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2.
Blood Cells Mol Dis ; 109: 102873, 2024 Jul 14.
Article in English | MEDLINE | ID: mdl-39024737

ABSTRACT

BACKGROUND: Sickle cell disease (SCD) registries provide crucial real-world data on demographics, epidemiology, healthcare, patient outcomes, and treatment efficacy. This paper presents findings from the Indian SCD Registry (ISCDR) on clinical manifestations, crisis episodes, disease management, and healthcare utilization in patients with SCD from 12 primary health centres (PHCs) in six tribal districts of India. METHODS: The ISCDR was introduced along with a three-tier screening process. Its Android-based application incorporates two electronic case report forms for patient data collection over one year. This paper presents a year's data from the ISCDR's 324 patients with SCD. RESULTS: Patients with SCD, aged one to 65 years, exhibited varied clinical manifestations. Most patients (85.2 %) were unaware of their SCD status before enrolling in ISCDR. Moderate to severe anaemia was prevalent (66.05 % and 30.56 %, respectively). Pain was a common complaint (80.86 %; CI: 76.17-85.00), while symptoms of stroke included sudden severe headaches (34.57 %; CI: 29.40-40.02). Common splenic sequestration symptoms included stomach pain (42.90 %; CI: 37.44-48.49) and abdominal tenderness (13.27 %; CI: 9.77-17.46), as a sign. Healthcare utilization was high, with 96.30 % receiving treatment and 83.64 % consuming hydroxyurea. Hospitalization occurred for 38.27 % (CI: 32.95-43.81), and 12.04 % (CI: 8.70-16.09) had blood transfusion during last year. CONCLUSIONS: ISCDR serves as a dynamic digital database on SCD epidemiology, clinical aspects, treatment and healthcare utilization. Notably, many patients lacked prior awareness of their SCD status, underscoring the need for improved awareness and care management. Integrating the registry into the national programme can streamline treatment implementation, prioritize management approaches, and optimize individual benefits.

3.
Article in English | MEDLINE | ID: mdl-38791837

ABSTRACT

Air pollution poses a significant health hazard in urban areas across the globe, with India being one of the most affected countries. This paper presents environmental monitoring study conducted in Jodhpur, Rajasthan, India, to assess air quality in diverse urban environments. The study involved continuous indoor and outdoor air quality monitoring, focusing on particulate matter (PM2.5) levels, bioaerosols, and associated meteorological parameters. Laser sensor-based low-cost air quality monitors were utilized to monitor air quality and Anderson 6-stage Cascade Impactor & Petri Dish methods for bioaerosol monitoring. The study revealed that PM2.5 levels were consistently high throughout the year, highlighting the severity of air pollution in the region. Notably, indoor PM2.5 levels were often higher than outdoor levels, challenging the common notion of staying indoors during peak pollution. The study explored the spatial and temporal diversity of air pollution across various land-use patterns within the city, emphasizing the need for tailored interventions in different urban areas. Additionally, bioaerosol assessments unveiled the presence of pathogenic organisms in indoor and outdoor environments, posing health risks to residents. These findings underscore the importance of addressing particulate matter and bioaerosols in air quality management strategies. Despite the study's valuable insights, limitations, such as using low-cost air quality sensors and the need for long-term data collection, are acknowledged. Nevertheless, this research contributes to a better understanding of urban air quality dynamics and the importance of public awareness in mitigating the adverse effects of air pollution. In conclusion, this study underscores the urgent need for effective air quality management strategies in urban areas. The findings provide valuable insights for policymakers and researchers striving to address air pollution in rapidly urbanizing regions.


Subject(s)
Air Pollutants , Air Pollution , Cities , Environmental Monitoring , Particulate Matter , India , Environmental Monitoring/methods , Environmental Monitoring/instrumentation , Particulate Matter/analysis , Air Pollutants/analysis , Air Pollution/analysis , Air Pollution, Indoor/analysis , Aerosols/analysis
4.
J Community Genet ; 15(2): 187-194, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38334932

ABSTRACT

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.

