Endline assessment of knowledge about sickle cell disease among the tribal community of Chhotaudepur district of Gujarat.

Sickle cell disease (SCD) is a significant public health concern in India, with one of the highest disability burdens worldwide. For the success of the disease prevention and control program that aims to reduce prevalence through health promotion and screening, the public's prior knowledge of the disease is important. Hence, this study was conducted to assess baseline knowledge of the disease and effects of health education and community mobilization program in the SCD endemic tribal community of Gujarat. This quasi-experimental study was conducted in three phases at Chhotaudepur district of Gujarat, India. Knowledge of the community was assessed through the administration of pretested quantitative questionnaire in 1646 and 1631 individuals respectively during formative and evaluation phases. Differences between the proportions of two phases were statistically assessed by chi-square tests. Despite 75.3% of respondents having heard of SCD before, only 20% could perceive the correct cause. It was improved by 42% post-intervention. During the evaluation, 83% respondents recognized the most common symptom of extreme pain, whereas 86.8% identified the correct diagnostic method. Seventy-seven percent respondents reported modern medicine as a treatment for SCD at endline. Knowledge and awareness about SCD were found inadequate in the community. However, health education intervention strategies effectively improved knowledge related to the disease and its causes, diagnosis, and treatment. Hence, urgent action is required to incorporate community mobilization and awareness generation strategies to mitigate the disease burden.

Stigma of sickle cell disease among Indian tribal population: A multi-centric qualitative study.

BACKGROUND: Sickle Cell Disease (SCD) is the most prevalent hemoglobinopathy, impacting around 5% of the global population. The Indian tribal population, which has been a key focus of the Indian SCD program, can experience health-related stigma due to the multidimensional impact of the disease. This preliminary qualitative inquiry delves into the lived experiences of individuals and synthesizes domains to identify the sources of stigma. METHODOLOGY: The study's framework for developing the stigma tool was rooted in Bronfenbrenner's Ecology of Human Development. The study was implemented in five tribal-dominated districts of India and involved in-depth interviews with sickle cell disease (SCD) patients and their caregivers to explore their stigmatizing experiences. RESULTS: The analysis revealed four overarching themes and several subthemes explaining the type of stigma, its source, and factors contributing to stigmatization. First, the study focused on elements associated with perceived stigma, such as disclosure, self-isolation/refusal to participate, and self-judgment. The second theme pertained to the internalization of stigma. The third theme addressed experienced stigma concerning the disease's impact on day-to-day events, and the fourth theme explored the support system patients needed. The framework highlighted the varying degrees of stigmatizing components within different aspects of patients' ecology. CONCLUSION: Our study highlights the importance of addressing stigma at various levels. Policies, programs, and healthcare interventions must target stigma across these levels. Culturally adaptive tools for identifying stigma, implementing appropriate interventions, and improving healthcare participation are essential for enhancing the quality of life and reducing the disease burden.

Indian sickle cell disease registry for surveillance and patient management: Development and implementation.

In India, sickle cell disease (SCD) predominantly occurs in indigenous (tribal) people, who are about 104 million. However, screening and diagnosis seldom happen. This situation necessitates developing a comprehensive SCD care model, including a registry. This paper describes the development and implementation of the Indian SCD registry (ISCDR) in six tribal-dominated districts of India. The ISCDR was created in two components-(i) an Android-based mobile/tablet application, (ii) a dashboard/admin panel for patients' data management and retrieval. Data capture involves two electronic case report forms (CRF), that is, the primary form (CRF-1) and the repeat visit form (CRF-2). CRF-1 is completed as soon as the patient is found positive and captures the patient's information, including medical history, diagnosis, symptoms, precipitating factors, hospitalisation history and treatment received. Issues related to quality, security and data-sharing were addressed. After the screening system was functional, ISCDR was initiated. In 12 months, data of 324 SCD patients and 1771 carriers were entered. The study demonstrates the feasibility of establishing an SCD registry in India. It collects systematic longitudinal data on SCD patients, which are essential for programme planning and management. Further, it is feasible to scale up and integrate with other health management databases.

