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Published in final edited form as: AIDS Educ Prev. 2024 Dec;36(6):415–427. doi: 10.1521/aeap.2024.36.6.415

THE EFFECT AND ACCEPTABILITY OF AN HIV EDUCATION INTERVENTION FOR ADOLESCENTS WITH INTELLECTUAL DISABILITY IN UGANDA: A QUASI-EXPERIMENTAL STUDY

Anita Arinda 1, Noeline Nakasujja 2, Mary M McKay 3, Fred M Ssewamala 4, James Mugisha 5
PMCID: PMC11957949  NIHMSID: NIHMS2065386  PMID: 39705178

Abstract

Adolescents with intellectual disability (ID) are often deficient in knowledge about HIV/AIDS. This pilot study evaluated the impact and acceptability of an HIV education intervention for adolescents with mild-to-moderate ID delivered in a peri-urban setting in Uganda. This quasi-experimental study involved 60 adolescents with mild to moderate ID evenly split between the intervention and control groups. Data were collected using a questionnaire that included sociodemographic information, HIV knowledge and attitudes, and acceptability measures, administered at baseline, immediately post-intervention, and 3 months later. Approximately 53.3% of the participants were male, and 50% had mild ID. Immediately post-intervention, the intervention group reported a significantly higher increase in HIV knowledge (8.5 vs. −0.2, p < .001) and attitudes (3.9 vs. 0.1, p < .001) than the control group. A similar significant increase was maintained at 3 months post-intervention. These findings show that tailored education programs can improve HIV knowledge and attitudes in adolescents with ID.

Keywords: HIV, health knowledge and attitudes, adolescents, health education, intellectual disability

INTRODUCTION

HIV/AIDS has been largely ignored in the population of people with disabilities, including those with intellectual disability (ID) who present with cognitive and adaptive deficits before 18 years of age (Shree & Shukla, 2016). This group, among the world’s most marginalized, is disproportionately exposed to risk factors for HIV (Groce, 2005). People with ID are at greater risk of experiencing sexual abuse than the general population (Aderemi et al., 2013; Hanass-Hancock, 2009). Impulse control deficits, impaired judgment, mental health difficulties, and limited awareness of risky behaviors compound their vulnerability (Brown & Jemmott, 2002; De Beaudrap et al., 2014).

Adolescents with ID often lack accurate HIV knowledge, harboring misconceptions or inadequate awareness. A study in Nigeria found lower HIV transmission knowledge scores in adolescents with ID compared to those without ID (Aderemi et al., 2013). Another study among adolescents with mild ID in South Africa revealed gaps in HIV knowledge, including ignorance of the existence of HIV/AIDS and erroneous beliefs about HIV transmission (Dawood et al., 2006). Although it was not specific to adolescents with ID, a recent study in Uganda also highlighted gaps in HIV knowledge among persons with disabilities, including misconceptions about transmission (Abimanyi-Ochom et al., 2017).

In Uganda, adolescents and young people represent a significant proportion of new HIV infections. In 2022, there were 8,600 new HIV infections in the adolescent age group (10–19 years), which represented 16.5% of new HIV infections (Uganda AIDS Commission, 2023). Young people aged 15–24 years contributed 36.5% of new HIV infections in the same year. According to a 2018 study, 1.9% of children aged 5–17 years have a mental disability characterized by a learning disability (Uganda Bureau of Statistics, 2018). There is a shortage of data on HIV prevalence and incidence in people with any form of disability, including ID, in Uganda. However, the available studies note that individuals with psychosocial and/or intellectual disabilities have a higher chance of being exposed to HIV risk factors like sexual violence (Abimanyi-Ochom et al., 2017; Uganda Bureau of Statistics, 2018).

Comprehensive HIV knowledge is crucial for adolescents to adopt safer practices and for those who are infected to receive treatment and reduce viral load (Govender et al., 2018; UNICEF, 2020). Schools are a critical resource for helping adolescents access the information and skills they need to avoid HIV infection. While school-based sex education is effective in changing the knowledge, attitudes, and practices (UNICEF, 2020), adolescents with ID often do not attend school, and those who manage to do not get to the class level where HIV information is taught (Aderemi et al., 2013). The belief in asexuality and fear of promiscuity further hinder their exposure to sex education (Groce et al., 2013; Rohleder et al., 2009).

