Experiences of Sickle Cell Patients in Ghana: A Qualitative Study at the Korle-Bu Teaching Hospital, Accra
##plugins.themes.bootstrap3.article.main##
Abstract
Background: Sickle cell disease is an inherited blood disorder that causes red blood cells to become sticky and sickle in shape. Statistics in Ghana showed in 2016 that the prevalence of sickle cell disease was about 25% with an estimated 2% of births, resulting in an approximate number of 15,000 babies born with the disease yearly. This study was aimed at finding out the experiences of sickle cell patients, the care they receive from family and healthcare providers, to gain insights into what can be done effectively by stakeholders to prevent and improve care.
Methods: Qualitative methodology was employed with in-depth interview guide to collect data. Thirty-one participants consisting sickle cell patients, caregivers and healthcare providers were purposively selected at the Korle-Bu Teaching Hospital for the study. Data were recorded, transcribed, coded and categorized into themes in tandem with the study objectives and analyzed using grounded theory principles.
Results: Sickle cell patients have several experiences with ill-health, homecare, facility-care, socio-economic, psychological, and emotional issues, among other fears.
Conclusion: Individuals with sickle cell disease are vulnerable, their care must therefore be of priority importance to the government and all stakeholders to alleviate their suffering.
##plugins.themes.bootstrap3.displayStats.downloads##
##plugins.themes.bootstrap3.article.details##
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.
This open-access article is distributed under a Creative Commons Attribution (CC-BY) 4.0 license.
You are free to: Share — copy and redistribute the material in any medium or format. Adapt — remix, transform, and build upon the material for any purpose, even commercially. The licensor cannot revoke these freedoms as long as you follow the license terms.
Under the following terms: Attribution — You must give appropriate credit, provide a link to the license, and indicate if changes were made. You may do so in any reasonable manner, but not in any way that suggests the licensor endorses you or your use.
No additional restrictions You may not apply legal terms or technological measures that legally restrict others from doing anything the license permits.
How to Cite
References
A framework for assessing the effectiveness, efficiency, and equity of behavioral healthcare. Am J Manag Care, 5(8), 25-43.
Akormedi, M., Asampong, E., & Fobil, J. N. (2013). Working conditions and environmental
exposures among electronic waste workers in Ghana. International Journal of Occupational and Environmental Health, 19(4), 278-286.
Anionwu, E. N., & Atkin, K. (2001). The politics of sickle cell and thalassaemia. Open University
Bakshi, N., Smith, M. E., Ross, D., & Krishnamurti, L. (2017). Novel metrics in the longitudinal
evaluation of pain data in sickle cell disease. The Clinical Journal of Pain, 33(6), 517-527
Boadu, I. (2018, February 13). Sickle cell disease: public awareness and management options –
lessons from Ghana. https://www.graphic.com.gh/news/general-news/15-000-babies-born-with-sickle-cell-disease-annually.html
Cordeiro, RC, Ferreira, SL, & Santos, ACDC (2015). The Sickling Process of Women and Men
with Sickle Cell Disease: A Grounded Theory Study. Latin American Journal of Nursing, 23 (6), 1113-1120.
Gardiner, P., & Dvorkin, L. (2006). Promoting medication adherence in children. American Family
Physician, 74(5), 793-798.
Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment
with data saturation and variability. Field methods, 18(1), 59-82.
Diallo, D., & Tchernia, G. (2002). Sickle cell disease in Africa. Current opinion in
hematology, 9(2), 111-116.
Julius, R. J., Novitsky Jr, M. A., & Dubin, W. R. (2009). Medication adherence: a review of the
literature and implications for clinical practice. Journal of Psychiatric Practice, 15(1), 34-44.
Lehane, E., & McCarthy, G. (2009). Medication non‐adherence—exploring the conceptual mire.
International Journal of Nursing Practice, 15(1), 25-31.
National Institute of Health, (2011, Winter). Sickle Cell Disease: Symptoms, Diagnosis, Treatment
and Recent Developments. The Challenge osteoporosis and brittle bones. https://medlineplus.gov/magazine/issues/winter11/articles/winter11pg18.html
Ocheni, S., Onah, H. E., Ibegbulam, O. G., & Eze, M. I. (2007). Pregnancy outcomes in patients
with sickle cell disease in Enugu, Nigeria. Nigerian journal of medicine: Journal of the National Association of Resident Doctors of Nigeria, 16(3), 252-255.
Ohene-Frempong, K., Oduro, J., Tetteh, H., & Nkrumah, F. (2008). Screening newborns for sickle
cell disease in Ghana. Pediatrics, 121(2), 120-121.
Serjeant, G. R. (2005). Mortality from sickle cell disease in Africa. 330, 432- 433.
Sickle Cell Clinic Records (2011): Adult Sickle Cell Clinic, Korle-Bu Teaching Hospital.
Smith, M., & Brownell, G. (2018). Knowledge, beliefs, attitudes, and behaviors regarding sickle
cell disease: Implications for prevention. Social Work in Public Health, 33(5), 299-316.
Sobota, A., Sabharwal, V., Fonebi, G., & Steinberg, M. (2015). How we prevent and manage
infection in sickle cell disease. British Journal of Jaematology, 170(6), 757-767.
Thomas, V. J., & Taylor, L. M. (2002). The psychosocial experience of people with sickle cell
disease and its impact on quality of life: Qualitative findings from focus groups. British Journal of Health Psychology, 7(3), 345-363.
Umeh, N. I., Ajegba, B., Buscetta, A. J., Abdallah, K. E., Minniti, C. P., & Bonham, V. L. (2017).
The psychosocial impact of leg ulcers in patients with sickle cell disease: I don’t want them to know my little secret. Plos One, 12(10), 1-13.
Wamboldt, F. S., Wamboldt, M. Z., Gavin, L. A., Roesler, T. A., & Brugman, S. M. (1995).
Parental criticism and treatment outcome in adolescents hospitalized for severe, chronic asthma. Journal of Psychosomatic Research, 39(8), 995-1005.
Wethers, D. L. (2000). Sickle cell disease in childhood: Part II. Diagnosis and treatment of major
complications and recent advances in treatment. American Family Physician, 62(6), 1309-1314.
Yarney, L., Buabeng, T., Baidoo, D., & Bawole, J. N. (2016). Operationalization of the Ghanaian
patients’ charter in a peri-urban public hospital: voices of healthcare workers and patients. International Journal of Health Policy and Management, 5(9), 525.
Zemel, B. S., Kawchak, D. A., Ohene-Frempong, K., Schall, J. I., & Stallings, V. A. (2007). Effects
of delayed pubertal development, nutritional status, and disease severity on longitudinal patterns of growth failure in children with sickle cell disease. Pediatric Research, 61(5), 607-613.