|BRIEF RESEARCH ARTICLE
|Year : 2020 | Volume
| Issue : 5 | Page : 79-82
Motivation for adherence to antiretroviral therapy by transgender people living with hiv – A study in West Bengal, India
Gautam Kumar Ghosh1, Subrata Biswas1, Piyali Ghosh2, Suman Ganguly3, Malay Kumar Saha4
1 Project Coordinator, ICMR-National Institute of Cholera and Enteric Diseases, Kolkata, West Bengal, India
2 Project Assistant, ICMR-National Institute of Cholera and Enteric Diseases, Kolkata, West Bengal, India
3 Consultant, West Bengal State AIDS Prevention and Control Society, Kolkata, West Bengal, India
4 Scientist F, ICMR-National Institute of Cholera and Enteric Diseases, Kolkata, West Bengal, India
|Date of Submission||11-Nov-2019|
|Date of Decision||04-Feb-2020|
|Date of Acceptance||29-Feb-2020|
|Date of Web Publication||14-Apr-2020|
Dr. Malay Kumar Saha
ICMR-National Institute of Cholera and Enteric Diseases, Kolkata, West Bengal
Source of Support: None, Conflict of Interest: None
| Abstract|| |
The introduction of antiretroviral therapy (ART) has substantially improved the survival of persons infected with HIV. In India, the aggregated HIV prevalence among transgender (TG) community was found 7.5%. West Bengal, with over 30,000 TG population recorded HIV prevalence of 4.8%. The qualitative study was conducted in 2019 with the objective to explore the motivating factors for adherence to ART treatment among TG people living with HIV (PLHIV) in an ART center. Respondents were motivated PLHIVs on ART with suitable treatment adherence recorded. Data were inductively analyzed, using thematic analysis, to identify themes central to ART adherence. Five themes emerged with prime acknowledgment of respondents that ART medication is lifelong for their survival with receiving support. Notwithstanding the chronic nature of the disease, TG PLHIV patient stands a better chance of maintaining treatment adherence if they are involved in treatment plans with their community-based members' helping as peer navigators.
Keywords: Adherence, antiretroviral therapy, motivation, people living with HIV, transgender
|How to cite this article:|
Ghosh GK, Biswas S, Ghosh P, Ganguly S, Saha MK. Motivation for adherence to antiretroviral therapy by transgender people living with hiv – A study in West Bengal, India. Indian J Public Health 2020;64, Suppl S1:79-82
|How to cite this URL:|
Ghosh GK, Biswas S, Ghosh P, Ganguly S, Saha MK. Motivation for adherence to antiretroviral therapy by transgender people living with hiv – A study in West Bengal, India. Indian J Public Health [serial online] 2020 [cited 2020 May 29];64, Suppl S1:79-82. Available from: http://www.ijph.in/text.asp?2020/64/5/79/282421
The introduction of antiretroviral therapy (ART) has remarkably improved the survival of persons infected with HIV with required treatment adherence. Treatment adherence is pivotal to avert drug resistance development and treatment failure. HIV services have been successfully targeted at transgender (TG) people in India. However, for the community ART adherence often observed challenging given the complex combination of individual, community, and structural factors. The national HIV prevalence is 0.31%, whereas aggregated HIV prevalence among the TG community found 7.5%. This study was conducted in West Bengal, where around 13.3% of the country's TG population dwelt., The objective of this study to explore the motivating factors for adherence to ART among TG people living with HIV (PLHIV) in an ART center in West Bengal.
This qualitative study was conducted in July and August 2019 at the R G Kar Medical College and Hospital in Kolkata among TG patients on ART. To be included, respondents had to be 18 years or over and consent to participate in the study. The purposive sampling method used to select 19 participants, of 23 patients approached for the study. The information for subjective examination were gathered through three individual meetings with key informants (one female doctor, one female counselor, one Outreach Worker) to get their “sees on patients” experiences, and two focus group gatherings with TG PLHIV patients were held with interactions progressively likened to social correspondence. The semi-structured interviews comprised broad, open-ended questions as per the developed focus group discussion (FGD)/in-depth interview guide. The multipoint of views was gathered to comprehend the components that persuade TG PLHIV patients' adherence to ART routine. The adherence of patients noted in their green booklet was noted. Intake of the prescribed medication of > 95% was considered adherent. The sociodemographic and years in ART profile noted from the patients' treatment book of 19 respondents (n = 19) are summarized in [Table 1].
|Table 1: The socio-demographic and years in antiretroviral therapy profile noted from the patients treatment book of 19 respondents (n=19) |
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All participants were given the printed study protocol and explained the voluntary nature of their participation to obtain their written consent obtained. Focus groups participants were paid Rs. 150 per head as compensation. Individual interview participants were not paid. The Institutional Ethics Committee (IEC), Indian Council of Medical Research-National Institute of Cholera and Enteric Diseases also approved the primary study, vide No A-1/2015 IEC, dated September 14, 2015.
