My Internship

Summary

A major obstacle to adolescents living with HIV receiving effective and long-lasting care is the burden of trauma and stigma experienced by this group. In my internship site, I have been working under the supervision of Dr. Leslie Enane with support from Ms. Judith Toromo to study HIV care and outcomes for adolescents globally. I conducted literature review to identify some of the challenges that adolescents living with HIV face. Some predominant issues impacting care for adolescents include stigma, trauma, and discrimination among other factors. I have been exposed to a mixed-methods research approach that aims to study this, including formulating literature review and reviewing published studies, and organizing available evidence. I performed some qualitative data analysis, including coding transcripts from interviews that had been conducted with adolescents living with HIV, their caregivers, youth serving as peer mentors, and healthcare workers. This work helps to identify and study how trauma and stigma impact retention in care for adolescents living with HIV and the needed support for improved retention.

Project Goals

I really wanted to have the opportunity to work at this internship site because of the fact that the assigned project was related to disease prevention on a global level. In the future, a major goal of mine is to have the opportunity to also study topics like this and have the opportunity to assist in the treatment regarding this as well. Some of the things that I had hoped to accomplish included improving my communication skills, gaining more confidence in explaining my work, and being a more effective and helpful team member. I am passionate about disease prevention and eradication, therefore through this internship I hoped to learn more about the process of studying this at a global level, and equip myself with the needed skills for future work in this area. I am glad that the internship allowed me to achieve these goals and make new ones. My supervisors encouraged me to do my best and ask questions when I had them, fostering an environment where I looked forward to work and keep learning more.

Background

The purpose of the study I worked on during my internship at the site was to study HIV care and outcomes among adolescents globally. The internship begun with performing a literature review to identify prevalence and factors related to trauma or Post Traumatic Stress Disorder (PTSD) among adolescents and young people living with HIV as outlined in previous studies.

Prevalence of trauma or PTSD among people living with HIV:

Prevalence of trauma (adolescents, adults)

Some studies have examined the prevalence of trauma among adolescents. Adolescents with HIV have particularly prominent experiences of trauma (Enane, 2020) These experiences of trauma contributed to patient disengagement from care, thus not receiving the treatment that they needed. A study in Soweto, South Africa found that the prevalence of traumatic exposures was higher among adolescents that went through traumatic events, even when they had to receive treatment. The study identified that nearly all of the adolescents in the study had experienced some form of trauma. This also varied by social and gender statuses, both of which showed different results based on the level of HIV risk. It also showed the syndemic of trauma amongst adolescents living with HIV, and how this needed to be addressed by establishing HIV prevention techniques, and also by utilizing trauma-informed care. (Closson, 2016)

Another study examined the level of occurrence of trauma, and how different interventions could be used on a variety of levels to address this (Sales, 2016). This study identified how a variety of factors could impact the level at which individuals receive care, and how likely they are to receive it.

Prevalence of PTSD

Some studies have examined the effect that having HIV has had on PTSD. A study in South Africa found that the trauma of being diagnosed with HIV, and then living with it, is a significant health burden that could lead to PTSD (Young, 2011). An adolescent having to know that they have HIV has a lot of traumatic effects. This study identified the effects of PTSD with the trauma of being diagnosed with and then having to live with HIV, which takes a significant burden on mental health. The study also specifically identified the relationships between the stigma and trauma of having HIV, and how that played a role into PTSD occurring.

Another study found that the prevalence of PTSD increased with stigma. Because of the stigma that was associated with having HIV, the chances of a PLWH having PTSD increased. (Gonzalez A, 2016) Because of the stigma that surrounds this as well, the prevalence of this occurring has negative consequences on adolescents living with HIV as well. This study measured how the quality of life was affected from the prevalence of stigma and PTSD, and how this took a significant toll on mental health as well. This study researched the factors that could’ve played a role in the development and severity of PTSD, which showed a higher correlation with the stigma behind it as well.

Impacts of trauma on mental health or wellbeing

Some studies examined the long-term effects that trauma had on mental health and wellbeing. A study found that trauma among PLWH has a major effect on treatment, hence why trauma-informed care would be more beneficial. (Brezing C, 2015) This particular study examined the effects of incorporating trauma-based care into the treatment of people living with HIV. Although there were some moments in where it was difficult, this helped more in making sure that it would be more likely for them to continue receiving treatment. The study also mentioned how factors such as high transmission of the virus, the stigma of having HIV and receiving treatment, discontinuation of treatment, less access to health care, and more vulnerable populations all having significant tolls on patients, thus negatively impacting their mental health and wellbeing (and further showing the need for access to more trauma-informed care).

