Viv Byen (Live Well): A Qualitative Pilot Study to Assess Telehealth Use for HIV Care Among People of Haitian Descent

Abstract

To the Editor:

Miami, Florida is one of six cities with the highest annual rate of HIV diagnoses in the United States and people of Haitian descent have been disproportionately affected.¹ In Miami, Haitian-born people have an incidence of 5.5% of HIV and 9% of AIDS diagnoses.² In addition to being disproportionately affected, people of Haitian descent also face disparities in HIV care.^3,4 People of Haitian descent with HIV have lower CD4 T cell counts, worse outcomes, and higher HIV-related deaths than people living with HIV (PLWH) from other racial and ethnic groups.^3,4 To address barriers we explored ways to increase health care access for our clinic patients. We found that telehealth could help to address barriers; however, its use for HIV care had not yet been explored in this population.⁵

In this study, we use a qualitative approach to assess the acceptability of telehealth HIV care among Haitian PLWH in Miami, Florida. We conducted semistructured interviews with adults of Haitian descent (Haitian or Haitian American) living with HIV and receiving care at the University of Miami/Jackson Memorial Hospital Adult HIV clinic.

The study received approval by the University of Miami Institutional Review Board.

We enrolled and consented participants between March 8 and August 30, 2021.

The research staff was bilingual in English and Haitian Creole. To be eligible, participants had to meet the following inclusion criteria: (1) self-identified as Haitian or Haitian American; (2) spoke English or Haitian Creole, (3) age ≥18years, (4) living with HIV, and (5) received routine care (at least two visits in the 2 years before enrollment) at the clinic. After verbal informed consent, participants completed a sociodemographic survey and a semistructured (30–60 min) interview in person or over the telephone by experienced research staff.⁶ We audiotaped all interviews, and an independent firm transcribed and translated (as needed) the audio files to text in English.

The sociodemographic survey was verbally administered to study participants, and their responses were entered into the university's Research Electronic Data Capture (REDCap^®, a web-based secure application that allows for data storage and descriptive statistics) by the study staff.⁷ The survey assessed age, ethnicity, date of birth, sex assigned at birth, education level, religion, housing, income, work/school status, and country of birth.

The interview questions are illustrated in Table 1.

Table 1.

Semistructured Interview Guide to Assess the Use of Telehealth for HIV Care Among People of Haitian Descent

