The Bangladesh health system context

Bangladesh is one of the world’s fastest-growing economies and one of the fastest-growing lower middle-income countries [19]. However, according to the World Bank, as of 2016, 14.8% population of the country lived below the international poverty line on less than $1.90 per day [20]. Bangladesh has a highly pluralistic set of health providers across the country, including formal and informal, traditional and modern, and private and public [21]. Within the public sector, the Ministry of Health and Family Welfare operates a dual system of health and family planning service delivery through medical college hospitals, specialized hospitals, district hospitals, Upazila (sub-district) health complexes (with 51 beds), union health, and family welfare centers and community clinics (CCs) [21]. In rural areas, Health Assistants and Family Welfare Assistants assist community health care providers (CHCP) to run CCs, supported by Community Health Workers (CHWs) linked to non-government organizations (NGOs). In urban areas, the ‘Dhaka North City Corporation’ and ‘Dhaka South City Corporation’ (under the Ministry of Local Government) are responsible for providing primary health care services including for the urban poor. Services at this level are offered through a contracted-out mechanism in which NGOs periodically bid to provide low-cost services [22]. In addition, in Dhaka (urban) and Matlab (a rural sub-district), the non-governmental hospitals of icddr,b provide treatment, specializing in diarrhoeal disease [23, 24].

Study sites

The qualitative study presented in this paper was nested within the Bangladesh site of a large prospective cohort study—“The Childhood Acute Illness and Nutrition (CHAIN) Network”: Building the evidence base for care of acutely ill, undernourished children in limited-resource settings” between March 2017 to December 2018 [25, 26]. The parent study (CHAIN) is a large multi-country observational cohort study conducted in Bangladesh, Pakistan, Kenya, Uganda, Malawi and Bukina Faso, to better understand risk factors and identify potentially modifiable mechanisms to target in interventions to reduce post-discharge mortality of children [25].

The two CHAIN study hospitals in Bangladesh were the icddr,b Dhaka (urban) hospital—located in the capital city and Matlab (rural) hospital—about 55 km southeast of Dhaka, located in a sub-district of Chandpur District [25]. These hospitals provide a full range of free treatment and services for patients admitted with diarrheal disease [27, 28]. Each year over 100,000 diarrheal patients are admitted in Dhaka hospital and between 20,000 and 25000 in Matlab hospital [21–23, 27, 29]. Children with diarrhea and malnutrition are managed according to the hospitals’ management protocol, including the specific guidelines for the management of malnourished (SAM) children [23, 29]. The Dhaka hospital has an intensive care unit (ICU) and a nutrition rehabilitation unit (NRU), with the care given saving an estimated 40,000 lives per year [30]. In Matlab hospital, children with SAM are discharged from the hospital immediately after recovery from their primary illness, or with significant improvement, as there is no NRU available. Critical patients are referred to the Dhaka Hospital or elsewhere as needed.

Most patients admitted to the two icddr,b hospitals are from low socio-economic backgrounds. In Dhaka city, many hospital users live in one of the city’s ‘slums’, where 37.4% of city dwellers live and where environments can be very contaminated [31]. When compared to non-slum urban areas, slum-dwelling children are more malnourished, have lower immunisation rates, and have higher rates of measles and other infectious diseases. They also suffer more often from diarrhoeal illness and severe dehydration, and their mothers are more likely to be out earning an income [32]. The majority of the admitted children in Matlab hospital of icddr,b were from the Matlab sub-district, which is entirely rural, lacks major towns or cities (except for the Matlab bazaar), and has limited inter-village trade and commerce. The dominant occupations of its population are subsistence farming and fishing [33].

Recruitment of participants and data collection

We adopted a case study approach drawing on interviews and observations focused on family members of 17 children with undernutrition (‘cases’) who had been admitted in one of the two study hospital sites. A total of 488 undernourished children aged less than 23 months were included in the icddr,b CHAIN cohort, 269 in the urban site and 219 in the rural. We (MFU, MAH, MAI) purposively [34] selected 17 ill undernourished children from the main CHAIN cohort participants, ensuring diversity in children by location (8 rural and 9 urban), nutritional status, education of parents and exposure to recent major social disruption such as moving house, death of a parent, and change in the main caregiver.

