The findings of this study are presented in five sections: the first three sections are dedicated to the three key findings (each of which is subdivided into three components), the fourth section, ‘Attitudinal Barriers’, presents the findings about two kinds of potential attitudinal barriers, and the fifth section is on the identification of ‘time’ as a common underlying factor.
Key Finding 1: Cost as a barrier
Malawi has a predominantly agricultural economy, including a lot of subsistence agriculture, hence most rural citizens earn a living by farming . Everly, a 77-year-old woman with visual and mobility impairments who was unable to farm as she once did, described challenges with regard to finding work:
“I try to go for piecework in other people’s fields; but that doesn’t work because they can’t allow me because of my disability”.
The intense physical labour involved in farming is frequently unmanageable (or at least perceived to be) for people with sensory and, especially, mobility impairments, often rendering them unemployed and unable to earn money .
Another interviewee, Liliana, a 21-year-old woman who had impaired mobility associated with a chronic lung condition, never worked in farming but used to run a small business. Talking about why she had to close her shop, she said,
“It has everything to do with my illness, because now I am not able to be as productive as I used to be and also we used most of the money in the business to pay for the transport to the [health care] facility”.
When income is limited, as described here, costs may become barriers. Even though the closest health care facility to most participants was a public community health centre, where services are free at the point of delivery, almost all the people interviewed described cost - be it of transport, a ‘health passport’ or pharmacy drugs - as a significant barrier to timely and adequate health care.
Cost of transport
A few participants, unable to walk to the health centre due to their impairment and with no outreach services to attend to their medical needs, described the need for transport in order to access health care. One man, Patrick, a 47-year-old man with severe mobility impairments following a recent stroke, revealed the financial difficulties he has since faced in trying to reach the health centre to receive care when needed:
“I travel on a bicycle which we borrow from some people in the community, and we pay for it, but sometimes it happens that we don’t have the money for hiring the bicycle, so instead I just stay here at home because there is nothing else we can do about it”.
No longer able to walk due to his stroke, Patrick could not work on the farm to earn a living anymore. Given this, the next question enquired about where he found the money to pay to travel by bicycle last time he went to the health centre:
“My sister is the one who provided the money […] She had been asking for piecework from other people in the community, and when she worked, they paid her and she took part of the money and we used it for my transport”.
The themes of reliance on others and family support, which surface clearly here, are expanded upon later as another finding.
Francis is a 25-year-old man with impaired mobility and a chronic lung condition who, though able to travel to the local health centre for free, explained the financial considerations involved in reaching facilities which are further away:
“I have a bicycle which I use whenever I want to go to [the community health centre], which is closer, but one time I went to [the mission hospital], for that I sold my tobacco and I used the money for transport”.
Francis went on to explain how this hospital was often the more appropriate facility for the health care he required and highlighted the impact of his inability to pay to access it:
“It’s difficult, because it always involves money in order to travel because I have to use public transport, so money for me is an issue here, and I cannot do anything about that aspect, and that is why I resort to just going to [the community health centre] nearby for treatment”.
The close link between cost and distance is clear here and the issue of distance was frequently mentioned, especially by the participants who had a chronic lung condition. For example, Stanley, a 77-year-old man with a mobility impairment and a chronic lung condition, spoke of the difficulty associated walking to the health centre to avoid the cost of transport:
“Even to go to [the community health facility], I must sit down [to rest] several times before reaching there”
Cost of a health passport
In Malawi, all users of public health facilities are required to own, and take care of, a personal ‘health passport’ in which, given the absence of an established online system, their complete medical record is kept. In some discussions, the challenge of this responsibility was revealed, with Francis, 25, saying, “my mother had even lost my initial health passport because it was not constantly needed” and Stanley, 77, telling us his document was “destroyed in the rains”. For a patient to replace their lost or damaged health passport costs 200 Malawian Kwacha (the equivalent of US $0.28), which is approximately one third of the Minimum Daily Wage in Malawi .
