From Knowledge to Care: Hemoglobinopathy Awareness and Health-Seeking Behaviour among selected Scheduled Tribes in Tamil Nadu

From Knowledge to Care: Hemoglobinopathy Awareness and Health-Seeking Behaviour among selected Scheduled Tribes in Tamil Nadu | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article From Knowledge to Care: Hemoglobinopathy Awareness and Health-Seeking Behaviour among selected Scheduled Tribes in Tamil Nadu Kezia Angeline J, Gladius Jennifer H This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9130472/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 7 You are reading this latest preprint version Abstract Background In India, hemoglobinopathies are a major public health concern, especially among Scheduled Tribe populations where socioeconomic disadvantage and limited access to preventive health services combine with genetic susceptibility. In many tribal settings, knowledge of inherited blood disorders and the use of genetic services are still low, despite the growth of national screening and control programs. Designing culturally appropriate preventive strategies requires an understanding of health-seeking behaviour patterns and community-level awareness. Aim This study aimed to assess awareness of hemoglobinopathies and describe patterns of general health-seeking behaviour among Scheduled Tribe populations residing in selected districts of Tamil Nadu. Methods A community-based cross-sectional study was conducted among 400 study participants belonging to the tribes residing in Dharmapuri, Kancheepuram, Salem, and Nilgiris. A semi-structured questionnaire captured socio-demographic characteristics, awareness of hemoglobinopathies, and health-seeking behaviours. Reliability of the tool was assessed using Cronbach’s alpha. Data were analysed using descriptive statistics and proportions. Results Only 24% of participants had heard about hemoglobinopathies. Among those aware, healthcare professionals (n = 56, 58%) were the main information sources. Awareness regarding inheritance was around 17% with around 80% unable to identify the cause. Majority of the study participants self-reported that their health status was fair (n = 164, 41%) and mentioned that they have a primary health center located nearby their residence (n = 237, 59%). Out of 276 female study participants, 12 (4%) were pregnant among whom, the utilization of genetic testing was around 67% (n = 8). Barriers included difficulties in convincing family members (94%) to seek a health facility at the time of illness. Conclusion Despite perceived access to healthcare services, the results show significant gaps in knowledge of hemoglobinopathies among the scheduled tribe communities. Household decision-making dynamics and sociocultural factors seem to have a significant impact on health-seeking behaviour. Tribal populations may benefit from early detection and prevention of inherited blood disorders if community-based awareness campaigns and culturally sensitive genetic counselling are strengthened through primary healthcare platforms. Hemoglobinopathies Scheduled Tribes Awareness Health-seeking behaviour Genetic screening Figures Figure 1 Figure 2 Figure 3 Introduction Hemoglobinopathies: sickle cell disease (SCD) and thalassemia, are major global public health issues that disproportionately impact India's tribal populations, including those in Tamil Nadu. Due to factors like consanguineous marriages and genetic predisposition, these disorders are highly prevalent in Scheduled Tribe communities. These genetic disorders are caused by abnormalities in hemoglobin production or structure 1 , 2 . There is a high prevalence of hemoglobinopathies in the Malayali tribes in the Jawadhu hills, as evidenced by the fact that 14.67% of them had abnormal hemoglobin fractions and nearly 14% had the β-thalassemia trait; in spite of this, only 10.61% knew about hemoglobinopathies 1 . In a similar view, few people are aware of sickle cell disease: in Odisha's sickle cell belt, less than 35% of people were aware of sickle cell trait even though over 80% had heard of sickle cell disease, and nearly none were aware of their carrier status 3 . Despite this burden, there is still a lack of awareness and knowledge about hemoglobinopathies in these populations; many people are not aware of their carrier status, the symptoms of the disease, or preventive measures, which leads to poor health-seeking behaviour 3 . The stigma attached to illnesses like sickle cell disease also has a detrimental effect on patients' quality of life and deters them from seeking appropriate care, underscoring the need for health system interventions and culturally sensitive awareness programs 4 , 5 .Tribal populations' health-seeking behaviour is frequently impacted by sociocultural factors and restricted access to healthcare, which leads to a dependence on traditional medicine and a low uptake of preventive services 6 , 7 . These findings highlight the critical need for focused educational initiatives and better access to healthcare to address health-seeking behaviours and awareness gaps regarding hemoglobinopathies among Tamil Nadu's Scheduled Tribes 1 . To lessen the burden of hemoglobinopathies in these vulnerable communities, it is therefore essential to evaluate awareness levels and comprehend health-seeking behaviours among Tamil Nadu's Scheduled Tribes in order to develop focused educational interventions and enhance healthcare accessibility 1 , 2 . Research attention to tribal health in India has increased in recent years, but bibliometric analyses highlight persistent gaps in studies addressing health-systems factors and care-seeking behaviours among tribal populations 12 . Thalassemia imposes substantial treatment and psychosocial burdens in Indian contexts, with recent scoping and qualitative studies reporting poorer quality of life and challenges in treatment access among indigenous families 8 , 9 . Awareness plays a critical role in shaping health-seeking behaviour by influencing risk perception, acceptance of screening, and timely utilisation of health services. Studies have shown that limited awareness of thalassemia is associated with poor uptake of carrier screening and delayed diagnosis, while improved knowledge significantly enhances preventive care-seeking practices 10 , 11 . In underserved and tribal populations, low health literacy combined with sociocultural and access barriers further restricts effective care-seeking, reinforcing the need for targeted, community-based awareness interventions 12 , 13 . Descriptive community-based studies give baseline information about healthcare utilisation, awareness, and where people get their information. Distributions categorized by age, gender, education, and disease status can uncover population disparities that facility-based data may not capture. Despite increasing research on hemoglobinopathies in India, most existing studies have focused primarily on prevalence, clinical outcomes, or screening programmes. Few community-based studies from Tamil Nadu have examined awareness of hemoglobinopathies alongside broader patterns of health-seeking behaviour among Scheduled Tribe communities. As a result, there is limited understanding of how community awareness interacts with household decision-making and care-seeking practices in these populations. Examining both awareness and health-seeking behaviour within the same population can provide important insights into the social and behavioural factors influencing the uptake of preventive and screening services. Hence, this study aimed to assess the awareness regarding hemoglobinopathies and to explore health-seeking behaviours and their patterns among Scheduled Tribes residing in selected districts of Tamil Nadu. The socioecological model proposes that health behaviours emerge from the dynamic interplay of individual factors (knowledge, education, perceptions), interpersonal relationships (family decision-making, social support), community contexts (geographic isolation, cultural beliefs, tribal organisation), and structural determinants (healthcare infrastructure, policy implementation, screening programs). Preventive behaviours, including genetic screening uptake and healthcare utilisation, arise not solely from individual awareness but from the interaction of these interconnected ecological levels 14 . This framework directs that individual awareness, household dynamics, community characteristics, and health system factors collectively influence hemoglobinopathy prevention and care-seeking behaviours in tribal Tamil Nadu. Materials and Methods Study design, setting and study population : A community-based descriptive cross-sectional study was conducted among five scheduled tribes: Malayali, Kattunayakan, Kurumba, Irular and Paniya residing in selected districts of Tamil Nadu: Dharmapuri, Kancheepuram, Salem and The Nilgiris. The districts were selected based on their substantial tribal population, representation of major Scheduled Tribe communities of Tamil Nadu, documented vulnerability to hemoglobinopathies, and diversity in geographic and health-system contexts 15 . The study population comprised adult tribal residents aged 18 years and above, who gave consent to take part in the study. A total sample size of 400 participants was included in the study to ensure adequate representation of the community and sufficient precision for descriptive and subgroup analyses. Sampling technique : A two-stage random sampling technique was employed: in the first stage, villages with a substantial concentration of Scheduled Tribe populations were identified within the selected districts; in the second stage, households within these selected villages were randomly approached, and eligible participants were selected for interview. In households with more than one eligible participant, one individual was selected using the Birthday Rule (i.e., the eligible person whose birthday was closest to the interview date) to minimize selection bias. Inclusion and exclusion criteria Individuals aged 18 years and above, including pregnant women, who were residents of the selected tribal habitations for a minimum period of at least one year and willing to provide informed consent were included in the study. Individuals with multiple severe comorbidities were excluded. Data collection : Data were collected using a semi-structured questionnaire comprising three sections: socio-demographic characteristics, awareness related to hemoglobinopathies, and health-seeking behaviour. The awareness section included questions on prior recognition of hemoglobinopathies, source of information, perceived causes, and personal and family history of the disorder. Awareness was assessed using basic recognition indicators across five domains: recognition of the disease, information exposure, knowledge of cause, personal disease awareness, and family disease awareness. Recognition of disease was assessed by asking participants whether they had previously heard of hemoglobinopathies. Information exposure was captured through questions on sources of information such as healthcare professionals, family members, or media. Knowledge of cause was assessed by asking participants to identify possible causes of hemoglobin disorders, including inherited causes. Personal and family disease awareness were assessed by asking participants whether they or any of their family members have been diagnosed with a hemoglobin disorder. Health-seeking behaviour was assessed using indicators related to healthcare