Background
Methods
Action | Development of case study ideas | |
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Raw data | 8 FGDs – gender segregated; urban and rural 8 IDIs – Directors CHC, urban and rural | Hospital utilisation pro-wealthy Determine if barriers to hospital care exist. |
Coding | Code data (interviews) by topic, frequency, sub-group (gender, rurality) | Descriptive coding to identify barriers: individual, community, health facility. |
Themes | Group codes into categories | Develop coding framework: group consistent and related themes to identify systemic barriers into categories. |
Concepts | Investigate relevant conceptual frameworks, related research; select analytical framework | Align coding categories to Peters et al. [29] framework of access criteria: geographic accessibility, availability, financial affordability, social acceptability. |
Theory | Universal health care requires universal access: determined by health and non-health related factors. | Case study demonstrates direct costs for health care are only one factor determining access. Demand and supply side interventions are needed to address barriers. |
Geographic accessibility | Availability | Financial Affordability | Acceptability |
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Supply-side factors
Service location
Hospital coverage - long distances to hospital - 13 districts, only 6 hospitals - 25 % patients >2 h to primary facility Patient transport provided by health service - cannot access all areas - limited availability during wet season - no service to transfer patient home - recovering patients stranded Demand-side factors
User’s location
Isolated communities - Infrastructure poor - rugged terrain, poor roads + bridges - ambulance cannot reach patient - patient journey to services difficult Public transport - no connections to distant villages - infrequent services Private/community transport - uncomfortable, difficult journey being carried the ‘traditional way’ - walk, use porters, horse - unreliable, ad hoc arrangements - family/community vehicle, police - need to hire private car, truck, motorbike | Supply-side factors
Health workers, drugs, equipment
Patient transport - too few ambulances - lack of coverage - poorly maintained - out of service, no fuel, no driver
Service delivery
Short opening hours - unable to access services after 3 pm - facility phone not answered 24 h Ambulance not available 24 h - no emergency service outside hours - no referral to hospital outside hours Long waiting times at hospital - staff not assisting lost patients - randomly rescheduling appointments Laboratory tests, blood supplies - few service locations - service availability erratic Medicines – regular stockouts
Human resources
Staff often not available to accompany patient in ambulance - rely on companion for clinical support Demand-side factors
Patient transport
Fear of being stranded after hospital visit - no fee support for transport home - patients stranded while still in recovery Repatriating deceased relatives - limited provision through health services - no established private providers | Supply-side factors Medicine stockouts in public sector - purchase medicines from private sector Blood supplies limited - high cost of blood from private donor - no standard charge Demand-side factors
Costs and prices of accessing services
Out-of-pocket expenses - Ambulance - patients/family pay for fuel - patients/family pay driver - costs to return home after transfer Transport charges - private car, truck, motorbike - public transport fares - repeat visits extra burden Indirect costs - food, accommodation, transport - recuperation period - companion/s costs - gifts, contribution to host family - opportunity costs - lost income - divert money needed for essentials Repatriation of the deceased - provider surcharge to carry deceased - large families, costs multipled - previously experienced prohibitive costs - families choose to not seek care - reserve money for funeral costs
User’s resources and willingness to pay
Ability to pay limited, poverty rate high - 44.3 % population below US$1.25 per day - direct + indirect costs barrier to access | Supply-side factors
Characteristics of health services
Staff conduct - blame and shame attitude to vulnerable - shouting at patients - delaying care, prolonging labour Nepotism - ignoring patient requests for assistance - fast track wealthier patients, family Provision - service coverage poor - six hospitals to cover 13 districts -laboratory tests - irregular availability - patient transport poor quality Demand-side factors
User’s attitudes and expectations
Dissatisfaction with quality of services - fear journey/transfer to hospital without medical supervision - disrespectful staff attitudes, nepotism Social isolation visiting hospital - hospital far from home, unfamiliar area - overwhelmed by hospital systems - depend on family support near hospital - resignation/preference to ‘die at home’ Medicines - unconvinced medicines effective - given same medicine, different illnesses Traditional medicines - strong cultural belief supports efficacy - acceptable substitute/preferred option - used to complement medicines |
Results