5.
J Natl Med Assoc ; 116(2 Pt 1): 153-164, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38290904

ABSTRACT

BACKGROUND: The perception among healthcare workers is that the Indian tribal (indigenous) population are less affected by diabetes. This paper reports the prevalence of type 2 diabetes and its associated factors among tribal populations from six districts across India. METHODOLOGY: Random blood glucose (RBG) and fasting blood glucose (FBG) were measured for 8486 and 3131 adults, respectively, with a glucose meter. FBG ≥ 126 mg/dL (7.0 mmol/L) and RBG ≥ 200 mg/dL (11.1 mmol/L) were used to diagnose diabetes. In addition, blood pressure, anthropometric (height, weight, waist and hip circumferences), socio-demographic (age, gender, education, type of tribe and type of village) and behavioural data (tobacco smoking, non-smoking tobacco use and alcohol consumption) were collected. RESULTS: The overall prevalence of type 2 diabetes, based on RBG, was 4.77% (95% CI: 4.33-5.25). The prevalence of type 2 diabetes and prediabetes, based on FBG, was 6.80% (95% CI: 5.95-7.74) and 8.69% (7.72-9.73), respectively. The prevalence of type 2 diabetes was significantly associated with age (p<0.001), smokeless tobacco use (p < 0.05), hypertension (p < 0.001) and obesity (p < 0.01). CONCLUSION: The prevalence of type 2 diabetes among the Indian tribal population reported in this study is less than the national average of 7.3% for the general population. Hypertension and obesity were the major risk factors. Due to changing behavioural patterns, including dietary behaviour, there is likely to be an increase in the prevalence of hypertension and obesity, which further leads to increased prevalence of type 2 diabetes. Hence, appropriate interventions are to be initiated by the primary healthcare system.


Subject(s)
Diabetes Mellitus, Type 2 , Hypertension , Adult , Humans , Diabetes Mellitus, Type 2/etiology , Diabetes Mellitus, Type 2/complications , Prevalence , Cross-Sectional Studies , Blood Glucose , Risk Factors , Obesity/epidemiology , Obesity/complications , Hypertension/epidemiology , Hypertension/complications
6.
J Racial Ethn Health Disparities ; 11(1): 451-467, 2024 Feb.
Article in English | MEDLINE | ID: mdl-36752902

ABSTRACT

Hypertension is a serious condition that significantly increases the risks of several cardiovascular diseases. An estimated 1.28 billion adults aged 30-79 years worldwide have hypertension, and two-thirds of them live in low- and middle-income countries. Indigenous (tribal) populations are not exceptional to the threat of hypertension. Hence, there is a need to highlight the rising prevalence of hypertension among Indian tribes and to bring them under health care programmes. This paper reports the systematic review and meta-analysis of the literature on the prevalence of hypertension among Indian tribes by following the PRISMA guidelines. Three databases, viz. PubMed/Medline, Google Scholar and Scopus, were included. The gender-wise pooled prevalences were calculated, and forest plots were depicted. Other analyses were performed, including heterogeneity test, meta-regression and sub-group analysis. Of the 1010 studies obtained, 42 were included in this review. These studies covered tribal populations in different regions of India. The pooled prevalence of hypertension among men, women and combined were 23.66% (95% confidence interval (CI): 23.25 to 24.07%), 23.37% (95% CI: 22.99 to 23.75%) and 16.68% (95% CI: 16.10 to 17.28%) respectively. Considerable heterogeneity was found among these studies. The situation of increasing prevalence, as evident from this review, is worrisome as the hypertension epidemic will affect the poor tribal communities that cannot afford to pay for treatment expenses. Therefore, people's access to public health services must be improved. This review discusses the recent initiatives to reduce the burden of hypertension and other noncommunicable diseases in India and highlights the need of implementation research to strengthen these initiatives.