Joseph is a 56-year-old man who has a hearing impairment and requires treatment for his symptoms of a chronic lung condition but lost his health passport long ago. He described his need to pay for a replacement as the primary reason for not seeking health care:
“I don’t have money to go and buy a health passport to use so I didn’t go to the facility, because you are required to have a health passport in order to be able to be attended to at the facility […] The money that we find from the piecework is not even enough, so how can I take K200 from it in order to buy a health passport? We only aim at buying food”.
Cost of drugs
A consequence of poorly resourced public health centres - another barrier to adequate health care which will be presented as a finding in the next section - is the financial burden that frequent drug stock-outs places on patients. Users of the health care facility are required to purchase, from a private pharmacy, their prescribed medication which would have been provided for free at the health centre had it not run out of stock. Participants often drew attention to this problem and its impact in the interviews:
“The issue is the shortage of drugs […] we are told that the drugs have run out, so we are told to buy the drugs instead. We from the villages who do not have money, […] where will we get the money from? So we end up getting back home without any assistance”” (Jocelyn, a 51-year-old woman with visual and mobility impairments)
“It hurts to see that they are telling you to go and buy the drugs at the pharmacy because they don’t have the drugs, when we have gone there for such treatment […]. So when you get back home you can’t buy the drugs and you end up continuing to suffer as if you had not gone to the facility in the first place. (Everly, 77).
Key Finding 2: Insufficient health care resources as a barrier
Almost all the interviews revealed that the health care provision available for this group of people was frequently inadequate to meet their medical needs, mostly due to functional, practical and systemic problems. Specifically, the main reasons for dissatisfaction with health care provision identified among our participants were unreliable drug supply, a shortage of doctors, and a lack of diagnostic testing and specialised treatment.
Not enough drugs
As alluded to in the comments about personal financial consequences of drug stock-outs, the health care facilities attended by our participants, and in many other parts of Malawi , frequently run out of drugs. The participants of this study frequently expressed frustration with the shortage of medicines:
“Here in our health facilities we have very big problems, because drugs are rarely found in the hospitals” (Ruth, a 45-year-old woman with a hearing impairment)
“There are cases where drugs run out due to the number of people who come to the facility to seek treatment” (Family member interpreter (mother) of Nathaniel, a 25-year-old man with a hearing impairment)
“The drugs are in short supply; it only takes a few days and then we hear that the drugs have run out” (Liliana, 21).
When asked how their access to health care could be improved, some participants explained that a constant supply of medication would make a considerable difference.
Not enough medical personnel
It became clear over the series of interviews that the inefficiency and under-staffing of the health care facilities provides a direct barrier to accessing timely health care by causing long queues and significant waiting times:
“We might wait even up to 1 o’clock in the afternoon [having arrived at 9 o’clock] before we even have the chance to meet with the doctor” (Family member interpreter (grandmother) of Ester, 20)
“There is a problem because we go there when we are not feeling well and, because of the number of people there at the facility who need to be assisted […], it takes too long and for a patient it also becomes very uncomfortable” (Family member interpreter (mother) of Nathaniel, 25).
Discussions with participants revealed that there are insufficient trained medical personnel, and particularly few doctors, at the health care facilities which our participants were able to reach:
“At the moment we only have one doctor, and he has to treat over 300 patients in a day; that is a lot of work” (Everly, 77)
“There are times where those hospital attendants who sweep the facility are the ones who dispense the drugs, because the medical personnel are tied up and because there are too many people” (Family member interpreter (husband) of Ruth, 45).
Another participant, Stanley, 77, who went on to express his fear that “someone might die right at the facility” as a consequence of the extreme waiting times, highlights his doctor’s tardiness as a contributing factor:
“Another problem for us is the time the doctor reports for duty to open the clinic, most of the time he is very late to open the clinic and start providing services to people”.
The interviews also revealed that knowledge of the amount of time taken up by a visit to the health centre often deters them from attending at all.
Not enough diagnostic testing or specialised treatment
Being unable to regularly travel to better-equipped facilities, due to both practical and financial reasons mostly resulting from their impairments, some participants expressed disappointment at the quality and responsiveness of services accessible to them:
“I would really be very grateful if […] there was a provision for running tests in my chest so that they would be able to find out what really is my problem, and then they tell me what is really wrong with me; so that I would be given proper medication, instead of working on assumptions” (Liliana, 21)
“I would really like if there was a way of finding out what is causing all these problems that I have, and then be given proper medication for it so that my life will get back to normal” (Stanley, 77)
“The treatment that I receive is not up to my desired expectations. I really would appreciate it if they would give me an injection, because I know that injections are very effective; but I have never received any” (Samson, a 67-year-old man with impaired mobility due to arthritis).
