages. Identified barriers included a lack of skills for or awareness of engagement among both experts-by-experience and researchers, stigma and limited time and resources. Opportunities included capacity strengthening, creating a shared understanding, building rapport, and establishing a safe environment. In conclusion, this exploratory study emphasized the importance of engagement of experts-by-experience in leprosy research and identified ways forward that include, but are not limited to, the acknowledgement of its value and creating a shared understanding

Qualitative Exploration of Experiences and Consequences of Health-related Stigma among Indonesians with HIV, Leprosy, Schizophrenia and Diabetes

Health-related stigma causes a negative impact on the lives of affected people and undermines the effectiveness of public health programs. This study aimedto explore experiences and consequences of stigma among people affected by four health conditions relevant in Indonesia– HIV (Human ImmunodeficiencyVirus), leprosy, schizophrenia and diabetes. In this qualitative study 40 people affected by the four health conditions in Jakarta and West Java, Indonesia–,were interviewed between March and June 2018. Data were analyzed thematically by following an integrative inductive-deductive approach. The experiencesand consequences of people with stigma were similar, but such experience were more severe among people affected by HIV, leprosy, and schizophrenia.Those with diabetes either experienced no or less severe stigma. The participants revealed that they experienced enacted stigma in healthcare, employment,and social interactions in the structural and interpersonal levels. They also experience the stigma in the form of internalized and anticipated stigma at an individual level. Incidences of human rights violations were evident. Social, behavioral, psychological, and medical consequences were also reported

Validation of a cross-NTD toolkit for assessment of NTD-related morbidity and disability. A cross-cultural qualitative validation of study instruments in Colombia

BACKGROUND: Many neglected tropical diseases (NTDs) are not fatal, but they are disabling, disfiguring and stigmatizing. More accurate data on these aspects would benefit planning, monitoring and evaluation of interventions, as well as provision of appropriate services for the often life-long consequences. In 2015, a cross-NTD toolkit was developed, consisting of a variety of existing questionnaires to measure morbidity, disability and health-related quality of life. The toolkit covers the domains of the International Classification of Functioning, Disability and Health (ICF) framework. These tools have been developed in a source country, however, it was intended for the cross-NTD toolkit to be applicable across NTDs in many countries with different cultures and languages in order to generate universally comparative data. Therefore; the present study aimed to validate several tools of the toolkit among people affected by leprosy or leishmaniasis in the cultural settings of Cartagena and Cúcuta, Colombia. METHODOLOGY: This study aimed to validate the following tools among 55 participants between 18-85 years old, affected by leprosy and leishmaniasis: (I) Clinical Profile, (II) Self-Reporting Questionnaire (SRQ), (III) WHO Quality of Life assessment-abbreviated version (WHOQOL-BREF), and (IV) WHO Quality of Life assessment-Disability (WHOQOL-DIS). The tools were administered during face-to-face interviews and were followed by open questions about the respondents' thoughts on format of the tool and the understanding, relevance and acceptability of the items. The tools were validated using a qualitative method approach based on the framework for cultural equivalence, measured by the cultural, item, semantic and operational equivalences. RESULTS: The Clinical Profile was seen as acceptable and relevant, only the semantic equivalence was not as satisfying and needs a few adaptations. The SRQ was very well understood and shows to reach the equivalences for the population of Colombia without any additional changes. Several items of the WHOQOL-BREF and the WHOQOL-DIS were not well understood and changes are recommended due to semantic difficulties. Operational equivalence of both questionnaires was not as desired in relation to the used response scales. The participants shared that the tools are relevant and important for their particular situation. CONCLUSIONS/SIGNIFICANCE: The SRQ is found to be a valid tool for Colombia and can be included in the cross-NTD toolkit. The Clinical Profile, WHOQOL-BREF & WHOQOL-DIS need changes and retesting among Colombian people affected by an NTD. The toolkit as a whole is seen as useful to show the effects leprosy and leishmaniasis have on the participants. This cultural validation will contribute to a universally applicable cross-NTD toolkit