|Year : 2019 | Volume
| Issue : 1 | Page : 8-12
Barriers and Challenges in Seeking Healthcare by Pediatric Tuberculosis Patients Attending DOTS Centers in Urban Areas of Delhi
Sunita Dhaked1, Nandini Sharma2, K.K. Chopra3, Ashwani Khanna3
1 Department of Community Medicine, All India Institute of Medical Sciences (AIIMS), New Delhi, India
2 Department of Community Medicine, Maulana Azad Medical College, New Delhi, India
3 New Delhi TB Center, New Delhi, India
|Date of Web Publication||30-Apr-2019|
Dr. Sunita Dhaked
Department of Community Medicine, All India Institute of Medical Sciences (AIIMS), New Delhi
Source of Support: None, Conflict of Interest: None
Background: Healthcare seeking by pediatric tuberculosis (TB) patients is complicated because of some factors such as lack of knowledge among family members, diagnostic difficulties, limited resources, and treatment challenges. Aims: The aim of this article is to identify the barriers and challenges related to seeking healthcare by pediatric TB patients. Settings and Design: It was a prospective observational study conducted from January 2015 to December 2015 at two chest clinics. Materials and Methods: A predesigned, pretested, and semi-structured questionnaire was used to interview caregivers of pediatric TB patients and followed up at two more occasions, that is, at the end of intensive and of continuation phase, to identify the challenges they were facing during treatment. Statistical Analysis: Data were analyzed using SPSS software version 17 (SPSS Inc., New Delhi, Delhi, India) and P value less than 0.05 was considered significant. Result: The lack of knowledge was a barrier to understand the disease, seeking care, and being compliant with treatment as nearly 40% (41.8%) did not know that TB is infectious and more than half (55.3%) did not know that TB can occur in any age group. Only 14.2% knew about vaccine for TB, but no one had knowledge about isoniazid prophylaxis. Reported challenges in treatment seeking were high transport cost, long distance for higher government facility (83.7%), and interference with daily routine (39.0%), and in-treatment compliance were heavy pill burden (80%), refusal of child to take medicines (41.8%), fear of side effects (71.6%), and difficulty in powdering the medicines (35.5%). Conclusion: Major barrier was lack of knowledge about childhood TB and major challenge was heavy pill burden, which affected the compliance.
Keywords: Barriers, challenges, healthcare seeking, pediatric tuberculosis
|How to cite this article:|
Dhaked S, Sharma N, Chopra K, Khanna A. Barriers and Challenges in Seeking Healthcare by Pediatric Tuberculosis Patients Attending DOTS Centers in Urban Areas of Delhi. MAMC J Med Sci 2019;5:8-12
|How to cite this URL:|
Dhaked S, Sharma N, Chopra K, Khanna A. Barriers and Challenges in Seeking Healthcare by Pediatric Tuberculosis Patients Attending DOTS Centers in Urban Areas of Delhi. MAMC J Med Sci [serial online] 2019 [cited 2019 Jul 18];5:8-12. Available from: http://www.mamcjms.in/text.asp?2019/5/1/8/257425
| Introduction|| |
India accounts for one-fourth of the global tuberculosis (TB) burden. In 2015, an estimated 28 lacs cases occurred and 4.8 lacs people died because of TB. The proportion of children among new TB patients reported was 6% in 2016. Childhood TB frequently goes undiagnosed because children with TB often have families that are poor and live in overcrowded settings, lack knowledge about the disease, and live in communities with limited access to healthcare. Even when the quality of care at health facilities is good, many caregivers may not be knowledgeable about these facilities, or they may be unwilling to seek care if the facility-based care is perceived as culturally inappropriate, inaccessible, or unaffordable. There are many barriers and challenges contributing to delay in receiving appropriate care and treatment among symptomatic children. These could be related to the patient or to the health system. Patient-related delays can be due to nonspecificity of symptoms, resulting in late reporting to healthcare facility. This treatment seeking also depends on their awareness, which determines severity of illness, their preference of seeking healthcare from alternate sources of treatment, and ability in overcoming barriers such as stigma, accessibility, acceptability, privacy, attitude of providers, availability of adequate service, quality of services, and satisfaction. Children were being looked after by parents suffering from TB themselves, which compromised effective care and diagnostic difficulties and made parents to visit multiple centers and misdiagnosis. The period between onset of symptoms and treatment initiation is critical in terms of spread of infection in case of sputum-positive patients, which is indicative of importance of reducing delay in treatment. Even if a child is non-infectious, delay in treatment-seeking behavior can have far-reaching consequences on child’s overall development. Provider delay was positively associated with rural residence, being illiterate, patient with good functional status, patients in contact with more than two health providers, and place of first visit being traditional healer/private clinic/drug shop. Treatment seeking in pediatric TB patients is complicated by lack of knowledge among family members, diagnostic difficulties, limited resources, and lack of data on treatment. Therefore, the study attempted to understand the barriers and challenges faced by the caretakers of pediatric TB patients under revised national tuberculosis control program (RNTCP) in urban areas of Delhi, which may help to address these issues and thus strengthen the program.
