RESUMO
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.
RESUMO
Objective: Infertility remains a global challenge, with assisted reproductive technology (ART) progressively gaining relevance in developing countries, including Ghana. However, associated ethico-legal challenges have not received the needed policy attention. This study explored the legal and ethical challenges of ART practice in Ghana. Design: The study employed an exploratory phenomenological approach to examine ART in Ghana, focusing on ethics and law governing this practice. Participants: Respondents were ART practitioners, managers, facility owners, representatives of surrogacy/gamete donor agencies, and regulatory body representatives. Methods: A semi-structured interview guide was used to collect data.The in-depth interviews were audiotaped, and responses transcribed for analysis through coding, followed by generation of themes and sub-themes, supported with direct quotes. Results: It emerged that there are no ethical and legal frameworks for ART practice in Ghana, and this adversely affects ART practice. Ethical challenges identified border on informed consent, clients' privacy and clinical data protection, gamete donation issues, multiple gestations, single parenting, and social and religious issues. The legal challenges identified include the non-existence of a legal regime for regulating ART practice and the absence of a professional body with clear-cut guidelines on ART practice. In the absence of legal and ethical frameworks in Ghana, practitioners intimated they do comply with internationally accepted principles and general ethics in medical practice. Conclusion: There are no regulations on ART in Ghana. Legal and ethical guidelines are essential to the provision of safe and successful ART practices to protect providers and users. Governmental efforts to regulate Ghana need to be prioritized. Funding: This study had no external funding support. It was funded privately from researchers' contributions.
Assuntos
Técnicas de Reprodução Assistida , Humanos , Gana , Técnicas de Reprodução Assistida/ética , Técnicas de Reprodução Assistida/legislação & jurisprudência , Feminino , Consentimento Livre e Esclarecido/legislação & jurisprudência , Consentimento Livre e Esclarecido/ética , Masculino , Entrevistas como Assunto , Gravidez , Infertilidade/terapia , Pesquisa QualitativaRESUMO
Sickle cell disease (SCD) is a serious genetic and inherited disorder. It has a physical, psychological, and socioeconomic impact on affected individuals including children and families. Globally, about 275,000 children are born annually with SCD, with an estimated 85% of these births being in Africa. In Ghana, an estimated 2% of infants that were screened were affected by SCD. Although extensive studies have been conducted on the burden on parents of children with SCD, little is known about how parents manage the disease among their children at home in our setting. This qualitative study explored the knowledge of caregivers of children with SCD, how they recognize/monitor complications of the disease and management strategies at home. An explorative qualitative study using the nonprobability purposive method was used to interview fourteen (14) caregivers of children with SCD who were recruited from the Tamale Teaching Hospital. In-depth interviews using an interview guide was used. A tape recorder was used to record each interview yielding a total of fourteen (14) audios. Audiotapes were transcribed verbatim. Data collected during these interviews were analyzed using inductive thematic content analysis. Caregivers have adequate knowledge of the signs and symptoms of SCD, its complications, and the various types their children have but fall short of knowledge on the cause of SCD. Knowledge acquired on SCD does not translate into caregivers' ability to effectively identify and monitor crises or complications at home. Home management strategies used by caregivers' were both pharmacological and nonpharmacological, and some used the combination to manage pain and monitor the health of their children. Even though the majority have used traditional medicine before, they prefer orthodox interventions which they consider more effective.
Assuntos
Anemia Falciforme , Cuidadores , Anemia Falciforme/epidemiologia , Anemia Falciforme/psicologia , Anemia Falciforme/terapia , Cuidadores/psicologia , Criança , Gana , Humanos , Lactente , Pais , Pesquisa QualitativaRESUMO
AIM: To explore Ghanaian nurses' knowledge of invasive procedural pain in children who are in hospital and to identify the effect of unrelieved pain on children, parents and nurses. METHOD: An exploratory, descriptive and qualitative design was adopted. A purposive sampling technique was used and individual face-to-face, semi-structured interviews were conducted with 16 registered nurses from four children's units at a hospital in the Eastern Region of Ghana. Thematic and content analyses were performed. FINDINGS: Four themes emerged: types of invasive procedure; pain expression; pain assessment; and effects of unrelieved pain. Participants had adequate knowledge of painful invasive procedures, however, they were not aware of the range of available validated pain assessment tools, using observations and body language instead to assess pain. CONCLUSION: Ghanaian nurses require education on the use of validated rating scales to assess procedural pain in children. The inclusion of pain assessment and management in pre-registration curricula could improve knowledge.