Caregivers’ Perspective on the Psychological Burden of Living with Children Affected by Sickle Cell Disease in Kinshasa, the Democratic Republic of Congo
Abstract
:1. Introduction
2. Subjects and Methods
2.1. Study Design and Setting
2.2. Sampling
2.3. Data Collection
2.4. Data Analysis
2.5. Ethics Approval and Consent to Participate
3. Results
3.1. Sociodemographic Characteristics
3.2. Themes
3.2.1. Knowledge and Perception on SCD
Knowledge
“SCD means that the person suffers from SS anemia…”Participant (P)1
“SCD child is the child who carries hemoglobin S in their blood…”P2
“SCD is a genetic disease…”P3
“Sickle cell disease means that the child has a problem in the blood, something is wrong in his/her blood, his/her blood does not circulate well, he/she has bone pain, so he/she has a problem in the blood. When someone is ignorant, the child is often transfused without parent realizing that the child may have SCD. My little daughter has been transfused four times, and we only knew later that it was SCD when we came here to Kinshasa. I thank God for that.”P4
Perceptions
“I consider SCD as any other illness: For my little daughter, I give thanks to God and I leave everything in the hands of God.”P4
“It is like any other disease; I take the example of tuberculosis if you follow the treatment well you will be healed. It is the same for this disease, if you follow the treatment well you will have peace.”P5
“At first, I was very sore seeing the evolution of my child compared to other children, but now since my child is well followed-up, with a good treatment he will be healed, and he will be better.”P6
“I will say that it is a disease like diabetes, HIV carriers, as they take their drugs, they live, just take the drugs well with a good follow-up, deepen some tests.”P7
“At the family level we were talking about witchcraft, especially my parents-in-law, they said bad things, but now I’m used to it because I am already divorced, and the child is fine.”P8
3.2.2. Diagnosis and Management of SCD
Diagnosis of SCD
“We didn’t know what SCD is, we had the confusion between blood type (hemoglobin) and electrophoresis.”P9
“My older sister knew her status, but my brother-in-law, her husband, was ignorant. Before their wedding, our dad asked our brother-in-law to do the test and he brought the result of his blood type instead of electrophoresis.”P3
“We had confusion between blood type and electrophoresis, we did the first and not the second.”P10
“It’s really difficult, before the wedding we did this test but we didn’t know this kind of test is done in specialized hospitals, we went to a polyclinic or we were told that we were fine when our child was 7 years, he began to have health problems regularly, he was transfused three or four times, after that he was hospitalized and diagnosed SCD. We almost filed a complaint against the polyclinic in question, but it was no longer worth doing it because we were told that this type of test is done in a specialized hospital.”P11
“We did the test at a non-specialized, inappropriate center, and the result was wrong, we got married believing that there was nothing, but in reality, there was a problem that we discovered along the way.”P12
“I suspected something was wrong about my child, but after an examination in a local polyclinic the result of the test was not correct, but the health problem persisted and when we came here to Kalembelembe hospital, we took the test again and the test was positive.”P13
- Circumstances of discovery of the disease
“The first time, it was very difficult, we almost even separated, when our daughter was 2 years old, she was sick, we had given her antibiotics then her hands began to swell, the doctor asked us to do the electrophoresis test, and the result was positive, we were shocked we went to different local laboratories, the second test was positive too. The doctor who received us advised us to get separated, he told us if we continue together, we will have a second child with the same disease, he directed us to a hospital in the nearby because he does also work there. It felt like a pressure, we asked ourselves what can we do? After reflexing, we decided to continue together and didn’t get divorced. Finally, out of our five children, she is the only one with SCD. So from a scientific point of view, it is a disease that needs follow-up, but from a spiritual point of view, God heals every illness and that is our consolation.”P5
“When my child was 7 years old, he started to have health problems regularly, he was transfused three or four times, and after he was hospitalized, we got to know that my child has SCD.”P14
“At 9 months, my grandchild started to become ill, she was hospitalized, often transfused and one year after she was transfused again, we travelled to Kinshasa in 2019 and she was diagnosed with SCD. Now, I have faith my little girl will grow up and have children, I thank God.”P4
