Background
Health care accessibility
Health care accessibility for people with disabilities in Malawi
Research objectives
Methods
Recruitment
PALa | PAL+b | Control | TOTALS: | |
---|---|---|---|---|
Number interviewed | 4447 | 4145 | 4365 | 12,957 |
Difficulty seeing ≥3 | 13 (0.3%)c | 16 (0.4%) | 16 (0.4%) | 45 (0.3%) |
Difficulty seeing < 3 | 4434 (99.7%) | 4129 (99.6%) | 4349 (99.6%) | 12,912 (99.7%) |
Difficulty hearing ≥3 | 24 (0.5%) | 10 (0.2%) | 17 (0.4%) | 51 (0.4%) |
Difficulty hearing < 3 | 4423 (99.5%) | 4135 (99.8%) | 4348 (99.6%) | 12,906 (99.6%) |
Difficulty walking ≥3 | 54 (1.2%) | 47 (1.1%) | 28 (0.6%) | 129 (1.0%) |
Difficulty walking < 3 | 4393 (98.8%) | 4098 (98.9%) | 4337 (99.4%) | 12,828 (99.0%) |
Characteristic | Men | Women | N |
---|---|---|---|
Participants aged >18 ≤29 years: | 2 | 3 | 5 |
Participants aged ≥30 years: | 2 | 5 | 7 |
Participants with a mobility impairmenta: | 3 | 1 | 4 |
Participants with a sensory impairmenta: | 1 | 1 | 2 |
Participants with a mobility and sensory impairmentb: | 0 | 2 | 2 |
Participants with mobility impairment and a chronic lung conditionc: | 2 | 1 | 3 |
Participants with a sensory impairment and a chronic lung conditionc: | 1 | 0 | 1 |
Data collection
Analysis
Results
Key finding 1: cost as a barrier
“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”.
“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”.
Cost of transport
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:“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”.
The themes of reliance on others and family support, which surface clearly here, are expanded upon later as another finding.“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”.
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:“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”.
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:“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”.
“Even to go to [the community health centre], I must sit down [to rest] several times before reaching there”
Cost of a health passport
“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
“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
Not enough drugs
“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)
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.“The drugs are in short supply; it only takes a few days and then we hear that the drugs have run out” (Liliana, 21).
Not enough medical personnel
“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 Esther, a 20-year-old woman with a mobility impairment)
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:“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).
“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)
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:“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).
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.“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”.
Not enough diagnostic testing or specialised treatment
“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 could 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
Dependence on others for financial support
“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)
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:“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).
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:“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”.
“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 facilities
“[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)
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, 20, described these kinds of challenges in her explanation about how her granddaughter reaches health care:“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).
“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
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:“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).
“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).
Attitudinal barriers
Unfavourable health seeking behaviour as an attitudinal barrier
“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
“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)
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 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).
“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)
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?’:“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).
“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
“It takes a long time for the crops to reach the stage where we could be able to sell” (Liliana, 21)
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 highlighted as a factor contributing to dissatisfaction with health care. Time was mentioned both in reference to travelling to the facility and waiting on arrival:“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).
“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)
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 usually wait a longer time since there are many people who go there since it is a public health facility” (Ruth, 45).
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:“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”.
“Whenever I ask him to take me, he only postpones 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).
Discussion
Discussion of cost as a barrier
Discussion of insufficient health care resources as a barrier
Discussion of dependence on others as a barrier
Summary of correlations between the key findings and the accessibility models in the literature
Barrier to health care access (Key Findings of this study) | Delays (as described in Thaddeus & Maine’s Three Delays model [8]) extended by this barrier | Dimensions and abilities of accessibility (as described by Levesque et al. [9]) hindered by this barrier |
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Key Finding 1: Cost as a barrier | 2nd delay (arrival at a health facility) | Affordability Ability to reach Ability to pay |
Key Finding 2: Insufficient health care resources as a barrier | 1st delay (the decision to seek care) 3rd delay (the provision of adequate care) | Availability and AccommodationAppropriateness |
Key Finding 3: Dependence on others as a barrier | 1st delay (the decision to seek care) 2nd delay (arrival at a health facility) 3rd delay (the provision of adequate care) | Ability to reach Ability to pay Ability to engage |