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Journal of Community Genetics logoLink to Journal of Community Genetics
. 2022 Feb 1;13(3):329–338. doi: 10.1007/s12687-022-00578-z

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

Bontha V Babu 1,✉, Parikipandla Sridevi 2, Shaily B Surti 3, Manoranjan Ranjit 4, Deepa Bhat 5, Jatin Sarmah 6, Godi Sudhakar 7, Yogita Sharma 1
PMCID: PMC9270504  PMID: 35103923

Abstract

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

Keywords: Sickle cell disease, Haemoglobinopathies, Knowledge, Health workers, Tribal, Qualitative research

Introduction

SCD is a common genetic disease, with more than 300,000 births each year with SCD (Piel et al. 2013a). And India, along with Nigeria and Congo, shoulders half of the global burden of SCD (Aygun and Odame 2012). India has been ranked the second-worst affected nation in SCD-affected births (Piel et al. 2013b). Another exacerbating issue in India is that these SCD births and the prevalence of sickle haemoglobin genes are high among tribal communities compared with the general population. About 73% of the Indians with sickle haemoglobin genes are from tribal communities (Rao 1984). The tribal communities of India constitute 104 million people accounting for 8.6% of India’s total population. Usually, the tribes live remotely in hilly forest areas. The health status and healthcare-seeking behaviour of these communities are poor (Government of India 2018).

Despite a high burden of SCD among these vulnerable communities, there are no state-led public health programmes or a health systems approach, except a draft policy notified by the Indian government (Government of India 2016; Raman et al. 2021). There is no referral system for SCD, even for an emergency in the public health care system in the tribal areas (Geethakumari et al. 2021). However, due to growing demand and advocacy, the Indian government is likely to roll out an SCD or haemoglobinopathies programme. The draft policy guidelines are developed under the Rashtriya Bal Swasthya Karyakram (RBSK), meaning the national child health programme of the National Health Mission, which envisages achieving universal access to equitable, affordable, and quality health care services (Government of India 2016).

In the current study areas, a researchers-led intervention is being implemented through the primary health care system on a pilot basis (Babu et al. 2020). This study is an intervention to improve the health system’s capacity and mobilise the communities for SCD screening and management among the tribal population in India. In India, the PHC is a basic healthcare unit in rural areas, functions closely with the people, provides integrated curative and preventive health care, and undertakes health promotion activities. The PHC and its subhealth centres staffed by health workers are important for delivering health care services to the rural population (Government of India 2012). The proposed SCD or haemoglobinopathies programme is to be implemented through this system of primary health care, and most of the activities under this programme have to be accomplished by the peripheral health workers. Hence, these health workers’ role is essential. The peripheral health workers, who work closely with the community for various preventive and curative services through the subhealth centres and PHCs, should identify potential SCD patients, specifically children and pregnant women. These health workers are expected to guide people to go for screening and treatment and support the known patients. In India, strengthening primary health care and the success of preventive health interventions depend on the involvement/participation of the peripheral health workers (Sundararaman et al. 2012). How health workers deliver information influences the healthcare-seeking behaviour of the households (Saprii et al. 2015; Seth et al. 2017). Thus the health workers’ knowledge of SCD is crucial in successfully implementing the SCD programmes. And the SCD programme should include training and orientation of the health workers on SCD-related knowledge and its management. Hence, a formative study has been undertaken before initiating the abovementioned intervention to understand the extent of knowledge and experience of peripheral health workers working in SCD-endemic tribal areas of India.

Methodology

This qualitative inquiry is a part of the formative phase, conducted before implementing an intervention to improve the health system’s capacity and mobilise the communities for SCD screening and management among the tribal population in India (Babu et al. 2020). Institutional ethics committees of the six participating institutes approved the study protocol. Each of the six ethics committees approved the study for the corresponding district. All the study participants were informed about the study’s purpose, and their consent was obtained before conducting interviews.