Impacts of trauma on HIV incidence (acquiring HIV)

Some studies also examined how acquiring HIV also induced trauma in PLWH. A study in South Africa found that finding out that a PLWH has HIV is a traumatic experience that’s of other traumatic experiences within it itself. (Myers B, 2018). This study mentioned the aspect of how finding out that someone had HIV was traumatic in itself. Being told about having it really impacts mental health and is traumatic as well. This particular study also examined the ways that trauma could be decreased upon patients finding out about having HIV, such as by having socials support, having therapy that fits their needs, and practicing self-care.

Impacts of trauma on HIV care outcomes (ART adherence, retention in care, etc.)

Some studies examined how the effect of trauma had an impact on what type of treatment someone living with HIV had. A study in western Kenya found that the stigma and trauma of having HIV affected how adolescents were treated, especially with the way in which they find out and the continuation of treatment. (Vreeman RC, 2015) This particular study mentioned how the impact of trauma and even stigma of someone having HIV could make it less likely for them to continue receiving treatment. This study showed that children who were given explanation about what was happening were more likely to continue receiving treatment, as they would have someone like a parent who would help them in making sure that they receive the adequate treatment that they need. The study also found that treatment earlier on would be better overall for the patient as well.

Another study in Eastern Africa found that stigma across communities was a barrier to HIV testing and treatment, which could hinder care and treatment. (Akatukwasa C, 2021). Dimensions of HIV-related stigma in rural communities in Kenya and Uganda at the start of a large HIV ‘test and treat’ trial. This study documented cases across eight communities in which there seemed to be some trend that trauma and stigma could hinder access to care. It found this through trial and testing campaigns, which were being used for treatment and to stop spread .

Another study in Nigeria found that the psychological factors of stigma had a relationship to healthcare among adolescents receiving antiretroviral therapy (Amos Abimbola Oladunnia). This study found that the stigma of receiving care and even getting tested made it possible that care would not be continuous, and individuals would stop receiving treatment.

Another study found that around the world globally, factors such as trauma, stigma, PTSD, and lack of trust in the healthcare system and government could hinder access to care (Whetten, 2008). This study examined the factors that made it less likely for individuals to be able to receive care, and how this could be addressed on a global level to ensure that we make sure that there aren’t any barriers to adequate treatment and that everyone does have access to adequate care.

Relationship of trauma and stigma

Some studies examined how there’s a relationship between the trauma that people living with HIV have, and how that’s related to the sigma that having HIV and receiving treatment for it has. A study found that in the US and also globally, PTSD along with other factors such as distrust of the government and experiences of stigma can affect a person who has HIV and how likely they are to receive treatment. (Whetten K, 2008) The study mentioned how factors from personal experiences of stigma and trauma to government mistrust could impact how likely someone who needs HIV care would receive it, which could impact their treatment. It correlates trauma and stigma specifically, as they could impact the likelihood of patients continuing to receive treatment as well.

Another study in Kenya examined how the relationship between stigma and trauma impacted the chances of women receiving antiretroviral therapy, and what other factors could affect this as well. (Onono, 2020). This study found that it was possible that because of stigma, trauma, and violence, women would not receive the care that they needed which made it potentially harder for them to be able to recover more.

Trauma-informed care or resilience-based approaches or other mental health interventions

Some studies examined how trauma-informed care and resiliency-based care both were beneficial in providing assistance to PLWH that went beyond just the treatment. A study found that child-centered care for adolescents helped in creating an environment that made it more likely for them to continue receiving treatment. (Mutambo C, 2019) This is important because being aware to what children need and to truly be able to understand what they’re going through is crucial for their treatment. The study showed that child-centered care did increase likelihood of receiving treatment, and how it’s really important that that is taken into consideration.

Another study in Eastern and Southern Africa found that finding ways to socially protect adolescents with HIV and providing them with assistance helped with protection and more effective treatment for people with HIV. (Toska E, 2016). This study mentioned ways in which learning about prevention and treatment could help people learn about how to avoid having HIV. The study also mentioned specifically how having social protection programs that took age, gender, stigma, cultural norms, and trauma into consideration was important in evaluating how to care for and treat people living with HIV.

