Sickle Cell Disease in Children: Knowledge and Home-Based Management Strategies among Caregivers at a Tertiary Facility in Northern Ghana (original) (raw)
Related papers
BMJ Open, 2023
Objective This study sought to explore the burden experienced by informal caregivers in caring for their children with sickle cell disease (SCD). Design A qualitative exploratory design was employed in the study using in-depth interviews. Setting The study was conducted at the sickle cell clinic of the Tamale Teaching Hospital, Ghana. Participants Data were gathered from 15 purposively selected informal caregivers, whose children with SCD received care at the sickle cell clinic of the Tamale Teaching Hospital, using a semistructured in-depth interview guide in May-June 2021. Their responses were audio-taped, transcribed and analysed using the reflexive thematic analysis approach. Results Five major themes emerged from data analysis. These were: the burden of children's ill-health; financial burden; employment challenges; psychosocial burden and determinants of caregivers' burden. These burdens destabilised the personal lives, financial standing, social relationships, and employment of caregivers in general and that of other immediate family members, thus, impacting family processes and health. Conclusions Health professionals must devise strategies for counselling, early diagnosis and effective management of children with SCD across Ghana. The Ministry of Health must subsidise medications and laboratory services for children with SCD to help minimise the financial burden on caregivers. Further, counselling and psychological support services must be established in hospitals to assist caregivers to cope effectively.
Asian Pacific Journal of Health Sciences, 2017
Introduction: Sickle cell disease is an autosomal recessive disease that causes considerable morbidity and mortality. The general objective of the study was to define the knowledge attitude and practice of parents with children that have sickle cell disease towards factors that precipitate sickle cell crises ,while the specific objectives were to determine the knowledge of factors that precipitate sickle cell crises among parents with children suffering from sickle cell disease, to assess the attitude of parents towards reducing the sickle cell crises, to describe the practices that parents do in order to reduce the frequency of hospitalization. Methodology: A cross-sectional quantitative study was conducted on parents with children that had sickle cell disease who went for monthly review at Arthur Davidson Children's hospital in Ndola Zambia. The self-administered structured questionnaire was used for data collection .Data was analyzed using descriptive and inferential statistics on SPSS version 20Results:A total of 216(100%) parents were enrolled into the studyof which 173(80.1%) were female and 43(19.9%)male. Most respondents were aged between 27-37 and were all from Ndola. About half of the respondents had average knowledge 53.9 %.Conclusion:The study reviewed that respondents had average knowledge about sickle cell and factors that precipitate crises, 91. 2% of the respondents had a positive attitude towards the disease and they practiced good methods that have the potential of reducing the crises.
Children
There is limited information on knowledge, perceptions, and management of sickle cell disease (SCD) in Africa in general and in the Democratic Republic of the Congo (DRC) in particular. This study explored knowledge, perceptions, and burden of 26 parents/caregivers of children with SCD in three selected hospitals in Kinshasa, DRC. We conducted a focus group with in-depth interviews with parents/caregivers of children affected with SCD. Four themes were discussed, including knowledge and perceptions, diagnosis and management, society’s perceptions, and the psychosocial burden and the quality of life of the family affected by SCD. The majority of participants/caregivers felt that society, in general, had negative perceptions of, attitudes toward, and knowledge about SCD. They reported that children with sickle cell are often marginalized, ignored, and excluded from society or school. They face a number of challenges related to care, management, financial difficulties, and a lack of ps...
2022
Background: Families of children living with sickle cell disease face several challenges ranging from psychosocial to social-economic challenges. This study aimed to explore psychosocial challenges experienced by caretakers of patients with SCD and the various coping mechanisms. Methods: A mixed-methods cross-sectional study was carried out among caregivers of children with SCD who were admitted at the pediatric wards of the Mbale Regional Referral Hospital from September 2019 to November 2019. Results: Most participants 285(85.59%) reported that they experienced psychological challenges and almost all the participants in this study 297(89.19%) experienced social challenges during the care of their patients. Only 36(10.81%) reported not experiencing any social challenges. Almost all the participants reported coping with the situation in various ways of which, 296(88.89%) used acceptance, 9(2.7%) still lived in denial, while 9(2.7%) used talking with others and getting counseled to reduce the intensity of the feelings experienced. Qualitatively, three themes were generated from the in-depth interviews; knowledge of the child's health condition, common symptoms and care, the experience of psychosocial challenges, and coping strategies. Conclusion. Sickle cell disease has produced two sets of sufferers; the people living with the disease and those who are caring for loved ones. Being conscious of this will help health practitioners to be more empathetic at patients with the caregivers when treating people living with sickle cell disease.
