##article.abstract##
Introduction: Nigeria has the greatest burden of sickle cell disease (SCD) in sub-Saharan Africa. The disorder is usually associated with a huge psychological and financial toll on families and individuals in developing countries. However, SCD diagnosis and management are still largely rudimentary especially in Africa. This study therefore aims to explore the views of physicians about challenges facing SCD management in Nigeria as well as the health system responses to these challenges.
Methods: This qualitative cross-sectional study was conducted in 2015. A total of ten in-depth interviews (IDIs) were conducted among purposively selected resident doctors at the Hematology Department of the University College Hospital (UCH), Ibadan, Southwest Nigeria. Data from the IDIs were transcribed and analyzed with the aid of the NVIVO (version 10) software using the thematic framework approach to qualitative data analysis.
Results: In the opinion of the study participants, many of the SCD patients, cannot access up-to-date medical care because of poor health financing and poverty, inadequate health infrastructures and medical facilities including obsolete blood transfusion services and medical equipment. There were myriads of medical challenges facing individuals with SCD in Nigeria: frequent illnesses and crises which may comprise bone pains, recurrent anemia, malaria, chronic leg ulcer and even risk of HIV and Hepatitis B from frequent blood transfusion. Similarly, SCD patients may experience psychological challenges, according to the respondents, due to the frequent illnesses, discrimination suffered as well as stigmatization. Some respondents submitted that there is still significant ignorance about the disease and its pathophysiology among the patients themselves, their caregivers and the general population thereby feeding a lot of superstitious beliefs. Some health systems challenges highlighted in SCD management include inadequate financial support as well as poor infrastructures for diagnosis and treatment.
Conclusion: The knowledge gap in the community about sickle cell disease should be bridged through constant health education in order to alleviate stigma. There is also a need for an effective policy to protect persons living with SCD from discrimination in the labor market as well as the workplace. Better funding for research as well as the strengthening of the social health insurance will go a long way to promote the management of SCD and reduce catastrophic expenditure and poverty among SCD patients and their families.
Keywords: Sickle cell disease, Health systems management, Physicians’ perspective, Out-of-pocket health expenditure
Résumé
Introduction: Le Nigéria a le plus grand fardeau de drépanocytose en Afrique subsaharienne.Le trouble est généralement associé à une lourde charge psychologique et financière sur les familles et les individus, en particulier dans les pays en voie de développement.Cependant, le diagnostic et la prise en charge de la drépanocytose sont encore largementrudimentaires surtout en Afrique.Cette étude vise donc à explorer les points de vue des médecins sur les défis de la prise en charge de la drépanocytose au Nigeria ainsi que les réponses du système de santé à ces défis.
Méthodes: Cette étude transversale qualitative a été menée en 2015. Au total, neuf entretiens approfondis ont été menés parmi des médecins résidents sélectionnés au sein du département d’hématologie du Collège Hospitalier Universitaire (UCH) à Ibadan, Sud - Ouest du Nigeria. Les données des entretiens approfondis ont été transcrites et analysées à l’aide du logiciel NVIVO (version 10) en utilisant l’approche du cadre thématique pour l’analyse qualitative des données.
Résultats: De l’avis des participants à l’étude, beaucoup de patients drépanocytaires ne peuvent pas accéder à des soins médicaux à jour en raison du mauvais financement de la santé et de la pauvreté, des infrastructures sanitaires et des installations médicales inadéquates, notamment des services de transfusion sanguine et du matériel médical obsolètes. Il y avait une myriade de défis médicaux auxquels sont confrontés les personnes atteintes de la drépanocytose au Nigeria: maladies fréquentes et crises qui peuvent comprendre des douleurs osseuses, anémie récurrente, paludisme, ulcère de jambe chronique et même risque de VIH et d’hépatite B provenant de transfusions sanguines fréquentes. De même, les patients drépanocytaires peuvent rencontrer des difficultés psychologiques, selon les répondants, en raison des maladies fréquentes, de la discrimination subie ainsi que de la stigmatisation. Certains répondants ont fait valoir que la maladie et sa physiopathologie demeurent ignorantes chez les patients eux-mêmes, chez leurs soignants et dans la population en général, alimentant ainsi de nombreuses croyances superstitieuses. Certains défis liés aux systèmes de santé mis en évidence dans la gestion de la drépanocytose comprennent un soutien financier inadéquat ainsi que des infrastructures médiocres pour le diagnostic et le traitement.
Conclusion: Le manque de connaissances sur la drépanocytose dans la communauté devrait être comblé par une éducation sanitaire constante afin de réduire la stigmatisation. Il est également nécessaire de mettre en place une politique efficace pour protéger les personnes vivant avec la drépanocytose contre la discrimination sur le marché du travail et sur le lieu de travail. Un meilleur financement pour la recherche ainsi que le renforcement de l’assurance de santé sociale contribueront grandement à promouvoir la prise en charge de la drépanocytose et à réduire les dépenses catastrophiques et la pauvreté parmi les patients atteints de drépanocytose et leurs familles.