Subject(s)
Cardiovascular Diseases , Hypertension , Adult , Male , Humans , Female , Prevalence , Hypertension/epidemiology , Asian People , India/epidemiology
7.
Eur J Obstet Gynecol Reprod Biol ; 292: 163-174, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38016417

ABSTRACT

OBJECTIVE: To report the utilisation of maternal healthcare services and factors associated with adequate antenatal care and institutional childbirths among mothers in the tribal communities from nine districts in India. METHODS: Cross-sectional data were collected from 2636 tribal women who had a childbirth experience in the past 12 months. Socio-demographic, maternal healthcare services and health system-related details were collected. Multiple logistic regression analyses were done to identify factors associated with adequate antenatal care (receiving at least four antenatal care visits, the first visit being in the first trimester and receiving a minimum of 100 iron-folic acid tablets) and institutional childbirth (mother giving birth in a health facility). RESULTS: Only 23% of the mothers received adequate antenatal care. 82% were institutional childbirths. The logistic regression revealed that particularly vulnerable tribal groups (PVTGs), those lacking all-weather roads, and women of advanced age were at risk of inadequate antenatal care. Mother's education, health worker's home visits during pregnancy and reception of advice on antenatal care were significantly associated with the reception of adequate antenatal care. Having all-weather roads, and education of the mother and head of the household were positively associated with institutional childbirths, whereas PVTGs, children of birth order three or above, and working mothers were more likely to give childbirth at home. CONCLUSION: PVTGs are at risk of foregoing adequate antenatal care and are more likely to give childbirth at home. Having all-weather roads is a strong correlate of adequate maternal care. Outreach activities by the health workers are to be strengthened as they are positively and significantly associated with the reception of adequate antenatal care. Investing in education and other social determinants and addressing certain socio-cultural practices is important to improve maternal health.


Subject(s)
Home Childbirth , Prenatal Care , Child , Female , Pregnancy , Humans , Cross-Sectional Studies , Health Services Accessibility , Patient Acceptance of Health Care , Health Facilities
8.
J Natl Med Assoc ; 115(6): 556-565, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37845145

ABSTRACT

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.


Subject(s)
Anemia, Sickle Cell , Quality of Life , Humans , Social Stigma , Anemia, Sickle Cell/epidemiology , Anemia, Sickle Cell/complications , Qualitative Research , Cost of Illness
9.
Article in English | MEDLINE | ID: mdl-37768536

ABSTRACT

The prevalence of hypertension is increasing in the tribal population of India. Lifestyle modifications, including dietary changes and acculturation, are the main reasons for the high prevalence of hypertension among the Indian indigenous (tribal) population. This paper reports hypertension prevalence, awareness, treatment, control and risk factors among tribes in five districts of different geographical zones of India. A cross-sectional study was conducted among the adult tribal population of 7590 from these states. Data related to blood pressure, anthropometry, demographic and behavioural variables were collected with prior consent from the participants. The prevalence of hypertension is 34.0% and 28.3% among men and women, respectively. Of the total hypertensives, 27.5% were aware of their hypertension status; of them, 83.9% were receiving treatment, and blood pressure was in control among 33.5% of patients who were receiving treatment. Age, alcohol intake, sedentary lifestyle, Particularly Vulnerable Tribal Groups status and body mass index are found to be significantly associated with the prevalence of hypertension. The prevalence of hypertension is high among these tribal populations, which could be due to modernization and acculturation. Awareness and treatment-seeking behaviour are poor. Hence, early screening, awareness campaigns for seeking treatment, and health promotion are immediately required. Comprehensive health promotion programs need to promote lifestyle modification and re-orientation of the primary health care system to improve availability and accessibility to hypertension screening and treatment.

