Abstract
Sickle cell disease (SCD) poses a major health burden among the Tharu community in Bardiya, Nepal, where gaps in knowledge, attitudes, and practices hinder effective disease prevention and management. This study aimed to assess the factors influencing knowledge, attitudes, and practice regarding SCD among the Tharu community in Bardiya District in Nepal. A community-based cross-sectional study was conducted among 423 individuals from the Tharu community across 3 municipalities in Bardiya District, Nepal, from April to September 2024, using a multi-stage random sampling technique. Data were collected through face-to-face interviews using a semi-structured questionnaire. Pearson’s chi-square test and multivariable logistic regression analysis were performed at a 5% significance level to determine the associated factors. Of the total, 74.5% of the respondents demonstrated good knowledge, 70% exhibited positive attitudes toward SCD, while 81.8% displayed poor practices. Illiteracy and occupations such as laborer, farmer, housewife, and others were significantly associated with poor knowledge, negative attitudes, and poor practices. Male gender was linked to both poor knowledge and poor practice. Belonging to lower wealth quintiles was associated with negative attitudes and poor practices. Being aged ≥30 years was associated with poor practice only. Despite good knowledge and positive attitudes, SCD-related practices were poor among the Tharu community, influenced by age, gender, education, occupation, and income. Targeted, culturally appropriate interventions including awareness campaigns, school-based education, accessible screening, and genetic counseling are essential to improve practices and reduce SCD burden in Nepal.
Keywords: attitude, genetic counseling, knowledge, practice, sickle cell disease, screening, Tharu community
Introduction
Sickle cell disease (SCD) is a major global health concern, affecting approximately 8 million people worldwide and accounting for an estimated 376 000 deaths annually. 1 Each year, around 515 000 infants are born with SCD globally. 1 In addition, over 300 million people worldwide carry the sickle cell trait (HbAS), which can be passed on to future generations. 2 As the most common severe monogenic disorder, SCD was historically associated with malaria-endemic regions in Asia and sub-Saharan Africa but is now prevalent across diverse geographical areas. 3 The disease is caused by a mutation in the sixth codon of the β-globin gene of hemoglobin (Hb), where glutamic acid is replaced by valine, resulting in chronic hemolytic anemia. 4 This genetic alteration leads to the production of abnormal hemoglobin, causing red blood cells to become stiff and crescent-shaped (sickle-shaped). These malformed cells tends to adhere to vascular endothelium and block small blood vessels, impairing oxygen delivery to tissues. 5 Consequently, individuals with SCD are more susceptible to frequent infections, tissue hypoxia, acute and chronic pain, persistent anemia, and progressive multi-organ damage. 6
In Nepal, ethnic groups such as the indigenous Tharu population, originating from the malaria-endemic Terai region, have the highest prevalence of SCD. Approximately 58.3% of all SCD cases are found in the Tharu community, which constitutes 6.6% of Nepal’s total population. 7 Due to its high prevalence among the Tharu population, the disease has been stigmatized as the “Tharu Disease.” 8 SCD limits the lifespan of affected individuals and is particularly evident in developing countries, where in lack of appropriate resources for confirmatory diagnosis and disease management, approximately 80% of SCD cases in newborns remains undiagnosed, with less than half surviving beyond 5 years of age. 9 Increased hospitalization, acute chest syndrome, strokes in children, splenic sequestration, and premature death are among the severe complications associated with SCD.10,11
To assist SCD-diagnosed patients with their treatment expenses, the Nepal government has introduced a free treatment provision, offering a one-time payment of NPR 100 000 per individual. However, this amount is often insufficient to cover the full cost of SCD treatment. 12 In 2017, the Epidemiology and Disease Control Division of Nepal’s Ministry of Health developed the National Guideline for Sickle Cell Disease and Thalassemia Management to provide healthcare professionals with protocols for diagnosing, treating, and managing SCD and thalassemia. Additionally, 9 hospitals in Nepal have been designated and are actively involved in diagnosing and treating SCD, with a significant number of patients from the Tharu community. 13
Nevertheless, several challenges continue to hinder the effective management of SCD within the Tharu community of Nepal, including inadequate healthcare infrastructure, limited access to SCD screening and genetic counseling services, low levels of disease awareness, and widespresd misconceptions.8,14 Moreover, marriages between two carriers of SCD, often unaware of their genotype, account for 2% of annual SCD cases in developing countries. 15 Despite the high prevalence of SCD in the Tharu community of Nepal, there is paucity of data regarding their knowledge, attitudes, practices (KAP) toward the disease, as well as the factors influencing these dimensions.
