Répercussions psychosociales de la drépanocytose sur les parents d’enfants vivant à Kinshasa, République Démocratique du Congo: une étude qualitative

Luboya, Evariste; Tshilonda, Jean-Christophe Bukasa; Ekila, Mathilde Bothale; Aloni, Michel Ntetani

doi:10.11604/pamj.2014.19.5.2830

Cited by 18 publications

(23 citation statements)

References 24 publications

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“…The questionnaire was established on the basis of the literature review on the knowledge of SCD [3][4][5][6][10][11][12][13][14][15], then the questionnaire was validated to be used among the students. The study was conducted following STROBE (Strengthening the reporting of observational studies in epidemiology) guidelines for reporting quantitative data [16].…”

Section: Methodsmentioning

confidence: 99%

“…Although the world health organization (WHO) recommends education of the population as a way to reduce mortality from SCD [2], the disease remains little known or unknown by people in sub-Saharan African countries most affected. Indeed, several studies conducted in sub-Saharan Africa on the population's knowledge of SCD had generally reported insufficient or erroneous knowledge of this disease [3][4][5][6][7]. As a result, myths about SCD, frustration, stigmatization and inappropriate treatment persist [4,5,8].…”

Section: Introductionmentioning

confidence: 99%

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Students’ knowledge on sickle cell disease in Kisangani, Democratic Republic of the Congo

et al. 2020

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Background: Education is needed as an action to reduce morbidity and mortality from sickle cell disease (SCD), an important but largely neglected risk to child survival in most African countries as Democratic Republic of Congo (DRC). Objective: To assess the knowledge of Kisangani University students in DRC regarding SCD. Methods: In this non-experimental, cross-sectional study, a validated questionnaire was used to assess the knowledge of 2 112 Kisangani University students in DRC and data were analyzed using SPSS version 20. Results: Most participants, 92.9% (95% confidence interval [CI]: 91.7-93.9) were knowledgeable about SCD and have heard about it through schools and/or universities (46.3%), followed by family (34.5%) and health-care workers (23.5%). Nine hundred and seventy-three (46.1%; 95% CI: 44.0-48.2) and 37.9% (95% CI: 35.9-40.0) subjects indicated, respectively, that SCD is an acquired and hereditary disease. Moreover, 53.6% (95% CI: 51.5-55.7) said that the diagnosis of SCD is made by blood tests, while 46.2% (95% CI: 44.1-48.3) talked about urine tests. About 85.6% were unaware of the risk of children becoming sickle cell patients when both parents have SCD. To prevent SCD, premarital screening was cited by only 7.7% (95% CI: 6.6-8.9) of subjects and no measure was known by 25.4% (95% CI: 23.6-27.3). However, 79.6% (95% CI: 77.8-81.3) approved the need of premarital screening of SCD. Discussion: This study highlighted that the Kisangani university students' knowledge regarding SCD is poor and needs to be improved; education programs and motivational campaigns to be enhanced.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Students’ knowledge on sickle cell disease in Kisangani, Democratic Republic of the Congo

et al. 2020

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“…In Lubumbashi, Shongo et al [2] observed that nearly 70% of sickle cell patients were from poor families. As reported by Luboya et al [13], poverty, along with ignorance of the disease, and a sense of the powerlessness of modern medicine, may cause some affected families to resort to alternative medicines. In Kisangani, the management of sickle cell disease is not holistic.…”

Section: Perceptions and Appreciation Of The Supply Of Health Servicementioning

confidence: 98%

Barriers to healthcare for sickle cell disease patients in the Democratic Republic of Congo

Batina¹,

Kambale²,

Sabiti³

et al. 2017

ajhissues

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Introduction: The World Health Organization estimates that up to 70% of sickle cell deaths in sub-Saharan Africa are preventable by implementing measures that include early diagnosis, information, education and prophylaxis of infections. In the city of Kisangani, in the Tshopo province of the Democratic Republic of the Congo, identifying difficulties in access to care will help guide interventions to fight sickle cell anemia. The aim of this study was to identify the barriers preventing sickle cell patients from accessing care in the Democratic Republic of Congo. Methods: This cross-sectional study involved 158 sickle cell patients who consulted at least once in one of the general hospitals in Kisangani in 2010. The interview guide included questions about social representations and knowledge about the disease, perceptions and knowledge of the provision of health services and financial accessibility to health facilities. Results: For 44.9% of the study participants attribute sickle cell disease to demonic origin or divine curse. The cost of care associated with sickle cell anemia is unaffordable for 93.6% of participants. The 77.8% and 44.9% indicated that it is in the church and in traditional healer's places respectively that the care is more prompt than in formal health system. However, only 22.8% patients in health facilities felt that they waited a long time before commencing treatment. Conclusion:Sickle cell control in Kisangani should focus on raising awareness, information and education of population, sickle cell disease patients and their families. In addition, centers for the comprehensive management of sickle cell disease supported by the state should be developed. Similarly, research on medicinal plants used by traditional healers is necessary.

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“…The latter experience emotional breakdowns resulting in feelings of rejection, marginalization and exclusion on the part of parents and the extended family [32,33]. They express jealousy towards the patient that they designate as the main person responsible for crises that destabilize the family financially and emotionally [34]. They feel guilty for having negative thoughts such as jealousy towards the patient; they consider themselves "bad siblings" [35].…”

Section: The Experiences Of the Brothers And Sisters Of Sick Childrenmentioning

confidence: 99%

Sickle Cell Anemia, Representations and Care: Experience of a Brother of a Sick Child in Cameroon

Nsangou¹,

Scelles²

2021

Human Blood Group Systems and Haemoglobinopathies

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In Africa, families often with more than one child consult with both modern and traditional African medicine to treat their child with sickle cell anemia. This research aimed to understand how a child experiences both the medical and traditional care of his sister. We collected data from an interview and family drawing of a young boy growing up with an affected sister in Cameroon. Results showed this child persisted to feel as though his sister had fallen victim to a sorcerer and that he was at risk of the same fate even after the two of them received traditional treatment. He also felt neglected about his suffering because of his sister's disease by hospital professionals that were caring for her. It is therefore necessary to establish a support system for affected children and their family by providing a safe space in hospitals where they can express and contain their experiences with the disease.

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Répercussions psychosociales de la drépanocytose sur les parents d’enfants vivant à Kinshasa, République Démocratique du Congo: une étude qualitative

Cited by 18 publications

References 24 publications

Students’ knowledge on sickle cell disease in Kisangani, Democratic Republic of the Congo

Students’ knowledge on sickle cell disease in Kisangani, Democratic Republic of the Congo

Barriers to healthcare for sickle cell disease patients in the Democratic Republic of Congo

Sickle Cell Anemia, Representations and Care: Experience of a Brother of a Sick Child in Cameroon

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