Study setting and design

The study was implemented in six districts that are endemic to SCD and located in different geographical zones. These districts are Anuppur (in Madhya Pradesh state), Chhoteudepur (in Gujarat state), Kandhamal (in Odisha state), Mysuru (in Karnataka state), Udalguri (in Assam state), and Visakhapatnam (in Andhra Pradesh state). These districts have not been exposed to any serious SCD programmes. Hence, an intervention is being conducted in these districts. Details of the study area and the proposed intervention are available elsewhere (Babu et al. 2020).

This formative qualitative study used a grounded approach to understand the peripheral health workers’ knowledge and perceptions on SCD (Walker and Myrick 2006). The principles of qualitative research were followed during this study. And the in-depth interview was employed. The purpose of the in-depth interview is to learn about the participants’ views on the topic of interest and understand their perceptions (World Health Organization 1994).

Study participants and selection

The participants are peripheral health workers employed in the primary health care system in these districts. These health workers are of two categories. One category is regular health workers (RHWs), and the other is community health workers (CHWs). RHWs include auxiliary nurse-midwives (ANMs) (who have a 2-year diploma in auxillary nurse-midwifery) and nurses (who have a 3.5-year diploma in general nursing and midwifery or a 4-year bachelor degree in nursing) and other trained personnel like health assistants. The CHWs are accredited social health activists (ASHAs), trained community health volunteers with 8 years of formal education and residents of the village. Description of various health workers in India is given elsewhere (Rao et al. 2011).

This study is based on a sample of 120 health workers. From each district, 20 health workers were selected. These 20 in a district were sampled from four PHCs. In each PHC, one RHW from the village in which PHC is located, two RHWs from the villages in which subhealth centres are located and two CHWs from villages having no health facility. It was decided that these are the minimum numbers and thought to increase the sample size based on the data saturation. However, no such need arose. An interview with one RHW from Chotaudepur (Gujarat state) was incomplete and excluded from the analysis. All the health workers are women, except a RHW from the Visakhapatnam district. Most of them are in the age group of 31–40 years (41.2%) followed by 26.9% in 41–50 years, 26% in 21–30 years, and 5.9% in more than 50 years of the age group.

Data collection

The topic guide for the interview was built based on the previous studies conducted in other countries (Gomes et al. 2011; 2015; Hsu et al. 2016; Muoghalu and Awolowo 2017; Adegoke et al. 2018) and brain-storming among the researchers. Initially, the topic guide was prepared in English and translated to the local languages of the districts. These translated versions were back-translated to English by other persons (who are not involved in English to local language translation).

Interviews were conducted at the time of participants’ convenience with prior appointment by following standard methods (World Health Organization 1994; Pelto and Pelto 1978). The interviews were conducted in the local language, and the duration of the interviews ranged from 40 to 60 min. All interviews were audio-recorded with the consent of the participants. At the end of the interview, the content is reviewed and thoroughly examined for new information.

Data management and analysis

All interviews were transcribed by listening to the audio and simultaneously checking the adjunct notes taken during the interviews. The transcripts were later translated into English. Some were back-translated to check the linguistic reliability and correctness during translation. Standard guidelines of transcription and translation of qualitative data were followed (Mergenthaler and Stinson 1992; Mclellan et al. 2003). The deductive approach of data coding was adopted. Themes were identified, and thematic content analysis was done (Kyngäs et al. 2019). The data were read several times thoroughly and organised under several heads based on the themes. Under each theme, several issues (subthemes) were identified, and relevant quotes were segregated under each issue. Inferences were drawn by repeated reading of these quotes of each issue/subtheme. The analysis was carried out separately by the lead author as well as by the other authors. The inferences were drawn by constant comparison and cross-checking. And the inferences drawn by different authors corroborated with each other. During this process, some of the inferences were quantified as proportions to the total number of participants. Reporting guidelines of Consolidated Criteria for Reporting Qualitative Research (COREQ) were used to ensure the transparent presentation of methodology (Tong et al. 2007). Quotes (verbatim) were included in the results, and an anonymous identifier accompanied all quotes to demonstrate that various participants were represented across the results. The themes and their broader findings are given in Table 1.

Table 1.