10.
Cureus ; 15(5): e39390, 2023 May.
Article in English | MEDLINE | ID: mdl-37378110

ABSTRACT

OBJECTIVE: We aimed to report the pattern of road traffic injuries (RTIs) and pre-hospitalization factors of road traffic injuries among the accident victims reported at an urban and a rural healthcare facility in the Jaipur district, Rajasthan. METHODS: This cross-sectional study was conducted in a tertiary-level, urban public healthcare facility in Jaipur city and a secondary-level, rural private facility in nearby Chomu town. The study participants were all those who encountered road traffic injury and visited any of these healthcare facilities to seek care. The study tool included information on demographics, type of road user, vehicles, accidents, roads, environment, and other pre-hospitalization factors. Data collectors were nurses trained to collect data using the tablet-based application. Data were analyzed using proportions/percentages. Bivariate analysis was done to assess the significance of differences between categories of factors and between rural and urban facilities. RESULTS: Among 4,642 cases, 93.8% were enrolled in the urban facility, and the remaining were enrolled in the rural facility. Predominantly, males (83.9%) and young adults 18-34 years (58.9%) were reported in both study facilities. Among the accident victims reported at the urban facility, major groups were educated up to the primary level (25.1%) or graduate level (21.9%). About 60% of them were drivers. Most of these injuries occurred on urban roads (50.2%) or two-lane roads (42%). About three-fourths of the injured were using two-wheeler geared vehicles, and 46.7% were overtaking or turning the vehicle when the accident happened. The majority of cases (61.6%) did not require hospitalization. Among the rural facility participants, 27.2% were graduates, and 24.7% were below primary education. Most of these injuries happened on the national highway (35.8%) or rural roads (33.3%). Most of them used two-wheeler geared (80.1%) at the time of the accident. Most were injured while doing normal straight driving (80.5%). Most participants (80.1%) in the rural facility did not follow the traffic rules, and 43.9% required hospitalization. CONCLUSION: Young males were the most affected age group by road traffic injuries. Differential patterns of road traffic injuries and pre-hospital factors were observed in urban and rural areas.

11.
Int J Health Plann Manage ; 38(5): 1483-1494, 2023 Sep.
Article in English | MEDLINE | ID: mdl-37340519

ABSTRACT

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.


Subject(s)
Anemia, Sickle Cell , Humans , Anemia, Sickle Cell/diagnosis , Anemia, Sickle Cell/epidemiology , Anemia, Sickle Cell/therapy , Hospitalization , Registries , India/epidemiology
12.
Trop Med Int Health ; 28(7): 530-540, 2023 07.
Article in English | MEDLINE | ID: mdl-37246307

ABSTRACT

OBJECTIVE: To report on vaccination status by 12 months of age among tribal children from nine districts of India. METHODS: Cross-sectional study of 2631 tribal women having a child aged 12 months or below from nine Indian districts with a considerable proportion of the tribal population. Socio-demographic details, reception of various vaccines by 12 months of age, mother's antenatal care utilisation and health system-related details were collected through a pre-tested, interviewer-administered questionnaire from mothers. Multiple logistic regression analysis was used to identify the factors associated with complete vaccination by 12 months of age. RESULTS: Only 52% of children were fully vaccinated by the age of 12 months among the tribal populations; 11% did not receive any vaccine, and 37% of the tribal children received some vaccines. The age-appropriate vaccination was unsatisfactory as only 75% of the infants received all birth dose vaccines, and only 60.5% received all doses by 14 weeks. Only 73% were vaccinated against measles. Illness of the child, home births and communication gaps concerning vaccination were the main reasons for an infant not being vaccinated appropriately. Frequency of health worker's visits to the village, hospital birth, reception of advice on vaccination and educational status of the head of the households were significantly associated with full vaccination status. CONCLUSION: A relatively low proportion of children were fully vaccinated among the tribal populations. Health systems factors, mainly the outreach services and advice by the health workers, were positively and significantly associated with a child being fully vaccinated by 12 months of age. Improving outreach services is crucial to improve vaccination coverage in tribal areas, and there is a need to address the social determinants in the long run.