We conducted repeat in-depth interviews (total interviews = 73) in the homes of 29 caregivers and family members of 17 purposively selected children on days 1–7, 45, 90 and 180 post discharge (Table 1). Repeat interviews facilitated establishment of rapport with participants and supported collection of in-depth information on children’s illness, treatment-seeking trajectories and recovery experiences over that period. It also allowed for some observation of the home environment to supplement data from interviews and understand family context. We (MFU, MAH, MAI) also conducted Key Informant Interviews and FGDs with icddr,b health workers working in the study hospitals and with community health workers (CHWs) working in patients’ communities to gather their perspectives (Table 1). Health workers interviewed had interacted with children’s caregivers and so were able to add to household stories as well as highlight relevant health system challenges. Triangulating our data sources strengthens the trustworthiness of the findings. We collected data until no new topics emerged [35–37]. All interviews were audio-recorded.

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Table 1. Methodology and participants.

https://doi.org/10.1371/journal.pone.0274996.t001

We drew on treatment-seeking literature summarized in the introduction, and on previous conceptual frameworks [18, 38, 39] to develop a conceptual framework for our study (S1 Fig). The conceptual framework highlights potential economic, health service/system, socio-cultural and environmental influences on vulnerability, agency and treatment-seeking actions and experiences. The interview tools for family members allowed for open narrative of the child’s illness and treatment-seeking journey, followed by probes to cover the conceptual framework topics. The focus of discussion was discharge (timing and decision-making) and post-discharge treatment-seeking behavior and adherence to advice. Health worker interviews were similar, without the child specific open narrative. Initial interviews served as pilots of the tools, which were adapted throughout the study.

Data analysis

Qualitative interviews were transcribed verbatim, and interview and observation notes written up immediately following fieldwork. We used two complementary approaches to analyze the data: a narrative approach [40, 41] and a thematic coding approach [42], as described in more detail elsewhere [18]. The narrative approach entailed constructing detailed household stories for each child (or case), which offered a rich and in-depth picture of the household itself and the entire treatment-seeking trajectory and experience. Household stories were typed up and translated into English using Microsoft Word. This approach ensured that discharge and post-discharge elements were not extracted and separated from their context and facilitated comparison across households. Second, a thematic approach was applied to the entire data set (specifically a framework analysis approach) where we condensed data from the transcripts through an iterative process of coding, building into categories and themes, with data managed using NVivo11 software. The coding framework was based on the interview tool probes, in turn based on the conceptual framework [S1 Fig], as well as on emerging themes of interest. To support trustworthiness, two researchers coded initial transcripts, compared results, and resolved discrepancies.

Ethical approval

CHAIN protocols were approved for ethics in all participating countries. In Bangladesh, the study was approved by the Ethical Review Committee of icddr,b. Written informed consent was sought from participants for all in-depth interviews, observations and recordings, and–continuing consent for households–was checked in each subsequent household visit. There were no refusals.

Participant and household characteristics

The main characteristics of the 17 children are summarized in Table 2. 10 were SAM, 7 were MAM, and most had experienced a disruption in the family, including recent migration, separation or income-earning loss among parents, maternal illness or a change of caregiver. Across both sites, children were admitted into the hospital and enrolled into the main CHAIN cohort aged 4 to 16 months, with all reported by parents as having been sick ‘on and off’ since birth. All children had diarrhea on admission, usually with other symptoms including vomiting (n = 10), fever (n = 7) and pneumonia or severe respiratory distress (n = 5, all urban). Selected children were broadly similar to the wider cohorts in education level of main caregiver, in having no reported income, having low levels of food security and in asset scores. All households reported access to a phone to CHAIN organisers but in our qualitative work we learned that young mothers particularly in rural households were hesitant to use the phone for fear of being accused of extramarital affairs.

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Table 2. Participants and households’ characteristics (n = 17).

https://doi.org/10.1371/journal.pone.0274996.t002

Children’s treatment-seeking trajectories and health outcomes: An overview

There had been significant treatment-seeking efforts by most parents by the time of admission in icddr,b hospitals, including visiting drug sellers, healers, private doctors and public hospitals (Table 3). In both rural and urban areas, several treatment-seeking actions had been taken sequentially or in parallel.