Summary of the findings

Theme Subtheme Findings
General awareness of SCD Aware of SCD • 65 of 71 of RHWs (92%) and 37 of 48 CHWs (78%) aware of SCD
• Aware of SCD as a blood disorder
Knew SCD patients • Seen the patients though they have not been involved in the treatment
Knowledge of the cause of SCD Cause of SCD • 64 of 119 total HWs (54%), 44 of 71 RHWs (62%), and 20 of 48 CHWs (42%) reported that it is hereditary and attributed to the high prevalence of consanguineous marriages.
• Malnutrition is another reason cited by the most.
Knowledge of SCD-related symptoms General symptoms • 58 of 71 RHWs (81%) and 29 of 48 CHWs (60%) could tell some typical symptoms of SCD.
• Some felt that anaemia is the major manifestation of SCD.
• Children with SCD are not able to play and study like other children.
Serious/life-threatening symptoms • A majority mentioned that severe anaemia or lack of blood is a serious symptom.
• A few mentioned that pains and jaundice are serious symptoms.
• Health workers from Gujarat and Orissa mentioned that severe anaemia is a serious problem for pregnant women.
Practices of the management of SCD Routine management • A small proportion of health workers—19 of 71 RHWs (27%) and 11 of 48 CHWs (24%) dealt with SCD cases by giving symptomatic treatment.
• None of the health workers has any expertise in managing SCD patients.
• No specific management/treatment is available in PHCs.
• None of the PHCs has the diagnosis facility and supply of drugs required for SCD management.
• Mostly, the suspected patients are referred to the district hospital or medical college hospital.
Emergency management • None of the PHCs is able to provide any emergency care to SCD patients and refer then to a tertiary care hospital.
Knowledge on the prevention of SCD Prevention of SCD • A majority, 56 of 71 RHWs (79%) and 34 of 48 CHWs (71%) said that SCD is preventable; however, comprehensive knowledge of prevention is lacking.
• A few mentioned that SCD can be prevented by screening and premarital counselling.
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SCD, sickle cell disease; HWs, health workers; RHWs, regular health workers; CHWs, community health workers; PHC, primary health centre

Results

General awareness of SCD

Data revealed that the majority of health workers (92% of RHWs and 78% of CHWs) were aware of SCD. Only in Gujarat, Odisha, and Karnataka, all the health workers were aware of SCD. Some health workers from Gujarat distinguished the SCD and sickle cell traits. The majority of health workers from all districts, who are aware of SCD, referred to it as a blood disorder or blood deficiency. And some of them mentioned that blood cells change their shape and become sickle shaped. Health workers from Odisha said that it is a disease of cold and appear in the cold weather.

An ANM from Gujarat narrated, “Sickle cell is an inherited disease. It is caused by a defective gene in parents. If there is a sickle cell, the blood cell becomes sickle-shaped. The round cell can circulate easily, but sickle-shaped cell, it stuck at the joint, which causes pain.”

Another ANM from Karnataka said, “It is a genetic disorder as a result of consanguineous marriages, oxygen levels will come down……”

An ASHA working in Gujarat said, “In the sickle cell, the red blood cells produced in sickle shape”.

The following quotes of an ANM from Madhya Pradesh and an ASHA from Gujarat, respectively, indicate that the health workers were aware of the disease but have no understanding of the disease.

“Yes, in SCD disease, the blood changes into water and due to which there is no blood in the body.”

“I got to know about this disease from kids, their father mother was not there, so I took them to the medical (hospital), there they told that he has sickling. From there, I got to know. I know that it is a cold disease when someone feels cold, then joints pain, from there I understood that it’s a cold disease.”

Health workers’ interaction with SCD patients

The majority of health workers, mainly from Gujarat and Odisha, have seen SCD patients during their routine work, but they rarely handled or managed these cases. From other sites, such instances were rare. Most of these health workers perceived the seriousness of the disease and acknowledged that the patients need treatment at higher-level hospitals. Some of the health workers could link SCD to the tribal population. However, there are variations in this perception. Health workers from Odisha believed that people who belonged to the scheduled castes (socioeconomically disadvantaged caste group, who were once considered “untouchables”) are more affected than the tribal population. Health workers from Assam believe that SCD is prevalent in tea-garden “adivasi” (though the adivasi is a collective term for tribal/indigenous people in India, in the Assam context, the Adivasi means the tribes migrated long back from central India to work in tea gardens in Assam) than in other tribal communities. Some health workers from Karnataka felt that people living on hilltops get this disease. Health workers of other places did not mention any community-based association with SCD occurrence and mentioned that it occurs in people of any caste.