access, care-seeking practices, decision-making for illness, and healthcare utilisation patterns. Health-seeking behaviour indicators included perceived access to healthcare facilities, distance to the nearest health centre, decision-making regarding care-seeking during illness, care-seeking practices during recent illness episodes, and healthcare utilisation patterns for affected individuals and family members. For individuals who self-reported being affected by hemoglobinopathies or reported affected family members, additional information regarding diagnosis setting, blood transfusion practices, and treatment-seeking location was collected. Health-seeking behaviour in this study refers to general healthcare utilisation patterns rather than disease-specific treatment behaviour. The questionnaire used in this study was developed by the research team based on a review of relevant literature on hemoglobinopathy awareness and health-seeking behaviour in similar settings. The tool was designed to capture key domains including socio-demographic characteristics, awareness of hemoglobinopathies, and health-seeking behaviour. The questionnaire was initially developed in English and translated into local language (Tamil). The English version of the questionnaire has been provided as Supplementary File 1. Pilot testing: The questionnaire was pre-tested among a small group of participants from a similar tribal population to assess clarity, cultural appropriateness, and feasibility. Minor refinements were made to improve wording and comprehension before final data collection. Reliability of the study instrument: The internal consistency of the questionnaire was assessed using Cronbach’s alpha coefficient based on the study sample. The awareness-related items demonstrated good internal consistency (Cronbach’s α = 0.82), while the health-seeking behaviour items showed acceptable reliability (Cronbach’s α = 0.64), reflecting the multidimensional nature of health-seeking behaviour. Data analysis Data were analysed using the Statistical Package for the Social Sciences (SPSS) software version 29. Descriptive statistics were used to summarise the study variables. Categorical variables were expressed as frequencies and percentages. Cross-tabulations were performed to examine the distribution of awareness across socio-demographic characteristics. Results Socio-demographic characteristics of the study population The study involved 400 tribal participants from five Scheduled Tribe communities across four chosen districts in Tamil Nadu. The Malayali tribe made up the biggest group of people from Salem and Dharmapuri districts (n = 192, 48%), followed by Irular tribe from Kancheepuram district was next (n = 81, 20.3%); the Paniya tribe (n = 66, 16.5%) and the Kattunayakan tribe (n = 15, 3.8%) also took part in the study from the Nilgiris district; the Kurumba tribe (n = 46, 11.5%) took part from Dharmapuri and the Nilgiris districts. The majority of participants were between the ages of 37 and 50 (n = 110, 27.5%). More than half of the people in the study were women (n = 276, 69%). About 4% of those women (n = 12) were pregnant when the data was collected. Most of the people who took part had no formal education (n = 241, 60.3%), which shows that their level of education was low. Awareness of Hemoglobinopathies among the study population Figure 1 shows the proportion of respondents who had heard of hemoglobinopathies (24%) and those who had not (76%). Table 1 Basic Awareness Indicators Related to Hemoglobinopathies among Study Participants (n = 400) Awareness Domain Indicator n % Source of awareness* Healthcare professionals 56 58 Family/Friends 27 28 Media/Newspaper 13 14 Knowledge of cause Inherited from parents 67 17 Natural cause 2 0.5 Not sure 13 3 Do not know 318 79.5 Self-reported disease status Affected 7 2 Not affected 393 98 Family disease awareness Family member affected 21 5 No family history 379 95 *Source of awareness calculated among respondents who had heard of hemoglobinopathies (n = 96). Overall awareness of hemoglobinopathies (Basic Awareness Indicator: Recognition of Hemoglobinopathies) among study participants is presented in Fig. 1 , while detailed tabulation of the remaining basic awareness indicators is shown in Table 1 . Among the 400 study participants, 24% reported having heard of hemoglobinopathies (Fig. 1 ) with healthcare professionals identified as the primary source of information (58%). Awareness regarding the inherited nature of these disorders was limited, with only 17% recognising that hemoglobinopathies are inherited conditions. A small proportion of participants (2%) reported that they themselves were affected by a hemoglobin disorder and 5% said that their family members were affected by hemoglobinopathies. Table 2 Distribution of awareness of hemoglobinopathies according to socio-demographic characteristics of study participants (n = 400) Variable Category Aware n (%) Not aware n (%) Age group ≤ 24 years 33 (32) 70 (68) 25 to 36 years 27 (27) 73 (73) 37 to 50 years 22 (20) 88 (80) > 50 years 14 (16.1) 73 (83.9) Gender Male 44 (35.5) 80 (64.5) Female 52 (18.8) 224 (81.2) Tribe Malayali 67 (34.9) 125 (65.1) Irular 9 (11.1) 72 (88.9) Kattunayakan 1 (6.7) 14 (93.3) Kurumba 9 (19.6) 37 (80.4) Paniya 10 (15.2) 56 (84.8) Disease status Positive 24 (27) 72 (23.2) Negative 72 (23.2) 239 (76.8) Percentages represent row percentages within each socio-demographic category. Figure 2 represents the proportion of participants aware of hemoglobinopathies according to educational level. Awareness increased with higher levels of education. Percentages represent row percentages within each educational category. Table 2 and Fig. 2 presents the distribution of awareness of hemoglobinopathies according to selected socio-demographic characteristics of the study participants. With respect to age, awareness appeared higher among younger participants. About 32% of respondents aged ≤ 24 years reported having heard of hemoglobinopathies, followed by 27% among those aged 25–36 years and 20% among those aged 37–50 years. The lowest level of awareness was observed among participants aged > 50 years (16.1%). Regarding gender, a greater proportion of males (35.5%) reported awareness of hemoglobinopathies compared with females (18.8%). Differences were also observed across educational categories, with awareness increasing with higher levels of education. Participants with intermediate/diploma/graduate education reported the highest awareness (44%), followed by those with high school or higher secondary education (36%). Awareness was comparatively lower among participants with primary or middle school education (20.8%) and those with no formal education (17.8%) (Fig. 2 ). Variations in awareness were also observed across tribal groups. Among Malayali participants, 34.9% reported having heard of hemoglobinopathies. In comparison, awareness was lower among other tribes, including Kurumba (19.6%), Paniya (15.2%), Irular (11.1%), and Kattunayakan (6.7%) participants. With respect to disease status, awareness appeared slightly higher among participants who reported being affected by hemoglobinopathies (27%) compared with those who reported not being affected (23.2%). Health-seeking Behaviour (HSB) among the study population Health-seeking behaviour (HSB) was examined across three domains reflecting different contexts of care-seeking within the household and community: (i) individual-related health-seeking behaviour, (ii) health-seeking behaviour among pregnant women, and (iii) health-seeking behaviour for sick family members. (i) Health-seeking behaviour of the respondent when sick (n = 400) The majority of the study participants perceived their health status as fair (n = 164, 41%). More than half of the respondents reported the presence of a Primary Health Center (PHC) or Sub-center located near their residence (n = 237, 60%). With respect to distance, approximately 39% reported that the nearest health facility was located 5–10 kilometres from their homes, while about 22% indicated availability within a distance of less than 5 kilometres. Almost all participants reported having easy access to healthcare facilities (99%). A large proportion stated that they would seek healthcare even with the slightest discomfort (85%). Decision-making regarding healthcare-seeking during illness was predominantly collective, with most respondents reporting joint decision-making involving themselves and family members (n = 380, 95%). When asked about actions taken during recent illness episodes, nearly half of the participants reported visiting a nearby healthcare facility (n = 191, 48%). Among participants who reported being affected by hemoglobinopathies, most had been diagnosed in government healthcare settings, including Primary Health Centres and Government Hospitals (n = 6, 86%). All affected individuals reported receiving blood transfusions and treatment. Treatment was sought from government healthcare facilities (n = 3, 43%), private hospitals (n = 3, 43%), and NGO or tribal care hospitals (n = 1, 14%). (ii) Health-seeking behaviour of female respondents with respect to prenatal screening (n = 276) Among the 276 female participants, 61 (22%) had heard of prenatal genetic testing and 12 (4%) were pregnant at the time of the survey. Among these pregnant women, 5 (42%) have mentioned that it was their first pregnancy, and utilisation of genetic testing was reported by approximately 67% (n = 8): all these women reported that they underwent genetic testing during their first trimester in government hospitals because it was insisted by a healthcare professional. However, among the overall female study population, only 13% (n = 36) reported that prenatal genetic testing was important for ruling out inherited disorders.\ (iii) Health-seeking behaviour of the respondent when any of his/her family members are sick (n = 400) The majority of respondents (n = 334, 84%) reported that decisions regarding seeking healthcare for sick family members were made jointly by the respondent, the affected individual and other household members. All participants stated that they would take the sick family member to a nearby healthcare facility when illness occurred. Despite this, difficulties related to convincing the sick family member to seek care were commonly reported: nearly 94% of respondents (n = 374) identified convincing the patient as a major barrier to timely healthcare utilisation. Additionally, around 5% of participants reported that their family members were affected by a hemoglobinopathy. Among these, most respondents indicated that the affected individual was an immediate family member (n = 19, 90%), while 10% (n = 2) reported that cousins or other close relatives were affected. Nearly half of these cases were diagnosed during tribal village medical camps (n = 10, 48%), followed by government or private hospital settings (n = 9, 43%). Among the affected family members, 11 individuals (52%) were undergoing blood transfusions, and the majority were receiving treatment in government healthcare facilities (n = 15, 71%). Based on the findings of the present study, a conceptual framework was developed to illustrate the multi-level determinants influencing awareness of hemoglobinopathies and health-seeking behaviour among the scheduled tribe populations in Tamil Nadu (Fig. 3 ). The framework highlights how limited understanding of inherited disorders interacts with interpersonal influences such as family norms and collective decision-making, institutional