To address this gap, the present study aimed to explore the factors associated with KAP regarding SCD among the Tharu community in Bardiya district, Nepal. Understanding the level of knowledge, attitudes, and practices along with the determinants of poor knowledge, negative attitudes, and ineffective practices, is critical for addressing healthcare disparities and misconceptions. Such insights can inform culturally appropriate and targeted health interventions, enabling individuals to make informed reproductive decisions and ultimately reducing the burden of SCD in future generations. The findings of this study are expected to foster better improved health outcomes, strengthen SCD prevention and awareness strategies, and contribute to evidence-based policy-making tailored to the needs of the Tharu population.
Methods
This study was conducted and reported in accordance with the STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) guidelines. 16
Study Design and Setting
A community-based cross-sectional study was conducted among the Tharu people in Bardiya District from April 2024 to September 2024. Tharu people are an ethnic group indigenous to the Terai region of southern Nepal and northern India. They speak the Tharu language and are officially recognized as a nationality by the Government of Nepal. 17
Bardiya District is in Lumbini Province in midwestern Nepal, covering an area of 2025 km2. It lies to the west of Banke District. According to the 2021 Nepal Census, Bardiya had a population of 460 831, of which 53.3% were Tharu. The district consists of 8 municipalities, including 6 urban and 2 rural municipalities. Out of 8 municipalities in the district, 3 randomly selected (Rajapur, Thakurbaba, and Madhuwan) were the study areas that have a high percentage of Tharu people, making them suitable for studies on indigenous communities. 18
Inclusion and Exclusion Criteria
Participants aged 18 years and above, who were members of the Tharu community and permanent residents of the selected municipalities, were included in the study. Participants who were unable to provide informed consent, had severe physical or mental illness, or were not available during the data collection period were excluded from the study.
Sample Size and Sampling Procedure
The sample size was determined using Cochran’s formula for estimating a proportion (n = z²pq/d²) with a 95% confidence interval, assuming a proportion of Tharu population of 53.3% based on the 2021 Census, and a 5% margin of error. The initial calculated sample size was 382, which was increased to 420 after adjusting for an anticipated 10% non-response rate. A multistage systematic random sampling technique was employed. First, 3 municipalities were randomly selected from the 6 municipalities of Bardiya District using the lottery method to ensure equal chance of selection. Although the selected municipalities (Rajapur, Thakurbaba, and Madhuwan) are geographically adjacent, their selection was purely by chance without considering location or other factors. The choice of 3 municipalities balanced the need for representativeness with practical considerations of time and resources. Subsequently, the Probability Proportionate to Size (PPS) method was used to determine the number of households to be selected from each municipality, based on household data from the 2021 Census to maintain representativeness. The first household in each municipality was randomly chosen near the ward office as the starting reference point. Following this, households were systematically selected at fixed intervals. If a selected household did not include members meeting the inclusion criteria, the adjacent household was selected instead. 19
Data Collection
A face-to-face interview technique was used for data collection, employing a pre-validated semi-structured questionnaire after taking written informed consent from all participants. The questionnaire was adapted from similar studies and other related documents investigating KAP on sickle cell disease.20 -24 Data was collected after obtaining approval from the District Health Office (DHO) and each selected municipality, as well as informed consent from all participants. All the necessary information from the participants was gathered in a single interview session. To minimize bias, all interviewers were trained uniformly before data collection. Standard operating procedures were followed to reduce interviewer bias. The questionnaire was pretested to ensure clarity, and translations were carefully reviewed to avoid misinterpretation. Selection bias was minimized by using systematic random sampling with PPS to ensure representativeness of the Tharu population across municipalities.
The questionnaire was divided into 4 sections. The first section collected general information about the respondents’ socio-demographic profiles, including age, gender, marital status, educational status, occupation, type of family, and International Wealth Index (IWI). The second section focused on the respondents’ knowledge of sickle cell disease, including sources of information, affected cells, morphological changes in red blood cells, gender and community prevalence, mode of inheritance, disease classification, clinical manifestations, preventive measures, treatment availability, and disease resistance associated with sickle cell disease.