What I Did

At my internship site, I was able to work on a qualitative sub-analysis to explore how trauma and stigma contribute to poor Care engagement among adolescents living with HIV. I first began with being introduced to this work, and how the qualitative data was collected. My first task was to perform a literature review and write a background outline of other research on the topic in order to get a better idea of what is being studied. As I undertook the literature review of articles that had been identified on an excel file and more articles on PubMed I got to familiarize myself more with the process, and understand how to summarize finding from the articles. With a more understanding of the background of the research, I was able to create a codebook with codes and definitions to be used for our qualitative sub-analysis. I then used a program called Dedoose to apply codes to the transcripts under the supervision of my supervisors. This process helped organize the data into broad categories/ themes for further reading, analysis, and generating summaries. Once the coding stage was done, I was able to go through the excerpts from different codes and create summaries along the outlined areas of interest to inform how trauma and stigma contribute to disengagement from HIV care.

As a result of what I did I was able to have a small role in a big project. From the codes and excerpts studied and analyzed and added to the outline, my supervisors compose the main job of formulating an article that studies the effect of stigma and trauma on the care and treatment of adolescents living with HIV. We went through the excerpts from different codes and provided summaries from these based on an outline that we had created with the team adopting from the SAMHSA framework for this analysis.

What I Learned

Adolescents living with HIV experience different forms of trauma such as being orphaned, neglect, violence at home or community, witnessing illness or death of other peers. For others, being disclosed to their status was a traumatic event. These experiences of trauma was worsened by the stigma regarding HIV infection whether it was enacted, internalized, or anticipated stigma. They played a role in contributing to the re-traumatization at home environment, or school and clinic environments. Some available support included peer support, family support, and support from clinic providers. Despite this, some adolescents lacked trust in these forms of support or felt unsafe relying on them. Implementation of trauma-informed care approaches is needed to fully engage the adolescents living with HIV in care and meet their care needs.

Learning and Skills

As a result of the work done in our project, the goal is to improve care for adolescents living with HIV globally. With the many factors that were present in what could have potentially hindered care, it is important to be able to analyze the best and most efficient methods that can be used to maximize retention of care.

I hope that this experience allow for me to improve the skills that I need for the future, and to also use my experiences to become a more helpful team member. I believe that my experiences having collaborated with others to complete tasks will allow for me to work with others more efficiently. I also hope that my willingness to learn from others and follow directions will allow for me to be able to learn and improve skills that I would need for the future.

I hope to be able to gain more research skills, as that's important for me to be able to know as well going forward. I believe that doing this, alongside broadening my perspective of different fields that are interconnected, would allow for me to be able to hopefully succeed in this internship and in other future prospects as well.

I feel like my internship site has allowed for me to use many of the skills from the list. The skills that I'm using so far from the list that I'm feeling more confident in are collaboration, teamwork, analyzing, independence, confronting challenges, constructive criticism, attendance, punctuality, maintaining internship goals. I am grateful to have an internship site where a lot of these skills are consistently encouraged, and where I'm also able to further these skills and get better at them. I would like to work more on communication and synthesis. I would like to be able to use these skills to be able to be more knowledgable in what I'm researching entails. and being able to explain a lot of it more going onward.

I think my internship has related a lot with what I'm learning in class through the the material I'm presented with. Being able to do background reviews and outlines has related to what I learn in my literature, psychology, and sociology courses. I'm also able to use what I learn to think more critically regarding the courses I'm taking now and the courses that I hope to be able to take in the future.

I am deeply grateful for all of the opportunities my internship site has provided for me.

My contributions impacted the larger goals at my site in that I was able to take the large amounts of data and help divide them into smaller sections. With the large amount of data that is required to be read and analyzed, it is imperative that it is studied. From the excerpts I have gone through, I codified them into subsections that are important in our field of study. It is difficult for just one people to do, and so it’s important that a lot of people look into it for the most effective and qualitative analysis. Using the data that is coded, my supervisors then compose a paper that details the study.

This year I was able to improve my communication and collaboration skills. I think that I feel more confident in terms of discussing my work and other topics at my internship site. I also feel like I am able to collaborate with others in a more effective and beneficial manner that is helpful for others. I appreciate all that my supervisors did by helping me with this through working with me through my goals, and also by giving advice on other ones. In the future, I hope to work on these skills even more and identify more goals that I would like to work on. I think there’s always work that can be done to ensure that we’re striving towards doing better as we’re constantly learning.

