Table 4

SickleGenAfrica year 1 focus groups: duty of care themes and sample participant vignettes

Medical care and health insurance“The other thing is health insurance as Arafa had been working on, you need to be in a group and they don’t want sickle cell patients as they won’t get profit. This one has been hurting us because I cannot pay 1.5 million shillings for my NHIF insurance, I don’t have that money.” (FG6 Dar es Salaam)
“…the mother has to pay and an average stay in Korle-Bu without insurance a day is about 350 Cedis, where is the mother going to get the money from. So facilities, subventions on their drugs and then education is very, very important.” (FG1 Accra)
Improving quality of care“Okay, what I also want the government to do is that like we have in other countries and even some in Africa, they have comprehensive sickle cell care….” (FG2 Kumasi)
“There should be a guideline on what should be done depending on level of health facility. So it’s best for each level to know what it can do and what they can’t so as to know when to refer.” (FG6 Dar es Salaam)
Inadequate resources and infrastructure“Government should try and provide some specific drugs for us… because most of our drugs are very expensive… and to even get it is really difficult…” (FG5 Lagos)
“Government is to come to our aid and they should provide us with the facilities and infrastructure because Korle-Bu sickle cell unit don’t run 24 hours.” (FG1 Accra)
“All sickle cell patients in Murtala do have an ID card so with their ID card whenever they are in crisis and they happen to be in the A&E they don’t wait, they don’t follow any queue and then they have the desired attention for them to get cured of that crisis.” (FG4 Kano)
Inadequate qualified staff“We have clinics and then we have just general practitioners running the clinics, but what we have done in the State now is we employ haematologists, we have about 12, 13 centres in the state where you can access these haematologists….” (FG5 Lagos)
“The issue of health provider is still a big challenge as they are not enough so you might find may be one person is running the clinic and there are a lot of patients.” (FG6 Dar es Salaam)
“The evidence is that because of lack of healthcare, by five years most of this children have died and if you go to our hospitals in the rural area you will find communities where there is no health facilities.” (FG4 Kano)
Enhancing human resources“Sickle cell disease experts should be increased as you might find some doctors attending not know much about the disease, which might compromise care given.” (FG6 Dar es Salaam)
“I want government to train doctors and nurses and those working in the hospital so that they can set up sickle cell clinics or hospitals so the sickle cell patients wouldn’t have to travel long distances to access healthcare.” (FG2 Kumasi)
Poor healthcare provider behaviour“…once you get to the hospital as my fellows have said, you give explanation to the doctors that one two and three and he replied no, I am the doctor and you are a patient. Don’t teach me how to do my work.” (FG6 Dar es Salaam)
“…my child for instance they gave her 6 months’ time to visit but within a month she had crisis, and if you bring the child, they will not even pick your file for you, they will just ask you to take your child away, where should we take them to?” (FG2 Kumasi)
Socioeconomic concerns of parents and caregivers“Apart from the four children, I live with my mother after my father died all of them are my responsibility. So if today you say there is something needed it means other children should wait.” (FG6 Dar es Salaam)
“There was a time they were turning down patients that are SS and don’t have money, they will tell them there is no bed.” (FG5 Lagos)
“…sometimes is very difficult to make the payment or buying of the drugs and this thing has compounded their sickness.” (FG1 Accra)
Perceived stigma and misconceptions“…Just put some funds into it, let there be jingles, let there be information, let people just know so that this stigmatisation can stop.” (FG5 Lagos)
“…on the issue of stigmatization, it is something which is going on especially with some of the health workers, sometimes you go and they will see SS as if your child will die in the next moment, so sometimes I was telling a doctor that stigmatisation starts from the hospital.” (FG2 Kumasi)
“There are still many people who don’t know about the disease with others feeling like they will be dying once diagnosed.” (FG6 Dar es Salaam)
Social neglect and isolation“I am desperate for a cure. I can’t tell you so many thing my mum tried, my own dad, my story is a bit different because my own dad neglected me so my mum was trying everything, both traditional, both orthodox.” (FG3 Abuja)
“…some parents if they have sickle cell disease patients and children and they don’t want to buy drugs for them because they believe they will not survive….” (FG4 Kano)
“You find out that some men they run away. They leave their children to the mothers to take care of, once the crisis sets in and they feel that I can’t stand it any longer and so they leave the mother to take care of these babies. It is so demoralizing when you hear this and see it being practiced.” (FG5 Lagos)
Laws and policies“I have some patients who say they do not want disclosure to be made to their employers regarding their sickle cell status because they would be fired or lose their jobs it is very important, I think there is a law that we should not discriminate….so I think it is very very important that is enforced.” (FG1 Accra)
“Kano State Government should adopt something like what is called Medicare in the United States. It should specifically make anybody with sickle cell disease….under the Medicare should have complete coverage.” (FG4 Kano)
Private and public sector partnerships“We have organizations, churches, NGOs can decide to sponsor people and say okay I can afford to pay for 20 people for a whole year, I can afford to pay for ten families or an organization can come and say okay…lets pay for 50 000 people for the whole year.” (FG5 Lagos)
“…also looking at corporate bodies partnership, strategic partnership with cooperate bodies you know there are certain organizations that are already supporting other health issues…but we don’t have any strong cooperate partnership with say MTN or Vodafone, so that we can be able to harness resource it could be technical, it could be financial…” (FG1 Accra)
Public awareness“I want the government to take up the costs of creating awareness so that the government ensures that every district directorate or health directorate should try and educate the general public on the sickle cell disease.” (FG2 Kumasi)
“…she is calling on government to increase awareness in the rural communities.” (FG4 Kano)
“….so as to create awareness to the patients especially in the villages where some lives are lost without knowing and nobody asks.” (FG6 Dar es Salaam)
  • SickleGenAfrica, Sickle Cell Disease Genomics of Africa Network.