‘I can die today, I can die tomorrow’: lay perceptions of sickle cell disease in Kumasi, Ghana at a point of transition

Dennis-Antwi, Jemima; Culley, Lorraine; Hiles, David; Dyson, Simon

doi:10.1080/13557858.2010.531249

Cited by 51 publications

(48 citation statements)

References 20 publications

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“…A notable exception is the work of Dennis-Antwi and colleagues (Dennis-Antwi, Culley, Hiles, & Dyson, 2011) who studied lay perceptions of SCD in Ghana by conducting individual interviews with fathers of children with SCD and focus groups with the mothers and a group of health professionals. The researchers concluded that perspectives on SCD are embedded both within stable aspects of culture such as the high value of children, and within a societal transition to greater access to health insurance and a SCD population living beyond the newborn years.…”

Section: Introductionmentioning

confidence: 99%

Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana

Treadwell

Anie

Grant

et al. 2014

Journal of Genetic Counseling

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Sickle cell disease (SCD), sickle cell trait (SCT) and related conditions are highly prevalent in sub-Saharan Africa. Despite the public health implications, there is limited understanding of the unique needs regarding establishing and implementing extensive screening for newborns and appropriate family counseling. We sought to gain understanding of community attitudes and beliefs about SCD/SCT from counselors and potential counselors in Ghana; obtain their input about goals for counseling following newborn screening; and obtain guidance about developing effective counselor education. Five focus groups with 32 health care providers and health educators from 9 of 10 regions in Ghana were conducted by trained facilitators according to a structured protocol. Qualitative data were coded and categorized to reflect common themes. Saturation was achieved in themes related to genetics/inheritance; common complications of SCD; potential for stigmatization; marital strain; and emotional stress. Misconceptions about SCT as a form of SCD were prevalent as were cultural and spiritual beliefs about the causes of SCD/SCT. Potential positive aspects included affected children's academic achievement as compensation for physical limitations, and family cohesion. This data informed recommendations for content and structure of a counselor training program that was provided to the Ministry of Health in Ghana.

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Section: Introductionmentioning

confidence: 99%

Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana

Treadwell

Anie

Grant

et al. 2014

Journal of Genetic Counseling

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“…A non-drug strategy which represents a diversification of sickle cell management strategies showed that the doctors are doing a lot for the patients [7,8]. This supports the nursing chronic disease care model as posited by Furtudo and Nobrega) [5], which called for multidimentional approach in the management of chronic diseases.…”

Section: The Health Workers Definition Of Sickle Cell Disease and Manmentioning

confidence: 65%

The Health Workers Perspectives in the Management of Sickle Cell Disease in an Urban Health Centre in Ile-Ife, Nigeria

Muoghalu¹,

Awolowo²

2017

J Hematol Thrombo Dis

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Management of sickle cell disease is key to improved quality of life of people living with the disease in Nigeria. This paper examined management strategies utilized by health workers in managing sickle cell patients in Obafemi Awolowo University health centre, in Ile-Ife, Nigeria. The specific objectives were to explore health workers definition of the disease, the observed symptoms by the health workers, drugs and non-drug strategies employed by these health workers in the management of the patients and the adequacy of health facilities for managing sickle cell patients. With structured in-depth interview schedule, fifteen health workers including nurses and doctors were interviewed. It was indicated that unanimously, health workers defined the disease as an inherited blood disorder which is highly symptomatic with a lot pains all over the body especially in joints and chest and that the sufferers are often admitted in the hospital. Also, the health workers use antibiotics, folic acid, analgesics, anti-malaria drugs, intravenous fluids and blood transfusion as drug regimens for managing the sufferers. The non-drug strategies employed by the health workers were counselling, education for self-care and psychotherapy. Furthermore, the health workers indicated that inadequate health facilities hamper their capacity to deliver effective management to people living with the disease. The paper concludes that health workers employ both drug and non-drug management strategies that promise improved quality of life for sickle cell patients in Nigeria but are constrained by inadequate health facilities and consumables.

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“…This project has been conducted in collaboration with the Ministry of Health and the Ghana Health Service and screened 479,837 babies from February 1995 to October 2016 with 8155 (2%) testing positive for SCD (Ohene‐Frempong and Lamptey personal communication). Although SCD affects about 2% of all newborns annually in Ghana (~ 18,000 births), it is not considered of critical public health importance (Dennis‐Antwi et al ; Ross et al ; Treadwell et al ). Support services for SCD are limited in access and scope with a few SCD Associations existing nationwide to provide social and psychological support to patients and families.…”

Section: Introductionmentioning

confidence: 99%

Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana

Dennis-Antwi

Ohene‐Frempong²,

Anie

et al. 2018

Journal of Genetic Counseling

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Sickle cell disease (SCD) is highly prevalent in Africa with a significant public health burden for under-resourced countries. We employed qualitative research methods to understand the ethical, legal, and social implications of conducting genomic research in SCD under the Human Heredity and Health in Africa (H3Africa) initiative. The present study focused on religious and cultural aspects of SCD with the view to identifying beliefs and attitudes relevant to public health interventions in Ghana. Thematic analyses from individual and group interviews revealed six key areas of importance, namely, reliance on a supreme being; religion as a disruptive influence on health behaviors; role of religious leaders in information sharing and decision-making; social, religious, and customary norms; health and religious/supernatural beliefs; and need for social education and support through church and community. Findings suggest that public health programs in Ghana should not only aim at increasing knowledge and awareness about SCD and its management but also create an understanding of the relevance of genomics and alternative technological advancement to diagnosis and ethical decision-making around available options for health seeking. Future research should engage communities to help address the ethical and social implications of a persuasive religious influence on SCD-related health decisions.

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‘I can die today, I can die tomorrow’: lay perceptions of sickle cell disease in Kumasi, Ghana at a point of transition

Cited by 51 publications

References 20 publications

Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana

Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana

The Health Workers Perspectives in the Management of Sickle Cell Disease in an Urban Health Centre in Ile-Ife, Nigeria

Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana

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