Mots-clés: Drépanocytose, Gestion des systèmes de santé, Point de vue des médecins, Dépenses de santé directes
Correspondence: Dr. O.O. Akinyemi, Department of Health Policy and Management, College of Medicine, University of Ibadan, Ibadan, Nigeria. E-mail: seunakinyemi@hotmail.com.
##submission.citations##
Brown B, Okereke J, Lagunju I, et al. Burden of health care of carers of children with sickle cell disease in Nigeria. Health & social care in the community. 2010;18(3):289-295.
World Health Organization. Fifty-Ninth World Health Assembly. Resolutions and decisions annexes. Resolution WHA59. 20. Sickle cell anemia(Internet). Geneva 2006.
Weatherall DJ. The inherited diseases of hemoglobin are an emerging global health burden. Blood. 2010;115(22):4331-4336.
Adewoyin AS. Management of sickle cell disease: a review for physician education in Nigeria (sub-saharan Africa). Anemia. 2015;2015.
Ohaeri JU and Shokunbi WA. Psychosocial burden of sickle cell disease on caregivers in a Nigerian setting. Journal of the National Medical Association. 2002; 94(12):1058.
Akinyanju OO. A profile of sickle cell disease in Nigeria. Annals of the New York Academy of Sciences. 1989;565(1):126-136.
Fleming A, Storey J, Molineaux L, Iroko E and Attai E. Abnormal hemoglobins in the Sudan savanna of Nigeria. I. Prevalence of hemoglobins and relationships between sickle cell trait, malaria and survival. Annals of tropical medicine and parasitology. 1979;73(2):161-172.
Ferster A, Tahriri P, Vermylen C, et al. Five years of experience with hydroxyurea in children and young adults with sickle cell disease. Blood. 2001;97(11): 3628-3632.
Hickman M, Modell B, Greengross P, et al. Mapping the prevalence of sickle cell and beta thalassaemia in England: estimating and validating ethnic specific rates. British journal of Hematology. 1999;104(4):860-867.
Platt OS, Brambilla DJ, Rosse WF, et al. Mortality in sickle cell disease—life expectancy and risk factors for early death. New England Journal of Medicine. 1994;330(23):1639-644.
Ohaeri JU, Shokunbi WA, Akinlade KS and Dare LO. The psychosocial problems of sickle cell disease sufferers and their methods of coping. Social science and medicine. 1995;40(7):955-960.
Rees DC, Williams TN and Gladwin MT. Sickle-cell disease. The Lancet. 2010;376(9757):2018-2031.
Guion LA, Diehl DC and McDonald D. Conducting an In-depth Interview2001. Available from: http://greenmedicine.ie/school/images/Library/ Conducting%20An%20 In%20 Depth%20Interview.pdf.
Pope C and Mays N. Reaching the parts other methods cannot reach: an introduction to qualitative methods in health and health services research. BMJ: British Medical Journal. 1995; 311 (6996) :42.
Temple B and Edwards R. Interpreters/translators and cross-language research: Reflexivity and border crossings. International Journal of Qualitative Methods. 2008;1(2):1-12.
Streetly A, Dick M and Layton M. Sickle cell disease: the case for coordinated information. British Medical Journal. 1993;306(6891):1491-1492.
Burnes DP, Antle BJ, Williams CC and Cook L. Mothers raising children with sickle cell disease at the intersection of race, gender, and illness stigma. Health and social work. 2008;33(3): 211-220.
Abuosi AA, Adzei FA, Anarfi J, et al. Investigating parents/caregivers financial burden of care for children with non-communicable diseases in Ghana. BMC pediatrics. 2015;15(1):1.
Olatunya OS, Ogundare EO, Fadare JO, et al. The financial burden of sickle cell disease on households in Ekiti, Southwest Nigeria. ClinicoEconomics and outcomes research: CEOR. 2015;7:545.
Mubyazi GM and Njunwa KJ. Is sickle cell disease sufficiently prioritized in policy and socio- economic research on diseases in Tanzania? Lessons for the past 50 years. Tanzania journal of health research. 2012;13(5).
Thompson RJ, Gil KM, Burbach DJ, Keith BR and Kinney TR. Psychological adjustment of mothers of children and adolescents with sickle cell disease: The role of stress, coping methods, and family functioning. Journal of Pediatric Psychology. 1993;18(5):549-559.
Gil KM, Carson JW, Porter LS, et al. Daily stress and mood and their association with pain, health-care use, and school activity in adolescents with sickle cell disease. Journal of Pediatric Psychology. 2003;28(5):363-373.
Dennis-Antwi JA, Dyson S and Frempong KO. Healthcare provision for sickle cell disease in Ghana: challenges for the African context. Diversity and Equality in Health and Care. 2008.
Onwujekwe O, Onoka C, Uguru N, et al. Preferences for benefit packages for community-based health insurance: an exploratory study in Nigeria. BMC health services research. 2010;10(1):162.