On a positive note, health education interventions can improve health knowledge and behavior in people with ID. In the United States, Wells and colleagues (2012, 2014) assessed the utility of a computer-based interactive multimedia program in reducing HIV transmission in men and women with ID, finding statistically significant gains in HIV knowledge from pretest to posttest. However, such interventions may not be viable in low-income areas like sub-Saharan Africa due to technology accessibility constraints.

Despite the recognized deficit in HIV knowledge among adolescents with ID, few health-based interventions for HIV prevention exist for this population (Hameed et al., 2020), emphasizing the need for targeted approaches to equip them with knowledge promoting protective behaviors (Anderson et al., 2007).

In this pilot study, we evaluated the effect of an HIV education program on HIV knowledge and attitudes in adolescents with mild to moderate ID and its acceptability in this population. We hypothesized that the intervention would significantly improve HIV knowledge and attitudes and demonstrate high acceptability among adolescents with mild-to-moderate ID in Entebbe, Uganda.

METHODS

STUDY DESIGN

This was a quasi-experimental study design in which a pretest-posttest design was used with a nonrandomly selected control group.

STUDY SITE

The study took place in Entebbe, a peri-urban municipality in Uganda. It is located 34 km from Kampala, the capital of Uganda. The participants were selected from the two special needs schools in Entebbe: Entebbe Welfare School for Special Needs, which has 80 students, and Noah’s Ark Children’s Center, which has 40 students. The schools were selected purposively as they were the only eligible schools willing to participate in the study. The students were aged 4–20 years and had different disabilities, including physical disability, intellectual disability, hearing impairment, and visual impairment. Entebbe Welfare School for Special Needs was assigned to the intervention arm, while Noah’s Ark Children’s Center was assigned to the control (waitlist) arm.

STUDY POPULATION

We enrolled 60 adolescents aged 12 to 17 years with mild-to-moderate ID, with 30 participants from each school. Participants were selected by convenience sampling. That is, every accessible and eligible adolescent was consecutively recruited until the sample size was achieved.

STUDY PROCEDURE

The study was conducted from June 2022 to November 2022. The study team, comprising a psychiatrist as the principal investigator and two mental health nurses, was introduced to the schools by the councilor for disability in Entebbe. The adolescents, aged 12–17 years, were selected by teachers and introduced to the study alongside their caregivers during a scheduled visit by parents. After obtaining parental consent, the principal investigator assessed the adolescents for ID using Raven’s Progressive Matrices. Those meeting the criteria for mild-to-moderate ID completed demographic and HIV knowledge and attitudes questionnaires administered by research assistants. Special needs teachers, trained by the principal investigator, delivered the eight-session intervention to the intervention arm. The HIV knowledge and attitudes questionnaire was administered immediately after the intervention and again three months later. After the 3-month assessment, the same intervention was administered to the control arm.

THE INTERVENTION

The intervention was developed by reviewing HIV training materials for adolescents and consulting various stakeholders, including special needs teachers, parents of children with ID, health workers, and counselors for people with disabilities. Based on their input, a training manual was created. The intervention comprised four 90-minute modules, each split into two 45-minute sessions, facilitated by special needs teachers in groups of six adolescents. The intervention was delivered in English and Luganda (a common local language in central Uganda) at school outside regular class hours. Illustration-based paper charts, specifically designed for the intervention, supported the teaching. The modules were as follows:

  1. Introduction: This covered establishing rapport, education on the group process, and setting ground rules.

  2. HIV Basics: This module looked at the concepts of illness and health, what HIV is, HIV transmission, and positive attitudes toward people living with or affected by HIV.

  3. HIV Prevention and Treatment: This included detailed information about sexual relationships and HIV prevention. Information was also provided about HIV testing and treatment for living with HIV as a long-term medical condition.