Respondents’ attitudes were assessed using a five-point scale, including responses such as “strongly agree,” “agree,” “neutral,” “disagree,” and “strongly disagree.” This third section explored perceptions regarding sickle cell disease, including social isolation, religious views, disease progression, the necessity of regular health checkups, the importance of pre-marital and prenatal screening, the influence of genotypes on marriage decisions, legal implications, physical health, dietary beliefs, and the role of blood transfusions in treatment.
The fourth section consisted of structured, closed-ended questions offering dichotomous choices of “yes” or “no,” focused on practice-related topics such as testing for sickle cell disease, reasons for testing, counseling before marriage, counseling before planning a baby, antenatal screening for sickle cell disease, child screening for sickle cell disease, and participation in sickle cell disease awareness programs (See Supplementary File). Translation and back-translation (English-Nepali–English) of the questions were performed. To enhance the validity and reliability of the tool, the data collection instrument was pretested among 42 participants (10% of the total sample) in Bansgadi Municipality. The internal consistency of the tool was assessed through the calculation of Cronbach’s alpha, which was .81.
Measurements
The level of knowledge, attitude, and practice were the outcome variables. To calculate the level of knowledge, each of the 12 questions in the knowledge section was scored as 1 for a “correct” response and 0 for an “incorrect” response, giving an aggregate score of 12. A score of 0 to 6 was considered poor knowledge, while a score of 7 to 12 was considered good knowledge. Similarly, for attitude, a 12-item 5-point Likert scale was used, with the total score ranging from 0 to 48. A score of 0 to 24 indicated a positive attitude and a score of 25 to 48 indicated a negative attitude. Each of the 6 questions in the practice section was scored as 1 for a “yes” response and 0 for a “no” response, giving an aggregate score of 6. A score of 0 to 3 was considered poor practice, while a score of 4 to 6 was considered good practice.
Statistical Analysis
The collected data were entered into Epi-Data 3.1 and exported to the Statistical Analysis System (SAS) version 9.4 for statistical analysis. Missing or incomplete data were checked during data entry, and participants with substantial missing information on key outcome variables (KAP) were excluded from the final analysis. For minor missing values in non-outcome variables, listwise deletion was applied. Descriptive statistics, such as frequencies and percentages, were calculated for all variables. To assess associations between independent variables (eg, sociodemographic profile) and dependent variables (level of knowledge, attitude, and practice), the Pearson chi-square and likelihood ratio test was applied at a 95% confidence interval and a 5% level of significance. Variables found to be statistically significant in the bivariate analysis were included in the final model for multivariable analysis to calculate the adjusted odds ratio (aOR).
Ethical Approval
Ethical approval was obtained from the Institutional Review Committee of Star Hospital Research Center (SHRC-IRC), Nepal (Ref. no: 19/081/082) and data collection permission was taken from each municipality of Bardiya district.
Results
Of the total 423 respondents, nearly three-fourths (74.5%) had a good level of knowledge and a positive attitude (70%) toward SCD. In contrast, a higher proportion (81.8%) had poor level of practice regarding SCD (See Table 1).
Table 1.
Respondents Level of Knowledge, Attitude, and Practice Toward Sickle Cell Disease (n = 423).
| Variables | Category | n (%) |
|---|---|---|
| Level of knowledge | Good | 315 (74.5) |
| Poor | 108 (25.5) | |
| Level of attitude | Positive | 296 (70.0) |
| Negative | 127 (30.0) | |
| Level of practice | Good | 77 (18.2) |
| Poor | 346 (81.8) |
In the study, most respondents (61.3%) aged under 30 years, were female (60.8%), Hindus (99.5%), married (80.9%), literate (79.4%), and housewife (46.3%). More than half of the respondents (67.1%) belonged to a nuclear family, and only 27.42% reported household wealth (IWI) of the fourth quintile. From the chi-square test, it was observed that demographic characteristics including age, gender, education status, occupation, and household wealth were significantly associated with respondents level of knowledge, attitude, and practice (P < .05). However, no such relationship was evident between respondents religion, marital status, types of family, and their level of knowledge, attitude, and practice (P > .05; See Table 2).
Table 2.