Geographic accessibility to hospital services
“We tried to call the ambulance but the driver replied that the ambulance was broken. We were suspicious that the ambulance did not come, not because it was broken but because the road condition is bad and our village is far from the CHC. Anyway, the patient had no strength to do the delivery at home, so the families decided to take her to CHC by gerobak pushcart. Because our village is far away and the baby is also bouncing, so the baby was born inside the gerobak on the way to the health centre.” [Urban female, 35]“… sometimes when it rains the trees will collapse over the road, sometimes it gets cut off, this makes it difficult for us when we have to refer patients. This road was built during the Indonesian times, there are parts that were rehabilitated but then destroyed again by natural causes.” [Rural D-CHC]
“We start walking at 3 am and arrive [at the health post] 12 midday. Therefore most pregnant women have the delivery process at home.” [Urban female, 47]
“A pregnant lady received a referral to hospital yet the ambulance service was not available. She had to travel to hospital in a truck. On the way to hospital, she had to do an immediate delivery process in the truck. Unfortunately, the delivery process failed. The mother and the baby passed away during the process. Hence, we had to carry the body back to her house because the truck would not bring back the cadaver. People believe that public transport [for business] cannot take the cadaver because it will bring disaster to the company.” [Rural male, 31]
“Some of my neighbours, particularly the elders, could not make it to the health centre or Dili hospital for treatment because they cannot walk. They hear some bad experiences from other patients.” [Urban female, 44]
“First of all, the road in the villages is still a problem. The Ministry of Health, when allocating the transportation such as the Ranger model, it’s not conditioned to the type of terrain. Only cars like the Hilux or Highlanders with bigger tyres can operate in this type of territotry because the road in our rural areas are unpaved and when it’s raining, it’s really difficult for us.” [Rural D-CHC]
“Sometimes the hospital ambulances are all occupied so then the multi-function has to transport the patients who we referred. That is what we are implementing so far and about the equipment that we use in the multi-function, they are not adequate. So it makes it difficult for us. …the multi-function is not made for transporting people because there’s nowhere the patients can lie down in there because it is not equipped as an ambulance would be. The car is made for people to sit in, not lying down. And sometimes the oxygen that they prepared in there, sometimes [there is] only empty tanks. So when we transport the patients we have to create conditions for it so this is what makes it difficult for us, that we need to improve.” [Rural D-CHC]
“If the condition of the vehicle is good, we feel we can refer more. But… sometimes we call and the car is somewhere in the rural area, we feel that this is also a difficulty because sometimes there are patients who are on transfusion and in need of urgent transfer, or bleeding. When during that time all the cars are being used, then it’s a problem. Sometimes we will contact for help from NGOs or the national hospital so they can send an ambulance to transport the sick… We discussed it at the coordination meeting, that we have difficulties during the referrals. [We asked the NGO] ‘If we don’t have any transportation available, can we contact you to come and help us?’ and they said ‘Yes’.” [Urban D-CHC]
“For the patients themselves, with the difficulties they have, they couldn’t come to the health centre, therefore we…come to them when the family or community members have informed us about a patient. So in this referral system, we have to come to them because they don’t have good access to road, transportation,…” [Urban D-CHC]
Availability of hospital services
“…if we arrive here [at the CHC] and the health workers transfer us to [the referral hospital] we always have difficulty with transport. So we have to organise private or public transport. The ambulance is always broken, or there is no fuel, no driver because the driver has died. The driver passed away 8 months ago and hasn’t been replaced. … We know it is impossible to get transferred… They take our IV out and we go via public transport. Even if an ambulance does take us, there is no health worker with us. We just go with a family member and driver.” [Rural female, 24]“I went to Dili hospital via ambulance. At first I couldn’t though as the ambulance had no fuel. This is a big problem and happens many times. Finally they got some fuel. At the time I was unable to walk or sleep well and the ambulance had no mattress and was in a bad condition. Then they got a mattress and took me. I arrived at the ED [emergency department] and they pushed me [via wheelchair] to registration and registered my name.” [Urban male, 55]