Feasibility of population-based screening of sickle cell disease through the primary health care system in tribal areas of India.

OBJECTIVE: To describe the development and implementation of a population-based screening programme for sickle cell disease (SCD) implemented in 12 SCD-endemic and tribal-dominated primary/community health centres (PHCs/CHCs) across six districts of India. SETTING: India reports a huge burden of SCD, especially among indigenous (tribal) communities. However, there is no state-led SCD programme in many places, and systematic screening is absent. This situation necessitates developing a model of population screening. METHODS: This programme was meant to screen all people and was carried out in three tiers. The first tier was a symptomatic survey carried out by community health workers. Regular health workers then screened those referred by sickle cell solubility test at sub-health centres as the second tier. The third tier was confirmation by haemoglobin electrophoresis at PHCs/CHCs. Communities were mobilised and prepared to accept the screening. Capacity building of health facilities was ensured through training and supply of equipment and material. RESULTS: Initial observation based on six months' data revealed that out of the 110,754 tribal population of 12 PHCs/CHCs, 8418 (7.6%) were identified in the symptomatic survey. Subsequently, 9416 people, including the above 8418, underwent the solubility test, and 2607 (27.7%) were found to be positive. Of these, 1978 (78.9%) underwent electrophoresis. About 64.2% were found to be positive for sickle haemoglobin (233 (18.4%) SCD and 1036 (81.6%) SCD trait). CONCLUSIONS: The study demonstrates the feasibility of establishing a population-based screening programme in the primary health care system. It is easy to implement in tribal habitations as part of the proposed national SCD/haemoglobinopathies programme.

Strengthening Health System and Community Mobilization for Sickle Cell Disease Screening and Management among Tribal Populations in India: An Interventional Study.

Sickle cell disease (SCD) affects 5% of the global population, with over 300,000 infants born yearly. In India, 73% of those with the sickle hemoglobin gene belong to indigenous tribes in remote regions lacking proper healthcare. Despite the prevalence of SCD, India lacked state-led public health programs until recently, leaving a gap in screening and comprehensive care. Hence, the Indian Council of Medical Research conducted implementation research to address this gap. This paper discusses the development and impact of the program, including screening and treatment coverage for SCD in tribal areas. With a quasi-experimental design, this study was conducted in six tribal-dominated districts in three phases - formative, intervention, and evaluation. The intervention included advocacy, partnership building, building the health system's capacity and community mobilization, and enabling the health systems to screen and manage SCD patients. The capacity building included improving healthcare workers' skills through training and infrastructure development of primary healthcare (PHC) facilities. The impact of the intervention is visible in terms of people's participation (54%, 76% and 93% of the participants participated in some intervention activities, underwent symptomatic screening and demanded the continuity of the program, respectively), and improvement in SCD-related knowledge of the community and health workers (with more than 50% of net change in many of the knowledge-related outcomes). By developing screening and treatment models, this intervention model demonstrated the feasibility of SCD care at the PHC level in remote rural areas. This accessible approach allows the tribal population in India to routinely seek SCD care at their local PHCs, offering great convenience. Nevertheless, additional research employing rigorous methodology is required to fine-tune the model. National SCD program may adopt this model, specifically for community-level screening and management of SCD in remote and rural areas.

Sickle cell disease-related knowledge and perceptions of traditional healers in tribal communities in India: implications on sickle cell disease programme.

