Study sample.

Purposive sampling was used to select a sub-sample of 30 children (<18 years) who did not take up their referral. The sample was selected to ensure representation from different health centres, child age, sex, and severity of hearing loss. Interviews were conducted with the main caregiver.

Data collection.

Interviews with caregivers were conducted at the local health centres and lasted approximately one hour. Topic guides were developed that included a range of open-ended questions. These were piloted and revised during the data collection period in light of the emerging themes. Caregiver interviews covered: history and impact of the child’s ear and hearing issues, experiences at screening camps, and barriers faced in attending the referral (S1 File). For stakeholders the interviews explored their perspective on the barriers experienced by families at the family, community, screening camp, and hospital levels and recommendations how to address these (S2 File). Interviews were audio-recorded and detailed field notes taken. The recordings were transcribed and translated.

Research team and reflexivity.

Two experienced researchers conducted the interviews: a male Malawian researcher (RT) together with a female UK-based researcher (TB). For stakeholders who were proficient in the English language, the interviews were conducted by TB in English, and the remaining were conducted in Chichewa by RT.

Analysis and findings.

Transcripts were coded by two researchers, and data was managed by nVivo (Version 11). A thematic analysis was used; data was coded into key themes and sub-themes through an iterative process, and a constant comparison of emerging issues identified between the two researchers.[17]

1. Location of hospital.

The distance to QECH was perceived by most caregivers to be vast and a significant obstacle to taking up the referral. For example, one caregiver explained that their village was 100km from Blantyre and, because of the challenging terrain, the journey would be at least 2.5 hours. It also required walking or cycling up steep hills to reach public transportation. Thus the journey was perceived to be challenging particularly for their children. Another caregiver described the challenges of making this journey particularly in the context of concerns that they would not be seen on the same day at the clinic:

It’s a long journey, imagine from here to Goliati you will ride a bike and in the hills you will be walking on foot. At Goliati we board another [minibus] to Limbe and then another to Queens. Its long journey and you might not be assisted the same day when you go. [Caregiver 14]

2. Lack of transport.

Several caregivers and stakeholders reported that transportation services, both public buses and ambulances, were not easily available to travel to Blantyre. Some explained that ambulance services at the health centre and district hospital level, in theory, can transport patients to the next level referral facility (i.e. from the health centre to district and district to QECH). However, this service was reported to be unreliable or only used for priority services such as maternity care. One caregiver explains their unsuccessful attempts to use the ambulance service:

We tried that time to get an ambulance but failed because every time we came to ask about the ambulance, we were told that it had already left. [Caregiver 14]

Further, stakeholders reported that the ambulance service to QECH was one-way only and once patients were in Blantyre they faced the additional challenge of finding a way back to their villages.

The other challenge is when they are discharged, because coming here is easy because they have an ambulance. When everything has been done here and they have been helped or they have been assisted, they still need an ambulance to take them back, so we don’t have a ready ambulance to pick them up. [Stakeholder 9]

3. Indirect costs.

Although most health care in Malawi is free at the point of delivery, over a third of caregivers raised concerns about indirect costs of seeking care associated with travel and time spent at QECH. Some reported that, because of the long distance, from their village to QECH it would cost around 1500 Kwacha, a price which is prohibitive for rural farming families.

A few caregivers mentioned that if they requested an ambulance, they were told to buy fuel for the journey, which they could not afford. In addition, there were also difficulties with paying for food required for both the journeys and time spent at the hospital.

Some things might be needed, [to travel to and wait at QECH] such as flour, firewood and relish and some other things like porridge flour, sugar and others. [Caregiver 1]

Some caregivers explained that their income depends on seasonal activities; at certain times of year they are not engaged in income generating activities making it difficult for them to meet the additional costs involved in care seeking. Many also felt concerned that seeking care would be a lengthy process resulting in several days where they could not be engaged in work on their farms. Further, some of the caregivers reported that there would be nobody to care for their other children if they travelled to QECH for several days. These interacting challenges were summarised by one caregiver:

From here [Chisoka] to Queens there is a need for proper transportation as you know this place is far. And when you arrive there you know these days [outside harvesting season], people don’t harvest enough and it is possible that we might not be treated same day, maybe we may spend some days. So [money for] food would and transport would be a problem. [Caregiver 9]

4. Fear and uncertainty of the hospital.

Several factors relating to the referral hospital were mentioned by caregivers and stakeholders as potential barriers to the referral uptake. Many caregivers and stakeholders expressed fear and unfamiliarity of QECH as a reason for not attending. Most caregivers had never previously been to QECH, which was perceived as a “big hospital”. Several caregivers asserted a fear that they “would not know where to go” once they arrived at the hospital. Further, fear of long waiting time at the hospital was raised as a concern by some caregivers.

Some people think that Queens is a very big hospital, you can spend the whole day without being helped. [Caregiver 7]

It is just fear, some have never been to Queens so referring them to Queens… and you give them directions. They may have money but for them to go, maybe it is fear. [Stakeholder 6]

5. Procedural challenges in the camps.

The interviews revealed a number of issues with communication at the screening camps that negatively influenced uptake of referral. As part of the camp protocol, caregivers were verbally advised to attend QECH and this was noted in their health passport. HSAs were instructed to then follow up with patients to check attendance to QECH and ensure they adhere to treatment or instructions. However, it was evident that many caregivers were confused about the referral process. Many caregivers reported that either they were not aware that they had been given a referral at all or that they were waiting to receive more information about when to attend QECH. Where possible, we examined health passports for the referral and found referral notes were lacking on several occasions. Caregivers explain the lack of information:

I was not told that we needed to go. We were just waiting for information on the day to go to Queens. [Caregiver 1]

Several caregivers expressed a motivation to take up the referral. However, lack of information about the referral in the camps together with other barriers prevented them from taking it up. One caregiver explains this:

I: But if you were told to go to Queens would you have managed to go?