“This is my first time at the hospital and I don’t know exactly which place to go to but they didn’t care about me… I waited and waited with no one caring about me. I returned home …Why come back? I went to a private pharmacy and got the medicine instead…I want to say again, when I went to the hospital they were rude to me. I don’t like to return to that hospital and I also have some traditional medicines.” [Urban female]2“These health service systems are confusing…If we arrive at 3 pm then they say ‘you are late’, doctor is not here, you can go back and return tomorrow. This disappointed and annoyed patients who come from far villages like us. Consequently, some patients do not want to go back to hospital but chose to return home to the district.” [Rural male, 29]
“… some patients who have understanding about the referral, they will come but if they are older people, for example, they will have a lot of excuses, such as ‘Who is going to accompany us at the hospital? Who is going to look after the children?’ and stuff like that. That’s why they would not come to the hospital but the staff always tell them that they can come to the health centre first for observation and if the doctors approve, then you will just receive medication and can come back home, so no need to go to hospital. So we always try to give them positive thinking so they can come. I think the doctors and nurses have ways that they can convince their patients.” [Urban D-CHC]“… sometimes the patient doesn’t want to go [to hospital] … They said, wait let’s communicate with the patient’s family; so many times we saw they lost the referral letter. So that always happens in the centre, … some we give them referrals today, they will come up with a lot of excuses and lose the referral. Some, they got to the hospital but don’t go in as soon as they see the situation there. There are a lot of people at the emergency so this becomes a challenge for them, so they decide all of a sudden not to go in. So we don’t know where they ended up, even though we have their record of registration here at the centre but we don’t know where they’re from, where do they live, because we cannot control all this.” [Urban D-CHC]
“…the ambulance needs to take us back. That’s why we don’t want to go there… It is difficult to go out and try and get public transport because we are walking like drunk people, we are 100 % still weak. It would be better if they came and got us.” [Urban male, 64]
Financial affordability of accessing hospital services
Transport costs
“Every Thursday I had to go to the hospital to have treatment… During this 2–3 years I went only twice with the ambulance … An anguna [minibus] is $2 to Dili. If I have no money, I have to borrow. I will say to the driver I will pay when I get home, hoping my family will have found some. But if I have no money I can’t go. Sometimes the driver will let me pay later. If he says no, I can’t go.” [Urban male, 60]“It becomes an issue that will prevent us from doing our next check–up in [the referral hospital] or Dili. We have no choice, because we want to get better from our sickness so… we have to try hard to get money, otherwise we borrow our neighbour’s money to do the treatment.” [Urban female, 44]
“In my village there is no public transport to rent particularly in the night. Finally, my husband called my brother living in town to help us find transport to pick me up and take me to the hospital…For those who have a serious illness or pain, they must be carried by family until they pass the river, then look for and hire transport - truck $50 and mikrolet/anguna minivans $100 dollars - to bring the patient up to the CHC. Because of the road conditions… cars rarely want to get there, even if the patients are able to pay the high price. For those who don't have money and suffer severe disease, they’re just waiting to die." [Urban female, 36]
“My father and I had to stay in Dili for 2 weeks. Because my father is sick, we cannot travel in the mikrolet [minibus] to hospital… The taxi fee is so expensive, we have to pay $8 for round trip. We have high expenditure during the treatment in Dili, consequently we were running out of money and we decided to return [home]” [Rural male, 34]
Blood supplies
[After a complicated birth delivering twins that later died, the patient was transferred from the CHC to the referral hospital.] “The doctor [at the CHC] helped take out the placenta. They said I had no blood and they transferred me [to the referral hospital]. They said we needed to find blood. We have no family there and don’t know how to do this. My husband asked people in the hospital. We found them and we had to pay $30. They were my husband’s friends… After 3 bags were finished they said I was still anaemic and they transferred me to Dili. …In Dili we have no family and again they said we have no blood. We went to FFDTL [military base], they came to the hospital but unfortunately they were not the same. During the hospital stay one doctor came to me and I didn’t recognise he was a family member… He donated and I didn’t have to pay him. Then he looked for 3 more people. I then had to pay $30 a bag again, costing $90. I stayed 1 month in hospital.” [Rural female, 27]“Since there is no blood supply, the patient's family ran around looking for donors and the patient died due to running out of blood. When I was hospitalised my family bought three bags of blood; the price was $300 [$100/bag].” [Urban female, 28]