factors including access to primary healthcare services, and broader community beliefs and policy contexts. This framework provides an explanatory summary of the observed patterns in awareness and healthcare-seeking behaviour within the study population. Discussion This descriptive study examined awareness of hemoglobinopathies and health-seeking behaviour among Scheduled Tribe communities in Tamil Nadu. Only 96 (24%) of the 400 participants had heard of thalassemia. The observed low awareness of hemoglobinopathies (24%) among the tribal population in Tamil Nadu is consistent with findings from other regions, such as a community survey in Delhi-NCR that reported 36.8% awareness, underscoring persistent knowledge gaps 16 . A multi-site study reported that only about 32% of community respondents had heard of sickle-cell disease, highlighting persistent knowledge gaps in high-risk populations 17 . Younger people, men, and people with more education were more aware. Similar patterns have been reported in earlier studies, where awareness of hemoglobinopathies was significantly higher among younger individuals, males and those with higher educational attainment, while disease or carrier status did not independently improve knowledge levels, highlighting gaps in post-diagnostic counselling 18 . These patterns corroborate recent Indian research indicating that tribal and rural communities are uninformed about inherited hemoglobin disorders. Community studies and reviews indicate significant variability in awareness, with education and social status exerting a substantial impact on knowledge and screening participation 19 – 21 . This study’s education gradient, ranging from 17.8% awareness among individuals with no formal schooling to 44% among those with intermediate or higher education, underscores health literacy as a crucial factor influencing genetic and screening awareness in low-resource contexts 19 , 20 . Malayali participants (34.9%) exhibited greater awareness, potentially attributable to localized outreach, historical screening, or varied health messaging. Research on the distribution of hemoglobinopathy alleles and community involvement in India has revealed intra-tribal heterogeneity 1 , 22 . Disease status did not appear to substantially influence awareness levels. It implies that being disease-positive or a carrier does not ensure knowledge or participation in counselling. This is in line with what other studies have found: that diagnosis in places with few resources often does not include genetic counselling, follow-up education, or preventive services 23 , 24 . Screening programs, even if they find carriers or people who are affected, will not contribute much to stop the spread of disease unless they are combined with structured counselling and community education. Data on health-seeking behaviour show mixed but positive use of primary care. 60% (n = 237) said they lived near a PHC/sub-center, 99% said it was easy to get to, and 85% percent said they would go to the doctor at the first sign of trouble. A majority of people thought their health was fair (n = 164, 41%). Almost half (48%, n = 191) went to a nearby hospital when they were sick. The growth of PHCs and outreach workers has made primary care more available in many rural areas of India. This shows that geographical access is not the only thing that stops people from using services, as reported from previous studies 25 , 26 . The results of HSB from this study findings show that there are important social and behavioural limits. Joint decision-making regarding healthcare is prevalent: 95% (n = 380) made decisions for themselves, and 84% (n = 334) for ill family members. Getting a sick family member to go to the doctor was a big problem for 94% (n = 374). These results corroborate qualitative and review evidence indicating that familial authority, gendered roles, and indigenous beliefs influence timely healthcare-seeking in tribal India 27 . Tribal health actions are influenced by household dynamics and social norms. This research’s finding that community networks strongly influence screening and treatment uptake aligns with qualitative work showing that social networks, NGOs and extended family are critical facilitators of thalassemia management in indigenous settings; interventions should therefore build on existing community support structures to increase awareness and linkage to services 28 . Prenatal screening results merit consideration. Only 12 (4%) of the 276 women who took the survey were pregnant, and 67% (n = 8) said they had genetic testing done. Of all the women, 36 (13%) thought that prenatal genetic testing was important for ruling out inherited disorders. The relatively high uptake among the small subgroup of pregnant women and the low overall perceived importance may be due to opportunistic access (like when tests are offered during facility visits) instead of widespread, informed uptake driven by community awareness or counselling. In other extensive Indian studies, the uptake of antenatal screening rises when testing is proactively provided at the point of care; however, community awareness and preconception counselling continue to be inadequate 25 . This pattern underscores the necessity of integrating systematic hemoglobinopathy screening and counselling into standard antenatal services, with a focus on informed consent and culturally sensitive communication. The awareness and HSB findings indicate a crucial public health insight: primary care and even opportunistic screening are inadequate to avert hemoglobinopathy unless community awareness, counselling capabilities, and family decision-making processes are concurrently addressed. The National Sickle Cell Mission and operational screening guidelines recommend population screening, counselling, community engagement, and referral linkages; however, our data indicate deficiencies in community implementation 23 . Following logically, there are policy and program implications. Tribal screening strategies should be combined with scalable genetic counselling models that use PHC-level trained frontline workers (ANMs, ASHAs) and referral networks to district genetic services. Task-sharing models and short, visual counselling packages in local languages may help fill current gaps 24 . Behaviour Change Communication (BCC) strategies must include family decision-makers, especially elders and male heads of households, as indicated by our verbatim accounts. They should also use trusted community platforms like panchayats, faith gatherings, and schools to explain premarital and prenatal screening in the area. Mobile screening camps and targeted outreach in tribes with less awareness (Irular, Paniya, Kurumba, and Kattunayakan in this study) may help find more cases and connect people with counselling and care in the short term 1 , 22 , 26 . Given the documented non-communicable diseases and thalassemia burden among tribal communities from previous studies, there is an urgent need for context-specific health-education and screening programs that address both structural and sociocultural barriers to care seeking 8 , 9 , 28 . Strengths and limitations of the study The strengths of the study encompass a community-based sample of 400 participants from five tribal communities across four districts, along with a quantitative description supplemented by illustrative open responses to contextualize quantitative distributions. The primary limitations include the cross-sectional design (which prevents causal inference), the potential self-report bias in awareness and HSB measures, and the restricted granularity in the prenatal screening sub-sample (comprising 12 pregnant women). The HSB instrument recorded extensive behavioural patterns but lacked disease specificity, enhancing external validity for general care patterns while constraining inferences regarding hemoglobinopathy-related behaviours. There are certain limitations in this study. Cross-sectional studies make it hard to say what causes awareness and health-seeking. The use of a self-developed questionnaire, although pre-tested and assessed for internal consistency, may limit comparability with studies using standardized instruments. Self-reported awareness and care-seeking may not be accurate because of recall or social desirability bias. There were not many pregnant women, so the subgroup analysis of prenatal screening was also limited. Conclusion and Future Research The current study underscores significant deficiencies in the awareness of hemoglobinopathies and critical contextual factors affecting health-seeking behaviour within tribal communities in Tamil Nadu, despite adequate physical access to primary healthcare services. These results highlight the necessity for enhanced community education, culturally sensitive genetic counselling, and the systematic incorporation of hemoglobinopathy services into standard primary and maternal healthcare. Future research ought to examine integrated screening-counselling models implemented via primary health centers and community outreach platforms, and evaluate subsequent outcomes including screening uptake, informed reproductive decision-making, neonatal diagnosis, referral linkage, and continuity of care. Longitudinal cohort designs and implementation research methodologies would be especially beneficial for producing evidence regarding program efficacy and sustainability in tribal contexts. Declarations Acknowledgements The author acknowledges the Directorate of Tribal Welfare, Ezhilagam, Chennai, for facilitating this study, and the Village Heads, Field Investigators, NGO volunteers, and all study participants for their support and cooperation during data collection. The authors gratefully acknowledge the financial support provided by SRM Medical College Hospital and Research Center, Faculty of Medicine and Health Sciences, SRMIST, Kattankulathur for bearing the defrayed costs of publishing this article. Author Contributions Conceptualization: JKA and HGJ; Methodology: JKA and HGJ; Formal Analysis: JKA; Investigation: JKA; Data Curation: JKA; Writing - original draft: JKA; Writing - review and editing: JKA and HGJ; Supervision, methodological guidance and final approval: HGJ. Conflict of Interest The authors declare no conflict of interest Funding Financial support for publishing the article was provided by SRM Medical College Hospital and Research Center, Faculty of Medicine and Health Sciences, SRMIST, Kattankulathur Ethical Considerations Ethical approval was obtained from SRM Medical College Hospital and Research Centre with Ethics Clearance No: 8699/IEC/2023 prior to the commencement of the study. The study was conducted in accordance with the ethical principles outlined in the Declaration of Helsinki. Permission was also obtained from the Directorate of Tribal Welfare, Ezhilagam, Chennai (RC.No./TD/ C2/7665/ 2023), local administrative authorities, Non-Governmental Organization (NGO) Volunteers and tribal leaders. Use of Artificial Intelligence (AI) Tools Artificial intelligence-assisted tools were used only for language editing. No AI tools were used for data analysis, interpretation, or decision-making. All scientific content and conclusions were developed and validated by the authors, who take full responsibility for the manuscript. Consent to Participate Written informed consent was obtained from all participants before data collection. Confidentiality and anonymity were maintained throughout the study. Consent for Publication Not Applicable ORCID ID Ms. Kezia Angeline J - https://orcid.org/0000-0003-0879-3386 Dr. Gladius Jennifer H - https://orcid.org/0000-0003-3934-1884 Data Availability The dataset used for analyzing the study’s findings are available from the corresponding author on reasonable request. References Ganesh B, Rajakumar T, Acharya S, Devika S, Ramachandran V, Yuvaraj J, Nadkarni A, Rajasubramaniam S, Kaur H. Prevalence of hemoglobinopathies among Malayali tribes of Jawadhu hills, Tiruvannamalai district, Tamil Nadu, India: a community-based cross-sectional study. Hematology. 