Study design
A cross sectional study was conducted among caregivers of children with sickle cell disease aged between 0 to 17 years at the SCD clinic of SMHL.
Study area
SMHL is a private not for profit hospital in Northern Uganda with a main site in Gulu district and three peripheral health centers. Gulu district comprises the Acholi and Lango both of whom speak Luo. However, over the years other tribes have come to settle within the district making the languages spoken diverse but commonly Luganda and Kiswahili are spoken as well. The major economic activity is agriculture and associated business enterprises of agro-processing and marketing. The hospital acts as a teaching hospital for medical students from Gulu University. On top of this it runs a nursing school hence a teaching hospital for those students as well. The hospital is located 340 km North of Kampala City and 6 km West of Gulu town. It offers both in-patient and outpatient services with the four major disciplines of Obstetrics and Gynecology; Internal Medicine, Surgery, and Pediatrics. It has a functional Intensive Care Unit, specialists and other lower cadres in each discipline. The SCD clinic is an outpatient clinic a part of the Young Child Clinic which is under the department of pediatrics, usually operates every Wednesday and is run by staff of the pediatrics department. The hospital has a bed capacity of 550 and employs about 600 employees. Its serves mostly the districts of Gulu and Amuru though serves patients in Uganda and South Sudan. The patient number is about 330,000 people per year. SMHL was chosen to conduct this study because it receives the highest number of patients with sickle cell disease in the region.
Study population
The study included all caregivers of children with SCD who attended the SCD clinic on days of data collection. We included adult caregivers of children with SCD attending SMHL who had stayed with the child for a minimum of 6 months, to allow certainty that the caregiver knows the child and has borne the perils that come with care giving. Caregiver of a child in any Sickle cell crisis which disabled them to promptly respond to study questions and caregivers who could not answer study questions due to any reason were excluded.
Sampling and recruitment procedure
Participants were recruited by the investigators consecutively until the sample size goal was achieved. Introduction and explanation of the purpose of the study was done in the waiting area and written informed consent was obtained from caregivers who were interested in participating and met the study inclusion criteria. The participants were then interviewed by researchers for about 20 minutes each.
Study tools
A questionnaire that included sociodemographic variables of the caregiver like age, sex, number of children, education level, religion, marital status, occupation, sociodemographic variables of children like age, sex, medical variables of children like duration since diagnosis, number of hospitalizations, average duration of hospitalization and family type like nuclear or extended family was used. It also included the patient health questionnaire 9 (PHQ-9), a nine item questionnaire developed by Dr. Robert J Spitzer et al in 1999. It has been widely used in many countries and validated with Ugandan adults [12]. The responses range from “0=not at all” to “3=nearly every day” for each symptom of Depression. These responses were scored and summed up. A total score of 0-4 signifies no depression, 5-9 mild depression, 10-14 moderate depression, 15-19 severe depression and 20-27 very severe depression[13]. This study adopted the tool and a score of >15 was used to indicate severe depression.
Data analysis
All data collected were coded and analyzed using STATA version 14. Continuous variables were summarized in a table as means and standard deviation. Categorical variables were summarized in a table as frequency and percentage. Bivariable analysis and logistic regression done to assess association between independent variables and severe depression. The measure of association was odds ratio considering the corresponding 95% confidence interval. A p value of less than 0.05 was considered statistically significant.
Quality Control
The data collection tool was pretested and piloted for standardization before commencing the actual collection of data. The interviews were conducted by the research group member who speaks Acholi which is the local dialect. All data collection tools and consent form were translated into Acholi language.