| Materials and Methods|| |
It was a prospective observational cross-sectional study conducted at two chest clinics, namely, Karawal Nagar Chest Clinic [13 direct observed treatment short-course therapy (DOTS) centers, and seven, designated microscopy centers (DMCs)] and Lok Nayak Chest Clinic (seven DOTS centers and three DMCs), which are located in eastern and central part of Delhi, respectively. The study was conducted from January 2015 to December 2015. All pediatric TB patients (up to age 14 years) who were referred for registration from the selected chest clinics to respective DOTS centers, during February to April 2015, were included in the study, and seriously ill cases or those referred for admission were excluded from the study. The total number of registered cases at these two chest clinics during February to April 2015 confirming to the above inclusion criteria was 141, and these were included in the study.
A predesigned, pretested, semi-structured questionnaire was used. The questionnaire was validated and consisted of identification data of children and their caregivers, healthcare seeking in the current episode such as first symptoms observed by them, their first source of seeking care, knowledge about TB, and their compliance about DOTS.
The data were entered in MS Excel and analyzed by using SPSS software version 17. Qualitative data were expressed in percentages with 95% confidence interval and quantitative data were expressed in mean ± standard deviation. Chi-square test/Fisher’s exact test was used for qualitative variables. P value less than 0.05 was considered significant.
The study was approved by the institutional ethical committee. Objectives and procedure of the study were explained to all the caregivers, and a written and informed consent was taken from parents or local guardian of all enrolled pediatric TB patients; assent was taken from 7 to 14-year-old patients. No pressure or coercion was exerted on patients for participation in the study. Confidentiality and privacy was ensured at all stages of the study period. Parents or caregivers were counseled regarding the importance of completion of treatment and its benefits.
| Results|| |
Out of the total study patients, 107 (75.9%) were registered at Karawal Nagar Chest Clinic and 34 (24.1%) at Lok Nayak Chest Clinic. The type of TB was extrapulmonary in the majority of the cases [99 (70.2%)] being almost three times more than pulmonary TB [42 (29.8%)]. The median age was 11 years [inter quartile range (IQR) 8–13]. Majority [69 (48.9%)] of the families of the patients belonged to lower middle class, followed by lower class [50 (35.5%)], according to modified BJ Prasad’s (2015) socio-economic classification. The mean age of caregivers was 29.9 ± 5.6 years. Majority of the primary caregivers were parents of the child [132 (93.6%)], especially mothers [84 (59.7%)]. However, 48 (34.0%) cases were primarily taken care of by fathers in relation to giving medication and taking child to the clinic, as mothers were not considered competent for such care. As most of the mothers were housewives, there was no or irregular source of income. Work status over past 1 year of the primary caregiver indicated that 86 (61.0%) had no income source, whereas 51 (36.2%) had an irregular income as daily wage worker or part-time worker/small business at home. A few [4 (2.8%)] had a regular source of income, and the majority of them [95 (67.4%)] had a family size of more than three.
Healthcare-seeking behavior in pediatric TB patients
The most common symptom that made the caregivers of pediatric patients seek healthcare facility/personnel was fever in 59 (41.8%), followed by nodular skin swelling in 38 (27.0%), and cough in 24 (17.0%). Cough was the most common symptom in 24 (57.1%) pulmonary TB patients, and fever was the most common symptom in 41 (41.4%) extrapulmonary patients for which they were first taken to health facility by the caregivers.
More than half of the study patients were first taken to a private practitioner for healthcare, that is, 91 (64.5%), followed by a pharmacist by 27 (19.1%), and public clinic/health center/dispensary by 21 (14.9%). Only two (1.4%) patients were directly taken to a higher level government facility; they had altered sensorium and were diagnosed as TB meningitis.
Trust in provider was the most common reason cited by the caregivers for choosing the first care provider in 52 (41.1%), followed by easy access or convenience in 49 (34.8%). The most common reason for going to a private facility first was trust in provider in 52 (44.1%) followed by easy access in 45 (38.1%). The reasons cited for seeking government health facility first were low cost in 11 (47.8%) followed by trust in services in six (26.1%).
Barriers and challenges in treatment seeking
Barriers to seeking care can be access barriers, namely, distance; financial barriers, namely, low socioeconomic status with daily wage worker; and the knowledge barrier.
The lack of knowledge could be a barrier in understanding the disease, seeking care, and being compliant with treatment as nearly 40% (41.8%) did not know that TB is infectious, and more than half (55.3%) did not know that TB can occur in any age group. The knowledge about prevention of TB was very poor as only 14.2% said that they knew about vaccine for TB, but none had knowledge about isoniazid prophylaxis [[Table 1]].
|Table 1: Distribution of patients according to barriers faced by caregivers in treatment seeking|
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Challenges in treatment seeking reported by caregivers were high transport cost and long distance from higher government facility (83.7%) and interference with daily routine reported by 39.0% caregivers, as they were mostly daily wage workers.