2024;29:2350320. David S, Sindhuvi E, Sasikumar M, Beula D, Rose A, George K, Shanthi S, George B. Prevalence of β-thalassaemia trait among school-going children in Jawadhi Hills: a school-based cross-sectional study. J Family Med Prim Care. 2025;14:2226–30. Bindhani B, Saraswathy K, Nayak J, Devi N. 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Genetic counseling in sickle cell disease: current status and challenges in India. J Genet Counsel. 2023. Shen EC et al. Barriers and facilitators for population genetic screening: a global review. Front Genet. 2022. Hockham C, Bhatt S, Colah R, Mukherjee MB, Penman BS, Gupta S, et al. The spatial epidemiology of sickle-cell anaemia in India. Sci Rep. 2018;8:17685. National Health Mission. Operational Guidelines: National Sickle Cell Anaemia Elimination Mission. Ministry of Health & Family Welfare, Government of India; 2023. Rao P et al. Prevalence and programmatic responses to sickle cell disease in tribal India: review and recommendations. Int J Community Med Public Health. 2024. Agarwal RK et al. Prenatal hemoglobinopathy screening and prevention in India: large cross-sectional study 2023–24. Indian J Obstet Gynaecol Public Health. 2025. Linda A et al. Health of tribal populations in India: access, utilisation and health-seeking behaviour. Curr Med Issues India. 2024. Abedin Z et al. Exploring barriers to health service accessibility for tribal women in India: a review (1995–2023). Human Geographies. 2024. Chinnaiyan S, Palanisamy B, Ayyasamy L. Prevalence of diabetes mellitus in Indian tribal population: a systematic review and meta-analysis. Int J Diabetes Developing Ctries. 2023;43:173–83. 10.1007/s13410-022-01133-9 . Additional Declarations No competing interests reported. Supplementary Files SupplementaryFile1Questionnaire23.3.26Final.docx Cite Share Download PDF Status: Under Review Version 1 posted Reviewers agreed at journal 16 Apr, 2026 Reviewers agreed at journal 15 Apr, 2026 Reviewers invited by journal 29 Mar, 2026 Editor assigned by journal 25 Mar, 2026 Editor invited by journal 24 Mar, 2026 Submission checks completed at journal 24 Mar, 2026 First submitted to journal 24 Mar, 2026 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-9130472","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":614346898,"identity":"935c3c0b-ba73-49e2-b52d-3a6b0800f159","order_by":0,"name":"Kezia Angeline J","email":"","orcid":"","institution":"SRM Institute of Science and Technology","correspondingAuthor":false,"prefix":"","firstName":"Kezia","middleName":"Angeline","lastName":"J","suffix":""},{"id":614346899,"identity":"d7028983-f169-440a-816a-57309c6759d2","order_by":1,"name":"Gladius Jennifer H","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA+UlEQVRIie2OMUvDQBiGX/jgsgSyXpf2L3wSCJ3s4B+5I6CLgyA4hoBwWQT/it06HgScqq7XzQw6OUuFDF7aOvbiKHjP8H18x/vwHhCJ/EUSQCqAsuFQOEwVUuigTOpdmH+pDJvt7mSM5IHZGXWuM1WSvzy9Pbz2PbLkktGtjisnrcjn2rRUuIvCacOY3H0w9Dqg3KKQ2livCOF0zWDnW7QJKcmnVyrK7x+FUz1jMabMKB1aiBjnXhG+RY4oTOn1XD23JJ1XtMlTuX6/ssGWpllutjdVmfmPbbb9dJo15bL7CrXY/S5/HtJh2OOCb6n3+zQUikQikX/ON2fnTaw2JUlEAAAAAElFTkSuQmCC","orcid":"","institution":"SRM Institute of Science and Technology","correspondingAuthor":true,"prefix":"","firstName":"Gladius","middleName":"Jennifer","lastName":"H","suffix":""}],"badges":[],"createdAt":"2026-03-15 18:08:11","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-9130472/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-9130472/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":106068568,"identity":"c9db7538-b4fc-4df4-a1cb-51c55c35992b","added_by":"auto","created_at":"2026-04-03 06:10:53","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":22112,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eAwareness of hemoglobinopathies among study participants (n = 400)\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-9130472/v1/6a847569faa32b357ab1f942.png"},{"id":106068569,"identity":"b0e03c7b-6c08-423e-ad6c-91f9343a9fdd","added_by":"auto","created_at":"2026-04-03 06:10:53","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":29963,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eAwareness of hemoglobinopathies according to educational status among study participants (n = 400).\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-9130472/v1/e113fbcb975c5f78cb9ccb9f.png"},{"id":106068570,"identity":"4b75dbdb-f02c-4308-873c-37cbe61692ec","added_by":"auto","created_at":"2026-04-03 06:10:53","extension":"jpg","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":35218,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eConceptual framework illustrating multi-level determinants of hemoglobinopathy awareness and health-seeking behaviour among the scheduled tribe populations\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e(Source: Authors’ conceptualisation based on study findings)\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"3.jpg","url":"https://assets-eu.researchsquare.com/files/rs-9130472/v1/ab7d0f3d2c6c1dd85e5539c6.jpg"},{"id":106094849,"identity":"f1b1489b-acce-4235-ae4a-50bf761cbb3f","added_by":"auto","created_at":"2026-04-03 11:43:25","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1104753,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9130472/v1/e5908383-742f-40c2-8f02-ebb24b505a5d.pdf"},{"id":106068576,"identity":"54e50fb4-135b-4042-be06-14fbcea79831","added_by":"auto","created_at":"2026-04-03 06:10:56","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":33640,"visible":true,"origin":"","legend":"","description":"","filename":"SupplementaryFile1Questionnaire23.3.26Final.docx","url":"https://assets-eu.researchsquare.com/files/rs-9130472/v1/9c7b0a40879b5be06544640d.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"From Knowledge to Care: Hemoglobinopathy Awareness and Health-Seeking Behaviour among selected Scheduled Tribes in Tamil Nadu","fulltext":[{"header":"Introduction","content":"\u003cp\u003eHemoglobinopathies: sickle cell disease (SCD) and thalassemia, are major global public health issues that disproportionately impact India's tribal populations, including those in Tamil Nadu. Due to factors like consanguineous marriages and genetic predisposition, these disorders are highly prevalent in Scheduled Tribe communities. These genetic disorders are caused by abnormalities in hemoglobin production or structure\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e,\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u003c/sup\u003e. There is a high prevalence of hemoglobinopathies in the Malayali tribes in the Jawadhu hills, as evidenced by the fact that 14.67% of them had abnormal hemoglobin fractions and nearly 14% had the β-thalassemia trait; in spite of this, only 10.61% knew about hemoglobinopathies\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u003c/sup\u003e. In a similar view, few people are aware of sickle cell disease: in Odisha's sickle cell belt, less than 35% of people were aware of sickle cell trait even though over 80% had heard of sickle cell disease, and nearly none were aware of their carrier status\u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u003c/sup\u003e. Despite this burden, there is still a lack of awareness and knowledge about hemoglobinopathies in these populations; many people are not aware of their carrier status, the symptoms of the disease, or preventive measures, which leads to poor health-seeking behaviour\u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u003c/sup\u003e. The stigma attached to illnesses like sickle cell disease also has a detrimental effect on patients' quality of life and deters them from seeking appropriate care, underscoring the need for health system interventions and culturally sensitive awareness programs\u003csup\u003e\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e,\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u003c/sup\u003e.Tribal populations' health-seeking behaviour is frequently impacted by sociocultural factors and restricted access to healthcare, which leads to a dependence on traditional medicine and a low uptake of preventive services\u003csup\u003e\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e,\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u003c/sup\u003e. These findings highlight the critical need for focused educational initiatives and better access to healthcare to address health-seeking behaviours and awareness gaps regarding hemoglobinopathies among Tamil Nadu's Scheduled Tribes\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u003c/sup\u003e. To lessen the burden of hemoglobinopathies in these vulnerable communities, it is therefore essential to evaluate awareness levels and comprehend health-seeking behaviours among Tamil Nadu's Scheduled Tribes in order to develop focused educational interventions and enhance healthcare accessibility\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e,\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eResearch attention to tribal health in India has increased in recent years, but bibliometric analyses highlight persistent gaps in studies addressing health-systems factors and care-seeking behaviours among tribal populations\u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e. Thalassemia imposes substantial treatment and psychosocial burdens in Indian contexts, with recent scoping and qualitative studies reporting poorer quality of life and challenges in treatment access among indigenous families\u003csup\u003e\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e,\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eAwareness plays a critical role in shaping health-seeking behaviour by influencing risk perception, acceptance of screening, and timely utilisation of health services. Studies have shown that limited awareness of thalassemia is associated with poor uptake of carrier screening and delayed diagnosis, while improved knowledge significantly enhances preventive care-seeking practices\u003csup\u003e\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e,\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e. In underserved and tribal populations, low health literacy combined with sociocultural and access barriers further restricts effective care-seeking, reinforcing the need for targeted, community-based awareness interventions\u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e,\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eDescriptive community-based studies give baseline information about healthcare utilisation, awareness, and where people get their information. Distributions categorized by age, gender, education, and disease status can uncover population disparities that facility-based data may not capture. Despite increasing research on hemoglobinopathies in India, most existing studies have focused primarily on prevalence, clinical outcomes, or screening programmes. Few community-based studies from Tamil Nadu have examined awareness of hemoglobinopathies alongside broader patterns of health-seeking behaviour among Scheduled Tribe communities. As a result, there is limited understanding of how community awareness interacts with household decision-making and care-seeking practices in these populations. Examining both awareness and health-seeking behaviour within the same population can provide important insights into the social and behavioural factors influencing the uptake of preventive and screening services.