Association Between Demographic Variables of Respondents and Their Levels of Knowledge, Attitude, and Practice Toward SCD (n = 423).
| Variables | n (%) | Level of knowledge | P-value | Level of attitude | P-value | Level of practice | P-value | |||
| Good n (%) |
Poor n (%) |
Positive n (%) |
Negative n (%) | Good n (%) | Poor n (%) | |||||
| Age | ||||||||||
| <30 | 260 (61.3) | 194 (74.6) | 66 (25.4) | .036 * | 187 (70.0) | 73 (30.0) | .046* | 60 (21.0) | 200 (79.0) | .021 * |
| ≥30 | 163 (38.7) | 121 (74.2) | 42 (25.7) | 110 (71) | 51 (29.0) | 44 (24.0) | 119 (76.0) | |||
| Gender | ||||||||||
| Male | 166 (39.2) | 120 (72.0) | 46 (28.0) | .037* | 110 (66.2) | 56 (33.8) | .067 * | 62 (37.3) | 104 (62.7) | .012 * |
| Female | 257 (60.8) | 191 (74.3) | 66 (25.7) | 180 (70.0) | 77 (30.0) | 70 (25.0) | 187 (75.0) | |||
| Religion | ||||||||||
| Hindu | 421(99.5) | 314 (74.6) | 107 (25.5) | .671 | 363 (86.3) | 58 (13.7) | .352 | 77 (18.3) | 344 (81.7) | .681 |
| Buddhist | 1 (.2) | 1 (100) | 0 (00) | 1 (100) | 0 (00) | 0 (00) | 1 (100) | |||
| Christian | 1 (.2) | 1 (100) | 0 (00) | 0 (00) | 1 (100) | 0 (00) | 1 (100) | |||
| Marital status # | ||||||||||
| Married | 342 (80.9) | 253 (74.0) | 89 (26.0) | .690 | 232 (67.8) | 110 (32.2) | .690 | 80 (21) | 262 (79) | .752 |
| Unmarried | 70 (16.5) | 50 (71.4) | 20 (28.7) | 48 (68.6) | 22 (31.4) | 18 (25.8) | 52 (74.2) | |||
| Widowed | 9 (2.1) | 6 (66.7) | 3 (33.3) | 5 (55.5) | 4 (45.5) | 1 (11.1) | 8 (88.9) | |||
| Divorced | 2 (.5) | 1 (50.0) | 1 (50.0) | 2 (100) | 0 (00) | 0 (00) | 2 (100) | |||
| Education status | ||||||||||
| Literate | 336 (79.4) | 242 (72.0) | 94 (28.0) | .016* | 222 (66.0) | 114 (24.0) | .024 * | 80 (23.9) | 256 (76.1) | .049 * |
| Illiterate | 87 (20.6) | 64 (73.5) | 23 (26.5) | 54 (62.0) | 33 (38.0) | 23 (26.5) | 64 (73.5) | |||
| Occupation # | ||||||||||
| Housewife | 196 (46.3) | 149 (76.0) | 47 (24.0) | .042* | 149 (76) | 47 (24) | .042 * | 42 (30.0) | 154 (70.0) | .039* |
| Labor | 32 (7.6) | 20 (62.5) | 12 (38.5) | 18 (56.3) | 14 (43.7) | 4 (18.5) | 28 (82.5) | |||
| Farmer | 94 (22.2) | 71 (76.0) | 23 (24.0) | 64 (68.0) | 30 (32.0) | 23 (24.0) | 71 (76.0) | |||
| Private jobs | 35 (8.3) | 25 (71.4) | 10 (28.6) | 20 (57.1) | 15 (42.9) | 10 (28.6) | 25 (71.4) | |||
| Government jobs | 27 (6.4) | 17 (63.0) | 10 (37.0) | 18 (66.6) | 9 (33.3) | 10 (37.0) | 17 (63.0) | |||
| Others | 39 (9.2) | 30 (76.5) | 9 (23.5) | 25 (64.2) | 14 (35.8) | 9 (23.5) | 30 (76.5) | |||
| Types of family | ||||||||||
| Nuclear | 284 (67.1) | 210 (74.0) | 74 (26.0) | .325 | 186 (65.5) | 98 (34.5) | .327 | 70 (21.0) | 214 (79.0) | .475 |
| Joint | 139 (32.9) | 98 (70.5) | 41 (29.5) | 89 (64.0) | 50 (36.0) | 39 (27.5) | 100 (72.5) | |||
| Household wealth (IWI) # | ||||||||||
| First quintile | 80 (18.9) | 59 (73.7) | 21 (26.3) | .011* | 56 (70) | 24 (30) | .037* | 16 (20.0) | 64 (80.0) | .003 * |
| Second quintile | 90 (21.27) | 67 (74.4) | 23 (25.6) | 60 (66.6) | 30 (33.4) | 14 (15.5) | 76 (84.5) | |||
| Third quintile | 85 (20.09) | 63 (74.1) | 22 (25.9) | 63 (74.1) | 22 (25.9) | 33 (38.8) | 52 (61.2) | |||
| Fourth quintile | 116 (27.42) | 88 (75.8) | 28 (24.2) | 78 (67.2) | 38 (32.8) | 43 (37.1) | 73 (62.9) | |||
| Fifth quintile | 52 (12.29) | 38 (73.1) | 14 (26.9) | 39 (75.0) | 13 (25.0) | 36 (69.2 | 31 (30.8) | |||
Likelihood ratio.