  4. Keeping Safe: This final module focused on sexual abuse prevention and rights awareness.

INTERVENTION TRAINING AND SUPERVISION

The PI trained four experienced special needs teachers over 2 days, focusing on intervention, understanding, and delivery to the adolescents. Training included roleplays and peer feedback. The PI supervised the teachers and addressed training issues through weekly meetings. The control group did not receive any intervention during the study period; however, they were given the same HIV education intervention after data collection at the 3-month post-intervention time point.

STUDY MEASURES

Exposure Variable.

The primary exposure variable was participation in the intervention, dichotomized as “intervention participation versus nonparticipation.”

Covariates.

Sociodemographic variables were collected using a standardized questionnaire in English or Luganda. They included age, sex, primary caregiver, religion, any other disability, previous HIV knowledge, and source of HIV knowledge. The questionnaire also recorded the level of intellectual disability.

Outcome Variable.

The outcome variable, HIV knowledge and attitudes, were assessed at baseline, immediately post-intervention, and 3 months post-intervention using a tool developed for this purpose. The tool was developed after a review of two sets of available HIV/AIDS knowledge tests that were used in low- and middle-income settings (Dawood et al., 2006; UNICEF, 2011). It consisted of 25 items covering HIV knowledge (19 questions) and attitudes towards people living with HIV (6 questions). Respondents were marked as “yes,” “no,” or “don’t know,” with correct responses receiving one mark. The maximum scores were 19 for knowledge and 6 for attitude questions. The knowledge and attitude scales assessed at the Pretest showed a good internal consistency of 0.823 and 0.817, respectively.

Participant Evaluation of the Interventions.

At the end of the eight sessions, participants rated the intervention on five items: relevance of the information, enjoyment of the sessions, perceived meaningfulness of the content, confidence in using the learned knowledge, and willingness to share knowledge. Responses ranged from “strongly agreed” to “strongly disagreed.”

All questionnaires were paper-based and administered by research assistants in either English or Luganda. Caregivers responded to certain questions in the sociodemographic questionnaire, while the adolescents completed the remaining questionnaires. Before full-scale data collection, the tools were pilot-tested using a group of 10 adolescents and adolescents with mild-to-moderate ID to identify any practical issues, such as unclear questions and the length of the tool.

STATISTICAL ANALYSIS

The data were entered and analyzed using Stata Statistical Software, Release 17 (StataCorp, 2021). There was a 100% response rate for all questionnaires at all time points. Baseline characteristics were analyzed using descriptive statistics. Participants were categorized into the intervention and control groups. The chi-square test and Fisher’s exact test were used to determine differences in the baseline characteristics of the study arms. Scores for the baseline, immediate post-intervention, and 3-month post-intervention tests were generated, with higher scores indicating better knowledge and attitudes. Means and standard deviations were used. Paired t-tests were conducted to assess the differences between the two groups at each time point. The level of significance was set at a p < .05.

ETHICAL CONSIDERATIONS

This study received approval from the Mildmay Uganda Research Ethics Committee (Ref: MUREC-2021-70) and the Uganda National Council of Science and Technology (Ref: HS2159ES). Written informed consent was obtained from the caregivers of all the study participants, and the adolescents provided written assent.

RESULTS

STUDY PARTISIPANTS

A total of 91 participants were assessed for eligibility at the two schools. Sixty participants were enrolled, 30 in each study arm. None of the participants dropped out of the study and were all included in the analysis (Figure 1). Slightly more than half of the respondents were male (n = 32, 53.3%), and half had mild intellectual disability (50%). Only 33.6% of the participants had heard of HIV before the training. There was no significant difference between the two study arms, as shown in Table 1.

FIGURE 1.

FIGURE 1.

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Flow chart of study participants.

TABLE 1.