\u003c/p\u003e \u003cp\u003eHence, this study aimed to assess the awareness regarding hemoglobinopathies and to explore health-seeking behaviours and their patterns among Scheduled Tribes residing in selected districts of Tamil Nadu. The socioecological model proposes that health behaviours emerge from the dynamic interplay of individual factors (knowledge, education, perceptions), interpersonal relationships (family decision-making, social support), community contexts (geographic isolation, cultural beliefs, tribal organisation), and structural determinants (healthcare infrastructure, policy implementation, screening programs). Preventive behaviours, including genetic screening uptake and healthcare utilisation, arise not solely from individual awareness but from the interaction of these interconnected ecological levels\u003csup\u003e\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u003c/sup\u003e. This framework directs that individual awareness, household dynamics, community characteristics, and health system factors collectively influence hemoglobinopathy prevention and care-seeking behaviours in tribal Tamil Nadu.\u003c/p\u003e"},{"header":"Materials and Methods","content":"\u003cp\u003e\u003cem\u003eStudy design, setting and study population\u003c/em\u003e: A community-based descriptive cross-sectional study was conducted among five scheduled tribes: Malayali, Kattunayakan, Kurumba, Irular and Paniya residing in selected districts of Tamil Nadu: Dharmapuri, Kancheepuram, Salem and The Nilgiris. The districts were selected based on their substantial tribal population, representation of major Scheduled Tribe communities of Tamil Nadu, documented vulnerability to hemoglobinopathies, and diversity in geographic and health-system contexts\u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e. The study population comprised adult tribal residents aged 18 years and above, who gave consent to take part in the study. A total sample size of 400 participants was included in the study to ensure adequate representation of the community and sufficient precision for descriptive and subgroup analyses.\u003c/p\u003e \u003cp\u003e \u003cem\u003eSampling technique\u003c/em\u003e: A two-stage random sampling technique was employed: in the first stage, villages with a substantial concentration of Scheduled Tribe populations were identified within the selected districts; in the second stage, households within these selected villages were randomly approached, and eligible participants were selected for interview. In households with more than one eligible participant, one individual was selected using the Birthday Rule (i.e., the eligible person whose birthday was closest to the interview date) to minimize selection bias.\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eInclusion and exclusion criteria\u003c/strong\u003e \u003cp\u003e Individuals aged 18 years and above, including pregnant women, who were residents of the selected tribal habitations for a minimum period of at least one year and willing to provide informed consent were included in the study. Individuals with multiple severe comorbidities were excluded.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003eData collection\u003c/em\u003e: Data were collected using a semi-structured questionnaire comprising three sections: socio-demographic characteristics, awareness related to hemoglobinopathies, and health-seeking behaviour. The awareness section included questions on prior recognition of hemoglobinopathies, source of information, perceived causes, and personal and family history of the disorder. Awareness was assessed using basic recognition indicators across five domains: recognition of the disease, information exposure, knowledge of cause, personal disease awareness, and family disease awareness. Recognition of disease was assessed by asking participants whether they had previously heard of hemoglobinopathies. Information exposure was captured through questions on sources of information such as healthcare professionals, family members, or media. Knowledge of cause was assessed by asking participants to identify possible causes of hemoglobin disorders, including inherited causes. Personal and family disease awareness were assessed by asking participants whether they or any of their family members have been diagnosed with a hemoglobin disorder. Health-seeking behaviour was assessed using indicators related to healthcare access, care-seeking practices, decision-making for illness, and healthcare utilisation patterns. Health-seeking behaviour indicators included perceived access to healthcare facilities, distance to the nearest health centre, decision-making regarding care-seeking during illness, care-seeking practices during recent illness episodes, and healthcare utilisation patterns for affected individuals and family members. For individuals who self-reported being affected by hemoglobinopathies or reported affected family members, additional information regarding diagnosis setting, blood transfusion practices, and treatment-seeking location was collected. Health-seeking behaviour in this study refers to general healthcare utilisation patterns rather than disease-specific treatment behaviour.\u003c/p\u003e \u003cp\u003eThe questionnaire used in this study was developed by the research team based on a review of relevant literature on hemoglobinopathy awareness and health-seeking behaviour in similar settings. The tool was designed to capture key domains including socio-demographic characteristics, awareness of hemoglobinopathies, and health-seeking behaviour. The questionnaire was initially developed in English and translated into local language (Tamil). The English version of the questionnaire has been provided as Supplementary File 1.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003ePilot testing:\u003c/h2\u003e \u003cp\u003eThe questionnaire was pre-tested among a small group of participants from a similar tribal population to assess clarity, cultural appropriateness, and feasibility. Minor refinements were made to improve wording and comprehension before final data collection.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eReliability of the study instrument:\u003c/h3\u003e\n\u003cp\u003eThe internal consistency of the questionnaire was assessed using Cronbach\u0026rsquo;s alpha coefficient based on the study sample. The awareness-related items demonstrated good internal consistency (Cronbach\u0026rsquo;s α\u0026thinsp;=\u0026thinsp;0.82), while the health-seeking behaviour items showed acceptable reliability (Cronbach\u0026rsquo;s α\u0026thinsp;=\u0026thinsp;0.64), reflecting the multidimensional nature of health-seeking behaviour.\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eData analysis\u003c/strong\u003e \u003cp\u003eData were analysed using the Statistical Package for the Social Sciences (SPSS) software version 29. Descriptive statistics were used to summarise the study variables. Categorical variables were expressed as frequencies and percentages. Cross-tabulations were performed to examine the distribution of awareness across socio-demographic characteristics.\u003c/p\u003e \u003c/p\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e\n\u003ch2\u003eSocio-demographic characteristics of the study population\u003c/h2\u003e\n\u003cp\u003eThe study involved 400 tribal participants from five Scheduled Tribe communities across four chosen districts in Tamil Nadu. The Malayali tribe made up the biggest group of people from Salem and Dharmapuri districts (n\u0026thinsp;=\u0026thinsp;192, 48%), followed by Irular tribe from Kancheepuram district was next (n\u0026thinsp;=\u0026thinsp;81, 20.3%); the Paniya tribe (n\u0026thinsp;=\u0026thinsp;66, 16.5%) and the Kattunayakan tribe (n\u0026thinsp;=\u0026thinsp;15, 3.8%) also took part in the study from the Nilgiris district; the Kurumba tribe (n\u0026thinsp;=\u0026thinsp;46, 11.5%) took part from Dharmapuri and the Nilgiris districts. The majority of participants were between the ages of 37 and 50 (n\u0026thinsp;=\u0026thinsp;110, 27.5%). More than half of the people in the study were women (n\u0026thinsp;=\u0026thinsp;276, 69%). About 4% of those women (n\u0026thinsp;=\u0026thinsp;12) were pregnant when the data was collected. Most of the people who took part had no formal education (n\u0026thinsp;=\u0026thinsp;241, 60.3%), which shows that their level of education was low.\u003c/p\u003e\n\u003c/div\u003e\n\u003ch3\u003eAwareness of Hemoglobinopathies among the study population\u0026nbsp;\u003c/h3\u003e\n\u003cp\u003eFigure \u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e \u003cem\u003eshows the proportion of respondents who had heard of hemoglobinopathies (24%) and those who had not (76%).\u003c/em\u003e\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\n\u003cdiv class=\"colspec\" align=\"left\"\u003e\u0026nbsp;\u003c/div\u003e\n\u003ctable id=\"Tab1\" border=\"1\"\u003e\u003ccaption\u003e\n\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\n\u003cdiv class=\"CaptionContent\"\u003e\n\u003cp\u003eBasic Awareness Indicators Related to Hemoglobinopathies among Study Participants (n\u0026thinsp;=\u0026thinsp;400)\u003c/p\u003e\n\u003c/div\u003e\n\u003c/caption\u003e\n\u003cthead\u003e\n\u003ctr\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eAwareness Domain\u003c/p\u003e\n\u003c/th\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eIndicator\u003c/p\u003e\n\u003c/th\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003en\u003c/p\u003e\n\u003c/th\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003e%\u003c/p\u003e\n\u003c/th\u003e\n\u003c/tr\u003e\n\u003c/thead\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"3\" align=\"left\"\u003e\n\u003cp\u003eSource of awareness*\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eHealthcare professionals\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e56\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e58\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eFamily/Friends\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e27\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e28\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eMedia/Newspaper\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e13\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e14\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"4\" align=\"left\"\u003e\n\u003cp\u003eKnowledge of cause\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eInherited from parents\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e67\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e17\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eNatural cause\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e2\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e0.5\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eNot sure\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e13\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e3\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eDo not know\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e318\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e79.5\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eSelf-reported disease status\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eAffected\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e7\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e2\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eNot affected\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e393\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e98\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eFamily disease awareness\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eFamily member affected\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e21\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e5\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eNo family history\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e379\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e95\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tbody\u003e\n\u003c/table\u003e\n\u003c/div\u003e\n\u003cp\u003e\u003cem\u003e*Source of awareness calculated among respondents who had heard of hemoglobinopathies (n\u0026thinsp;=\u0026thinsp;96).