“We did not know that our child was having SCD. She is now 14 years, she is the eldest twin, she had a young sister who started having symptoms at six years old, and she had symptoms such as anemia, hands-foot syndrome, and pain in her bones.”P15
“We were ignorant about the condition and ended up losing the twin sister. Her twin sister died, but she has a growth problem, and she is fragile.”P16
- Effect of the disclosure on parents
“According to society, children with SCD do not have a long life but for us parents, we will have to take care of them, we have the assurance that they will live longer and will be healthy.”P17
“The first few days when we received the news, it was painful, but with advice from health workers, we accepted the situation and we found it bearable and “normal”. Unfortunately, because of SCD, my husband decided to leave me, and I am now alone with my child.”P18
- Parents/caregivers’ opinion about disclosing the status of the child
“To this day I have not yet informed my daughter, because I think she is still very young to be informed. Soon she will be 14 years old.”P1
Laughter in the room……
“For me, as they are twins, and that her sister does not have this disease if I inform her, she will be the first to be embarrassed in front of her sister that is why I do not prefer to inform her, I cannot inform her.”P15
“My child is aged 7 and she is informed.”P19
“I told him, he knows, he takes the medicines, and he does not forget.”P20
“Mine also knows, my little girl is 7 years old and has known for a long time, besides it is she who reminds me of the appointment with the doctor, the time to take the medicine.”P21
“My niece is 8 months, she is not yet old to understand, even her brothers and sisters do not know, we discovered it only in August this year. We keep it a secret between me, her mother, and her father, the other children are still small, and if we tell them, they will spread the news to the neighborhood, they do not know yet how to keep the secret.”P3
“If he starts to understand things I have to inform him because when he will grow up he will take himself medicines, he’s going to start asking questions, there are awake children! I have to feed him with hope, he cannot be uncomfortable with his brothers and sisters, and he must always be supported.”P22
“My child is also 2 years old; I believe when he will begin school I will inform him, from 6 years.”P23
Management of SCD
“My wish would be that the management of SCD becomes free of charge everywhere. When we bring children with SCD to the hospital, they are given priority.”P23
“Also make the announcement to the benefactors for taking care of more patients because we all do not have the same financial means. ”P2
“Our children need vaccine and follow-up, but both are very expensive, we do not have enough money.”P24
“We hope that one day, the exams, the follow-ups and vaccines, all management for SCD will be free of charge.”P25
- Parents’/caregivers’ views on the management of SCD
“It is necessary to remove fear. the example of our couple, we knew before the wedding, there was even conflict in my family-in-laws, my mother-in-law is a nurse, my father knew that I was heterozygote AS, we even separated but love drew us and then, we got married, we had four children, but only one has SCD.”P5
“For you who are divorced, and those who do not want to get in a new relation, I’ll advise you not to be afraid to meet another man who is homozygous AA. You can have a new life with a heterozygote man. We will advise you to ask your partner to get tested before and here (at Kalembelembe hospital) or at a specialized center. It is important. But if we meet a man who is a heterozygote, we will advise you not to get married to him and not follow the feeling if you are afraid of going into a similar situation, which can lead to divorce and having a child who is suffering with SCD.”P7
3.2.3. Society’s Perception of Children Affected by SCD
Impact of SCD on Family of Children with SCD
“Knowing that I had a child with SCD child and another who died of this disease, when I knew that I was five months pregnant, I was so afraid and got high blood pressure, I ended up miscarrying my twins.”P16
“I entered into fear when my child with SCD had a stroke, I also met different men who wanted to marry me, but when they see that I have a child with SCD, they leave. That’s why for the moment I prefer to stay alone with my child.”P18
“In my case I was the one who took the child to the test, when I came back knowing her status, I was able to handle the situation and I controlled her. If she gets pregnant again, I will not panic and will stay calm because we already have children with SCD, and I will know how to manage the situation. I will assume myself; we must follow the advice of the doctor.”P26