Baseline Characteristics of the Study Participants by Treatment Arm

Characteristic Total (N = 60)
n (%)		 Intervention (n = 30)
n (%)		 Control (n = 30)
n (%)		 p value
Sex
Female 28 (46.7) 15 (50.0) 13 (43.3) .605
Male 32 (53.3) 15 (50.0) 17 (56.7)
Level of ID
Mild 30 (50.0) 16 (53.3) 14 (46.7) .606
Moderate 30 (50.0) 14 (46.7) 16 (53.3)
Primary caregiver
Both parents 28 (46.7) 10 (33.3) 18 (60.0) .082
Mother only 25 (41.7) 15 (50.0) 10 (33.3)
Father only 2 (3.3) 1 (3.3) 1 (3.3)
Other relatives 3 (5.0) 3 (10.0) 0 (0.0)
Nonrelatives 2 (3.3) 1 (3.3) 1 (3.3)
Religion
Anglican 23 (38.3) 8 (26.7) 15 (50.0) .115
Catholic 14 (23.3) 8 (26.7) 6 (20.0)
Moslem 12 (20.0) 8 (26.7) 4 (13.3)
Othera 11 (18.3) 6 (20.0) 5 (16.6)
Other disability
Hearing 2 (3.3) 8 (26.7) 11 (36.7) .559
Physical 5 (8.3) 4 (13.3) 1 (3.3)
Speech 13 (21.7) 7 (23.3) 6 (20.0)
None 24 (40.0) 11 (36.7) 13 (43.3)
Previous HIV knowledge
No 38 (63.3) 18 (60.0) 20 (66.7) .592
Yes 22 (36.7) 12 (40.0) 10 (33.3)
Source of HIV knowledge
Parents 9 (15.0) 6 (20.0) 3 (10.0) .335
Peers 4 (6.7) 3 (10.0) 1 (3.3)
Teachers 9 (15.0) 3 (10.0) 6 (20.0)
Othersb 2 (3.3) 0 (0.0) 2 (6.7)
N/A 36 (60.0) 18 (60.0) 18 (60.0)
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a

Pentecostal, Seventh Day Adventist

b

Radio, other relatives.

CHANGE IN HIV KNOWLEDGE AND ATTITUDE OVER TIME FOR THE TWO STUDY ARMS

At baseline, both intervention and control groups had low mean knowledge scores (5.7 and 5.4, respectively) with no significant difference between the scores. Following the intervention, the intervention group’s mean knowledge score increased significantly from 5.7 to 14.2 (p < .001). Though the gains in knowledge in the intervention were maintained at 3 months (5.7 vs. 12.1, p < .001), the mean knowledge score was slightly but significantly reduced from immediate post-intervention to 3 months post-intervention (14.2 vs. 12.1, p < .001). The control group’s scores remained relatively unchanged over the three different time points (5.4 vs. 5.2 vs. 5.2).

Similarly, there was no difference in the mean attitude score between the control (0.8) and intervention (1.5) groups at baseline (p = .109). Immediately after the intervention, the intervention group’s mean attitude score significantly increased from 1.5 to 5.4 (p < .001). There was a nonsignificant decrease in attitude at 3 months (5.4 vs. 4.9, p = .083). The mean attitude score in the control group remained relatively the same across the three different time points (0.8 vs. 0.9 vs. 0.7).

EFFECT OF THE HIV TRAINING INTERVENTION ON HIV KNOWLEDGE AND ATTITUDES OF THE STUDY PARTICIPANTS

From Baseline to Immediate Post-intervention.

Following the intervention, the mean difference in knowledge achieved by the two groups post-intervention significantly differed, with the intervention arm having a greater mean difference in post-intervention knowledge scores (p < .001). Similarly, the mean difference in attitude between the two groups significantly differed immediately post-intervention (p < .001). These findings are elaborated in Table 2.

TABLE 2.

Comparison of Knowledge and Attitude Scores From Baseline to Immediate Post-intervention

Baseline
 Immediate post-intervention
Arm Mean (SD) p value Mean (SD) p value Mean difference p value
Knowledge
Intervention 5.7(2.6) .527 14.2 (1.6) < .001 8.5 (7.6, 9.4) < .001
Control 5.4 (4.2) 5.2 (3.8) −0.2 (−1.3, 1.0)
Attitude
Intervention 1.5 (2.1) .109 5.4 (1.4) < .001 3.9 (3.1, 4.8) < .001
Control 0.8 (1.3) 0.9 (1.1) 0.1 (−0.5, 0.7)
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From Baseline to 3 Months Post-intervention.