\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eOverall awareness of hemoglobinopathies (Basic Awareness Indicator: Recognition of Hemoglobinopathies) among study participants is presented in Fig.\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e, while detailed tabulation of the remaining basic awareness indicators is shown in Table\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e\n\u003cp\u003eAmong the 400 study participants, 24% reported having heard of hemoglobinopathies (Fig.\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e) with healthcare professionals identified as the primary source of information (58%). Awareness regarding the inherited nature of these disorders was limited, with only 17% recognising that hemoglobinopathies are inherited conditions. A small proportion of participants (2%) reported that they themselves were affected by a hemoglobin disorder and 5% said that their family members were affected by hemoglobinopathies.\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\n\u003ctable id=\"Tab2\" border=\"1\"\u003e\u003ccaption\u003e\n\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\n\u003cdiv class=\"CaptionContent\"\u003e\n\u003cp\u003eDistribution of awareness of hemoglobinopathies according to socio-demographic characteristics of study participants (n\u0026thinsp;=\u0026thinsp;400)\u003c/p\u003e\n\u003c/div\u003e\n\u003c/caption\u003e\n\u003cthead\u003e\n\u003ctr\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eVariable\u003c/p\u003e\n\u003c/th\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eCategory\u003c/p\u003e\n\u003c/th\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eAware\u003c/p\u003e\n\u003cp\u003en (%)\u003c/p\u003e\n\u003c/th\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eNot aware\u003c/p\u003e\n\u003cp\u003en (%)\u003c/p\u003e\n\u003c/th\u003e\n\u003c/tr\u003e\n\u003c/thead\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"4\" align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eAge group\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u0026le;\u0026thinsp;24 years\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e33 (32)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e70 (68)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e25 to 36 years\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e27 (27)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e73 (73)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e37 to 50 years\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e22 (20)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e88 (80)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u0026gt;\u0026thinsp;50 years\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e14 (16.1)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e73 (83.9)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eGender\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eMale\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e44 (35.5)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e80 (64.5)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eFemale\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e52 (18.8)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e224 (81.2)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"5\" align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eTribe\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eMalayali\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e67 (34.9)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e125 (65.1)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eIrular\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e9 (11.1)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e72 (88.9)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eKattunayakan\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e1 (6.7)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e14 (93.3)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eKurumba\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e9 (19.6)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e37 (80.4)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePaniya\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e10 (15.2)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e56 (84.8)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eDisease status\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePositive\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e24 (27)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e72 (23.2)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eNegative\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e72 (23.2)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e239 (76.8)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tbody\u003e\n\u003c/table\u003e\n\u003c/div\u003e\n\u003cp\u003e\u003cem\u003ePercentages represent row percentages within each socio-demographic category.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFigure \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e \u003cem\u003erepresents the proportion of participants aware of hemoglobinopathies according to educational level. Awareness increased with higher levels of education. Percentages represent row percentages within each educational category.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eTable\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e and Fig.\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e presents the distribution of awareness of hemoglobinopathies according to selected socio-demographic characteristics of the study participants.\u003c/p\u003e\n\u003cp\u003eWith respect to age, awareness appeared higher among younger participants. About 32% of respondents aged\u0026thinsp;\u0026le;\u0026thinsp;24 years reported having heard of hemoglobinopathies, followed by 27% among those aged 25\u0026ndash;36 years and 20% among those aged 37\u0026ndash;50 years. The lowest level of awareness was observed among participants aged\u0026thinsp;\u0026gt;\u0026thinsp;50 years (16.1%). Regarding gender, a greater proportion of males (35.5%) reported awareness of hemoglobinopathies compared with females (18.8%).\u003c/p\u003e\n\u003cp\u003eDifferences were also observed across educational categories, with awareness increasing with higher levels of education. Participants with intermediate/diploma/graduate education reported the highest awareness (44%), followed by those with high school or higher secondary education (36%). Awareness was comparatively lower among participants with primary or middle school education (20.8%) and those with no formal education (17.8%) (Fig.\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e\n\u003cp\u003eVariations in awareness were also observed across tribal groups. Among Malayali participants, 34.9% reported having heard of hemoglobinopathies. In comparison, awareness was lower among other tribes, including Kurumba (19.6%), Paniya (15.2%), Irular (11.1%), and Kattunayakan (6.7%) participants.\u003c/p\u003e\n\u003cp\u003eWith respect to disease status, awareness appeared slightly higher among participants who reported being affected by hemoglobinopathies (27%) compared with those who reported not being affected (23.2%).\u003c/p\u003e\n\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\n\u003ch2\u003eHealth-seeking Behaviour (HSB) among the study population\u003c/h2\u003e\n\u003cp\u003eHealth-seeking behaviour (HSB) was examined across three domains reflecting different contexts of care-seeking within the household and community: (i) individual-related health-seeking behaviour, (ii) health-seeking behaviour among pregnant women, and (iii) health-seeking behaviour for sick family members.\u003c/p\u003e\n\u003c/div\u003e\n\u003ch3\u003e(i) Health-seeking behaviour of the respondent when sick (n\u0026thinsp;=\u0026thinsp;400)\u003c/h3\u003e\n\u003cp\u003eThe majority of the study participants perceived their health status as fair (n\u0026thinsp;=\u0026thinsp;164, 41%). More than half of the respondents reported the presence of a Primary Health Center (PHC) or Sub-center located near their residence (n\u0026thinsp;=\u0026thinsp;237, 60%). With respect to distance, approximately 39% reported that the nearest health facility was located 5\u0026ndash;10 kilometres from their homes, while about 22% indicated availability within a distance of less than 5 kilometres. Almost all participants reported having easy access to healthcare facilities (99%). A large proportion stated that they would seek healthcare even with the slightest discomfort (85%). Decision-making regarding healthcare-seeking during illness was predominantly collective, with most respondents reporting joint decision-making involving themselves and family members (n\u0026thinsp;=\u0026thinsp;380, 95%). When asked about actions taken during recent illness episodes, nearly half of the participants reported visiting a nearby healthcare facility (n\u0026thinsp;=\u0026thinsp;191, 48%).\u003c/p\u003e\n\u003cp\u003eAmong participants who reported being affected by hemoglobinopathies, most had been diagnosed in government healthcare settings, including Primary Health Centres and Government Hospitals (n\u0026thinsp;=\u0026thinsp;6, 86%). All affected individuals reported receiving blood transfusions and treatment. Treatment was sought from government healthcare facilities (n\u0026thinsp;=\u0026thinsp;3, 43%), private hospitals (n\u0026thinsp;=\u0026thinsp;3, 43%), and NGO or tribal care hospitals (n\u0026thinsp;=\u0026thinsp;1, 14%).\u003c/p\u003e\n\u003ch3\u003e(ii) Health-seeking behaviour of female respondents with respect to prenatal screening (n\u0026thinsp;=\u0026thinsp;276)\u003c/h3\u003e\n\u003cp\u003eAmong the 276 female participants, 61 (22%) had heard of prenatal genetic testing and 12 (4%) were pregnant at the time of the survey. Among these pregnant women, 5 (42%) have mentioned that it was their first pregnancy, and utilisation of genetic testing was reported by approximately 67% (n\u0026thinsp;=\u0026thinsp;8): all these women reported that they underwent genetic testing during their first trimester in government hospitals because it was insisted by a healthcare professional. However, among the overall female study population, only 13% (n\u0026thinsp;=\u0026thinsp;36) reported that prenatal genetic testing was important for ruling out inherited disorders.