An ANM from Gujarat said, “there are two people, one has the disease, and another has the trait. Both are on medication…..”

An ASHA from Odisha too said similarly, “Hmm…. 2-3 children are in my area. They are coming to us for pain. I was telling them to go to medical (hospital in the town)…..”

An ANM from Odisha further said, “It is sure that it is a disease of schedules caste people and hence they refuse to get tested themselves for SCD.”

A staff nurse in Karnataka said, “I have heard that our tribal people have this disease. Not seen them as they visit Mysore. They don’t come to PHC.”

An ANM from Madhya Pradesh said, “not seen any …. This disease never belongs to any community here.”

In addition, the health workers mentioned some precipitating factors concerning the occurrence of SCD. Across the study sites, health workers have the perception that anaemia is an important precipitating factor, and they mentioned that “lack or loss of blood”, “less haemoglobin”, “reduced blood count”, “damaged blood cells”, etc. lead to hospitalisation of these patients. Health workers from Gujarat said that extreme weather conditions like hot and cold climate, high altitude, and physical exertion are precipitating factors. Health workers from Odisha also mentioned that cold weather and physical exertion as precipitating factors. In addition, the health workers from Gujarat mentioned that excessive consumption of corn and fermented food caused SCD.

An ANM in Gujarat said, “Yes…., their dietary habits should be changed. People in this area should eat more wheat, sorghum and millets instead of corn”.

Knowledge of cause of SCD

Nearly half of the health workers, particularly the CHWs, do not know the cause of SCD. Some health workers know that it transmits from parents to children. Some associated its hereditary nature with a high prevalence of consanguineous marriages among tribal communities. In addition, health workers offered some explanations like observing the disease within the family and mentioned phrases like—“they marry among themselves”, “family had defective gene”, etc. Some believed that it transmits through mothers only, and some confused that from whom it transmits, father, mother, or both. Some health workers mentioned that fault in the blood is the reason for SCD. A good number of health workers of all states attributed the cause to poor nutrition. Health workers from Odisha further mentioned that food imbalance causes SCD. Health workers from Gujarat attributed the cause of SCD to the eating of corn. They attributed that eating corn leads to malnutrition, and subsequently, people get SCD.

An ASHA from Karnataka explained, “I have seen it in people of the same family and those who marry inside (consanguineous marriages).”

Similarly, an ANM from Gujarat said, “If both positive persons get married, it will pass into next generation, and child will be born with sickle cell disease.”

Another ANM from Gujarat, who believe that nutrition is the reason for SCD, narrated, “In the village, there is a lack of hygiene towards health. The most common diet here is corn. They will get no nutrition from corn. Despite telling them so many times to eat wheat and other food, people don't eat. So they get this diseased.”

An ASHA from Karnataka said, “Don’t know, may be because of malnutrition”.

Knowledge of symptoms of SCD

A good number of health workers (81% of RHWs and 60% of CHWs) could tell at least one symptom of SCD. They include pain in hands, feet, and joints, abdominal swelling in children, jaundice, delayed child growth, etc. However, some health workers felt that anaemia is a major manifestation of SCD and mentioned some of the symptoms of general anaemia, like pallor, fatigue, etc. Some health workers from Gujarat mentioned that children with SCD could not play and study like other children. In addition, they listed several other symptoms of SCD, which the patients possess. Based on the data, it is clear that most of the health workers, particularly the CHWs, do not possess much knowledge of SCD-related symptoms.

An ANM from Gujarat said, “Patients with sickle cell often have pain in the extremities, abdominal pain, often blood clotting, swelling, fever, headache, dizziness, fatigue, and decreased blood”.

Another ANM from Karnataka said, “…they’ll be totally malnourished, and they can’t eat.”

Regarding life-threatening or serious symptoms, health workers mentioned that severe anaemia or lack of blood is a serious symptom among SCD patients. A few mentioned that pain and jaundice are serious symptoms. A few health workers from Gujarat and Odisha mentioned that severe anaemia is a serious problem for pregnant women during delivery. They may face more complications and need a caesarean section. Also, these health workers mentioned severe pain as a life-threatening symptom.