Themes	Questions	Quotes
Barriers to engagement in HIV care	1. Do you think there are barriers getting care for HIV among Haitians/Haitian Americans? 2. If so, what kind? Why? 3. Are you having any barriers to care? 4. Do you have any suggestions for overcoming these barriers? 5. Are you able to see your HIV provider? 6. Are you able to see your HIV provider when you are sick? If not, why? 7. What are some of the ways that Haitians/Haitian Americans with HIV are treated by others when they want to see the doctor for their HIV? What suggestions do you have for making this better? 8. Have you ever been mistreated when trying to get care for HIV? Can you tell me more? How so?	“I think if we were provided the insurance…but when we are provided with insurance, you have to deal with prescriptions and lots of paperwork.” (Female, HIV not detectable) “Yes, sometimes they are afraid that people would find out that they are sick.” (Female, HIV detectable) “Some of the medication cost $8, some are $16, some are $15 some are $4, it depends on the kind of medication. You understand. In the past I never had to pay for my medications. Now if I have to pick up my medication, I have to pay about $30, $40.” (Female, HIV not detectable)
Perceived benefit of interacting with case managers/health care providers through telehealth	1. Do you think that Haitians/Haitian Americans would want to interact with case managers using telehealth? Why or why not? 2. Would you want to interact with case managers using telehealth? Why or why not? 3. Do you think that Haitians/Haitian Americans would want to interact with their health care providers using telehealth? Why or why not? 4. Would you want to interact with your health care provider using telehealth? Why or why not? 5. Have you used telehealth to interact with your case manager? If so, what did you think of it? 6. Have you used telehealth to interact with your health care provider? If so, what did you think of it? 7. Do you think that telehealth could replace in-person visits? Why? 8. Do you think that telehealth could be in addition to in-person visits? Why?	“Yes, once in a while, if it's not something serious, you can speak on video.” (Female, HIV detectable) “No, it won't (replace regular care) but would be good to have as an alternative.” (Male, HIV not detectable) “Yes, this is possible, because some people sometimes don't have a car to go to the clinic, or they're working, they are busy. Sometimes the person does not have transportation means or depending on where the person is, he/she does not want people to know their business, it's preferable that they do telehealth in a sense.” (Female, HIV detectable)
Recommendations for structuring telehealth	1. What should we consider when choosing a staff member to help Haitian/Haitian Americans with HIV use telehealth and to get care for HIV? 2. What are the characteristics of the ideal staff member for this? Should this person be Haitian/Haitian American? Should this person be Black? Speak Haitian Creole? 3. What types of training or experience should this staff member have? 4. If there were a telehealth program for Haitians/Haitian Americans with HIV to access care, how do you think it should be set up? 5. What are some things that would be essential for a telehealth program for Haitians/Haitian Americans? 6. What days of the week and times of the day would work best for Haitians/Haitian Americans?	“If you are starting a program and you are looking for staff you will need someone who knows the technology, someone who knows about computers and phones to be able to help those who don't know.” (Female, HIV detectable) “The person needs to know some stuff about Haitians.” (Male, HIV not detectable) “They could do a class for young people too. They could do something to keep our minds up to date with technology. They could do that too for us.” (Female, HIV detectable)
Access/comfort with technology	1. Do you think most Haitian/Haitian Americans have access to phones with cameras and computers? 2. Do you think Haitian/Haitian Americans are good at using technology such as phone or computer applications? 3. Do you have access to a phone with a camera and or computer? 4. Are you good at using technology such as phone or computer applications? 5. Do you think Haitian/Haitian Americans would be open to learning more about using technology?	“I would say yes, in Haiti everyone has a phone. Everyone has an Android phone, everyone has a smart phone.” (Male, HIV not detectable) “We can't generalize it because we know we have a generation that does not have much knowledge about technology. The new generation, yes, but we know we have a generation that does not know much about technology. The new generation, yes, but those who are older such as my father.” (Male, HIV not detectable)
Medication adherence, barriers, and facilitators of long-term adherence and successful strategies used	1. Are you always able to take your HIV medications? 2. What are some of the things that make it easier for you to take your HIV medications as you should? 3. What are some of the things that make it harder for you to take your HIV medications as you should? 4. What things have you done/changes have you made to help you take your HIV medications as you should? What would you need to help make this better?	“No…just.…every night before I go to sleep, I have a routine…I take my medications.” (Male, HIV detectable) “I think about I can live a long life by being with other people that went through it for 25 years 30 years 40 years.”(Female HIV not detectable) “Some people, as soon as they gain weight they say “I don't need the medication anymore.” They put the medication aside.” (Female, HIV detectable) “Some say the medication makes them throw up.” (Male, HIV detectable) “Sometimes it's hard to keep up with taking your medication. Sometimes I forget to take my medication.” (Female, HIV not detectable)

A codebook was developed by the study team. The team coded six interviews independently, noted common themes, and together decided on the themes to include in the codebook. This codebook was then used to create codes in NVivo^®, a qualitative data analysis program.⁸ A subsample of three transcripts were then coded by the principal investigator and two study team members. There was consistency among the coders with Kappas ≥0.70.

Fourteen people of Haitian descent with HIV were enrolled into the study, and their sociodemographic information is presented in Table 2. Our sample consisted of 8 females and 6 males, 12 of whom were Haitian-born. The mean age was 53 years and 86% had attended secondary school. Eight participants indicated that they were working full or part time, but only two were receiving an annual salary of >$50,000.

Table 2.

Sociodemographic Profile of Study Participants

Sample characteristics	n (%)
Biological sex
Female	8 (57.1)
Male	6 (42.9)
Education level
8th grade or below	2 (14.3)
Some high school	6 (42.9)
High school graduate/GED	5 (35.7)
Some college	1 (7.1)
Religious affiliation
Baptist	5 (35.7)
Catholic	5 (35.7)
Protestant	4 (28.6)
Place of birth
United States	2 (14.3)
Haiti	12 (85.7)
Age (mean, range)
	53 (31–66)
Housing
Renting home/apartment	11 (78.6)
Living in home/apartment owned by you or other household member	2 (14.3)
Living in a friend or relative's home/apartment	1 (7.1)
Income
<$5,000	2 (14.3)
$5,000–$11,999	2 (14.3)
$12,000–$15,999	2 (14.3)
$16,000–$24,999	4 (28.6)
$25,000–$34,999	1 (7.1)
$50,000 and greater	2 (14.3)
Amount unknown	1 (7.1)
Employment status
Full-time work	3 (21.4)
Part-time work	5 (35.7)
Neither working nor in school	3 (21.4)
On disability	3 (21.4)
Preferred language
English	1 (7.1)
Haitian Creole	13 (92.9)
Viral load
Detectable	7 (50)
Undetectable	7 (50)

GED, general educational development.

