Experiences of caregivers of children living with sickle cell disease in Blantyre, Malawi
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Date
2020-11-11
Authors
Journal Title
Journal ISSN
Volume Title
Publisher
Kamuzu University of Health Sciences
Abstract
Type of study
This is a descriptive qualitative study that will explore experiences of caregivers of children
living with sickle cell disease.
Problem statement
In Malawi it has been reported that confirmed cases of Sickle cell disease in children have
reported increased number of admissions, pain episodes and anaemia (Heimlich et al., 2016).To
improve outcomes, early therapeutic interventions are recommended, however trends have
shown poor attendance of children at the QECH sickle cell clinic. There is need to explore
issues surrounding the poor turnover. These can be solicited where the experiences of the
caregivers are known. There are no published studies on experiences of caregivers living with
sickle cell children in Malawi. As such it is important to explore experiences of these
caregivers.
Study objective
Broad objective
To explore experiences of caregivers of children living with sickle cell disease.
Specific objective
5. To describe the emotional impact of learning SCD diagnosis in their children
6. To describe the caregiver’s role in the care of their Sickle cell Children
7. To identify challenges experienced and coping strategies used in the care of their Sickle
Cell children
8. To identify the forms of support caregivers, receive when caring for their Sickle Cell
children Methodology
The study will be conducted in Blantyre, Malawi under QECH 15 participants who are
caregivers to children with sickle cell will be included. The study will utilize qualitative data
collection and analysis method
Expected findings
The study is expected to report experiences of caregivers living with sickle cell children
specifically challenges relating to their psychosocial aspect of life.
Dissemination
The results will be disseminated through meetings at institutions departmental level and
Continuous Professional Development session. Written reports will be sent to the Hospital
Director, the unit Matron, head of Sickle cell clinic and College of Medicine Research
Committee. A manuscript will be submitted to a peer reviewed journal for publication. The
results will also be shared at conferences both national and international.