Subject(s)
Vaccination , Vaccines , Infant , Female , Child , Humans , Pregnancy , Cross-Sectional Studies , Vaccination Coverage , Mothers , Immunization Programs
13.
Ethn Health ; 28(4): 544-561, 2023 05.
Article in English | MEDLINE | ID: mdl-35469488

ABSTRACT

BACKGROUND: Diabetes mellitus (DM), a significant public health problem across the nations, is among the top ten leading causes of death. More than 370 million indigenous people (referred to as tribal people in India) are spread across 90 countries. India has the largest tribal people of 104 million. Tribal populations are not exceptional to the threat of type 2 DM (T2DM) and other non-communicable diseases, and hence, public health programmes are addressing this problem. This paper reports the systematic review and meta-analysis of the literature on the prevalence of T2DM. METHODS: We conducted a systematic review and meta-analysis of the literature to understand the prevalence of T2DM among the tribal populations of India, following the guidelines of the PRISMA Statement for Reporting Systematic Reviews and Meta-Analysis. The gender-wise prevalence was recalculated by extracting the data wherever possible. Forest plots were depicted based on the prevalence, and other analyses were performed. RESULTS: On initial searches from three databases, 5422 citations were identified, and ultimately 27 studies were included in the review. These studies were undertaken amongst different tribes in different parts of India. The pooled prevalence of T2DM among men, women and combined were 6.04% (95% confidence interval (CI): 5.55% to 6.57%), 6.48% (95% CI: 6.01% to 6.99%) and 4.94% (95% CI: 4.72% to 5.17%), respectively. Considerable heterogeneity was found among these studies. CONCLUSION: This systematic review provides an overview of the prevalence of T2DM among the Indian tribal population. The pooled overall prevalence is slightly lower than the general population. This situation is worrisome as the epidemic of T2DM will affect the poor tribal communities, who can least afford to bear the health care costs. Hence, the public health care services must be strengthened in all tribal areas. This review further warrants establishing surveillance of T2DM in tribal areas.


Subject(s)
Diabetes Mellitus, Type 2 , Indigenous Peoples , South Asian People , Female , Humans , Male , Diabetes Mellitus, Type 2/epidemiology , India/epidemiology , Indigenous Peoples/statistics & numerical data , Population Groups , Prevalence , Public Health/statistics & numerical data , South Asian People/statistics & numerical data
14.
J Med Screen ; 30(1): 28-35, 2023 03.
Article in English | MEDLINE | ID: mdl-36036388

ABSTRACT

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.


Subject(s)
Anemia, Sickle Cell , Early Detection of Cancer , Humans , Feasibility Studies , Anemia, Sickle Cell/diagnosis , Anemia, Sickle Cell/epidemiology , Delivery of Health Care , India/epidemiology
15.
Hemoglobin ; 47(6): 227-236, 2023 Nov.
Article in English | MEDLINE | ID: mdl-38189147

ABSTRACT

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.


Subject(s)
Anemia, Sickle Cell , Infant , Humans , Anemia, Sickle Cell/diagnosis , Anemia, Sickle Cell/epidemiology , Anemia, Sickle Cell/therapy , India/epidemiology
16.
Trans R Soc Trop Med Hyg ; 116(12): 1101-1111, 2022 12 02.
Article in English | MEDLINE | ID: mdl-36227060