Sickle cell disease (SCD) is a progressively debilitating genetic disease, and India is the second most affected nation in the prevalence of births with SCD. This SCD prevalence is high among Indian indigenous tribal communities, whose healthcare is pluralistic. Traditional healers are an essential part of tribal pluralistic care. This study aimed to understand the extent of SCD-related knowledge and practices of traditional healers and their willingness to participate in the SCD programme, which is primarily meant to screen and treat SCD. Following the grounded theory approach, data were collected by in-depth interviews with 40 traditional healers selected from five SCD endemic districts. Text data were coded through a deductive approach, and thematic content analysis was carried out. A few healers knew about SCD. However, almost all are aware of anaemia and its symptoms. Most healers were unaware of the cause of SCD and mentioned that malnutrition and anaemia are reasons for the recurrence of SCD-related symptoms. Most of the traditional healers did not give any treatment. Some gave symptomatic treatment and provided herbal medicines along with some rituals. Though some healers treated some of the typical symptoms of SCD like spleen enlargement, jaundice, swelling and pains in joints, they did not link them with SCD. All traditional healers expressed concern and said they support the government-run SCD programme. The programme should recognise the role and importance of traditional healers. Necessary education on SCD may be given to the healers. Such involvement and education empower the healers in appropriately guiding the people concerning SCD care.

Peripheral health workers' knowledge and experience related to sickle cell disease: an in-depth interview study in six tribal-dominated districts of India.

This study reports the extent of sickle cell disease (SCD)-related knowledge and management practices of peripheral health workers located in tribal areas of India. This formative qualitative study used a grounded theory approach and collected data through in-depth interviews. It was implemented in six districts endemic to SCD. From each district, four primary health centre (PHC) areas, predominantly inhabited by tribal communities, were included. The participants were 120 peripheral health workers, in two categories-regular health workers (RHWs) and community health workers (CHWs), working in 24 PHCs. Most of the RHWs and a little lesser number of CHWs were aware of SCD, and most of them knew it as a blood disorder. About half of the health workers reported that SCD is hereditary; however, some attributed it to malnutrition and considered it anaemia. Many health workers could tell some typical symptoms of SCD, including anaemia and severe pain. None of the PHCs offered management/treatment of SCD. And none of the health workers has any expertise in managing SCD patients. However, some health workers dealt with SCD cases and provided symptomatic treatment. Though several health workers said that SCD is preventable, comprehensive knowledge on prevention was lacking. Some health workers mentioned mass screening, counselling, and creating awareness. Thus, this paper reports the inadequacy of SCD-related knowledge and management practices among health workers. Health workers should know their roles and capabilities in managing SCD. They should be provided in-service, regular, and structured training programmes as part of the comprehensive SCD programme.

Inadequate community knowledge about sickle cell disease among the Indian tribal population: a formative assessment in a multicentric intervention study.

BACKGROUND: Sickle cell disease (SCD) is a serious public health problem, with >300 000 affected births worldwide each year. About 73% of the SCD-affected people in India belong to the tribal population. The Government of India is planning to implement a programme for SCD and hence people's knowledge of SCD is crucial. This paper reports the SCD-related knowledge among the Indian tribal population. METHODS: As part of a formative assessment before an intervention, data were collected from 9837 adults from 24 primary health centre areas of six states. Each community's knowledge of SCD was elicited through an interviewer-administered pretested questionnaire. Univariate and multivariate analyses were conducted. RESULTS: Overall, 32.1% (CI 31.2 to 33.1%) of participants had heard of SCD, 7.9% (CI: 7.3 to 8.4%) knew that SCD is hereditary, 19.4% (CI: 18.7 to 20.3%) knew that a blood test can diagnose SCD and 23.9% (CI: 23.1 to 24.8%) knew that SCD is treatable. Only 13.1% (CI: 12.4 to 13.8%) knew that SCD can be prevented. No more than 16% knew about any SCD symptoms. Multiple logistic regression revealed some predictors of basic knowledge (i.e. had heard of SCD). CONCLUSIONS: There is a gross inadequacy of knowledge about SCD in the Indian tribal population. This study warrants implementing a health education programme as a part of the SCD programme.

Improving the Capacity of Health System and Community for Sickle Cell Disease Screening and Management Among Tribal Population in India: Protocol of an Intervention Study.