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Table 3. Treatment-seeking patterns for the index child’s illness pre-admission.

https://doi.org/10.1371/journal.pone.0274996.t003

During initial hospitalization, we observed hospital health workers teaching caregivers about food preparation and preservation processes and complementary feeding. Also covered were maintaining minimum dietary diversity, meal frequency, using a spoon instead of fingers or a bottle for feeding, and avoiding drinking cold food/water. Demonstration sessions were organized on breastfeeding, hand washing, and using treated water for cooking and drinking. On discharge, hospital health workers advised caregivers to continue with prescribed medicine, complete vaccines, breastfeed (noting that employed mothers can store breast milk), and cook homemade food. Caregivers were given health workers’ mobile numbers to contacted them for advice and prescriptions.

13 of the 17 children had fully recovered by the time we completed our interviews; 4 had died (3 urban and 1 rural), one before discharge. Two of the 16 children discharged alive were discharged by parents against medical advice, both of whom were SAM. Post-discharge, most parents reported that children took time to recover, with many experiencing new episodes of illness. Eight visited a healer over the post-discharge period, 14 a drug seller, and nine another health facility. 11 were re-admitted either back to icddr,b or into another hospital (Table 4).

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Table 4. Discharge and post-discharge treatment-seeking patterns for the index child’s illness.

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The caregivers of selected children mentioned more treatment-seeking actions and greater use of traditional healers than was observed in the overall cohort, suggesting greater openness and amount of detail in qualitative repeat interviews than a one-off survey.

In subsequent sections, we highlight key influences and impacts on post-discharge treatment-seeking and recovery. However, to illustrate complexities of treatment-seeking patterns and influences, and the interplay of vulnerabilities and abilities, we first present two contrasting household stories: one from an urban and one from a rural household (Boxes 1 and 2). These stories also show how the admission and post-discharge experience for children is inextricably linked to their pre-admission situation and experience.

Socio-cultural and environmental influences on treatment-seeking and recovery

Economic influences on treatment-seeking and recovery

In the majority of the households, where money was needed or costs were incurred across the treatment-seeking pathway, the father of the child was generally considered to be responsible for meeting such costs. Men played a more prominent role in supporting mothers financially than assisting with other forms of support. Where the sick child’s father was absent, or was unable or did not want to assist, the range of relatives highlighted in the previous section were important. As one mother mentioned:

“My father sends money (2500 BDT) to me for treatment for my child, as he knows well about the financial inability of child’s father for treating the child.” Mother, Rural, HH5

Mothers in particular had very little access to money in homes, and where they earned an income this was primarily through casual and informal work. Many families were largely living ‘hand to mouth’, juggling multiple demands on their cash, with few savings to draw upon. This influenced their choice of action:

“I have to find money for accommodation, food and clothes from my limited [regular] income. A sudden treatment and transportation cost to bring the child to the hospital is an extra burden for me. The situation is the worst fifteen days into a month when my payment has been used up and when I’m under pressure to repay loans. [so with the child’s illness] we went for low-cost treatment from the nearest drug shop.” Mother, Urban. HH53

In contrast with private facilities which are relatively expensive, the free treatment offered at icddr,b—together with the institution’s services and reputation for quality care–were reported by many family members as a major incentive to seek care there when it was needed post-discharge. Despite this, mothers still faced affordability challenges as a result of transport costs to the facility and the need to purchase basic necessities not required when staying at home—mentioned by CHWs and family member. Concerns about these direct and indirect costs, layered on top of the previous treatment-seeking action costs, contributed to some parents discharging their children against medical advice (particularly in the urban area), and to parents being hesitant to bring their children back to hospital post-discharge. As one mother mentioned:

“I did not communicate with the hospital physician of icddr,b using the mobile phone number I was given because I thought they may request us to go there and be re-admitted. We did not have enough cash to pay for travel to the hospital and to cover other costs needed during admission. The costs we’d already had to meet before the admission [initial hospitalization] were the reasons we were short of cash already and I could not manage to find the money we would need from neighbors and local NGOs because we had recently moved from the rural area [so didn’t have anybody to approach].” Mother, Urban, HH62

Nonetheless, some families were able to navigate around these challenges of indirect costs by communicating among themselves and with health workers via phone as illustrated in the following quote:

“I explained clearly over the mobile phone to the child’s father about the loose stool. He brought oral saline straight after consulting with a doctor. I think this is cost-effective for us as we did not have to pay any transport costs to see the doctor and it was a time saving solution also.” Mother, Urban, HH59