The Workplace

I feel like I have already learnt a lot from my supervisors that I would like to have as a professional. I have learned more about being able to collaborate more as a team, being able to analyze the information we are given, and how to approach problems and challenges that may be encountered. As a professional I would like to continue to sharpen these skills to be able to use them in the future and build on more skills as well.

My internship experience has been different from when I have started through how I feel about it and what to expect. I feel like I am more comfortable completing a lot of the work now compared to when I first started. I also feel like I am able to explain the projects better and try to be more helpful as well.

I would describe my workplace culture as being relaxed but professional. There is a lot of collaboration and support that I receive from my supervisors, and I feel like I can ask them anything about the internship or even for a career. I’m able to ask about anything and not feel bad about it with how my supervisors help. In the past I think my places of work weren’t as welcoming or encouraging as my internship site, and I feel a major difference here. I feel like this is an ideal workplace culture that I would like to have in the future as well based on how I believe it’s had a positive impact.

I think my attitude regarding my work has changed significantly since I started working at my internship site. At first, I tended to be more reserved and kept things to myself and did my work. However, I now feel more comfortable collaborating and working with my supervisors and working with others. I always liked working with my coworkers, but now I had a shift regarding supervisors and how they can actually be helpful and supportive rather than feeling like they’re not. I would like to continue growing by finding and maintaining ways to be more helpful as a team member, and also by offering ways to extend my support when necessary.

Successes and Challenges

Some challenging parts of my experience have been time management and being able to be more independent. I am grateful that my supervisor allows for me to work on the material on a more flexible schedule, and so sometimes I was completing the work at more random times. Thankfully, I have adapted to working at a more fixed time while still being able to complete more work as well. I am also given a lot more freedom compared to other jobs that I've previously held where I felt like I was constantly being monitored, and so that's something else that I've experienced differently.

Some of the more successful parts of my experience have been being more confident in my work, and also being able to gain more knowledge regarding the material. I'm grateful that I was able to gain a lot of experience from my supervisor so that I was able to feel more confident in what I was doing. I'm also grateful that I was able to gain more knowledge regarding the material of our work, as it's really important for really anyone to be able to understand in order to allow others to live to their best potential.

Acknowledgements

We acknowledge and thank the adolescents, caregivers, healthcare workers, and peer mentors who participated in this research and who generously provided their essential perspectives and insights.

Research reported here was supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number K23HD095778. Dr. Enane’s time was supported in part by the East Africa International Epidemiology Databases to Evaluate AIDS (IeDEA) regional consortium, which is funded by multiple institutes of the National Institutes of Health, through award U01AI069911. The content of this presentation is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

I also could not have done this work without the gracious help of my supervisors Dr. Enane and Ms. Toromo, who were always willing to help and teach me along the way.

Works Cited

Enane JIAS 2021.

Enane AIDS Care 2020.

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Brezing C, Ferrara M, Freudenreich. O The syndemic illness of HIV and trauma: implications for a trauma-informed model of care. Psychosomatics. 2015 Mar-Apr.

Akatukwasa C, GetahunM, El AyadiAM,NamanyaJ, MaeriI, ItiakoritH, et al. (2021)

Vreeman RC, Scanlon ML, Marete I, Mwangi A, Inui TS, McAteer CI, Nyandiko WM. Characteristics of HIV-infected adolescents enrolled in a disclosure intervention trial in western Kenya. AIDS Care. 2015.

Whetten K, Reif S, Whetten R, Murphy-McMillan LK. Trauma, mental health, distrust, and stigma among HIV-positive persons: implications for effective care. Psychosom Med. 2008.

Mutambo C, Shumba K, Hlongwana KW. Child-Centred Care in HIV Service Provision for Children in Resource Constrained Settings: A Narrative Review of Literature. AIDS Res Treat. 2019 Nov 26.

Toska E, Gittings L, Hodes R, Cluver LD, Govender K, Chademana KE, Gutiérrez VE. Resourcing resilience: social protection for HIV prevention amongst children and adolescents in Eastern and Southern Africa. Afr J AIDS Res. 2016 Jul

Trauma-Informed HIV Prevention and Treatment. Sales, Swartzendruber, Phillips. Curr HIV/AIDS Rep (2016) 13:374–382DOI 10.1007/s11904-016-0337-5

Gonzalez A, Locicero B, Mahaffey B, Fleming C, Harris J, Vujanovic AA. Internalized HIV Stigma and Mindfulness: Associations With PTSD Symptom Severity in Trauma-Exposed Adults With HIV/AIDS. Behav Modif. 2016 Jan