There was a significant difference in the mean difference in knowledge achieved by the two groups at 3 months post-intervention, with the intervention arm having a greater mean difference in knowledge scores post-intervention (p < .001). Similarly, there was a significant difference in the mean difference in attitudes between the two groups at 3 months post-intervention (p < .001). These findings are elaborated in Table 3.

TABLE 3.

Comparison of Knowledge and Attitude Scores From Baseline to 3 Months Post-intervention

Baseline
 3 months post-intervention
Arm Mean (SD) p value Mean (SD) p value Mean difference p value
Knowledge
Intervention 5.7 (2.6) .527 12.1 (2.5) < .001 6.4 (5.0, 7.8) < .001
Control 5.4 (4.2) 5.2 (3.7) −0.2 (−1.1, 0.7)
Attitude
Intervention 1.5 (2.1) .109 4.9 (1.8) < .001 3.4 (2.6, 4.3) < .001
Control 0.8 (1.3) 0.7 (0.9) −0.1 (−2.6, −0.4)
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PARTICIPANTS’ EVALUATION OF THE INTERVENTION

Over 50% of the participants agreed or strongly agreed that (1) the information was relevant to them (70%), (2) the training sessions were interesting (66.6%), and (3) the lesson content was meaningful (50%). However, less than 50% agreed or strongly agreed that they had confidence in using the knowledge they gained from the training in their lives (43.3%) or would share with others what they learned (40%). The remaining evaluation findings are shown in Table 4.

TABLE 4.

Participant Evaluation of the HIV Training Intervention

Statement Strongly agree or agree n (%) Neutral n (%) Strongly disagree or disagree n (%)
The information taught was relevant to me. 21 (70.0) 5 (16.7) 4 (13.3)
The training sessions were interesting. 20 (66.6) 7 (23.3) 3 (10.0)
The lesson content was meaningful to me. 15 (50.0) 7 (23.3) 8 (26.6)
I have the confidence to use the knowledge gained from the training in my life. 13 (43.3) 10 (33.3) 7 (23.4)
I want to tell others about what was taught. 12 (40.0) 7 (23.3) 11 (36.6)
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DISCUSSION

This pilot study evaluated an HIV education intervention for adolescents with mild-to-moderate intellectual disability (ID) in a peri-urban setting in Uganda. Results indicate improved HIV knowledge and attitudes among the study participants immediately post-intervention, sustained at 3 months. In addition, over half of the participants found the information relevant, the content meaningful, and the training sessions interesting but were not confident about applying or sharing what they had learned.

Our study demonstrated that an HIV education intervention improved HIV knowledge and attitudes of adolescents with mild-to-moderate ID, and these gains were sustained 3 months post-intervention. Previous research supports the efficacy of education programs in enhancing health-related knowledge, attitudes, and practices in this population (Bodde et al., 2012; Hinckson et al., 2013; Scott & Havercamp, 2016). Scott and Havercamp (2016) reviewed 13 studies on health promotion interventions in individuals with ID. They found that ten studies reported increased knowledge on health-related topics, such as physical exercise, nutrition, and breast cancer, following the interventions. Similarly, a 10-week program focusing on physical exercise and education on nutrition in children and youth with ID resulted in increased distance walked by participants, improved knowledge of nutrition, and reduced consumption of confectionary and chocolates.

Regarding HIV education, Wells and colleagues have demonstrated that computer-based interactive multimedia programs effectively improve HIV/AIDS knowledge and skills in people with ID (Wells et al., 2012, 2014). Their studies reported statistically significant improvements in HIV/AIDS knowledge, condom application skills, behavioral skills related to HIV avoidance, and intention to use condoms from the pretest to the posttest, with medium to large effect sizes. Given the scarcity of tailored HIV education interventions for individuals with ID (Aderemi et al., 2013), our findings underscore the importance of such initiatives in bridging gaps in public health interventions and promoting HIV prevention.

There was a slight decline in HIV knowledge 3 months post-intervention, a phenomenon that is common in educational interventions for this demographic. This decline may be due to the tendency of individuals with ID to forget information quickly (Lunsky et al., 2003). These findings emphasize the importance of implementing more frequent educational campaigns at relatively short intervals to reinforce knowledge. In addition, the brief nature of the intervention may have hindered sustained change. The study’s brevity may have limited its ability to build agency and foster self-efficacy among adolescents.