Health workers and fathers of the children mentioned—public hospitals, although officially free, were reported by some to require informal payments, such as a small financial incentive to ensure children are seen during ward rounds. Also, physicians in some public hospitals were reported to encourage unnecessary but relatively expensive diagnostic tests or medicines outside the hospital, and there were some reports of brokers being employed by public doctors to attract families to private facilities. As a rural community health worker explained:

“Some physicians of public hospitals nominate people [such as village doctors, rickshaw puller/transport drivers, or hospital health workers] to motivate the parents of the children on the way to the hospital and even during re-admission to bring the patient to the physician’s private facility. Sometimes they [public hospital physicians] prescribe unnecessary diagnostic tests and poor quality medicines because they are incentivized to do so by the diagnostic center and drug company. [Some parents are aware of these practices] and so are reluctant to seek treatment from public hospitals.” Community representative, Rural. KII68

Families’ treatment-seeking stories suggest that a major reason for treating children at home, or for seeking treatment from untrained medical practitioners (such as drug sellers and healers)—even when recognizing that the care might be sub-standard—is a concern about anticipated costs from hospitals.

Mothers’ need to return to their income-earning tasks and to make up for income loss during admission contributed to their need for support from others to care for their child post-hospital discharge.

Health system influences on treatment-seeking and recovery

Costs related to the health system and their influence on treatment-seeking and recovery have been alluded to in the previous section. Also important at the health system level are the perceived quality of care at facilities, and–although raised more by health workers than family members—the reportedly heavy use of antibiotics in many households and communities.

Regarding the perceived quality of care, in general, family members described being very happy with their children’s care in icddr,b hospital. In particular, they appreciated being asked directly about the child’s illness history from health workers, and the supportive and respectful interaction with them in the counseling and demonstration sessions for breastfeeding, complementary feeding and hygiene practices. Many family members mentioned that these sessions improved their health care knowledge and encouraged them to adhere to the treatment advice, and that their new knowledge supported their children’s recovery. For example, three mothers felt that their children’s diarrhea cases had eased off because they now wash their hands with soap, and have switched from bottle feeding to feeding with a clean spoon.

This was in contrast to reports of care received in public hospitals. For example, mothers in three homes who had children re-admitted to a public hospital reported being upset that physicians prescribed medicines based only on talking to the duty nurses rather than to the mothers themselves; as mothers they felt they had a far better understanding of the child’s history than the nurses. Such observations and concerns among mothers undermined their trust in the quality of care being offered, and contributed to their discharging their own children against medical advice and taking them either home or for treatment elsewhere. As one father explained:

“Physicians of the public hospital in Dhaka city are not serious enough to provide good quality care through enough attention and proper interaction with us. This happens because the physicians think that it’s usually only poor patients that come to this hospital, and their families do not have any political power. Besides, the physicians in Dhaka city are really powerful themselves. So they know nothing will happen [to them], even if a child dies because of their improper treatment.” Father, Urban, HH57

Over-use of antibiotics was regularly raised by health care workers as an influence of recovery, and as resulting from treatment-seeking actions and advice to family members from friends, neighbours and improperly trained or motivated health providers. Hospital health workers were concerned about treatment failure among some children during re-admission due to the unnecessarily high use of antibiotics prior to admission. Many private physicians and drug sellers were perceived to provide these too early in an effort to build their reputation (and profit) in the community through children getting better fast, and to switch the type of antibiotic far too often. Community medical practitioners of public health care facilities felt that they could not compete with these fast-acting drugs given their recommendation of relatively long treatment courses. Another related challenge is that even where the physicians do not prescribe antibiotics, many family members buy them over-the-counter anyway as they are unaware of the potential individual and public health harms of overuse.

Strengths and limitations of the study

We collected data using multiple qualitative data-collection techniques including individual interviews, observations, and group discussions in two research hospitals, communities, and households of children who had been admitted. Although we only interviewed family members of 17 children, repeated interviews in homes helped us build trust with family members and access rich accounts of the treatment-seeking journeys they had followed for their children. Using multiple methods helped us to understand different perspectives and triangulate findings, and through including an urban and rural site, we were able to see some similarities and differences across very different settings in Bangladesh. Future publications will merge quantitative and qualitative CHAIN data, and include cross-country comparative work.

Although, we did not gather in-depth data from public hospitals, we often heard about experiences in public hospitals. These discussions suggested that many of our findings are highly applicable to those hospitals. However, a specifically designed study is necessary to explore this in depth, and identify potential interventions for public hospitals.