Report on the impact of COVID_19 on the LGBTIQ people especially those living with HIV in grassroots western Uganda

Report on the impact of COVID_19 on the LGBTIQ people especially those living with HIV in grassroots western Uganda                                                                                                   
The lesbians, gay bisexual, transgender and intersex persons/communities (LGBTIQ) have been severely affected by the COVID-19 pandemic in rural Uganda. “My main worry is about survival and being able to support and cover the essential needs of the LGBTIQ communities when job security is less and businesses are closing,” said Real Raymond, a gay man and activist from rural western Uganda, “Many LGBTIQ people are unable to pay rent and utility bills, unable to do sex work, conduct their usual businesses. Some even lost their jobs,” he said.

Real Raymond’s testimonies are featured in the COVID-19 Effect Series, the articles were published in Thomson Reuters foundation news https://news.trust.org/item/20210106121114-roav0 and Gay city News https://www.gaycitynews.com/the-plagues-covid-19-visit-on-lgbtq-east-africans/

During the COVID-19 outbreak, Mbarara Rise Foundation implemented more flexible working schedules to ensure that safety and security, human rights violations, PrEP, HIV testing and other health care services were not disrupted.

“The human-interest stories included in the COVID-19 Effect Series raise the visibility of human rights violations and the challenges faced by LGBTI people and people living with HIV in accessing health services. The series amplifies community voices that have often been unheard in COVID-19 narratives

Methods

This rapid assessment was conducted by our MRF staff in Mbarara and Ntugamo districts that includes racially/ethnically diverse sexual minorities and those living with HIV; and clinics that serve them. This partnership has established a history exploring and intervening on the health-related needs and priorities of vulnerable communities.

We have used text messaging (including through applications or “apps” such as WhatsApp), and messaging through to improve linkage to and retention in health care services provision among the LGBTIQ. The intervention is targeted to racially/ethnically sexual minorities.

We collected qualitative data from participants who had completely hit hard by the COVID crisis and those who were being enrolled on ARVs for 9 months and have been taking their medication, so that improves HIV care engagement among sexual minorities living with HIV by reducing missed HIV care appointments and increasing viral suppression.   currently being conducted in partnership with the Mbarara Regional Referral clinic (STI clinic, MARPI peer leader) in Mbarara city to serve low-income LGBTIQ populations who are uninsured or underinsured. MRF provides comprehensive integrated services for LGBTIQ populations, including HIV primary medical care, case management, bridge counseling, behavioral health care, community outreach nursing, human rights awareness, economic empowerment and research and documentation.

Of the participants, we randomly selected and contacted 35 of them to complete an interviewer-administered semi-structured individual interview. most questions in the interview guide were open-ended to allow participants to describe their experiences, perceptions, and attitudes. Staff at MRF conducted the interviews in Runyankole (local language from western Uganda) via telephone between Jan 23 and March 23, 2020.

Knowledge of Transmission and Prevention of COVID-19 Is High

Participants knew a great deal about COVID-19 and its transmission. They were aware of recommended precautions to prevent infection, including wearing a face covering mask, social distancing, and handwashing. Many were aware of the government stay-at-home order that was in effect at the start of the pandemic and reported adhering to the orders. For example, a participant reported,

It’s important to take precautions and wear face mask, wash hands like the ministry of health advices.  (Participant Az, 24 years old- from Ntugamo district).  

COVID-19 is Perceived as Serious, and Participants Perceive Themselves to be Susceptible

Participants reported that COVID-19 was serious and that those with compromised immune systems were especially at risk. They were worried about their own increased risks as sexual minorities and those living with HIV were scared about their health and noted that hearing about others who had similar characteristics to them being seriously affected also increased their concerns. A participant stated,

Participants also reported worrying about the well-being of friends and family members, particularly those who were older or had other risk factors for developing serious illness from COVID-19. A participant noted,

“Well, I am very concerned about my whole family and my circle because it can affect not only me, but my entire family as well.” (PAQ 25 years old from Mbarara).

Sources and Perceptions of Trustworthiness

Information About COVID-19 Is Obtained from Social Media, the Internet, Television, the Workplace, and Word-of-Mouth

Social media (e.g., Facebook), the internet, and television (e.g., English- Ruganda and runyankole-language national and local news) were noted as places that participants obtained information about COVID-19. Participants also reported that they received information from their workplaces, as guidelines and regulations changed and thus required changes to how work was performed. For example, participants who worked in restaurants noted that they learned about transmission, prevention, and the current state of disease burden from restaurant owners and managers business closed. In addition, participants described friends and family as sources of information about COVID-19. A participant reported,

“I get info on TV, and I did some on the internet, and heard some through word-of-mouth, like during a meeting at work” (PAY, 28 years old).