A staff nurse from Karnataka said on life-threatening symptoms, “Yes, because of low oxygen levels, it affects the liver, kidneys, nerves”.

And an ANM added, “Yes, it affects the heart, lungs, kidneys, and also bones, and the patient dies”.

Practices related to the management of SCD

In almost all PHCs, no specific management/treatment is available for SCD patients. Only symptomatic treatment is available for anaemia in these PHCs. PHCs have only the medicines like iron and folic acid tablets and painkillers. About 27% of RHWs and 24% of CHWs gave symptomatic treatment. Mostly the suspected patients are referred to the tertiary care hospital. None of the PHCs has the diagnosis facility and supply of drugs required for SCD management. And none of the health workers has any expertise in managing SCD patients. Hence, if the case is suspected to be of SCD, it is immediately referred to a tertiary care hospital in the district.

An ANM from Madhya Pradesh PHC said, “No facility here for SCD cases, but the SCD patients are sent to the district hospital and Rajendragram Community Health Centre”.

An ANM from Andhra Pradesh explained, “When the patient was in normal condition, gave iron nutrient supplements. If the patient was in serious condition and in need of blood transfusion, that time, the patient was referred to King George hospital, Visakhapatnam (a Government medical college hospital) by PHC ambulance. Here only checked HB level.”

However, the health workers from Gujarat reported that they have a structured SCD programme. In PHCs, only sickling tests and other routine medicines are available. Due to the shortage of staff and other resources, PHCs are not able to manage SCD patients.

An ANM from Gujarat said, “Those who come to PHC should be tested. Their samples are taken and sent to Vadodara (District hospital) to check for disease or trait.”

Concerning the emergency services for SCD patients, none of the PHCs provided any emergency care to SCD patients. If SCD patients visit, they were referred to tertiary care hospitals. Mostly, they could not recognise that these emergencies are due to SCD. Some PHCs provided ambulances to transport patients to tertiary care hospitals.

An ASHA from Gujarat said, “Yes.. they (PHC) take emergency services. But if we feel that we can't do treatment anymore, we call 108 (ambulance service) and send the patient to the hospital (district hospital).

An ANM from Karnataka said, “…. don’t know what the emergency symptoms are…so maybe we don’t know”.

Knowledge of the prevention of SCD

Except for a few, most health workers lack comprehensive knowledge on the prevention of SCD. However, most health workers (79% of RHWs and 72% of CHWs) mentioned that SCD can be prevented. Some health workers mentioned that SCD can be prevented by screening and premarital counselling. They suggested undertaking mass screening, including screening at an early age. Counselling was mentioned as one of the methods of prevention of SCD. They mentioned that counselling should address that sickle haemoglobin positives should not marry, and if they marry, they should be careful while going for children. A few health workers believed that this is the only way of preventing SCD, and prevention is the only option as there is no cure for SCD.

Most of the health workers mentioned that awareness among people is important in preventing SCD. But they are not clear on what issue awareness is to be brought about and how that awareness prevents SCD.

An ANM from Gujarat explained, “Sickle cell cannot be cured, but it can be prevented by taking care of it. It is better if those people do the investigation before marriage. If the villagers get married by screening…., it is good to get screened first and then married. They should be counselled that they should not get married to the sickle cell person…., eat more green leafy vegetables, drink more water and take nutritious food”.

Some health workers suggested measures for the prevention of general anaemia like taking nutritious food, avoiding spicy foods, etc. A few health workers from Andhra Pradesh and Karnataka mentioned that consanguineous marriages are to be avoided to prevent SCD births. A few health workers suggested some measures like avoiding eating corn, taking a good diet, etc. to prevent SCD.

An ASHA from Odisha said, “Take medicines regularly, and one should be careful, ….. don’t do heavy work as that creates pain in the body”.

An ANM from Karnataka said, “Chances are less, need to cure at the DNA level. By diagnosis, at the initial stages, we can control, I think, by giving nutrient food to improve the oxygen supply and produce more RBCs. We can only delay the patient’s death by taking nutritious food”.