Sample participant quotes are in Table 1.

Barriers to Engagement in Care

One of the most prevalent barriers to care reported by the participants was cost of health care and the burden of documentation needed for insurance qualification. Further, HIV stigma plays a role, such that some people do not try to access care because of fear that other others might find out about their diagnosis.

Perceived Benefits of Telehealth

Telehealth was thought to be useful as a tool for nonacute issues. One participant stated that telehealth was more of an adjunct to, rather than a replacement for face-to-face visits. Participants also expressed that telehealth could be useful to address barriers such as lack of transportation and the need for privacy, for those who choose to keep their HIV status private.

Recommendations for Structuring Telehealth

Participants noted that it would be important to have staff available who could help with telehealth technology. Participants also expressed that providers should be culturally competent and able to speak Haitian Creole. There were also suggestions that the patients themselves would benefit from training to use the technology.

Access/Comfort with Technology

Participants noted that there was, in general, easy access to technology. There was, however, varying comfort with the technology.

Facilitators/Barriers to Medication Adherence

When asked about facilitators for medication adherence, participants felt that daily routine was a good method for taking the medications. In addition, understanding the benefits of taking medications for HIV, such as extending one's life, was a facilitator. There were, however, some barriers to adherence such as lack of understanding about the need for continued medication. In addition, some participants mentioned forgetting to take the medications and being affected by the medications' side effects.

This study evaluated patient acceptability of the use of telehealth for HIV care for people of Haitian decent living with HIV in Miami, Florida. Overall, participants felt that telehealth was acceptable as an adjunct to regular care. There were many perceived benefits of telehealth, such as being able to see a health care provider or case manager more readily and for nonacute issues. In addition, telehealth could help with barriers such as lack of transportation and need for privacy due to stigma. This is consistent with previous studies regarding HIV care where telehealth was highly acceptable.^5,9 Although these benefits have previously been described, this study is the first to focus on the context of Haitian culture.

We also found a strong need for cultural competency. In addition to the capabilities all clinic staff members should have in terms of customer service, staff serving this population should also have specific knowledge about Haitian culture and language. This is consistent with previous studies highlighting the need to address cultural factors when providing services for people of Haitian descent.⁴

Barriers to engagement in care highlighted in this study included health care-related cost and the burden of additional paperwork. Haitian PLWH have similar barriers to care as other migrants from countries associated with the Organization for Economic Co-Operation and Development with respect to linkage, suppression, and retention.¹⁰ Previous studies have also found that low socioeconomic status, lack of insurance coverage, and stigma continue to have a negative impact on the HIV care cascade among people of Haitian descent.^10,11 Telehealth has the potential to overcome some of these barriers but may not impact issues such as insurance coverage and health care costs.

Addressing digital literacy will be important in developing telehealth programs for this population, helping to overcome the digital divide in access to and utilization of electronic health services.¹² A tailored program in itself for people of Haitian descent would help move toward digital health equity. Training in cultural competence as well as education and technological help would be needed for a culturally tailored telehealth program for people of Haitian descent.

In summary, this study showed that telehealth was acceptable among people of Haitian descent living with HIV. We also identified key elements that would be important for a culturally tailored telehealth intervention. A telehealth intervention may represent an effective way to improve health outcomes among this population.

Footnotes

Acknowledgments

We would like to express thanks to our study participants and also thank everyone who helped make this study possible. We would also like to acknowledge the editorial support of April Mann and the Writing Center at the University of Miami.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This research is supported by the Miami Center for AIDS Research (CFAR) at the University of Miami Miller School of Medicine funded by a grant (P30AI073961) from the National Institutes of Health (NIH) (which is supported by the following NIH co-funding and participating institutes and centers: NIAID, NCI, NICHD, NHLBI, NIDA, NIMHD, NIA, and NINR), the University of Miami Developmental HIV/AIDS Mental Health Research Center, which is funded by the National Institute of Mental Health of the NIH under award number P30MH116867 and the National Institute on Minority Health and Health Disparities 3P50MD017347-02S1. S.K.D. was funded by R01MH121194. L.M.D. was funded by KL2TR002737 and R34DA057150.

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