Providers Are a Highly Trusted Source of COVID-19 Information

Healthcare providers, including HIV providers, were identified in particular as providing timely and trustworthy information about COVID-19. A participant stated, “I trust some doctors, especially because I believe they have the best interest at heart and they are the people on the frontline. They are telling us what they understand and what they are seeing from their patients.” (PAR, 23 years old).

Impact of COVID-19 on Behaviors

Participants are Taking Action to Reduce Their Risks

Participants reported staying home, maintaining social distancing, and cleaning with disinfectants and sanitizers to prevent contracting COVID-19. A participant commented, “I have not been out often.” (PAW 22 years old).

COVID-19 is Having a Mixed Impact on Health Behaviors

Participants noted that worries and fears related to COVID-19 and behavioral changes that they are making to stay safe are affecting them in both negative and positive ways. A participant noted that he is sleeping less because he is worried about his health, the health and well-being of his friends and family, and the long-term impact of the pandemic locally and globally, reporting, “My sleeping schedule has been changing a lot. It is hard to sleep 8 h as I used to.” Another participant commented, “I am working out less to avoid public settings.” (P9, 23 years old). 

However, some participants reported positive changes they had made in their health behaviors as a result of staying home and other adaptations related to COVID-19 prevention. A participant noted, “I stopped drinking alcohol because I figure that I have bad habits when I am at home alone; because in the first week or so of the stay home order for the coronavirus, I was drinking a lot and that kind of hurt me.” (P11, 25 years old). Further, another participant shared,

“I actually started meditating in the mornings so I can have a good set of mind about all this. And I have been spending more time grazing cattle more than I did before.” (P15, 27 year old).

Use of Social Media for Socialization and Support has Increased

Before the initiation of the COVID-19 pandemic, participants were already communicating frequently through social media platforms such as Facebook, texting. After the pandemic began, however, participants reported increased use of these types of social media platforms. A participant noted,

“I used Facebook much more because it was and is the only way we have to communicate with other people.” (PAS, 21 years old). Use of other technology for communication, such as video calls, also increased, as another participant added,

“I didn’t see my friends and family much, and if I do, we try to call each other on Facebook to see them on video. We talk on the phone to catch up. That is the only way we do it.” (P10, 23 years old).

Impact of COVID-19 on Health

Feelings of Isolation, Hopelessness, and Worry are Common

Participants reported that their mental health was profoundly affected by COVID-19 and the necessary precautions required to reduce risks of exposure. A participant noted, “The changes make me feel hopeless and sad. I am just realizing that everyone wants things to go back to normal, but I think a lot of things will change, and lots of polices that are in place will change, like in restaurants and bars. It will never be normal.” (P7, 23 years old) Another participant reported, “I do feel alone, and it kind of reminds me of when I learned that I had HIV. (P15, 27 years old).

Accessing Medical Care is More Difficult Participants reported that accessing medical care had become more difficult in the context of COVID-19. As a participant reported,

“It [COVID-19] just makes things harder. I was not able to go to the health facility to refill my ARVs because the government did not do anything that would favor me easily access services. (P6, 21 years old).

Participants had also had challenges with missed appointments. For example, a participant shared,

“For the follow-up appointment I had to see the doctor but didn’t make it. There were no transport means at a time and that made things more challenging, especially because the whole transport means we use wasn’t really working. Things are more complicated now.” (P14, 27 years old).

Medication Adherence is Difficult due to the Interruption of Routines

Overall, participants reported obtaining HIV medications as needed since the initiation of the pandemic. However, they did report that adhering to medication regimens had become more difficult. A participant shared, “It’s been easy to get the medications because the peers have been delivering them to me, but it has been challenging to take them as I should because I had a routine before. I used to take my medication every day at work, but since I am working from home, I can’t follow the same routine as I fear my roommates see me taking them. (P15, 27 years old).

Impact of COVID-19 on Social Determinants of Health

Educational Opportunities and Jobs were Lost

Participants reported multiple ways in which COVID-19 affected them through social determinants of health. First, some participants noted that they had lost educational opportunities. A participant reported,

“I was supposed to have an internship at Coca-Cola Mbarara last year and make money. It’s been very stressful, and I am not good at it.” (P6, 21-year-old).  

Another participant described losing his job,

“I have been laid off from work till further notice, so I have not been working. So, it is affecting me that way.” (P10, 28 years old).

Participants felt the financial impact of job losses on other social determinants, such as housing stability. A participant shared,

“I am already having difficulty; I don’t know what I am going to do this month to pay my rent.” (P5, 25 years old).

