Background
Study context
Materials and methods
Participant recruitment
Focus groups
Results
Group | Number of participants | Number of women | Age range | Average age in years (Mean + SD) |
---|---|---|---|---|
Religious | ||||
Christian | 61 | 2 | 35–76 | 56.3 ± 10.3 |
Islamic | 78 | 22 | 18–78 | 48.9 ± 12.5 |
Ethnic | 27 | 8 | 29–80 | 50.9 ± 13.0 |
Community | 16 | 1 | 32–78 | 59.7 ± 15.3 |
aTBA | 32 | 22 | 21–68 | 45.6 ± 10.2 |
Total | 214 | 59 |
Theme 1: Knowledge
Genomic awareness of community gatekeepers
“Gene is the substance contained in the DNA of a person and is transferred from parents to offspring, so it is hereditary, and genetics is the study of gene and genetic variations”- P9CRLGRP5.
“When we talk about genes, we are talking about hereditary that can be traced to either the paternal side or the maternal side”- P5YCLGRP1.
“What I understand by gene is like a trait inherited from parents by the children before and after birth”- P1HL.
“Gene is what you inherit from your parent or your grandfather or grandmother” - P7MWGRP2.
“I have heard but can’t explain it well”- P6YTR.
“…. it is likely, for example, diabetes and some other terminal sicknesses; if you trace it, you will see that it is something that operates in the family. The father may have had it; then there’s a likelihood that the child will have it”- P4CRLGRP4.
“…that of cancer and sickle cell, children can inherit from their parents because it runs in the blood. So, the babies form with the blood of such things, so it’s easy to inherit from parents”- P4ICL.
“Like Albino, if the parent gives birth, it is possible that 1 out of 2 offspring will be an albino”- P9MLEpe1.
Personal experiences of genetic disorders
“The disease in my family, rheumatism, when you get to forty (40), fifty (50) or sixty (60) and you are a woman, you will hear oti fi jo iya lagbaja (she has taken after someone - the mother of so), so I know that in my family, it can be transferred”- P3YTL.
“My grandfather is an Albino, and I also have a brother that gave birth to an Albino...When we made our findings, we discovered that his grandfather had given birth to an Albino before”-P4YTL.
“Like the Lord says that he is not going to test us more than our faith, so even though the thing is inherited, if we pray to God, due to what he has said and we believe in him, nothing will happen to us”- P5CRLGRP6.
“That is what we are saying as far as ministerial experience is concerned to go back to the medical line, because, without experience in the ministry, we may associate such experiences to spiritual attack or living against the will of God”- P4CRLGRP6.
“There are some families who believe that they have forbidden things, so anybody that trespasses or engages in those forbidden things, such diseases Oro-facial cleft can happen to such person”- P6CRLGRP6.
Theme 2: Belief
Community gatekeeper’s attitudes toward genetic screening/testing
“The genetic test holds value because even in faith, if you know what happens, you can pray it out of your life, but something needs to tell you, and this test will reveal it has value” -P4CRL.
“When you get tested, the screening tells you something, and then you are prepared to avert medically”-P6CRLGRP3.
“Do you know why you should go for a test? So that we can know the way to manage it even if it is incurable.”-P4CRLGRP3.
“It’s necessary to check even before you get married, to check your genes, because these types of things have broken many homes.”- P2ICL.
“So that the person will know the medication to take care of it”- P1MLGRP3.
“I think it is very, very important, especially in this modern era where we are in where there is advancement in medical and technological sciences” - P6CRLGRP4.
“In my church, we can ask you, people, to come, and you can carry out the test because it will help to reduce premature death when you know the type of genes that you have” - P5CRLGRP3.
Community gatekeepers’ attitude towards genomic risk information
“I will look for ways of asking for prevention because for every problem there is always a solution, so what I will be doing is to see how it can be managed if possible or take precautions so that my siblings and children wouldn’t go through the same experiences”-P6CRLGRP4.
“I will find the solution to it in any way, whether medical or spiritual”-P2YTL.
“Well, medically, I will ask for advice and some drugs that I will be using for the disease”-P3CRLGRP6.
“I don’t think you can feel bad about something you cannot control; if God has created you and any medical occurrence is explained to you, you should accept your faith”-P1CRLGRP1.
