Participants who reported having no formal education and those categorized as having low literacy felt that the possibility of gaining a good understanding of the research was not influenced by having low literacy level. This perception was consistent during the IDIs, FGDs and POs. The following quotations illustrate this.
A response from a mother (IDI 3) who doesn’t know how to read or write was, “Research in Sickle Cell Disease are [is] done to understand the cure and find solutions on this problem” IDI 3, interview with a mother of a child with SCD enrolled in the genomic study
Another example was also from a mother (IDI 1) who has not received formal education, she explained, “Research is an investigation to understand about a certain disease problem in-depth or look for a cure of a certain disease”” IDI 1, interview with a mother of a child with SCD enrolled in the genomic study
In one of the FGDs, participants were asked whether the information provided by researchers was easy or difficult to understand. One FGD member began,
“Yes, it is easy to understand, [A probe was followed after his response, Is it easy for you because you are a college graduate? ] Another participant in the group with no formal education replied, “It is all about the individual person and has nothing to do with the level of education” focus group discussion 2 with adult SCD patients enrolled in the genomic study
A participant in another FGDs claimed, “I am not concerned by the type of information provided, it is not a problem for me to understand, we need to be educated more on the research and understanding will not be a problem” focus group discussion 3 with adult SCD patients enrolled in the genomic study
A few participants believed that education plays a major role to be able to understand the information.
One noted, “It is true that for someone to understand this (research) information, it will depend on the individual person, but also the level of education they possess” IDI participant 5, 43 year-old men with SCD who was newly enrolling in the genomic study
Factors contributing to poor comprehension of the research
1. Adequacy of the information provided to the participants
The majority of participants for both the IDIs and FGDs felt that research information was not adequately provided. Participants describe the quality of the interactions,
“You need more time to understand the information and if you are not keen enough you will not be able to understand, time given was so short and answers were given in a rush [ed] way” IDI participant 9, mother of a child with SCD enrolled in the genomic study
A FGDs respondent clarified, “The truth is we are not getting enough information from the doctors [researchers] and education is not being provided to our satisfaction [on the research], only the progress of your disease, but nothing more...that is at least my personal view” Focus group discussion 1 with adult SCD patients enrolled in the genomic study
One explanation the participants gave for why they had received inadequate information was an increase in patient load in the clinics, “I do not think we are now getting information as it used to be, as time goes by the number of clinic visits decreased and the time to stay with a doctor also has decreased” Focus group discussion 2 with adult SCD patients enrolled in the genomic study
In contrast to the other study participants, however, one woman noted, “I have been provided with detailed information about the research, they have even come to my house to do research and the experience at home was quite good” IDI 7, interview with a mother of a child with SCD enrolled in the genomic study.
2. Age at enrollment
Age at enrolment was considered to be a factor by some of the participants for not recalling the information provided during the consenting process. Since participants were recruited from a cohort study, this was only relevant for those who were enrolled in the study by their parents or caretakers when they were young. As commented by one participant in the FGD,
“Time has passed since the last time we were enrolled, I cannot recall if it was difficult or easy to understand, maybe there is a need to be given the information again” focus group discussions 5 with adult SCD patients enrolled in the genomic study
Another participant, who was about 16 when enrolled [he was 19 at the time of the interview], recalled: “I remember my father signing this form [indicating the consent forms], but I was there to witness. I was about 16 years old. I remember my father looking satisfied with the information provided by the doctor. I do not recall being given the forms to go back home and read them” IDI participant 11, 19 year-old boy with SCD enrolled in the SCD genomic study
3. Time the researcher spent with the study participants
Participants felt that time spent with the researcher was not enough for detailed conversation. They were concerned that the time limitations do not allow them to ask questions.
“Maybe it's contributed [time spent] to the increase in number of people attending clinics these days, there is no time to listen to the patients one by one, and sometimes the environment is not that comfortable to start asking questions [Another participant in the same FGD clarified], It is like this [commanding people to listen to what she was about to say], before you even come out, another patient is already at the door waiting for you to come out or sometimes standing inside the room waiting, you cannot ask anything” focus group discussions 4 with adult SCD patients enrolled in the grnomic study
Possible way to improve understanding during the consenting process
1. Opportunity to ask questions enhances participants’ comprehension
Participants who had opportunities to ask questions, recall how it helped them to understand the details of the research.
We were given opportunities to ask questions, doctors I recall responded very well and we were satisfied, I am now confident that I have a fairly good understanding of the disease” IDI 6, interview with a mother of a child with SCD enrolled in the genomic study
“For those who are upfront they can ask questions to the doctors but the doctors they just do not start to provide explanation, for example, the tests we are doing at the clinic, [it is not] until you ask what are they for and what do these results mean [that you are given an explanation]” focus group discussions 3 with adult SCD patients enrolled in the genomic study
2. Group information sessions followed by individual consenting.
Participants preferred group informational sessions followed up by individual meetings for signing the consent forms. For example, a woman in one FGD noted she preferred a group session,
“[That would be] like this [indicating the group discussions], in the presence of doctors…because it can be very difficult to ask questions through the one to one method with a doctor…some people feel ashamed to ask questions but in the group discussions you do not feel that” focus group discussions 4 with adult SCD patients enrolled in the genomic study
Another participant recalled, “We were provided the information in groups of five people and I think it helped to remember, although we both signed individually” focus group discussions 1 with adult SCD patients enrolled in the genomic study
In addition to preferring a two-stage general informational session and an individual consent signing process, participants preferred face-to-face encounters to getting information from a video, this comment was raised when participants were asked about having videos in the clinics to explain the study,
“I am sceptical with the video method of providing information, I am not sure of it, it depends on the research type, you just cannot show everything” focus group discussions 1 with adult SCD patients enrolled in the genomic study