Study context

In 2013–2014 we conducted a prospective cohort study of children aged 2–59 months diagnosed with fast-breathing pneumonia (‘pneumonia’), treated in the community [6]. Children were followed-up in their homes 5-days later and asked about concurrent diagnoses and treatments, additional care-seeking, and completion of antibiotics. In this population, 51% of caregivers reported their child had been diagnosed with a concurrent infection to pneumonia which they received treatment for [14]. Adherence, which was self-reported, was verified using pill counts in 30% of interviews.

Recruitment

We purposively recruited both caregivers and CHWs, based on reported adherence from the prospective cohort study described above [6]. We selected the two village clinics with the highest proportion of non-adherent cases and the two with the lowest proportion of non-adherent cases. We listed households known from the previous cohort study which had a child who had been diagnosed with and treated in the community for pneumonia. The mothers (or primary caregiver if the mother was not available) were selected to participate in the FGDs. We targeted 7–8 caregivers from each village, for each of four FGDs. Participants were invited in person, through engagement with village leaders and CHWs.

We selected five CHWs who were included in the cohort study and had received additional training and mentorship on paediatric pneumonia. We selected five CHWs from non-study areas who had not received this additional support to elicit a wider range of experiences. Those CHWs from the study area were selected to represent those with the highest (‘adherent’) and lowest (‘non-adherent’) proportions of adherent cases in their catchment areas, including those CHW from villages where we recruited caregivers. The five ‘non-study’ CHW were selected in collaboration with the local health management team to represent a range of clinic sizes, locations and distance from health centres. All CHWs were invited by phone by study staff.

Data collection

Interviews and FGDs were led by a local female researcher (EK) with experience of qualitative research, and supported by a local male clinical researcher (BZ) with knowledge of pneumonia and iCCM guidelines. The interviews and FGDs were conducted within the communities, and followed topic guides including: understanding of pneumonia and concurrent infections, understanding of antibiotics and concurrent treatments, and motivations and barriers to adherence (S1 Supporting Information). All interviews and FGDs were conducted in Chichewa, the local language, and were audio recorded following consent. Recordings and notes were transcribed, translated and the final transcripts discussed and agreed upon by BZ and EK. Participants were reimbursed for their travel costs and provided with refreshments, but not offered any other financial incentives.

Analysis

We used a framework analysis approach based on the five steps described by Gale et al. (2013): familiarization, coding, developing and applying a framework, charting and interpretation [24]. The transcripts were initially printed and read through by two researchers (CK and RN) for familiarization. Following familiarization, CK and RN discussed and agreed on major codes for both the FGDs and interviews, based on the structure of the topic guides (e.g. “understanding of antibiotics”). The data were then coded independently in Microsoft Excel. These codes were shared and a thematic framework was developed through a round table discussion until a consensus was reached on the mapping of the codes by FS, TC, RN and CK. The themes and their interpretation were shared and discussed with the two Malawian researchers who collected the data (BZ and EK) to ensure it was culturally appropriate and incorporated their perceptions.

Ethics

We sought informed written consent, following an explanation of the study aim, for all the FGDs and interviews. This study was approved by the Malawi National Health Sciences Research Ethics Committee [protocol number: 16/4/1569] and the University College London research ethics committee [reference: 8075/002].

Knowledge and understanding

Both caregiver and CHW knowledge about pneumonia and its treatments, and how they understood these, were significant for adherence. Caregivers had good knowledge of pneumonia and the importance of treatment, and all participants demonstrated understanding of the potential consequences of non-adherence, including: drug resistance, recurrent infections and onward transmission. This appreciation of the increased risk of poorer outcomes and the desire for children to recover were key drivers of adherence.