ABSTRACT

Sickle cell disease (SCD) affects approximately 5% of the world's population, and India has been the second highest country in the numbers of predicted SCD births. Despite the high burden in India, there is no state-led public health programme, and very few interventions dealing with the treatment and management of SCD are available. This review highlights the dearth of SCD-related interventions, and demonstrates that these interventions effectively improve patients' conditions and are feasible to implement in India. We systematically searched three databases-PubMed/Medline, Google Scholar and Web of Science-for articles from India on SCD-related interventions. The PRISMA guidelines were followed during this review. We included 22 studies, of which 19 dealt with specific therapeutic interventions, and 3 with comprehensive SCD care. Hydroxyurea therapy was the main therapy in 15 studies and is efficacious. Three studies demonstrated the feasibility of comprehensive care in resource-limited settings. The low number of SCD-related intervention studies does not match the huge burden of SCD in India. Governments of endemic countries should consider the findings of available interventions and include them in their countries' programmes. Comprehensive care is feasible in India and other low-resource settings, from screening to treatment and psychosocial support.


Subject(s)
Anemia, Sickle Cell , Humans , Anemia, Sickle Cell/epidemiology , Anemia, Sickle Cell/therapy , Anemia, Sickle Cell/diagnosis , Hydroxyurea/therapeutic use , India/epidemiology
17.
J Community Genet ; 13(6): 597-603, 2022 Dec.
Article in English | MEDLINE | ID: mdl-36227533

ABSTRACT

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.

18.
J Migr Health ; 6: 100130, 2022.
Article in English | MEDLINE | ID: mdl-36110500

ABSTRACT

Background: Disparities in healthcare access to internal migrants exist, and the gaps may widen further if appropriate steps are not taken. Innovative approaches are needed to better align the healthcare services with the migrants' needs. Aim: The aim was to develop and test a supportive strategy of healthcare, which would achieve the desired level of access and delivery of maternal healthcare services to internal migrants living in nine Indian cities. Methods: This intervention with the quasi-experimental design was conducted with pre- vs post-intervention comparisons within the interventional groups and with the control group. The intervention was implemented with an inclusive partnership approach. Advocacy and community mobilization were the main intervention components. Findings: An increased proportion of women sought antenatal care during the intervention. More women initiated seeking antenatal care in the first trimester. Due to intervention, health workers' prenatal (41.7% in the post- against 14.7% in the pre-interventional phase) and postnatal home visits increased (11.6% to 34.7%) considerably. Conclusions: Interventions with inclusive partnership would improve healthcare access to vulnerable communities such as migrants. Hence, efforts to strengthen the government healthcare system through novel strategies are crucial to provide better healthcare to migrants.

19.
J Community Genet ; 13(3): 329-338, 2022 Jun.
Article in English | MEDLINE | ID: mdl-35103923

ABSTRACT

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.

20.
Burns ; 48(6): 1497-1508, 2022 09.
Article in English | MEDLINE | ID: mdl-34903406

ABSTRACT

BACKGROUND: Burn care in India is limited by multiple constraints. The COVID-19 pandemic and the containment measures restricted access to non-COVID emergency conditions, including burns. The aim of this study was to explore the impact of the pandemic on burn care in India. METHODS: Using the qualitative exploratory methods, we conducted in-depth interviews (IDI) with plastic and general surgeons representing burn units from across India. Participants were selected purposively to ensure representation and diversity and the sample size was guided by thematic saturation. Thematic analysis was undertaken adopting an inductive coding using NVivo 12 Pro. RESULTS: 19 participants from diverse geographic locations and provider types were interviewed. Three major emerging themes were, change in patient and burn injury characteristics; health system barriers, adaptation, and challenges; and lessons and emerging recommendations for policy and practice. There was change in patient load, risk factors, and distribution of burns. The emergency services were intermittently disrupted, the routine and surgical services were rationally curtailed, follow-up and rehabilitation services were most affected. Measures like telemedicine and decentralising burn services emerged as the most important lesson. CONCLUSIONS: The ongoing pandemic has compounded the challenges for burns care in India. Urgent action is required to prioritise targeted prevention, emergency transport, decentralise service delivery, and harnessing technology for ensuring resilience in burns services.


Subject(s)
Burns , COVID-19 , Burn Units , Burns/therapy , Humans , Pandemics/prevention & control , Qualitative Research
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