Anther ANM said, “Definitely we can cure, we tell people that RBCs are destroyed because of low iron content, we tell them not to walk barefoot because people can become anaemic due to roundworm infestation and because of malnutrition anaemia occurs… like that we educate them”

A staff nurse from Karnataka said, ……….mainly by stopping consanguineous marriages.”

Discussion

The present study, which is the first of its kind from India, reports inadequate knowledge and management experience of health workers working in primary health care institutions and the community. All the study districts are tribal-dominated and SCD-endemic. However, the knowledge and work experience of peripheral health workers are poor. Most of the health workers were aware of SCD, and most of them knew it as a blood disorder. About half of the health workers reported that SCD is hereditary; however, some attributed it to malnutrition. A considerable proportion of health workers could tell some typical symptoms of SCD. Though a majority of health workers said that SCD is preventable, comprehensive knowledge on prevention was lacking. No SCD-related activities are going on, and even primary care related to SCD management is not provided in the PHCs. In some states like Gujarat and Odisha, health workers’ knowledge and management experiences are better. In these states, some SCD-related interventions have been implemented under the National Health Mission (Serjeant et al. 2016). In addition, some NGO-run programmes have also been implemented in Gujarat (Desai et al. 2016; Society for Education Welfare and Action-Rural 2015). These interventions were conducted with the involvement of PHCs and their health workers. In most of the other states, there were no such interventions. Hence, most of the health workers in these tribal districts lack knowledge of SCD. Similar findings of inadequate knowledge related to SCD are reported among health workers and a similar cadre of health care workers working in other endemic countries like Nigeria (Adegoke et al. 2018), Ghana (Aboagye et al. 2019), Sudan (Elkheir and Mokhtar 2019), Congo (Katawandja et al. 2020), Uganda (Ayugi et al. 2019), Bahrain (Yaqoob and Nasaif 2015), Brazil (Gomes et al. 2011), etc.

Efficacious therapies are available, but they are not available at PHCs, and none of the health workers reported treating SCD patients. Simple strategies to treat the painful crisis of SCD, such as hydroxyurea therapy, are established and can safely be used at the PHC level. It is proven to be safe and efficacious (Nardo-Marino et al. 2020; Patel et al. 2012; Pollack et al. 2014). Such established treatment strategies and guidelines should be implemented in SCD-endemic PHCs and their subhealth centres. Several treatment modalities are emerging to manage crises and improve the quality of life among SCD patients (Nardo-Marino et al. 2020). Premarriage counselling may result in appropriate actions by the couples and fewer children born with sickle haemoglobin (Aneke and Okocha 2016). Screening of parents should identify couples at risk of children with SCD and provide adequate counselling and referral. Women with SCD have varying needs for prenatal and postnatal care than the general population. It is evident that if a woman with SCD becomes pregnant, there is a risk of maternal and foetal complications (Parrish and Morrison 2013). Hence, the women with SCD should be counselled with appropriate information on possible complications during pregnancy, foetal outcomes, and the importance of antenatal care and prenatal screening. These women should be provided with comprehensive antenatal care.

Comprehensive care also includes carrier detection and disease screening along with treatment and counselling (World Health Organization 2006; Modell and Darlison 2008). Carrier detection and newborn screening are possible options in high-risk populations like Indian tribal communities (Geethakumari et al. 2021). Newborn screening, followed by appropriate care, significantly reduces mortality and morbidity during the first 5 years of life (Benson and Therrell 2010; Goonasekera et al. 2018).