Sickle cell disease (SCD) is one of the major public health problems in the world. In India, the burden of SCD is comparatively high in socio-economically disadvantaged tribal communities. Though efficacious interventions are available to manage SCD, they are not reaching to these communities and no comprehensive programme is in place in the health care system. Therefore, the Indian Council of Medical Research has initiated a nation-wide study to develop an effective intervention model for SCD patients in tribal areas through the government health care system. This intervention includes increasing awareness and preparing the communities for accessing the government health care system for SCD care, and improving the capacity of the primary health care systems including the training of the health care providers on prevention and management of SCD. The study adopted a quasi-experimental design with pre-vs. post-intervention comparisons of outcome variables within the interventional groups and with the control group. The study will be implemented in 6 districts which are endemic for SCD, spread across different geographical zones of India. In each district, four primary health centre (PHC) areas which are predominantly inhabited by tribal population will be selected. Of these four PHC areas, two will be selected randomly for implementing the intervention and the remaining two will be the control area. Information necessary for development and implementation of the intervention will be gathered during formative research, by using both quantitative and qualitative research methods. Intervention with an inclusive partnership and community mobilization will be implemented. The major steps in the implementation of intervention are partnership building with various health and non-health partners including the community. Capacity building and strengthening is another important component to enable the primary health facilities to screen and manage SCD patients. Primarily, sub-health centres and primary healthcare centres will be equipped with appropriate SCD screening techniques. All doctors in the system will be trained in advanced treatment and management issues. To improve the community's awareness and readiness, community mobilization activities will be conducted. An impact evaluation will be carried out at the end of the intervention by comparing the improvement of SCD management in intervention PHCs to that of the control PHCs. However, the process evaluation and necessary mid-term corrections will be made throughout the intervention period. Thus, an intervention model in terms of its suitability, replicability and sustainability for the tribal population will be developed and tested. The findings of this study are more suitable to use during advocacy and to replicate the model by the state health departments. This study develops and places an appropriate referral system for SCD patients at the PHC level. Improving the community's access to health care, improving the quality of care in government health centres and raising awareness among tribal communities are crucial to achieving through innovation. Taken together, these innovations would significantly contribute to better access to health care and management of the SCD patients of underserved tribal population.

Rapid Response to Syphilis Outbreak among Female Sex Workers.

BACKGROUND: Outbreak of syphilis, i.e., 16 cases of rapid plasma reagin (RPR) reactive cases of syphilis was reported in Community Based Organization (CBO) Sahyog of Surat, India, from April to August 2014. The aim of the study was to find risk factors and take immediate actions to prevent spread. MATERIALS AND METHODS: Outbreak investigation of 16 Female Sex Workers of CBO Sahyog in Surat who were found Rapid Plasma Reagin (RPR) and Treponema Pallidum Hemagglutination Assay (TPHA) positive from April to August 2014; was carried out. Clinico-epidemiological and laboratory-based evidence for different sexually transmitted infections (STIs) conducted at Government Medical College, New Civil Hospital, Surat. Root cause analysis (RCA) of index case was carried out. RESULTS: Desk review for the past 3 years data of STI revealed total STI cases as 88 (2011), 95 (2012), and 130 (2013), of which 4, 2, and 2 found RPR reactive, respectively. Data from April to August 2014 revealed 16 RPR reactive cases and confirmed by TPHA. On examination, one had ulcerative cervical lesion, rest did not have any symptoms of syphilis. Eleven had vaginal/cervical discharge, 11 had lower abdominal pain. A total of 11 had unprotected sex, 7 encountered condom tear in the past 6 months, and 5 reported sexual violence. Seven had sexual activity under influence of alcohol. Laboratory investigation revealed two as HIV-positive. RPR reactivity reported highest (9 out of 16) from same area of hotspot. RCA of probable index case revealed factors responsible as violence and nonuse of condoms. CONCLUSIONS: Outbreak investigation revealed one probable index case. All 16 treated with injection Penidure. Violence or condom tear is responsible for the spread. Crisis management team should be strengthened.