P < .05.
Multivariable analysis revealed several factors significantly associated with poor knowledge, attitudes, and poor practice regarding SCD. Respondents aged ≥ 30 had higher odds of poor practice (aOR: 1.12; 95% CI: 1.01-2.87) compared to those under 30, though age was not significantly associated with knowledge or attitude. Male respondents were more likely to exhibit poor knowledge (aOR: 0.88; 95% CI: 0.17-0.96) and poor practice (aOR: 1.51; 95% CI: 1.02-2.34) than females. Illiteracy was significantly associated with poor knowledge (aOR: 1.05; 95% CI: 1.01-2.43), negative attitudes (aOR: 1.23; 95% CI: 1.01-2.68), and poor practice (aOR: 1.09; 95% CI: 1.02-2.21) compared to literate individuals. Occupational status also emerged as a significant determinant, with laborers, farmers, housewives, and those categorized as “others” consistently had higher odds of poor knowledge, negative attitudes, and poor practices relative to government employees. Analysis by household wealth quintiles demonstrated that respondents in the lower wealth quintiles were significantly more likely to exhibit negative attitudes (first quintile: aOR: 0.71; 95% CI: 0.24-0.96, second quintile: aOR: 0.64; 95% CI: 0.28 -0.98) and poor practices, with progressively increasing odds from the first to fourth quintiles (first quintile: aOR: 0.20; 95% CI: 0.08-0.45, second: aOR: 0.15; 95% CI: 0.05-0.31, third: aOR: 0.50; 95% CI: 0.11-0.96, fourth: aOR: 0.46; 95% CI: 0.18-0.85) relative to those in the highest (fifth) quintile. However, no significant associations were observed between wealth quintiles and poor knowledge after adjustment (See Table 3).
Table 3.
Multi-Variable Analysis of Factors Associated With the Level of Knowledge, Attitude, and Practice (n = 423).
| Variables | Knowledge cOR (95%) |
Knowledge aOR (95%) |
Attitude cOR (95%) |
Attitude aOR (95%) |
Practice cOR (95%) |
Practice aOR (95%) |
| Age | ||||||
| ≥30 | 1.02 (0.65-1.60) | 0.98 (0.47-1.47) | 0.84 (0.55-1.29) | 0.71 (0.461-1.09) | 1.23 (1.08-2.93)* | 1.12 (1.01-2.87)* |
| <30 | Ref | Ref | Ref | |||
| Gender | ||||||
| Male | 0.90 (0.28-0.98)* | 0.88 (0.17-0.96)* | 0.84 (0.55-1.28) | 0.79 (0.49-1.16) | 1.59 (1.05-2.42)* | 1.51 (1.02-2.34)* |
| Female | Ref | Ref | Ref | |||
| Education status | ||||||
| Illiterate | 1.08 (1.03-2.67)* | 1.05 (1.01-2.43)* | 1.59 (1.10-3.09)* | 1.23 (1.01- 2.68)* | 1.15 (1.08-2.97)* | 1.09 (1.02-2.21)** |
| Literate | Ref | Ref | Ref | |||
| Occupation | ||||||
| Labor | 1.23 (1.09-3.98)* | 1.11 (1.04-2.87)** | 0.65 (0.22-1.09) | 0.58 (0.18-0.91)** | 0.24 (0.06-0.95)** | 0.21 (0.04-0.91)** |
| Farmer | 1.82 (1.06-2.52)** | 1.61 (1.02-2.12)* | 1.07 (1.01-2.72)* | 1.01 (1.005-1.98)* | 0.55 (0.09-0.98)* | 0.50 (0.07-0.89)** |
| Private jobs | 1.47 (0.50-4.29) | 1.31 (0.47-3.67) | 0.67 (0.22-2.07) | 0.59 (0.19-1.98) | 0.68 (0.26-1.78) | 0.58 (0.23-1.65) |
| Housewife | 1.87 (1.23-3.36)* | 1.64 (1.110-3.12)* | 1.59 (1.10-3.76)* | 1.35 (1.01-2.89)* | 0.46 (0.20-0.86)* | 0.40 (0.19-0.79)** |
| others | 1.96 (1.09-4.75) | 1.72 (1.07-3.328)* | 0.90 (0.33-1.07) | 0.85 (0.26-0.99)* | 0.51 (0.11-1.07) | 0.45 (0.08-0.97)* |
| Government job | Ref | Ref | Ref | |||
| Household wealth (IWI) | ||||||