\\\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e(iii) Health-seeking behaviour of the respondent when any of his/her family members are sick (n\u0026thinsp;=\u0026thinsp;400)\u003c/strong\u003e\u003c/p\u003e\n\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\n\u003cp\u003eThe majority of respondents (n\u0026thinsp;=\u0026thinsp;334, 84%) reported that decisions regarding seeking healthcare for sick family members were made jointly by the respondent, the affected individual and other household members. All participants stated that they would take the sick family member to a nearby healthcare facility when illness occurred. Despite this, difficulties related to convincing the sick family member to seek care were commonly reported: nearly 94% of respondents (n\u0026thinsp;=\u0026thinsp;374) identified convincing the patient as a major barrier to timely healthcare utilisation.\u003c/p\u003e\n\u003cp\u003eAdditionally, around 5% of participants reported that their family members were affected by a hemoglobinopathy. Among these, most respondents indicated that the affected individual was an immediate family member (n\u0026thinsp;=\u0026thinsp;19, 90%), while 10% (n\u0026thinsp;=\u0026thinsp;2) reported that cousins or other close relatives were affected. Nearly half of these cases were diagnosed during tribal village medical camps (n\u0026thinsp;=\u0026thinsp;10, 48%), followed by government or private hospital settings (n\u0026thinsp;=\u0026thinsp;9, 43%). Among the affected family members, 11 individuals (52%) were undergoing blood transfusions, and the majority were receiving treatment in government healthcare facilities (n\u0026thinsp;=\u0026thinsp;15, 71%).\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;Based on the findings of the present study, a conceptual framework was developed to illustrate the multi-level determinants influencing awareness of hemoglobinopathies and health-seeking behaviour among the scheduled tribe populations in Tamil Nadu (Fig.\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e3\u003c/span\u003e). The framework highlights how limited understanding of inherited disorders interacts with interpersonal influences such as family norms and collective decision-making, institutional factors including access to primary healthcare services, and broader community beliefs and policy contexts. This framework provides an explanatory summary of the observed patterns in awareness and healthcare-seeking behaviour within the study population.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u0026nbsp;\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis descriptive study examined awareness of hemoglobinopathies and health-seeking behaviour among Scheduled Tribe communities in Tamil Nadu. Only 96 (24%) of the 400 participants had heard of thalassemia. The observed low awareness of hemoglobinopathies (24%) among the tribal population in Tamil Nadu is consistent with findings from other regions, such as a community survey in Delhi-NCR that reported 36.8% awareness, underscoring persistent knowledge gaps\u003csup\u003e\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u003c/sup\u003e. A multi-site study reported that only about 32% of community respondents had heard of sickle-cell disease, highlighting persistent knowledge gaps in high-risk populations\u003csup\u003e\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u003c/sup\u003e. Younger people, men, and people with more education were more aware. Similar patterns have been reported in earlier studies, where awareness of hemoglobinopathies was significantly higher among younger individuals, males and those with higher educational attainment, while disease or carrier status did not independently improve knowledge levels, highlighting gaps in post-diagnostic counselling\u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThese patterns corroborate recent Indian research indicating that tribal and rural communities are uninformed about inherited hemoglobin disorders. Community studies and reviews indicate significant variability in awareness, with education and social status exerting a substantial impact on knowledge and screening participation\u003csup\u003e\u003cspan additionalcitationids=\"CR20\" citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e. This study\u0026rsquo;s education gradient, ranging from 17.8% awareness among individuals with no formal schooling to 44% among those with intermediate or higher education, underscores health literacy as a crucial factor influencing genetic and screening awareness in low-resource contexts\u003csup\u003e\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e,\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e\u003c/sup\u003e. Malayali participants (34.9%) exhibited greater awareness, potentially attributable to localized outreach, historical screening, or varied health messaging. Research on the distribution of hemoglobinopathy alleles and community involvement in India has revealed intra-tribal heterogeneity\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e,\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eDisease status did not appear to substantially influence awareness levels. It implies that being disease-positive or a carrier does not ensure knowledge or participation in counselling. This is in line with what other studies have found: that diagnosis in places with few resources often does not include genetic counselling, follow-up education, or preventive services\u003csup\u003e\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e,\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e\u003c/sup\u003e. Screening programs, even if they find carriers or people who are affected, will not contribute much to stop the spread of disease unless they are combined with structured counselling and community education.\u003c/p\u003e \u003cp\u003eData on health-seeking behaviour show mixed but positive use of primary care. 60% (n\u0026thinsp;=\u0026thinsp;237) said they lived near a PHC/sub-center, 99% said it was easy to get to, and 85% percent said they would go to the doctor at the first sign of trouble. A majority of people thought their health was fair (n\u0026thinsp;=\u0026thinsp;164, 41%). Almost half (48%, n\u0026thinsp;=\u0026thinsp;191) went to a nearby hospital when they were sick. The growth of PHCs and outreach workers has made primary care more available in many rural areas of India. This shows that geographical access is not the only thing that stops people from using services, as reported from previous studies\u003csup\u003e\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e,\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThe results of HSB from this study findings show that there are important social and behavioural limits. Joint decision-making regarding healthcare is prevalent: 95% (n\u0026thinsp;=\u0026thinsp;380) made decisions for themselves, and 84% (n\u0026thinsp;=\u0026thinsp;334) for ill family members. Getting a sick family member to go to the doctor was a big problem for 94% (n\u0026thinsp;=\u0026thinsp;374). These results corroborate qualitative and review evidence indicating that familial authority, gendered roles, and indigenous beliefs influence timely healthcare-seeking in tribal India\u003csup\u003e\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e\u003c/sup\u003e. Tribal health actions are influenced by household dynamics and social norms. This research\u0026rsquo;s finding that community networks strongly influence screening and treatment uptake aligns with qualitative work showing that social networks, NGOs and extended family are critical facilitators of thalassemia management in indigenous settings; interventions should therefore build on existing community support structures to increase awareness and linkage to services\u003csup\u003e\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003ePrenatal screening results merit consideration. Only 12 (4%) of the 276 women who took the survey were pregnant, and 67% (n\u0026thinsp;=\u0026thinsp;8) said they had genetic testing done. Of all the women, 36 (13%) thought that prenatal genetic testing was important for ruling out inherited disorders. The relatively high uptake among the small subgroup of pregnant women and the low overall perceived importance may be due to opportunistic access (like when tests are offered during facility visits) instead of widespread, informed uptake driven by community awareness or counselling. In other extensive Indian studies, the uptake of antenatal screening rises when testing is proactively provided at the point of care; however, community awareness and preconception counselling continue to be inadequate\u003csup\u003e\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u003c/sup\u003e. This pattern underscores the necessity of integrating systematic hemoglobinopathy screening and counselling into standard antenatal services, with a focus on informed consent and culturally sensitive communication.\u003c/p\u003e \u003cp\u003eThe awareness and HSB findings indicate a crucial public health insight: primary care and even opportunistic screening are inadequate to avert hemoglobinopathy unless community awareness, counselling capabilities, and family decision-making processes are concurrently addressed. The National Sickle Cell Mission and operational screening guidelines recommend population screening, counselling, community engagement, and referral linkages; however, our data indicate deficiencies in community implementation\u003csup\u003e\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eFollowing logically, there are policy and program implications. Tribal screening strategies should be combined with scalable genetic counselling models that use PHC-level trained frontline workers (ANMs, ASHAs) and referral networks to district genetic services. Task-sharing models and short, visual counselling packages in local languages may help fill current gaps\u003csup\u003e\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e\u003c/sup\u003e. Behaviour Change Communication (BCC) strategies must include family decision-makers, especially elders and male heads of households, as indicated by our verbatim accounts. They should also use trusted community platforms like panchayats, faith gatherings, and schools to explain premarital and prenatal screening in the area. Mobile screening camps and targeted outreach in tribes with less awareness (Irular, Paniya, Kurumba, and Kattunayakan in this study) may help find more cases and connect people with counselling and care in the short term\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e,\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e,\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e\u003c/sup\u003e. Given the documented non-communicable diseases and thalassemia burden among tribal communities from previous studies, there is an urgent need for context-specific health-education and screening programs that address both structural and sociocultural barriers to care seeking\u003csup\u003e\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e,\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e,\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eStrengths and limitations of the study\u003c/h2\u003e \u003cp\u003eThe strengths of the study encompass a community-based sample of 400 participants from five tribal communities across four districts, along with a quantitative description supplemented by illustrative open responses to contextualize quantitative distributions. The primary limitations include the cross-sectional design (which prevents causal inference), the potential self-report bias in awareness and HSB measures, and the restricted granularity in the prenatal screening sub-sample (comprising 12 pregnant women). The HSB instrument recorded extensive behavioural patterns but lacked disease specificity, enhancing external validity for general care patterns while constraining inferences regarding hemoglobinopathy-related behaviours.