Key finding 3: Dependence on others as a barrier
A recurring theme throughout all the interviews was that of dependence and needing support. It was clear that reliance on family, friends and the community could give rise to a social barrier to timely and adequate health care, with some participants losing their source of support, and others at the mercy of their care-giver’s availability, financial situation and, ultimately, compassion. The notion of dependence as a barrier is intrinsically linked with other barriers and, among our participants, dependence mostly presented itself as a theme in discussions about financial support, transport and distance to a health facility and, in one case, communication.
Dependence on others for financial support
In response to the question ‘how do you currently earn a living?’, participants often revealed that their inability to make enough money rendered them reliant on others:
“This is a very big challenge because I am incapacitated, and I cannot do any work here at all, and now I am solely dependent on the people who are looking after me” (Patrick, 47)
“I am not able to do a lot of piecework anymore; this affects my family in terms of basic necessities; so much so that we live with little and depend on getting support from other people surrounding us here” (Joseph, 56).
Notably, discussions about the need for family or community financial support, such as these above, did not appear to be restricted to a particular age group, gender or type of impairment. One woman, Everly, 77, stressed the role that charitable donations played for her:
“There are also some well-wishers in the village who sometimes give me some money which I eventually use to buy the most day-to-day needs”.
Meanwhile, Nicholas, a 70-year-old man with a mobility impairment who lived alone and described his financial situation as “a limiting factor”, had lost his source of support:
“I was a very active young man, before my legs developed these pains and became stiff […] Now there is nothing that I do that can really fetch me the help that I need; the one whom I depended on for financial support lives very far now”.
Dependence on others for transport to health care facility
The other limiting factor that Nicholas, 70, discussed was the reduced availability and accessibility of transport since his relative stopped taking him to the health facility by bicycle. Similar accounts linking dependence on others with restricted ability to travel were given by other participants, mostly those with mobility impairments:
“[The reason why I have not gone to the health facility recently] is because of the one who takes me; he is usually not around to take me that much” (Patrick, 47)
“No I can’t [ride a bicycle anymore], but if there is someone to take me, then that can work, otherwise it will be impossible for me to do that now” (Stanley, 77).
Other interviews revealed how the need to be accompanied when walking to the health centre may also limit when one can go. The family member interpreter (grandmother) of Esther, a 20-year-old woman with a mobility impairment, described these kinds of challenges in her explanation about how her granddaughter reaches health care:
“We walk very slowly till we reach the health facility […] because I also have a walking difficulty because my legs are no longer able to support me due to old age”
“I feel that she needs to be under constant monitoring, and that is impossible because I cannot manage to take her all the time, due to both of our mobility challenges”.
Dependence on others for assistance with communication
One interviewee, Ruth, 45, revealed the difficulty she sometimes faced, as someone with a hearing impairment, when trying to converse with and understand her doctor. The notion of dependence on others for effective communication with health care practitioners was presented by Ruth’s husband when he spoke as her interpreter for part of the interview:
“I write something and then give it to her to take to the doctor; so they in turn write back to me when they have not managed to communicate with her properly. […] because she is my wife, I am able to sit her down and explain to her one by one, everything which the doctor has found out and said” (Family member interpreter (husband) of Ruth, 45).
Whilst many participants, such as Ruth, expressed gratitude towards those who supported them, some also showed signs of frustration at the lack of independence as captured in the following quotes:
“If only this pain in my back would go; I would stop being so dependent on them and would start to do things in the way I used to do before” (Stanley, 77)
“Things have completely changed, I have become helpless because I can’t do anything by myself the way I used to do in the past” (Samson, 67).
Findings about two kinds of attitudinal barriers are presented in this section: first are those on the attitudes of participants towards health care, where unfavourable health seeking behaviour may become an access barrier, and second are the findings on the attitudes of community members and health care workers towards the participants and their disability.