Repatriation of the deceased
“Three incidents happened to our family. Our 3 children passed away … So as ordinary people, we cannot do anything to cure our child and the child has to die. As part of that, when our child passed away at [the referral] hospital the ambulance cannot evacuate the dead body to remote villages. Hence, we have to hire private ambulance and fill it with fuel which cost up to $100/trip… Based on this experience, we decided not to bring our fourth child to [the referral] hospital and we prefer they die at home than suffer like the other three family members.” [Rural male, 42]“The oldest people in the village are afraid… When they pass away no-one can pay to have them taken back… like $250. So it is better they stay here and not put more pressure on the family… Better to just die here. We want to go to Dili because we want to survive but it is hard.” [Rural female, 27]
“One day a baby died in the referral hospital and the family had no money to pay for gasoline ($15), therefore the family had to bring the cadaver back home by motorbike. Last month there was also a young male patient who died in a referral hospital after midnight, around 1 am. … the funeral car was damaged so the families had to carry the cadaver home [far from the hospital]. Transportation will not be rented to transport the cadavers because there is a traditional belief that will bring bad luck to their business.” [Urban female, 38]
“We do not want to go to [the referral hospital] or Dili because we prefer to save money to buy coffee and tea for the funeral preparation than pay for transport fuel.” [Rural male, 69]“The family had no money to bring the baby back. The health worker said ‘the body is going to be in the land here or there, so why not here. The mother is still stressed as a result.” [Rural female, 35]“… when the patient dies, no car transfers their body back home. Therefore, they just surrender to their diseases and say ‘I go I die, I stay I die. Better stay and die in my house and not put many pressures or make trouble for the families.’” [Urban female, 44]
Food and accommodation costs
“In hospital the food and bed are provided only for the patient, and the person who accompanied the patient did not get food and a bed inside the room/hospital. Therefore family members had to buy their food outside. During treatment… we did not buy any medicine, all medications were provided. The only difficulty is about the food for the family members who look after the patient.” [Rural male, 24]“I have another experience when I stayed in hospital. I see with my own eyes where the families divided a plate of food (actually for patient) into two parts so that both the patient and caretaker can eat a little bit.” [Urban female, 36]
“Apart from transport, expenses for food is another issue for us to travel to [the referral hospital] and Dili. For patients who do not have family in Dili then he has no reason to stay in Dili. The patient will decide to return… home because they have no family to look after him/her.” [Rural male, 34]“… we stay in Dili with our family but we also have to help them, such as share to buy some food and credits for electricity etc.” [Rural male, 29]
Acceptability of hospital care
Availability of medicines and diagnostic tests
“The last 6 months when I went there they did this examination for me. I don’t know why they said this time that they have no examination for urine.” [Urban female]
“During this 3 months, I am doing [TB] treatment in [the referral] hospital. There’s now an X-ray test for sickness at [the referral] hospital.… The doctor recommended I do x-rays in Dili. I stayed in Dili for 3 days and the x-ray result is that I suffer from TB …The hospital asked me to return to Dili hospital for check-up … but I could not make it for the check-up because I have financial issue that prevent me returning to Dili.” [Rural male, 66]
“I think both traditional medicines and other medicines are the same. They both have advantages and disadvantages… we have to help ourselves. This is our culture when we use traditional medicines to help cure us.” [Urban male, 75]“When we use the traditional medicines and we recover we don’t want to come back to the clinic … Sometimes you come to this clinic and I receive the same medicine as the time I came with a different illness. I don’t want to come back. I prefer traditional medicines.” [Urban male, 66]
“At the moment we have a pharmacist but the person doesn’t come in to work. Usually we make an emergency request 2 months before we run out of the medication. But every time we do that, they always fail to send us the medication as we requested. So I would like to ask the Ministry of Health to pay attention to this because when there’s no medication, they probably don’t feel anything but it’s a problem for us who work at the community level because we don’t know how to explain it to the patients. Sometimes they come to us every 2–3 days, we try to expain it to them, about the situation. Some patients they understand about the situation but some won’t understand. They told us maybe [it’s] better [to] shut down the health centre, better shut down the hospital because it doesn’t have any medication.” [Urban D-CHC]