“I think with such a condition, you should tackle it with spiritual power; I mean, through prayer, God can heal that sickness because he promised that whatever we ask from him, he is able to answer us, and there is nothing difficult for God to do so. Therefore, such sickness needs prayer; I don’t think that it is by mistake that the child has it; it may be an attack from the devil or powers of the darkness. To overcome such, you need to tackle it with prayer, and God is able to heal any sickness”-P2CRLGRP1.
“If anybody comes to me about what you’ve just said, I will tell them to reject it that it is not their portion…. because it is not from God”-P1CRLGRP6.
“If a person comes findings that secondary findings were discovered, the best way is to encourage the person to strengthen his faith and let the person knows that it is not a death sentence. It is just a discovery which means that every ailment has treatment or solution so encourage the person if there is any medical thing they can still do”- P3CRLGRP1.
“It is better not to know because, especially as a man of God, you shouldn’t be looking for what is not necessary. In the Book of 2 Samuel 24, King David was counting the children of Israel for what God did not instruct him to be counting. He just counted, finding what is not in your body; it is not necessary”- P4CRLGRP2.
Opinions on relaying secondary genomic findings
“Present it normally according to the ethics of your profession”-P1CRLGRP5.
“….so, the doctor who is involved should seek experienced doctors or possibly pastors of the involved patient to package an excellent information which will suit the person’s mind in handling the situation so that it would not lead to hazard situation”-P4CRLGRP5.
“It is good to reveal the result, but the doctor that will reveal it must be someone sensitive enough….so, anyone that wants to counsel must be patient and give a soft word”-P4TBAGRP3.
“It is good to reveal such information to the patient so that he can know what is wrong with him. Just as P3 has said, some don’t want anyone to know the nature of the disease in public, but when they know it secretly, they can take care of it”-P4 TBAGRP3.
Theme 3: Willingness to act
Gatekeeper’s role and opinion in supporting community members
“It is a job made easy; I seriously support carrying out genetic testing in anything. You want to do it because medicine has made life easy for pastors”-P1CRL.
“Without any explanation, if there is need for me to counsel or refer, I will do it because it will help you or it will help the individual to better themselves “-P5CRLGRP1.
“I will be curious to know and will do the test and find out the result and the normal thing to be done”-P5CRLGRP2.
“I will not object to doctors’ recommendation for genetic screening. Because he is the expert, he is the one seeing me; he knows it better than myself” -P6CRLGRP2.
“What I will give him advice, and if he doesn’t have the money, I will support him and take him to the hospital”-P9HL.
Community gatekeepers’ experiences with orofacial clefts
“I had a patient who gave birth to a baby that had cleft lip and palate, and when she had the second child, it was the same thing. I had to do my findings before discovering that the mother has it and she also inherited it from her father”-P6TBA.
“I have seen it before; I have seen that of a child and also a grown-up person”. -P10 MLGRP2
“In addendum to what he has said earlier on there are some families who have this belief that they have forbidden things so anybody that trespasses or engages in those forbidden things such Oro-facial cleft can happen to such person”- P6CRLGRP6.
“Sometimes early pregnancy, when you are not aware that you are pregnant, you start taking some drugs, which is not good for the baby. It can deform the baby.”-P9 ICL
“Medically it is believed that since the gene is a trait from the source, from the parent to the offspring, then it is believed that it can transmit medically from the source that is the parent to the offspring upon the generation if not cured o rprevented”-P5 ML GRP1.
“I have seen Oro-facial cleft and I don’t feel that it is transferable I just felt it is just like a mutation that could have happened more like Down Syndrome thing and it can it be as a result of some other things so for me I can’t say that it is A genetic thing rather it could be a mutation that could have happened due to somefactors”-P4CRL GRP 4.
“I will be neutral into it, and I will rather say I believe or not. Because I have never experienced that”-P5CRL GRP 4.
“When I was told and I saw the baby, I was also confused on what to do… I prayed, fortunately we have a medical doctor in the church, he also worked in LUTH here”- P2CRLGRP2.
“…another one happened in my own clinic; all my other staff ran away but I stood by the mother”- P2TBAGRP2.
“I have encounter with someone that has OFC, he was shy and because of stigmatization so I happened to have an encounter with medical doctor, and they said that there is free surgery for such cases. So, I let him understand that this is what is happening, he said he never knew. lo and behold he went for that surgery, and it was well placed now, when you look at him you will never know that he has such a thing”-P6CRL GRP6
“The support we will give them is that They should visit the hospital and if there are not financially buoyant the congregation can contribute money forthem”-P2MLGRP2.