"It is a dangerous disease, especially if you have not followed instructions on giving treatment, a child can pass on [die], but if you properly follow the instructions on how to give the drugs, pneumonia in the child can be assisted” (Caregiver 1, non-adherent)

Knowledge of specific treatments and their regimes was mixed. In all groups, caregivers could name an antibiotic given for pneumonia, as well as other common drugs for malaria or diarrhoea. With differing regimes and multiple treatments for different illnesses, having concurrent infections can result in complex treatments. We have previously found that concurrent infections are common in this population (51%), but CHWs had mixed perceptions, stating they occurred ‘rarely’ to being ‘very common’. Confusion regarding dosing and duration of treatments was apparent among caregivers, and even a CHW incorrectly stated pneumonia treatment was 3-days.

Communication between CHWs and caregivers was a key factor for adherence, with a lack of effective communication resulting in caregiver confusion around treatment regimes. CHWs described a range of education strategies they use for improving adherence, including: demonstrations, asking caregivers to repeat back the recommended treatment, and providing strategies for illiterate caregivers or those without access to a clock (e.g. turning on a radio). However, CHWs acknowledged that caregivers could forget, were unable to understand due to poor education, or become confused; one caregiver attributed this confusion to CHWs:

"That’s the way the [CHW] tells us, so we follow. If we are wrong it is the [CHW] who makes us go wrong" (Caregiver 4, non-adherent)

CHWs use a standardized case report tool, called the ‘sick child reporting form’, and this was highlighted as an integral aid in diagnosis, treatment and referral decision-making. They demonstrated good knowledge of danger signs for referral and clinical features of common illnesses, utilizing this ‘checklist’ approach.

"We do not just write the drugs with no basis, we follow what is shown on the sick child recording form where we tick the history taken and find the problem, after that we make a decision" (CHW 5, non-adherent)

There was a lack of clarity amongst CHWs regarding a change to the national treatment guidelines for paediatric pneumonia, and a change in the antibiotic of choice from cotrimoxazole to amoxicillin. CHWs reported currently using different antibiotics due to stocking issues, but crucially the reason for the change in treatment was poorly understood. The main reason given was that the national-level source of funding for drug procurement had changed, and therefore the antibiotic had changed.

"We only give this drug called cotrimoxazole, although they introduced amoxicillin which was made available once, but up to now they are no longer provided" (CHW 3, non-adherent)

Effort

The theme of ‘effort’ was common for many of the processes around treatment, relating to the work that is involved in administering and preparing medications, the effort needed to understand complex regimes and the time required to seek and attend care. The term that was most commonly used by caregivers and CHWs to capture this barrier to adherence was “laziness”:

"…the decision is based on laziness, on giving the child drugs, which can lead to the child not getting well" (Caregiver 4, non-adherent)

In this context however, the term ‘laziness’ is more reflective of the ability to cope with daily competing priorities, rather than an unwillingness to spend time and effort on multiple activities. This was highlighted by caregivers describing the time and resource involved in giving the treatments, such as preparing food to eat with the medication, the challenge of getting a child to take the medication, and balancing this time with the need to conduct their routine daily tasks.

"Sometimes it is the child that is a problem on giving the treatment" (Caregiver 2, non-adherent)

"At times we are busy, which is what makes you forget to give the child drugs" (Caregiver 10, adherent)

“When Bactrim has been given you are told in the morning to cook porridge and give it. If [the child] is small, we cut [the tablet] and give it. In the afternoon after you have given food, cut [the tablet] and give it to the child, in the evening give them food and cut [the tablet] and give it.” (Caregiver 5, non-adherent)

When given multiple medications, which require different preparations (e.g. dividing tablets or diluting oral rehydration salts (ORS) in water), caregivers described the considerable effort it takes to ensure correct preparation and timing, considering the additional resources that may also be needed for this (e.g. food).

The effort involved in seeking care was a barrier to attending, but conversely did not prevent caregivers attending referrals when the seriousness of the condition was understood. However, there was some disparity between CHW and caregiver accounts, highlighting the difference between understanding importance and prioritizing action.

