Abstract
Sickle Cell Disease (SCD) is a debilitating illness that affects quality of life. Studies of the psychosocial burden of SCD on patients have been rarely reported in Africa. We used a quantitative method, with face-to-face administered questionnaires, to study indices of psychosocial stressors on adult SCD patients in Cameroon. The questionnaire included a 36-item stress factors scale evaluating general perceptions of stress and five main stressors’ domain: disease factors, hospital factors, financial factors, family factors and quality of personal-life factors. Items pertaining to psychosocial stressors involved four response options with increasing severity: 0, 1, 2 or 3. Non-parametric tests were used for analysis. The majority of the 83 participants were urban dwellers, female, 20–30 years old, single, unemployed, with at least a secondary or tertiary education. Median age at diagnosis was 100 months; 47.8 % had >3 painful vaso-oclusive crises annually. Only 4.8 % had been treated with hydroxyurea. The majority reported moderate to severe difficulty coping with SCD. The “degree of clinical severity” category displayed the highest median score (2.0), while familial stressors showed the lowest (0.8). Being female, married, with low education level, an additional affected sibling and low direct income were significantly associated with specific stressors’ categories. In Cameroon, there is an urgent need to implement policies that ensure affordable access to health-care and practices to reduce SCD morbidity and improve patients’ quality of life.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Anie, K. A., Grocott, H., White, L., Dzingina, M., Rogers, G., & Cho, G. (2012). Patient self-assessment of hospital pain, mood and health-related quality of life in adults with sickle cell disease. British Medical Journal Open, 2, e001274.
DeBaun, M. R., & Telfair, J. (2012). Transition and sickle cell disease. Pediatrics, 130, 926–935.
Locatelli, F., Kabbara, N., Ruggeri, A., Ghavamzadeh, A., Roberts, I., Li, C. K., et al. (2013). Outcome of patients with hemoglobinopathies given either cord blood or bone marrow transplantation from an HLA-identical sibling. Blood, 122, 1072–1078.
Makani, J., Cox, S. E., Soka, D., Komba, A. N., Oruo, J., Mwamtemi, H., et al. (2011). Mortality in sickle cell anemia in Africa: a prospective cohort study in Tanzania. PLoS One, 16, e14699.
Mann-Jiles, V., & Morris, D. L. (2009). Quality of life of adult patients with sickle cell disease. Journal American Academy Nurse Practitioners, 21, 340–349.
Marsh, V. M., Kamuya, D. M., & Molyneux, S. S. (2011). ‘All her children are born that way’: gendered experiences of stigma in families affected by sickle cell disorder in rural Kenya. Ethnicity & Health, 16, 343–359.
Moskowitz, J. T., Butensky, E., Harmatz, P., Vichinsky, E., Heyman, M. B., Acree, M., et al. (2007). Caregiving time in sickle cell disease: psychological effects in maternal caregivers. Pediatric Blood & Cancer, 48, 64–71.
Njamnshi, A. K., Wonkam, A., Djientcheu, V. P., Ongolo-Zogo, P., Obama, M. T., Muna, W. F., et al. (2006). Stroke may appear to be rare in Saudi-Arabian and Nigerian children with sickle cell disease, but not in Cameroonian sickle cell patients. British Journal of Haematology, 133, 210.
Ohaeri, J. U., & Shokunbi, W. A. (2002). Psychosocial burden of sickle cell disease on caregivers in a Nigerian setting. Journal of the National Medical Association, 94, 1058–1070.
Ohaeri, J. U., Shokunbi, W. A., Akinlade, K. S., & Dare, L. O. (1995). The psychosocial problems of sickle cell disease sufferers and their methods of coping. Social Science & Medicine, 40, 955–960.
Olley, L. B., Brieger, W. R., & Olley, B. O. (1997). Perceived stress factors and coping mechanisms among mothers of children with sickle cell disease in western Nigeria. Health Education Research, 12, 161–170.
Oniyangi, O., & Cohall, D. H. (2013). Phytomedicines (medicines derived from plants) for sickle cell disease. Cochrane Database of Systematic Reviews, 1, CD004448. doi:10.1002/14651858.