| First QUINTILE | 1.04 (0.50-2.14) | 0.98 (0.697-5.874) | 0.78 (0.35-1.02) | 0.71 (0.24-0.96)* | 0.22 (0.10-0.48)** | 0.20 (0.08-0.45)** |
| Second quintile | 1.07 (1.03-2.15)* | 0.98 (0.97-1.12) | 0.67 (0.31-1.04) | 0.64 (0.28-0.98)* | 0.16 (0.07-0.38)** | 0.15 (0.05-0.31)* |
| Third quintile | 1.05 (1.01-2.16)* | 0.92 (0.91-1.93) | 0.95 (0.41-2.21) | 0.91 (0.35-2.11) | 0.55 (0.28-1.03) | 0.50 (0.11-0.96)* |
| Fourth quintile | 1.16 (1.08-2.30)* | 0.93 (0.89-2.19) | 0.68 (0.32-1.42) | 0.62 (0.25-1.28) | 0.51 (0.27-0.95)* | 0.46 (0.18-0.85)* |
| Fifth quintile | Ref | Ref | Ref | |||
P < .01. *P < .05.
Discussion
This study evaluated the levels of knowledge, attitude, and practice regarding SCD, as well as the factors influencing these aspects, among members of the Tharu Community in 3 randomly selected municipalities of Bardiya district. The findings revealed that a significant proportion of respondents demonstrated good knowledge of SCD, which appeared to be associated with a positive attitude, observed in nearly three-fourths of the respondents. This finding is consistent with prior research demonstrating a strong association between knowledge and attitude toward SCD (P < .001). 21 In contrast, a study conducted in another region of Nepal reported poor knowledge in 44.6% of its respondents, 25 while studies from Saudi Arabia and Cameroon reported even lower levels of knowledge, at 28.8% and 20.5%, respectively.26,27
Despite encouraging levels of knowledge and attitude, the present study identifies a concerning gap in practice, with the majority of respondents exhibiting poor practice related to SCD. Similarly, a study from neighboring country India reported low levels across all 3 KAP domains. Major barriers to effective practice included limited awareness about SCD, fear of social stigma and isolation, and apprehensions regarding marriage refusals, all of which were significant deterrents to participation in screening programs. 23
Although good knowledge and a positive attitude are essential, they do not necessarily translate into good practice. This observation is supported by a previous study that reported no significant association between knowledge and practice (P = .006) and between attitude and practice (P = .007) toward SCD. 21 In the present study, the persistently poor practices observed may reflect a significant gap in the availability and accessibility of SCD screening services in Bardiya district, a gap that directly impact family decision-making and disease control efforts. While the District Hospital in Bardiya has been designated by the Nepal government to provide diagnostic and treatment services for SCD, 13 challenges related to implementation, outreach, and service utilization may continue to hinder effective disease management.
The World Health Organization (WHO) recommends establishing more autonomous centers in regions with a high prevalence of hemoglobin disorders and strongly advocates for universal carrier screening and genetic counseling in such settings. 28 Additional barriers that may have influenced the poor practice observed in this study include time constraints for visiting hospitals, adherence to traditional forms of treatment, and the belief that screening is necessary only when one’s health deteriorates.