Though there is no mention of SCD care in the guidelines of Indian public health standards, even for PHCs and subhealth centres of tribal areas, tests for SCD are listed under diagnostic services for comprehensive primary health care proposed under the Ayushman Bharat in the pursuit of universal health coverage (Government of India 2012). It indicated having rapid SCD tests at subhealth centres. Though all the study districts are endemic for SCD, and births with SCD are prevalent (Babu et al. 2021), no such testing facility or care for SCD are available in these primary health care institutions. As part of the programme, the PHCs and their subhealth centres should be equipped to screen and manage SCD patients. Of the three levels of the primary health care system, the community level health institutions, namely, the subhealth centres and health workers, should be made aware of the disease and should be able to identify the SCD patients, specifically the children, based on the symptoms. They should be able to diagnose them using simple screening techniques like the solubility test. Such screening is feasible in these communities (Babu et al. 2021). SCD patients are to be supported and guided for treatment and referral. Hence, health workers, in addition to having knowledge on causation, symptoms, and prevention of SCD should be knowledgeable in identification, treatment, and management. They should be able to guide and counsel the patients and their families to get appropriate treatment and care at PHCs and other higher-level health facilities. This leads to a reduction of frequency and severity of crises and other SCD-related complications. The decrease in newborns with SCD will result in the long run. It is evident that the care and resultant patient outcome for SCD could be improved through health workers’ case management, social support, and guidance (Hsu et al. 2016). Health workers are able to identify potential triggers (precipitating factors) of SCD crisis and provide psychosocial support. As mentioned earlier, health workers from Gujarat and Odisha states are aware that some weather conditions and physical exertion act as precipitating factors. It is evident from India that the manner in which health workers deliver information could influence the healthcare-seeking behaviour of the people (Saprii et al. 2015; Seth et al. 2017). In addition, the community’s acceptance of the health workers, particularly of the community health workers, is high (Saprii et al. 2015). Hence, health workers should know their roles and capabilities in managing SCD cases through regular training. The health workers working in SCD endemic areas should be given in-service regular structured training programmes. The training should focus on basic knowledge and standard treatment/management guidelines and referrals. This kind of training empowers the health workers to deal with SCD patients in their jurisdiction, thereby changing the working process of health workers concerning managing SCD patients (Gomes et al. 2015; Yacoub et al. 2019).

Our study has some limitations that should be considered while discussing the implications of the findings. The study design is qualitative, which is less likely to generate inferences generalizable to a broader population of health workers. However, the aim of this qualitative study is not to generalise but rather to provide a rich, contextualised understanding of the knowledge and experience of health workers working in SCD-endemic areas. Despite this inherent limitation, the study has methodological strengths, including a large sample drawn from six districts spread across the country, adoption of a common methodology for all six districts of this multicentric study and rigorous training to field staff. In addition, we quantified some of the quantifiable variables from qualitative interviews during content analysis to make broader inferences. Thus, the study provides a piece of evidence that health workers serving the SCD-endemic population are deficient in required SCD-related knowledge, which is hitherto not available in Indian literature.

Conclusions

This study reports the inadequacy of required SCD-related knowledge and SCD management practices among the health workers working in tribal-dominated SCD-endemic districts in India. None of the sampled PHCs provided treatment of SCD, except a few instances of symptomatic treatment. There are variations across the districts and between RHWs and CHWs. Hence, health workers should know their roles and capabilities in managing SCD. They should be provided in-service regular structured training programmes. The training should focus the basic knowledge and standard treatment/management guidelines and referrals. This kind of training empowers the health workers in dealing with SCD patients in their jurisdiction. These training programmes should be part of the comprehensive SCD programme and comprehensive primary health care.

Author contribution

BVB conceived the study; all the authors designed the study protocol; PS, SS, MR, DB, JS, and GS carried out the data collection; BVB and YS carried out the analysis and interpretation of the data. BVB drafted the manuscript; all the authors read and approved the final manuscript. BVB is the guarantor of the paper.

Funding

This study is funded by the Indian Council of Medical Research, New Delhi, India (Grant Number: NTF/SCD/2019/SBHSR).

Data Availability

Data will be available on reasonable request.

Code availability

Not applicable.

Declarations

Ethics approval

The institutional ethics committees of the institutes of the authors (PS, SS, MR, DB, JS, and GS) approved the protocol. Each of the six committees approved the study for the corresponding district. All the study participants were informed about the study’s purpose, and their consent was obtained before conducting interviews.

Competing interests

The authors declare no competing interests.

Footnotes

Parikipandla Sridevi, Shaily B. Surti, Manoranjan Ranjit, Deepa Bhat, Jatin Sarmah, and Godi Sudhakar contributed equally to this paper as second author.

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