Unfavourable health seeking behaviour as an attitudinal barrier
When asked why they decide to seek health care, participants generally responded with variations of: “so that I would feel better” (Francis, 25).
Some participants, most men and one woman, exhibited what might be considered unfavourable health seeking behaviour . There were a few comments about a lack of need and a lack of motivation to seek health care as well as occasional references to the use of traditional medicine in the place of conventional health care:
“I saw that I was better off than most of them who were there [at the health care facility], so I said to myself, why am I bothering to come here for treatment when I am better than most of them? […] So I just left and got back home, and never went back” (Nicholas, 70)
“The problem started again […] and I had to go to the traditional doctor again” (Samson, 67)
[In response to: ‘what is stopping you from going to the health centre about your eyesight problems?’] “Nothing, I am just lazy when it concerns that” (Jocelyn, 51).
Attitudes towards disability
The participants of this study generally gave very positive responses when asked how they were treated by people in their community:
“They associate with me without any problem, and they also don’t treat me differently from everybody else, they just know to speak loudly so that I will be able understand” (Joseph, 56)
“They have accepted that I have this problem and they help me in any way they can so that I don’t have to be uncomfortable” (Liliana, 21)
“I am grateful that the people in the community accepted me following my disability, […] I could be a laughing stock […] but it is not such in this case. People here they come to chat with me, they come to see me, nobody has ever spoken badly about my illness” (Patrick, 47).
The responses given by two of the elderly male participants, were exceptions to these assurances, as they revealed feelings of social isolation within their rural communities:
“I don’t get treated the way I am supposed to; because sometimes people can say hurtful words to me because of one reason or another, and I am not very free when I live here” (Stanley, 77).
“Sometimes I just see the way that they are reacting around me, I just know that I am not needed amongst them, so I just leave and come back home and sit here by myself” (Nicholas, 70)
Furthermore, whilst participants often spoke about the shortcomings of the health care facilities, none reported experiencing any issues with the attitudes of the health care workers. The following quotes are responses to the question, ‘how are you treated by doctors and nurses when you receive care, compared to other people or compared to before you became disabled?’:
“We don’t have any problem, we are assisted properly” (Family member interpreter (grandmother) of Esther, 20)
“They treat me well […] the way [all the patients] are treated is the same” (Everly, 77)
“There is no difference; the way they do now is just the same as they used to do it before” (Jocelyn, 51).
Time as an underlying factor
Regardless of the specific barriers each participant described, a recurring theme was ‘time’. Whether the issue was lack of it, use of it, waiting or delays, time pressures appeared to create and exacerbate health care access barriers for people with disabilities in this setting.
Some participants drew attention to the role of time within financial barriers:
“It takes a long time for the crops to reach the stage where we could be able to sell” (Liliana, 21)
“Fortunately, […] she may take several months before she goes [to the clinic] again; so we have some time to build up [money] again” (Family member interpreter (husband) of Ruth, 45).
Similarly, ‘time’ presented as a common underlying theme behind complaints about health care provision. The amount of the day a visit to the health centre requires was repeatedly posed as a factor contributing to dissatisfaction with health care. Time was mentioned both in reference to travelling to the facility and waiting on arrival:
“it takes me a very long time to go and come back since I walk with a lot of difficulties” (Samson, 67)
“A person may leave their home as early as possible to reach the facility in good time, but will have to wait a long time before the doctor reports for duties” (Stanley, 77)
“We usually wait a longer time since there are many people who go there since it is a public health facility” (Ruth, 45).
Some participants described how the long waiting times mean patients’ conditions often decline considerably before they receive any medical attention. Samson, 67, gave a different, practical, reason for time being an important consideration:
“we want to be there early so that we become one of the first people to be attended to, so that I […] beat the scorching sun on my way back”.
Finally, participants who discussed the dependency that results from their disability often explained it is how the lack of time or availability of the person who assists them that causes reliance on others to be an access barrier:
“Whenever I asked him to take me, he only postpone to the other day, and in that way, days go past” (Patrick, 47) […] “We are waiting for the cousin who takes him to find time so that he can take him back [to the health care facility]” (Family member interpreter (sister) of Patrick).