Panepinto, J. A., & Bonner, M. (2012). Health-related quality of life in sickle cell disease: past, present, and future. Pediatric Blood & Cancer, 59, 377–385.
Panepinto, J. A., Pajewski, N. M., Foerster, L. M., Sabnis, S., & Hoffmann, R. G. (2009). Impact of family income and sickle cell disease on the health-related quality of life of children. Quality of Life Research, 18, 5–13.
Panepinto, J. A., Torres, S., & Varni, J. W. (2012). Development of the PedsQL™ Sickle Cell Disease Module items: qualitative methods. Quality of Life Research, 21, 341–357.
Ruffieux, N., Njamnshi, A. K., Wonkam, A., Hauert, C. A., Chanal, J., Verdon, V., et al. (2013). Association between biological markers of sickle cell disease and cognitive functioning amongst Cameroonian children. Child Neuropsychology, 19, 143–160.
Schwartz, L. A., Radcliffe, J., & Barakat, L. P. (2009). Associates of school absenteeism in adolescents with sickle cell disease. Pediatric Blood & Cancer, 52, 92–96.
Thornburg, C. D., Calatroni, A., & Panepinto, J. A. (2011). Differences in health-related quality of life in children with sickle cell disease receiving hydroxyurea. Journal of Pediatric Hematology/Oncology, 33, 251–254.
Weatherall, D. J., & Clegg, J. B. (2001). Inherited haemoglobin disorders: an increasing global health problem. Bulletin of the World Health Organization, 79, 704–712.
Wonkam, A., de Vries, J., Royal, C. D., Ramesar, R., & Angwafo, F. F., 3rd. (2013a). Would you terminate a pregnancy affected by Sickle Cell Disease? Analysis of views of patients in Cameroon. Journal of Medical Ethics. doi:10.1136/medethics-2013-101392.
Wonkam, A., Ngongang Tekendo, C., Zambo, H., & Morris, M. A. (2011a). Initiation of prenatal genetic diagnosis of sickle cell anaemia in Cameroon (sub-Saharan Africa). Prenatal Diagnosis, 31, 1210–1212.
Wonkam, A., Njamnshi, A. K., Mbanya, D., Ngogang, J., Zameyo, C., & Angwafo, F. F., 3rd. (2011b). Acceptability of prenatal diagnosis by a sample of parents of sickle cell anemia patients in Cameroon (sub-Saharan Africa). Journal of Genetic Counseling, 20, 476–485.
Wonkam, A., Tekendo, C. N., Sama, D. J., Zambo, H., Dahoun, S., Béna, F., et al. (2011c). Initiation of a medical genetics service in sub-Saharan Africa: experience of prenatal diagnosis in Cameroon. European Journal of Medical Genetics, 54, e399–e404.
Wonkam, A., Mba, C. Z., Mbanya, D., Ngogang, J., Ramesar, R., & Angwafo, F. F., 3rd. (2013b). Psychosocial burden of sickle cell disease on parents with an affected child in Cameroon. Journal of Genetic Counseling. doi:10.1007/s10897-013-9630-2.
World Bank. (2010). Education for all-fast track initiative: support to the education sector. Report No. 48373-CM, 1–2.
Acknowledgments
For their input, we thank the patients’ association, “Globule Rouge,” and the individuals who participated in the survey. This study was supported by the Commission for Humanitarian Affairs of the Geneva University Hospitals, Geneva, Switzerland.
AW and FA designed the project, acquired, analyzed and interpreted the data and wrote the paper; CZ contributed to participants’ recruitment, data acquisition and interpretation; RR contributed to data interpretation and the draft of the paper; DM and JN performed the haematological analyis and interpretation of the data. All the authors critically revised the manuscript and approved the submission.
Conflict of Interest
No conflict of interest to declare.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Wonkam, A., Mba, C.Z., Mbanya, D. et al. Psychosocial Stressors of Sickle Cell Disease on Adult Patients in Cameroon. J Genet Counsel 23, 948–956 (2014). https://doi.org/10.1007/s10897-014-9701-z
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10897-014-9701-z