Among the socio-demographic variables studied to identify determinants of health outcomes in the Tharu community, gender, education status, and occupation were significantly associated with respondents’ level of knowledge. A study from Nigeria also reported gender as the primary factor influencing knowledge, 20 while education, occupation, and household wealth affected attitudes. Age and gender further influenced practices, whereas variables such as religion, marital status, and family type were not significantly associated with any KAP domain.
A statistically significant association was observed between gender and both knowledge and practice levels. Male respondents had higher odds of poor knowledge and poor practices, which may be explained by the predominance of female participants in the study and the higher female population in Bardiya district, 243 134 females compared to 216 766 males, according to the Nepal Census 2021. 18 Additionally, men often have demanding work schedules, travel frequently, and may lack time or motivation to engage with awareness programs or utilize services such as screening and counseling. This aligns with other findings where 61.8% of study participants were female, indicating that females are more likely to access healthcare services. 6 In contrast, a recent study on SCD from Nigeria reported higher level of knowledge among male respondents. 21
The generally good level of knowledge and positive attitudes in this study may be attributed to the fact that over three-fourths of respondents were literate. Multivariable analysis revealed that illiterate individuals were more likely to have poor knowledge and hold negative attitudes toward SCD than their literate counterparts. Literacy likely enhances individuals access to evidence-based information, reduces the prevalence of misconceptions, and improves their ability to apply theoretical knowledge in real-life settings.
Occupation also played a crucial role in shaping knowledge and attitude toward SCD. Compared to government employees, respondents working as laborers, farmers, housewives, or those under other category had significantly poor knowledge and negative attitudes. This disparity may be attributed to the higher educational attainment and better access to health information and services among government employees. While household income was significantly associated with knowledge in the unadjusted model, the association lost significance after adjustment, suggesting that income alone is not a strong independent predictor of knowledge. Nevertheless, income continued to show a significant relationship with attitude and practice. Individuals from the lowest income quintile were more likely to harbor negative attitudes and engage in poor practices compared to those in the higher income groups. Moreover, respondents aged ≥30 years, males, illiterate individuals, and those who were laborers, farmers, housewives, or others exhibited higher odds of poor practice, highlighting the compound influence of age, literacy, and occupation on health-related behaviors.
Respondents aged ≥30 years may be more influenced by traditional beliefs, have had limited exposure to formal health education or digital media, and face greater time constraints due to work and family responsibilities. Additionally, reduced digital literacy and lower engagement with modern health communication platforms may hinder their adoption of preventive measures, collectively contributing to poorer SCD-related practices in this demographic group.
These findings underscore the urgent need for targeted, culturally sensitive educational campaigns to address misconceptions and limited healthcare engagement driven by age, gender, occupation, literacy, and socioeconomic status. Empowering young, literate individuals of the Tharu community to lead health promotion initiatives, coupled with integrating SCD education into school curricula, could foster early awareness, reduce stigma, and promote informed decision-making. This study offers actionable insights for policymakers, healthcare professionals, and community-based organizations to improve SCD-related behaviors through accessible screening, genetic counseling, and behavior-driven interventions. Expanding such efforts through government and non-governmental collaboration can strengthen national guidelines, enhance insurance coverage, and drive evidence-based programing to reduce the burden of SCD in Nepal.
Importantly, while grounded in the rural Nepalese context, these findings have broad relevance for other low-and middle-income countries facing similar structural and sociocultural challenges. Populations in sub-Saharan Africa, South Asia, and Latin America, particularly among indigenous or underserved communities contend with poor awareness, stigmatization, limited access to diagnostics, and inadequate health infrastructure. The community-based, context-sensitive approach presented in this study offers a transferable model for improving public health engagement and SCD management globally. Furthermore, the findings align with the World Health Organization’s strategy for the control of hemoglobinopathies, underscoring the global importance of early education, decentralized screening, and community involvement. As one of the first studies to comprehensively assess knowledge, attitudes, and practices related to SCD among the Tharu population, it informs national health priorities while contributing valuable insights to the global discourse on health equity and genetic disease prevention in marginalized populations.