P: Yes, I would have gone… perhaps transport would have been difficult. I would first have looked for transport and once found then I would go [Caregiver 5]

This caregiver also mentions difficulty with transport, highlighting the multitude of barriers faced in this context. Screening camps were reported to be very busy and the majority of caregivers described long waiting times to be seen by the clinicians. Most caregivers reported that the results of the tests were not explained by the doctor in the camps. As a result, caregivers expressed an uncertainty about what would happen at QECH. Some caregivers mentioned that they were just told that the problem was “big”. In addition, caregivers were not given information on how to manage their children while waiting to go for referral. Stakeholders also highlighted the lack of information given to caregivers as a substantial shortcoming of the camps, as explained by one stakeholder:

Of course giving them advice, advising them on what to do with the conditions, because they needed counselling for them to understand the problem, if the problem could be treated, or how can they be assisted with their problem. We didn’t have that time, and we just said no, just go to Queens and you will be treated or come to Thyolo you will be treated in such a way. [Stakeholder 8]

6. Awareness and understanding of hearing loss.

The majority of stakeholders felt that limited knowledge of ear and hearing health for most people living in the rural areas of Malawi was a substantial barrier to uptake of referrals, and some also indicated that children with disabilities may be neglected by the their families.

The most important issue which is like a barrier for them to access the services it is; themselves, because sometimes they don’t even know, even understand what is going on, so at the end of the day they don’t give them [the child] a second chance. They just declare that this is the way things are. Maybe you’ve heard somewhere that these kinds of children, or the disabled, people would just dump their house and just sit there. [Stakeholder 11]

Interviews with caregivers suggested that specific knowledge regarding the causes and available treatments for their child’s ear and hearing loss was limited, despite attendance at the KIM screening camps. Some caregivers also described seeking alternative or home-based treatments for their child. For instance, distilling cooking oil or traditional medicines in to the ear canal. However, many acknowledged that no improvements were seen post-treatment. Despite this, many of the caregivers did display an awareness of their child’s hearing loss. Most were able to recall when their child’s hearing loss or ear condition started, even if it was delayed and several described the impact on their child. For example:

We can say that the problem started at birth but then for us to realise her difficulty in hearing was when she was 4 years old. That’s when we realised that the child does not hear properly because when spoken at if she was not looking at you then she was acting in way like she hasn’t heard you while if she is looking at you, she was able to hear. [Caregiver 5]

In contrast to the stakeholder perceptions, caregivers did appear to be motivated to seek care for their child. They attended KIM camps and the majority of caregivers (n = 18) interviewed had also previously sought treatment at health centres for their child’s ear or hearing problem.

7. Lack of availability and visibility of ear and hearing services.

As well as the specific challenges to uptake of referral to QECH, the interviews raised more broadly the lack of resources at health facilities as a serious problem limiting access to ear and hearing services. Several stakeholders highlighted the lack of visibility of the ear and hearing services at QECH and Thyolo district hospital as a barrier to patients receiving appropriate care. They felt that because other staff at the hospitals were not always aware of the ear and hearing services, patients do not always actually reach the ENT department. Instead patients may be sent from department to department without ever finding the appropriate provider.

What is working well is; at least there is somebody who deals with these issues like the ENT clinician, where it doesn’t work well is; these other people who are not ENT clinicians, they don’t know what to do and they may send back some of the children when they are not supposed to be sent back. [Stakeholder 11]

Some stakeholders felt that these experiences would make people reluctant to seek care again. This was supported by caregivers who said that if they attended QECH, there was a risk of not receiving assistance at the hospital on the same day. This perceived risk discourages them from spending the money to get there:

We might go there and may not find the doctor. We only have money for one day [so] we may be stranded. [Caregiver 14]

Limited availability of the ENT personnel, in general, at health facilities was raised as an issue by both caregivers and stakeholders. For example, some caregivers reported previously attending the district hospital, which often involved a day of travel, but finding that the ENT clinical officer was not available and therefore no care was received. Stakeholders attributed this to lack of ENT personnel.

They think of transport issues, and how they will reach there if they will be admitted or how they will meet the ENT person since its only one person. Sometimes he is not there, he goes to the meetings, and there is no one to help them on the issues of hearing problems. [Stakeholder 1]

Several caregivers also asserted that health facilities were not able to provide treatment for ear problems because they did not have drugs and once they had experienced this, they did not feel it was worthwhile to seek ear and hearing services again. The lack of adequate medication, equipment and human resources to enable diagnosis and appropriate treatment for children with ear and hearing problems was raised by several stakeholders. For example, health centre staff described the challenges of managing ear conditions due to limited resources and expertise:

We don’t look into the ear, we just see if the child is discharging, we look at how the pus looks like and give them a cotton to wipe with but we don’t look inside because we don’t have the equipment to use. [Stakeholder 4]