“Our recommendation is to go to the first government system when… we received medication in packets. It’s already divided [at the national centre] for each village, they have their own packet labelled with names… so we don’t have to wait until it gets to [the district facility]… If the Ministry of Health could figure out a way to implement that again, it will be better, the first government system.” [Rural D-CHC]
Poor professional standards
“During the process of delivery we were crying because of the pain but the midwife was very angry and said, ‘you guys don't yell when receiving big banana but now you want to give birth, you shout.’” [Urban female, 27]“A pregnant woman from our village had signs of labour. The patient went to the hospital and stayed for three days and three nights. The patient felt so much pain but the doctor and midwife asked her to continue to hold the pain. On the fourth day, the doctor said that patient would have surgery. Unfortunately during the operation the baby died in the womb but for three days in pain the baby moved, it was so active.” [Urban female, 42]“It has occurred in our referral hospital here. The health workers told patients not to yell during the process of giving birth and withstand the pain until the morning. In the morning when the doctor and midwife came to help with the birth, the baby’s heart rate no longer functioned and had died. After this, news is spreading and circulating around this district, the pregnant women in our village would not come to give birth in hospital but they choose and prefer to give birth in their hamlet/village assisted by a traditional midwife.” [Urban female, 26]“In the middle of the night the infusion got stuck and caused swelling. Our family immediately reported it and called the health workers, but instead we got yelled at saying ‘Are you guys dogs or humans?’. “[Urban female, 28]“Health workers yell at us like a slave … they give priority to the important people, rich and intellectual and neglecting the poor, no money, stupid and dirty…That is the reason why people do not want to go to the hospital although they have a letter of referral.” [Urban female, 26]
“Well, sometimes staff don’t quite have the ethics because the tone that we use when talking to the patients is sometimes rude. But from our perspective, we use [that] tone because we want to educate them. Because we see people’s characters, sometimes they say yes, yes, but in reality they don’t do as we told them. So then it looks like we don’t show good ethics when sometimes we yell at them but sometimes it’s because it’s difficult for the community to change their behaviours.” [Urban D-CHC]
“In [the regional hospital] I know that the attitudes of the midwives are not good. Many people in [that town] prefer to come to the sub-districts because it’s better in the sub-districts, they attend to people who give birth better. In [that town], there are one or two midwives who don’t attend to people very well, they are very rude. Usually they react badly to people who scream by uttering bad things, that is why many people don’t like [them].” [Rural D-CHC]
“This is my first time at the hospital and I don’t know exactly which place to go to but they didn’t care about me… I waited and waited with no one caring about me. I returned home …Why come back?… I don’t like to return to that hospital.” [Urban female]“Please do not send and leave us alone with a piece of paper, particularly for those who have no families in Dili and no money, because staff in Dili hospital will not take care of us. ” [Urban female, 36]
“When we go to the hospital there is a queue outside, but others go through the back to see the doctor if they are family of health workers. This system disappoints us, the patients who have no relatives inside the hospital. This system is preventing us going to hospital…So terrible, I hate this system.” [Urban female]“They were disgusted by us because our life is simple and dirty… When they examined the patient [their grandmother] they clamped her shirt with two fingers [participant demonstrated how to clamp with the thumb and index finger with the right hand, left hand covering mouth and nose] while tossing bad words like she was dirty…In that time there were patients who came by hartop [car] and motorbike. The health workers directly served them well and smooth.” [Urban female, 28]“We use [verbal] force and threaten and say, ‘If you don’t help us we are going to parliament.’ You see inside the room they are just sitting there laughing and talking and we have to be kept waiting. ” [Urban female]
“If you know someone well at the hospital you will be preferenced. If you don’t have family or connections then you will be abandoned… For people who don’t have knowledge about health services, and no family or connections, that’s even worse. People with higher education, who have knowledge about many things, they go to the hospital and already receive such treatment. How much worse is it for people with no education background? Especially if they don’t know how to read, write or speak; they will be left unattended.” [Urban D-CHC]