\u003c/p\u003e \u003cp\u003eThere are certain limitations in this study. Cross-sectional studies make it hard to say what causes awareness and health-seeking. The use of a self-developed questionnaire, although pre-tested and assessed for internal consistency, may limit comparability with studies using standardized instruments. Self-reported awareness and care-seeking may not be accurate because of recall or social desirability bias. There were not many pregnant women, so the subgroup analysis of prenatal screening was also limited.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eConclusion and Future Research\u003c/h2\u003e \u003cp\u003eThe current study underscores significant deficiencies in the awareness of hemoglobinopathies and critical contextual factors affecting health-seeking behaviour within tribal communities in Tamil Nadu, despite adequate physical access to primary healthcare services. These results highlight the necessity for enhanced community education, culturally sensitive genetic counselling, and the systematic incorporation of hemoglobinopathy services into standard primary and maternal healthcare. Future research ought to examine integrated screening-counselling models implemented via primary health centers and community outreach platforms, and evaluate subsequent outcomes including screening uptake, informed reproductive decision-making, neonatal diagnosis, referral linkage, and continuity of care. Longitudinal cohort designs and implementation research methodologies would be especially beneficial for producing evidence regarding program efficacy and sustainability in tribal contexts.\u003c/p\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe author acknowledges the Directorate of Tribal Welfare, Ezhilagam, Chennai, for facilitating this study, and the Village Heads, Field Investigators, NGO volunteers, and all study participants for their support and cooperation during data collection. The authors gratefully acknowledge the financial support provided by SRM Medical College Hospital and Research Center, Faculty of Medicine and Health Sciences, SRMIST, Kattankulathur for bearing the defrayed costs of publishing this article.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor Contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eConceptualization: JKA and HGJ; Methodology: JKA and HGJ; Formal Analysis: JKA; Investigation: JKA; Data Curation: JKA; Writing - original draft: JKA; Writing - review and editing: JKA and HGJ; Supervision, methodological guidance and final approval: HGJ.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflict of Interest\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare no conflict of interest\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFinancial support for publishing the article was provided by SRM Medical College Hospital and Research Center, Faculty of Medicine and Health Sciences, SRMIST, Kattankulathur\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthical Considerations\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEthical approval was obtained from SRM Medical College Hospital and Research Centre with Ethics Clearance No: 8699/IEC/2023 prior to the commencement of the study. The study was conducted in accordance with the ethical principles outlined in the Declaration of Helsinki. Permission was also obtained from the Directorate of Tribal Welfare, Ezhilagam, Chennai (RC.No./TD/ C2/7665/ 2023), local administrative authorities, Non-Governmental Organization (NGO) Volunteers and tribal leaders.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eUse of Artificial Intelligence (AI) Tools\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eArtificial intelligence-assisted tools were used only for language editing. No AI tools were used for data analysis, interpretation, or decision-making. All scientific content and conclusions were developed and validated by the authors, who take full responsibility for the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent to Participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWritten informed consent was obtained from all participants before data collection. Confidentiality and anonymity were maintained throughout the study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for Publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot Applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eORCID ID\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMs. Kezia Angeline J - https://orcid.org/0000-0003-0879-3386\u003c/p\u003e\n\u003cp\u003eDr. Gladius Jennifer H - https://orcid.org/0000-0003-3934-1884\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData Availability\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe dataset used for analyzing the study’s findings are available from the corresponding author on reasonable request.\u003c/p\u003e\n"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eGanesh B, Rajakumar T, Acharya S, Devika S, Ramachandran V, Yuvaraj J, Nadkarni A, Rajasubramaniam S, Kaur H. 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Front Genet. 2022.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHockham C, Bhatt S, Colah R, Mukherjee MB, Penman BS, Gupta S, et al. The spatial epidemiology of sickle-cell anaemia in India. Sci Rep. 2018;8:17685.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNational Health Mission. Operational Guidelines: National Sickle Cell Anaemia Elimination Mission. Ministry of Health \u0026amp; Family Welfare, Government of India; 2023.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRao P et al. Prevalence and programmatic responses to sickle cell disease in tribal India: review and recommendations. Int J Community Med Public Health. 2024.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAgarwal RK et al. Prenatal hemoglobinopathy screening and prevention in India: large cross-sectional study 2023\u0026ndash;24. Indian J Obstet Gynaecol Public Health. 2025.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLinda A et al. Health of tribal populations in India: access, utilisation and health-seeking behaviour. Curr Med Issues India. 2024.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAbedin Z et al. Exploring barriers to health service accessibility for tribal women in India: a review (1995\u0026ndash;2023). Human Geographies. 2024.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eChinnaiyan S, Palanisamy B, Ayyasamy L. Prevalence of diabetes mellitus in Indian tribal population: a systematic review and meta-analysis. Int J Diabetes Developing Ctries. 2023;43:173\u0026ndash;83. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1007/s13410-022-01133-9\u003c/span\u003e\u003cspan address=\"10.1007/s13410-022-01133-9\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Hemoglobinopathies, Scheduled Tribes, Awareness, Health-seeking behaviour, Genetic screening","lastPublishedDoi":"10.21203/rs.3.rs-9130472/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9130472/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn India, hemoglobinopathies are a major public health concern, especially among Scheduled Tribe populations where socioeconomic disadvantage and limited access to preventive health services combine with genetic susceptibility. In many tribal settings, knowledge of inherited blood disorders and the use of genetic services are still low, despite the growth of national screening and control programs. Designing culturally appropriate preventive strategies requires an understanding of health-seeking behaviour patterns and community-level awareness.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAim\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study aimed to assess awareness of hemoglobinopathies and describe patterns of general health-seeking behaviour among Scheduled Tribe populations residing in selected districts of Tamil Nadu.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA community-based cross-sectional study was conducted among 400 study participants belonging to the tribes residing in Dharmapuri, Kancheepuram, Salem, and Nilgiris. A semi-structured questionnaire captured socio-demographic characteristics, awareness of hemoglobinopathies, and health-seeking behaviours. Reliability of the tool was assessed using Cronbach’s alpha. Data were analysed using descriptive statistics and proportions.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eOnly 24% of participants had heard about hemoglobinopathies. Among those aware, healthcare professionals (n = 56, 58%) were the main information sources. Awareness regarding inheritance was around 17% with around 80% unable to identify the cause. Majority of the study participants self-reported that their health status was fair (n = 164, 41%) and mentioned that they have a primary health center located nearby their residence (n = 237, 59%). Out of 276 female study participants, 12 (4%) were pregnant among whom, the utilization of genetic testing was around 67% (n = 8). Barriers included difficulties in convincing family members (94%) to seek a health facility at the time of illness.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDespite perceived access to healthcare services, the results show significant gaps in knowledge of hemoglobinopathies among the scheduled tribe communities. Household decision-making dynamics and sociocultural factors seem to have a significant impact on health-seeking behaviour. Tribal populations may benefit from early detection and prevention of inherited blood disorders if community-based awareness campaigns and culturally sensitive genetic counselling are strengthened through primary healthcare platforms.\u003c/p\u003e","manuscriptTitle":"From Knowledge to Care: Hemoglobinopathy Awareness and Health-Seeking Behaviour among selected Scheduled Tribes in Tamil Nadu","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-04-03 06:10:10","doi":"10.21203/rs.3.rs-9130472/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"reviewerAgreed","content":"162691820072459762085987694357367997493","date":"2026-04-16T09:10:18+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"204942487807561629356640986408245941494","date":"2026-04-15T10:41:51+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-03-29T07:52:31+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-03-25T13:19:02+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2026-03-24T10:19:22+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-03-24T08:46:36+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Health Services Research","date":"2026-03-24T08:41:16+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"f9d390f7-2862-49ae-acdf-dcb32dc61c5a","owner":[],"postedDate":"April 3rd, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-03T06:10:10+00:00","versionOfRecord":[],"versionCreatedAt":"2026-04-03 06:10:10","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9130472","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9130472","identity":"rs-9130472","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}