Despite its strengths, several limitations should be acknowledged. First, the focus on 3 municipalities in Bardiya District may limit the generalizability of the findings to the broader Tharu population or other geographical regions. Second, the cross-sectional study design restricts causal inference between variables. Third, while the study identifies significant gaps in SCD-related practice, it did not examined systemic barriers, such as access to care, cost, or logistical constraints that may underlie the poor translation of knowledge into action. Finally, reliance on self-reported responses may introduce recall and social desirability biases.
Conclusion
This study revealed a significant gap between knowledge, attitude and practice toward SCD within the Tharu community in Bardiya, Nepal. While the majority of respondents demonstrated good knowledge and positive attitudes, SCD-related practices remained notably poor. Socio-demographic factors such as age, gender, education, occupation, and income were key determinants influencing these domains. These findings underscore the urgent need for targeted, culturally sensitive interventions, such as nationwide awareness campaigns, school-based SCD education, accessible screening programs, genetic counseling services, and expanded insurance coverage. Enhancing these efforts will help translate awareness into action, ultimately improving health outcomes, reducing SCD prevalence, and enhancing the well-being of high-risk communities like the Tharu.
Supplemental Material
Supplemental material, sj-docx-1-inq-10.1177_00469580251371877 for Factors Influencing Knowledge, Attitudes, and Practices Regarding Sickle Cell Disease Among the Tharu Community in Bardiya District, Nepal by Sabina Sankhi, Bharati Kusumya Tharu, Narendra Chaudhary, Sabita Yadav, Rasmila Tamang and Nirmal Raj Marasine in INQUIRY: The Journal of Health Care Organization, Provision, and Financing
Supplemental material, sj-docx-2-inq-10.1177_00469580251371877 for Factors Influencing Knowledge, Attitudes, and Practices Regarding Sickle Cell Disease Among the Tharu Community in Bardiya District, Nepal by Sabina Sankhi, Bharati Kusumya Tharu, Narendra Chaudhary, Sabita Yadav, Rasmila Tamang and Nirmal Raj Marasine in INQUIRY: The Journal of Health Care Organization, Provision, and Financing
Acknowledgments
We would like to thank all municipalities and respondents who participated in this study, for their valuable time and information. Without them, this study wouldn’t have been possible.
Footnotes
ORCID iDs: Sabina Sankhi 
https://orcid.org/0000-0002-7881-2864
Nirmal Raj Marasine
https://orcid.org/0000-0003-4353-382X
Ethical Considerations: Ethical approval for this study was obtained from the Institutional Review Committee of Star Hospital Research Center (SHRC-IRC), Nepal (Ref. no: 19/081/082).
Consent to Participate: Written informed consent was obtained from all participants prior to their enrollment in the study, and participation was entirely voluntary. The confidentiality and anonymity of participants were ensured throughout the research process.
Author Contributions: SS: Conceptualization, methodology, data curation, validation, formal analysis, visualization, project administration, resources, writing—original draft, Writing—review & editing; BKT: Conceptualization, methodology, data curation, investigation, project administration; NC & SY: Conceptualization, data curation, project administration; RT: Writing—review & editing; NRM: methodology, validation, formal analysis, visualization, project administration, resources, writing—original draft, supervision, Writing—review & editing.
Funding: The authors received no financial support for the research, authorship, and/or publication of this article.
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement: The raw data used to support the findings of this study are made available from the corresponding author upon reasonable request.
Supplemental Material: Supplemental material for this article is available online.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Supplemental material, sj-docx-1-inq-10.1177_00469580251371877 for Factors Influencing Knowledge, Attitudes, and Practices Regarding Sickle Cell Disease Among the Tharu Community in Bardiya District, Nepal by Sabina Sankhi, Bharati Kusumya Tharu, Narendra Chaudhary, Sabita Yadav, Rasmila Tamang and Nirmal Raj Marasine in INQUIRY: The Journal of Health Care Organization, Provision, and Financing
Supplemental material, sj-docx-2-inq-10.1177_00469580251371877 for Factors Influencing Knowledge, Attitudes, and Practices Regarding Sickle Cell Disease Among the Tharu Community in Bardiya District, Nepal by Sabina Sankhi, Bharati Kusumya Tharu, Narendra Chaudhary, Sabita Yadav, Rasmila Tamang and Nirmal Raj Marasine in INQUIRY: The Journal of Health Care Organization, Provision, and Financing