Reported challenges in compliance with the treatment were heavy pill burden by almost 80% caregivers, refusal of child to take medicines due to bad taste by 41.8%, 71.6% found to have fear of side effects, and 35.5% had difficulty in powdering the medicines. They also felt that it adversely affected their lifestyle as they had to incur extra expenses on special diet and had fear of stigma and discrimination [[Table 2]].
|Table 2: Distribution of patients according to challenges reported by caregivers|
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| Discussion|| |
There are many barriers and challenges contributing to delay in receiving appropriate care and treatment among symptomatic children. These could be related to patient and the health system. Barriers in seeking care can be access barriers, namely, distance; financial barriers, namely, low socioeconomic status as in the care of daily wage worker; and the knowledge barrier.
In this study, more than half of the caregivers (65.3%) had education below primary and were unemployed (61.0%), nearly one-third (71.0%) lived in JJ clusters and resettlement colonies, and nearly half of the caregivers (44.0%) had family size of more than three. More than two-third of patients (84.4%) belonged to lower and lower middle-class families.
Lack of knowledge can be a barrier in understanding the disease, seeking care, and being compliant with treatment. In the present study, nearly 40% (41.8%) did not know that TB is infectious and more than half (55.3%) did not know that TB can occur in any age group.
Knowledge about prevention of TB was very poor as only 14.2% said that they knew about vaccine for TB, but none had knowledge about Isoniazid (INH) prophylaxis.
Similarly, some studies from other countries also reported lack of knowledge as a barrier in seeking care; for example, a qualitative study in Peru among parents of pediatric TB patients receiving treatment found that lack of awareness and knowledge about TB resulted in confusion about symptoms. The lack of understanding about TB and being illiterate was found to be responsible for delayed presentation in adult TB patients by Thomas as well as reported by a study performed from Southeast Ethiopia.
Okeibunor et al. suggested factors that form barriers to use DOTS clinics, which include perceived causes of the infection that affect perceived efficacy of DOTS. Another factor is perceived high cost in resource-poor settings. Facility staffs were noted to have demanded money from patients in spite of the fact that DOTS is advertised as free treatment. Furthermore, community members complained of the hostile attitude of health staff toward poor people as a barrier to community use of the facilities. Another study reported that the patient delay was positively associated with first visit to traditional healer/private clinic/drug shop, rural residence, living more than 10 km from health facility, and severity of illness at first presentation to health facility.
Evidence suggests that TB patients, particularly from low-income groups or underserved areas, take long and sometimes difficult pathways to reach health facilities that provide appropriate care.
A qualitative study in Peru reported the challenges in treatment seeking as time constraints such as long waiting time, priority for some other work, and stigma, that is, fear of social exclusion of their child by the neighbors, school friends, and staff, if TB status was revealed., The main reasons for noncompletion of treatment are cited; these were the stigma of the disease, a lack of information, dissatisfaction with the treatment and its delivery, and inaccessibility of treatment as reported by Thomas.
A study performed in adult TB patients by Cramm et al. reported that respondents’ perceptions suggest that stigma may influence TB patients’ decision in health-seeking behavior and adherence to TB treatment. A full 95% of those interviewed believe that people with TB tend to hide their TB status out of fear of what others may say.
A qualitative study in Tanzania, focusing on adult TB patients’ self-perceptions of disease and their care-seeking behavior, found that the health system delay was longest in patients not being diagnosed at their first hospital visit and subsequently visiting other healthcare providers, mostly traditional healers.A study of adult TB patients by Kapoor et al. concluded that informal providers and retail chemists were the first point of contact and source of clinical advice for two-third of the patients, whereas the rest sought medical care directly from qualified providers. Most patients sought medical care from more than two providers, before being diagnosed as TB.
Grover et al. concluded that the factors significantly associated with patient delay in adult TB patients of more than the median value (3.5 weeks) were younger age (≤30 years), female gender, residence in a lower socioeconomic area (rural area, resettlement colony, JJ cluster), education only up to primary level, occupation such as laborer, cultivator, student, retired, housewife, and the patients’ perception that disease was not serious. Factors significantly associated with health facility delay of more than 4.5 weeks were residing in an urban area, female gender, being occupied as laborer, unemployed, student, housewife, retired, and having monthly per capita income of less than or equal to Rs. 500.
Pediatric TB is challenging not only in the treatment seeking and complying with it but also poses great difficulties for caregivers.
Challenges in treatment seeking reported by caregivers were high transport cost and long distance from higher government facility and interference with daily routine, as most of them were daily wage workers. Reported challenges in complying with treatment were very high number of medicines to be given, difficulty in powdering the medicines, and the fear of side effects. Sometimes the child also reportedly refused to take medicines due to bad taste. They also felt that it adversely affected their own and their child’s lifestyle as they had to incur extra expenses on special diet, and had fear of stigma and discrimination and social exclusion. Sometimes their child had to miss her/his school for taking medicine from DOTS center or because of ill health.
The authors are grateful to all the study participants for their support.
Financial support and sponsorship
The study was funded by the Tuberculosis Association of India.
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2]