Self-efficacy, a key driver of behavior change (Bandura, 1978, 1982), requires extended intervention for lasting impact. Information that is sustained beyond the intervention period can help reinforce protective behaviors against HIV/AIDS (Bodde et al., 2012). Involving teachers, school clubs, and even caregivers in reinforcing information can enhance the long-term effectiveness of these interventions.

This study highlights the vital role that teachers can play in HIV/AIDS education. Schools are key for imparting HIV/AIDS knowledge and curbing the spread of the infection. They reach many children and adolescents and have skilled teachers who can teach this information. As observed in other contexts, teachers in our study demonstrated a keen interest in and active engagement with HIV education (Orji & Esimai, 2003; Renju et al., 2011). Involving teachers in program development, training, and ongoing support led to positive outcomes consistent with other successful teacher-led HIV prevention programs (Kuhn et al., 1994; Thomson et al., 1999).

Regarding the acceptability of the intervention, more than half of the participants lacked confidence in applying or sharing the acquired knowledge. Intellectual disability often impairs an individual’s ability to communicate effectively, making individuals hesitant to share learned information with others (Smith et al., 2020). The brevity of the intervention may have contributed to this lack of confidence, as building confidence requires time. This highlights the importance of considering a longer or more frequent intervention to enhance participants’ confidence. Additionally, difficulty comprehending study questions and question formats may have influenced the responses. The Likert-type questions used in the questionnaire may have been too abstract for the participants (Jen-Yi et al., 2015). Participants with ID are also more likely to select the last option from multiple-choice formats (Stancliffe, 2000). Future studies could use more straightforward questions or open-ended formats to address this limitation.

STUDY LIMITATIONS

This study has limitations to consider. Firstly, while this sample size is appropriate for meeting the objectives of a pilot study (Julious, 2005; Sim & Lewis, 2012), it did have a small sample size of 30 participants in each study group. Secondly, there was no randomization in this study. Randomization eliminates selection bias and balances the study groups with respect to known and unknown confounding variables. However, our two study groups had no significant difference in sociodemographic characteristics. Thirdly, the study was conducted in a school setting, so generalizability to nonschool settings, where many adolescents with ID may be, is uncertain. Finally, the effect on HIV-related behavior change remains to be seen, as the goal of health education programs is behavioral change for improved outcomes.

CONCLUSION

We evaluated the effect and acceptability of an HIV education intervention for adolescents with mild-to-moderate ID in an urban setting in Uganda. The study showed that the intervention improved HIV knowledge and attitudes for adolescents with mild-to-moderate intellectual disability. Over half of the participants also found the intervention acceptable. Since this pilot study has promising findings, more robust randomized control trials are needed to assess the efficacy of this intervention in more extensive settings.

Acknowledgments.

The authors would like to express appreciation to the teachers at Entebbe Welfare School for Special Needs and Noah’s Ark Children’s Center for supporting this project.

Funding statement.

Research reported in this publication was supported by the Fogarty International Center of the National Institutes of Health under Award Number D43TW011541. The content is solely the authors’ responsibility and does not necessarily represent the official views of the National Institutes of Health.

Footnotes

Conflict of interest. The authors have no competing interests to declare.

Ethics statement. This study was performed in line with the principles of the Declaration of Helsinki. This study was approved by the Mildmay Uganda Research Ethics Committee (Reference No. MUREC-2021-70) and the Uganda National Council of Science and Technology (Registration No. HS2159ES). The participants provided their written information, while their caregivers provided informed consent to participate in this study.

Contributor Information

Anita Arinda, Department of Psychiatry, College of Health Sciences, Makerere University, Kampala, Uganda..

Noeline Nakasujja, Department of Psychiatry, College of Health Sciences, Makerere University, Kampala, Uganda..

Mary M. McKay, Washington University in St. Louis, St. Louis, Missouri.

Fred M. Ssewamala, Washington University in St. Louis, St. Louis, Missouri.

James Mugisha, Department of Sociology and Social Administration, Faculty of Social Science, Kyambogo University, Kampala, Uganda..

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