In-Person Social Support Has Been Sacrificed

Participants reported a reduction in in-person social support. A participant noted, “It is affecting my interactions with other people; I did not see my family and friends anymore like I used to” (P9, 23 years old). Another remarked on his loneliness saying, “There are times when I think, if I had a boyfriend or a roommate, someone that at least can stay in quarantine with me, that will be better. (P10, 28 years old).

General COVID-19-Related Concerns

The Economy and its Impact on Self, Families, and Friends are Concerns

Participants also reported worrying about the long-term implications of the pandemic for local, regional, and international economies. As a participant shared,

My biggest concern is [that] the way that it is happening here will have a devastating impact on the economy, just because it’s been so bad. I have such a big fear that even our health system is even weaker and wondered whether COVID will be handled. In addition. (P7, 23 years old). Another participant added,  

We had acquired economic empowerment skills i.e., cake baking and we were slowly making money to sustain us, but since all business were closed, I personally used my saving and eat up my capital during the pandemic when I didn’t have what to eat. I wonder if I will ever have capital to restart the business after the pandemic. (P1, 23 years old)

Discussion

LGBTIQ and most those living with HIV may be at increased risk for severe COVID-19-related illness. In this qualitative study of a sample of sexual minorities and those living with HIV, we identified 17 themes that we grouped into six domains. Several findings deserve further attention. First, participants had high levels of knowledge about the transmission and prevention of COVID-19. While participants reported some confusion about conflicting and emerging information related to COVID-19, they utilized multiple and credible sources to obtain information about the pandemic and risk reduction. many LGBTIQ may need support in identifying and accessing correct and updated information to manage their health in light of the dissemination of conflicting information regarding COVID-19.

Further, HIV healthcare providers were identified as highly trusted sources of information about COVID-19. Providers must make time to assess COVID-19-related information needs, correct misinformation, and support risk reduction among their patients living with HIV.

It is important to note that this study was conducted in Jan2021, some participants reported having dire healthcare visits canceled or postponed, and those participants who had obtained care reported not being satisfied with.

Moreover, while COVID-19 did not seem to affect access to HIV medications in this study, the impact of the pandemic affected adherence to medical regimens. Interventions may be needed to help LGBTIQ living with HIV strategize how and when they can take their HIV medications given interruption to their routines due to COVID-19 (e.g., changes in job and life schedules).

Those living with HIV may be particularly affected by COVID-19 because they may already be experiencing stigma and isolation related to living with HIV. Participants noted that living through the COVID-19 pandemic felt like when they first learned of their HIV status, with similar feelings of loneliness and having no one to turn to. They reported limiting their interactions with others to reduce their risk of exposure; however, they subsequently reported feeling alone, isolated, and in need of social support. These feelings can lead to hopelessness and depression and negatively affect medication adherence and health outcomes. To address these challenges, interventions may be needed to bolster social support among LGBTIQ Living with HIV. Given that participants reported using social media at increasing levels since the initiation of the pandemic, approaches that leverage these platforms.

Participants also noted that the COVID-19 pandemic resulted in missed educational opportunities, job loss, and financial hardship. Moreover, their worries were broad; they expressed concerns about themselves as well as others who they care about and the impact of the pandemic on the global economy. Interventions are needed to address the economic hard ships, varied and pervasive harms, health-related and otherwise, caused by the COVID-19 pandemic on LGBTIQ people living with HIV, and also the underlying social determinants of health that can make them more vulnerable to these harms.

Limitations

It is important to note that participants in this study do not reflect the entire population of LGBTIQ people in Uganda. Participants represented a unique sample and may have benefited from their participation in Mbarara Rise Foundation activities. Further studies are needed with participants that have not participated in such an intervention. We also note the small sample size; however, we purposefully recruited a racial/ethnically diverse sample and terminated data collection when we reached saturation. We also note that we wanted to better understand the breadth of experiences of LGBTIQ and mostly those Living with HIV.

Conclusions

This study tapped into a small group of racially/ethnically diverse lgbtiq living with HIV. It lays the foundation for future research exploring both the immediate and long-term impacts of the COVID-19 pandemic among lgbtiq living with HIV. Additionally, there is profound need for novel interventions to address the impact of the COVID-19 pandemic on social isolation, economic stability, access to health care, and other social determinants of health for racially/ethnically diverse lgbtiq living with HIV.

These data were collected within the first 3 months of 2021 and provide important insights about the impact of this rapidly emerging public health issue. Since then, new developments are occurring.  

Acknowledgements

This research was made possible in part by staff of Mbarara Rise Foundation.
Kamugasha Flavour.
Tusiime Osbert.
Janet Mutesi.
Nasubuga Mariam.      
Real Raymond.

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