"When the health worker tells me to go to the district hospital, I get worried, then we see the condition of the child has warranted referral, thus why we need [to attend the] referral to get treatment quickly" (Caregiver 13, adherent)

"When we look at people in Mchinji, like this time they are very busy in the garden [farming] tobacco, that a child is very sick and they should take it to the hospital, they feel they will lose time going to the hospital with the child" (CHW 9, adherent)

Medication perceptions

The ways in which treatment was perceived, both positively, negatively and in relation to effectiveness, influenced adherence. We found an interesting contradiction as both non-recovery and quick recovery were given as reasons for non-adherence. With non-recovery, caregivers indicated that if no improvement was observed then treatment would not necessarily be continued.

"What happens to make you stop giving drugs is that you are giving the drugs and you find that the child is not improving, so they say no that’s all I will just stop giving this drug" (Caregiver 8, adherent)

Conversely, caregivers (presented as the actions of ‘the other’) and CHWs discussed the quick recovery of children leading to the cessation of treatment, relating to ‘laziness’ as the effort of giving treatment that’s perceived as not needed or not working was burdensome.

"After starting treatment, the child is able to play around, they have the confidence that the child has improved when in reality the child is still sick" (CHW 5, non-adherent)

In Malawi there is a pluralist system of medicine, where traditional medicine operates alongside public and private provision of Western medicine. Given the choice of Western medicine or traditional medicine, one caregiver stated that some mothers (again described as the actions of ‘the other’) would opt for the later. Although interestingly care would still be sought from both, highlighting the everyday operation of medical pluralism in this setting. This was only raised by one group of caregivers, and was not acknowledged by CHWs.

"When the child is sick with pneumonia they go to the witch doctor, there they are told your child was thrown to the ground by witches and when they visit the hospital they are told the child has malaria. They prefer the witch doctor’s advice and leave the drugs" (Caregiver 22, adherent)

One group discussed a preference for injections, which are not part of the Malawi treatment guidelines [23], but are available from private facilities. This implied dissatisfaction with the standard treatment given freely by government facilities, and the potential for the pluralist nature of health service provision to influence adherence.

"When you go to these government hospitals no matter how sick the child they just give you panadol and bactrim. When you go to paying hospitals it’s where you get injections" (Caregiver 9, adherent)

Community influences

Community influences were discussed around pressures to share medications, and community solutions to adherence and referrals. Village clinics only provide care for children under-5 years as the group at highest risk of severe disease and poor outcomes; older children, such as siblings or neighbours’ children, would need to seek care at higher-level facilities which requires travel and resources. Both caregivers and CHWs discussed the behaviour of sharing medications or keeping spares for themselves or their neighbours. Caregivers stated that sharing was not approved of, as they understood the dangers of giving drugs without a clinical assessment, but it was accepted that this was a common practice.

"The one who shares the drugs thinks she is merciful and is helpful to the friend, while the receiving person just receives [the drugs] without knowing that the condition could be different" (Caregiver 15, non-adherent)

This suggests a ‘gift relationship’ and that there is also an element of expectation and reciprocity. CHWs mirrored this concern and several of them discussed strategies that they were implementing to try and understand this issue and address it, such as home-based follow-ups.

"…because of the follow-ups, we found that mothers most of the time when they take the drugs they share them with others who maybe are also sick in the village" (CHW 10, non-adherent)

Many CHWs described having the support of village health committees who work with them to conduct follow-ups of children being treated in the community at day 3. Some CHWs reportedly only gave 3-days of antibiotics instead of 5, with the remainder given during these household visits. Village health committees were reported as providing a supportive role in helping caregiver’s take their children for referrals, for example loaning them a community-owned bicycle for transportation. However, this was not uniform across all communities as some CHWs stated that transport was the responsibility of the caregiver alone. These highlight a lack of consistency in supportive care and between practice and health education messaging, between CHWs.

"If the guardian has complained that he doesn’t have transport that becomes our work together with the committee to help them find transport so that the child should receive that treatment" (CHW 6, non-study)