Study design & site.
We conducted a cross-sectional study at an HIV clinic at Kabuyanda Health Centre IV in Isingiro district from July 2020 to August 2020. The health facility is located 108 Km south of Mbarara city. Kabuyanda HC IV is the only public health facility in the area that offers HIV care services. The adult HIV clinic operates two days a week (Wednesday and Thursday) for Antiretroviral Therapy (ART) refill appointments but the adolescent HIV clinic operates every last Thursday of the month. The clinic serves about 1200 of HIV clients of whom 112 are youths aged 15-24 years. Isingiro district was selected for this study due to its young population: 57.2% aged 0-17 years and 17.3% aged 15-24 years (19). The study area is a rural community with households earning their livelihood through subsistence farming and cattle keeping.
We enrolled 102 youth aged 15-24years living with HIV who were accessing care at Kabuyanda Health Centre IV and had been in care for at least one year. The sample size was determined using Krejcie-Morgan Formula (20) using the 90% retention in care among the youth as determined in a previous study in Uganda (21).
Sampling and data collection
A list of potential participants was generated by the data clerks and the HIV counsellor at the facility contacted the participants by phone calls, and referred them to the research team at the facility who assessed their eligibility to participate in the study. Those who met the inclusion criteria, study aims were explained to them in their local language, and were given a chance to ask questions for clarification. All eligible participants gave written informed consent to participate in this study. Participants below 18 years assented and their care givers provided written informed consent. A consecutive sample of youths aged 15-24 years who consented to participate in the study were recruited.
Retention in care
Retention in care was defined as having attended at least 4 visits in 12 months prior to this study with at least 1 visit each quarter. The proportion of youths aged 15-24 years retained in care , was obtained basing on the 3-month visit constancy method, among the methods described by Charles and colleagues (22). We reviewed medical records of 12 months prior to the study. The 12 months were divided into four equal quarters and the number of visits in each quarter was recorded. Each medical file was assigned a code to ensure confidentiality.
Socio-demographic and disease characteristics
A well-designed interviewer administered questionnaire was created to explore factors that influence retention in HIV Care. The tool was also designed to capture the sociodemographic information including; age, gender, occupation, marital status, living arrangement, duration on treatment, ART regimen, HIV acquisition and HIV disclosure status.
HIV Berger Stigma Scale
HIV-related stigma was measured using the Berger HIV Stigma Scale (23), which is a validated and standardized to measure stigma experienced by people living with HIV. It contains 40-items scored on a 4-point Likert-type scale (strongly disagree, disagree, agree, strongly agree) with total stigma scores ranging from 40 to 160. The scale measures 4 stigma subscales; (1)personalized stigma (assessed by 18 items) measuring consequences of people knowing ones HIV status including rejection by others, loss of close friends, (2) disclosure concerns (assessed by 10 items) which measure the likelihood that one will tell others about their HIV diagnosis, (3) negative self-image (assessed by 13 items) assessing individual’s feelings about themselves, (4) concern with public attitudes (assessed by 20 items) which measures participants’ public’s perceptions of attitudes towards persons living with HIV(23). Higher scores indicate a greater level of agreement with each item, and the severity of stigma.
The Interviewer administered questionnaire and the Berger stigma scale were administered in the same interview with each participant. The duration of the interview was approximately 35-45 minutes. Interviews were conducted in a doctor’s room at the health facility to ensure privacy and confidentiality of patients’ information. Participants who required post-interview counselling were referred to the facility counsellor after the interview.
Data management and analysis
At the end of very interview, the questionnaires were reviewed for completeness. The research team ensured that patient charts were de-identified and reviewed only once. Filled questionnaires were kept in a lockable cupboard to ensure data safety. Data entry forms were prepared in Microsoft excel 2013 where data were entered in duplicate to avoid errors. Entered data was saved and stored on a pass-word protected computer that was only accessed by the research team members. A copy of same data set file was saved on a Flash disk stored by the principal investigator, as a back-up file. After data cleaning, data were imported into the IBM SPSS Statistic 20 for analysis.
Continuous variables were described using frequencies and percentages, ranges, means with standard deviations and p-values. Retention in care was calculated as the proportion of youths aged 15-24 years who sought care from Kabuyanda HC IV at least once quarter in the 12 months prior to the study out of the total number of participants. Age of participants was stratified into adolescents (15-19 years) and young adults (20-24 years). The total Berger stigma scale score and sub-scores of individual forms of stigma, were obtained by adding Likert scores for individual items in the scale. Due to lack of a universally accepted cut point of the scores, we adopted the categorization put forward by Charles and colleagues (2012) in which the overall stigma scores were categorized into three categories as: no/mild, moderate, and severe stigma using the 33rd and 66th percentile cut off values from the distribution of scores (22). From this, we obtained proportions of youths experiencing different levels of stigma. Considering the possible stigma scores for total stigma and the categories, participants who scored below 33rd percentile of the stigma scale, were considered having no/mild stigma, those scored between 33rd and 66th percentile had Moderate stigma, and those above whose scores are above the 66th percentile, had severe stigma. The proportion of participants with stigma was calculated as the total participants with moderate or severe stigma out of the total number of participants. The proportion of participants with different dimensions of stigma was calculated as the total participants with moderate or severe specific stigma dimension out of the total number of participants.
At bivariate analysis, we analyzed categorical variables using cross tabulations, Crude Odds Ratios (COR), chi-square test, and p-value to assess for association between the socio demographic and clinical variables (age, gender, tribe, occupation, marital status, geographical location, and disclosure status, living situation), HIV related stigma and the likelihood of retention in care. All covariates that were associated with the outcome variable with a P < 0.3, were included in the multivariate regression model to determine the independent factors using the Adjusted Odds Ratios (AOR)with 95% C.I, with 95% confidence interval, and level of significance at p value <0.05.