Impact of SCD on Schooling
“I work at the school where my daughter is studying, and I don’t like the words teachers use to belittle sickle cell children.”P1
“At school, when I compared his growth with his classmates, there is a big difference. His classmates are more developed than him. Sometimes he worries a lot about his growth retardation even though his friends care about him and show empathy and sympathy.”P25
“The child knows his condition because he is taking the medication, but sometimes he feels frustrated because he does not do gymnastics at school. He is prevented from playing football and has a lot of restrictions. He always asks the same question: Mom why always me? My child feels alienated from the society.”P8
“They are considered unfit, they will not reach the age of 30, but in the community, we see in reality many who are more than 40 years.”P24
“Some students tease him, others are kind. He lives together with them, and they play together.”P9
3.2.4. Psychosociocultural Burden of SCD and Quality of Life of Family Affected by SCD
“Regarding growth, they are sometimes called sorcerer children, bewitched because they are shorter than same age children. My child had a problem with the spine, but after treatment, he is well.”P10
“According to society, the SCD children are losers, do not have a long life but for us parents we will have to take care of our children because we have the assurance that the child will live and will be healthy.”P14
“It is difficult to explain but it is considered as if they have a short life, there is no hope for them, and they will do nothing in life.”P11
4. Discussion
4.1. Knowledge and Perceptions of SCD
4.2. Diagnosis and Management of SCD
4.3. Society’s Perception of Children Affected by SCD
4.4. Psychosociocultural Burden of SCD and the Quality of Life of the Family Affected by SCD
4.5. Strengths and Limitations of the Study
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
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Variables | N = 26 |
---|---|
Age Groups: | |
24–28 | 1 (3.85%) |
29–33 | 8 (30.77%) |
34–38 | 3 (50%) |
39–43 | 3 (11.54%) |
44–56 | 2 (7.69%) |
Gender: | |
Male | 2 (7.69%) |
Female | 24 (92.31%) |
Residence: | |
Urban area | 21(80.77%) |
Rural area | 5(19.23%) |
Participant level of education: | |
Primary | 3(11.54%) |
Secondary | 15(57.69%) |
University | 7(26.92%) |
None | 1(3.85%) |
Occupation: | |
Employed | 4(15.38%) |
Student | 1(3.85%) |
Housework | 11(42.31%) |
Health worker | 1(3.85%) |
Self-employment | 10(38.46%) |
Yes | |
---|---|
Category | N = 26 |
General public: | |
Negative Attitudes and perception | 26 |
Negative Approach by People | 24 |
Stigmatization | 20 |
Lack of awareness | 19 |
Superstitions and witchcraft | 23 |
SCD child does not have a long life | 23 |
Traditional practices | 24 |
Influenced by cultural values | 19 |
Influenced by religious values | 26 |
School: | |
Teachers need knowledge | 21 |
Stigmatization/Discrimination | 19 |
Teasing/Mockery | 18 |
Yes | |
---|---|
Diagnosis of SCD | N = 26 |
1. Parents’ knowledge of the diagnosis of their children: | |
Number of misdiagnosed children | 23 |
Good understanding of the diagnose | 2 |
Bad understanding of the diagnosis | 24 |
2. Number of parents with knowledge of the diagnosis before the wedding: | |
Knowledge | 2 |
No knowledge | 24 |
3. Circumstances of discovery of the disease: | |
Accidentally discovered | 21 |
At birth after the child was screened | 5 |
4. Parents/caregivers’ response regarding disclosure to their children: | |
Refuse to disclose | 7 |
Agree to disclose | 14 |
To be unsure about it | 5 |
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Lelo, P.V.M.; Kitetele, F.N.; Akele, C.E.; Sam, D.L.; Boivin, M.J.; Kashala-Abotnes, E. Caregivers’ Perspective on the Psychological Burden of Living with Children Affected by Sickle Cell Disease in Kinshasa, the Democratic Republic of Congo. Children 2023, 10, 261. https://doi.org/10.3390/children10020261
Lelo PVM, Kitetele FN, Akele CE, Sam DL, Boivin MJ, Kashala-Abotnes E. Caregivers’ Perspective on the Psychological Burden of Living with Children Affected by Sickle Cell Disease in Kinshasa, the Democratic Republic of Congo. Children. 2023; 10(2):261. https://doi.org/10.3390/children10020261
Chicago/Turabian StyleLelo, Patricia V. M., Faustin Nd. Kitetele, Cathy E. Akele, David Lackland Sam, Michael J. Boivin, and Esperance Kashala-Abotnes. 2023. "Caregivers’ Perspective on the Psychological Burden of Living with Children Affected by Sickle Cell Disease in Kinshasa, the Democratic Republic of Congo" Children 10, no. 2: 261. https://doi.org/10.3390/children10020261