British Journal of Medicine & Medical Research , 2016
Introduction: Sickle Cell Disease (SCD), the most common genetic disorder amongst Black people and one of the major chronic non-communicable diseases (NCD) affecting children, poses a significant psychosocial burden, not only on the sufferers but also on the parents. This study therefore sets out to assess the influence of these parents' knowledge and practices towards reducing the frequency and seeking appropriate treatment of Sickle Cell Crisis in their children. Methodology: This study is a descriptive cross-sectional study conducted in Abeokuta South Local Government Area. A Total Sampling of all the sickle cell patients that attend the selected facilities were recruited into the study. Data were collected with the use of questionnaires which were interviewer administered. Statistical analyses were conducted using SPSS for Windows version 20.0. Results: A total of 415 patients were recruited into the study. Only 39.0% had adequate knowledge of SCD, 75.2% on prevention of crisis and 62.0% on predisposing factors to sickle cell crisis. About two-third [68.0%] of participants' source of information is by hospital staffs. Majority 81.4% have Original Research Article
BMC Public Health
Background Due to its severe adverse effect on child mortality, sickle cell disease (SCD) has been identified as a set of diseases of public health concern. The high mortality rate among children with SCD in Africa has been attributed to several factors including sub-optimal management and care. This study documented the nutrition-related knowledge and practices of caregivers of teenagers who suffer from sickle cell disease (SCD) to inform decisions on integrated management of the disease. Methods The study included caregivers (n = 225) of adolescents with SCD who attended clinic at selected hospitals in Accra, Ghana. Pre-tested semi-structured questionnaire was employed in the gathering of information related to general and nutrition-related knowledge about SCD, as well as data on their nutrition-related practices with regards to their children who suffer from SCD. Pearson’s Chi-square test and binary logistic regression analyses were applied to explore the relationship between car...
International Journal of Environmental Research and Public Health
Tanzania is among the top five countries with a high burden of sickle cell disease (SCD) in the world. Even though the effects of SCD on quality of life have been documented in other countries including Nigeria and the United States of America, few are known from Tanzania. Therefore, this study focused on evaluating the effects of SCD on the quality of life among children living with SCD and their parents. The study employed a qualitative approach to interview purposively selected parents of children who have lived with SCD and have used hydroxyurea (HU) for more than 3 years. The in-depth interviews were conducted with 11 parents of children with SCD at the Muhimbili University of Health and Allied Sciences (MUHAS) in Dar-es-salaam, Tanzania. A semi-structured interview guide was used. Interviews were audio-recorded, transcribed, and thematically analyzed. Three themes were generated including psycho-social effects: family conflicts and divorce, limited access to education, stress ...
BMC Research Notes, 2023
Objective To explore the knowledge and attitude towards sickle cell disease (SCD) among care givers of paediatric sickle cell patients at Mbale regional referral hospital in Eastern Uganda. Methods A cross sectional study was conducted at Mbale regional referral hospital. We used simple random sampling technique to recruit participants from among the care givers of pediatric sickle cell patients admitted at the hospital, administered questionnaires and conducted multivariable logistic regression to establish the association between the different factors. Results 372 respondents participated in the study, 82.26% of which were female. 57.80% of the respondents had ever heard of SCD/SCA. 36.02% were willing to stay in a relationship with their partner despite the risk of having a child with SCD/SCA. A multivariate analysis revealed that variables; "number of children", "children with sickle cell can cope with life" and "willing to stay in a relationship despite the risk of a having a child with sickle cell" were statistically significant. Conclusion There was a high level of general awareness about SCD/SCA but comprehensive knowledge about its cause and prevention was low and the majority did not find a reason as to why it should influence their marital decisions. Inclusion of SCD/SCA in existing health education programs is highly recommended.