Thematic content analysis with some elements of grounded theory was used to analyze the data.,,,, The individual interviews and focus groups were conducted either in Bengali or English according to the convenience of respondents. Based on the respondents' consent, part of the individual interviews and focus groups were audio-taped and rest noted verbatim by two experienced note-takers. The discussions from sound tape and verbatim notes were interpreted; and converted into English. The data were repeatedly read for evidence of adherence, and initial codes were noted. Data shared by respondents in connection to adherence to ART, regardless of whether not pervasive in the dataset, was noted. Data were analyzed in QDA Miner Lite Version. 1.4.2, (Provalis Research, Montreal developed by Normand Peladeau) using thematic analysis.
The following five themes emerged that are specified below
- ART is life long-In all the focus discussions, most respondents spoke forcefully of personal motivation to adhere to their ART regimen, based on their deep-felt realization that ART was “lifelong” and “life-long” commitment. The extracts express: A professional Kathak dancer who underwent sex-change procedures to marry fellow college mate in FGD 1 said-I desire to live this happy conjugal life, and resolved to continue with ART medicine throughout the life. One FGD 2 respondent said-After being diagnosed HIV positive, I was living with constant fear of death and loss of income. I realized that I can live my life with this medicine. The above extracts indicate a strong belief that leads to very strong intrinsic and family motivational push on participants to remain on their medication. Even the side effects of ARTs for many participants were found as manageable. For example, a male TG respondent in FGD said, ― the initial side effects of the medicine were intolerable but past experiences of the sickness made me withstand the same-which was gone soon.” Doctors at the RGKMCH ART Centre stressed that the currently given first-line ART drugs has minimal side effects except the bitter medicinal taste complaints
- Even when “ART for life” appeared to effectively rouse adherence, for TG PLHIV living in inaccessible territories access to ARTC poses challenges. Said FGD 2 respondent-“our community friends who stay in panchayat areas, complain of considerable transport cost bearing and long hours spent for medicine refill”
- Routine remembering-In this study, very few participants talked about missing ART medicine more than three times in a month, and that for reasons as either staying out of home overnight or else late-night engagement fatigue leading to their skipping food and the medicine. Various practical strategies were adopted for remembering to take their medication in a highly routine way, often using multiple strategies simultaneously, were stated by the participant. As noted, the most popular strategy in use and emerged through the discussions was self-reminder through putting an alarm in individual cell phone and marking in the calendar which alone accounted for 60% of 19 individual strategies mentioned. Twenty percent of all respondents stated to have adopted the habit of taking the medicine soon after their dinner routinely. Ten percent of respondents stated that a family member and/or a friend reminded them of the medicines
- Disclosure support-the qualitative study did not assess the disclosure about HIV positive status. However, across the data sources, it was clear that most participants did see disclosure as an important facilitator for adherence – both directly in the sense that other people could assist PLHIV, as these narratives illustrate-one FGD 1 respondent said-”My mother reminds me regularly on medicine taking and takes care of what I eat.” Another respondent in FGD 2 stated ― “I felt it obligatory to inform my HIV positive status to my friend so that she can help me in need.” However, few participants reported concerns about disclosing their HIV-positive status. This is unsurprising given that these respondents live within communities and contexts where stigma and discrimination against TG are high. Notably, some participants viewed disclosure as positive community action. As one nongovernmental organization worker respondent in FGD 1, declared ― “my openness on personal HIV positive status at field level had positive consequences for other community people to test their current HIV status, and linking HIV positive cases with ARTC”
- Supportive ARTC facility-Across the focus groups data, respondents spoke of the positive behavior of ART service providers in general. This may have been because all focus groups were held within the ART campus, and respondents might have felt some pressure for positive responses. But what is intriguing is not their endorsement of ART centers, but the kind of things they perceived as being beneficial for their continued treatment adherence and health. These narratives describe-in FGD 2 a respondent remarked-as this facility is a dedicated HIV treatment center, we feel comfortable being together in the waiting room.” In FGD 1 a new ART entrant informed ”I was diagnosed with pulmonary tuberculosis (TB) and referred to TB care unit located in the same building. The ARTC staff helped me during that phase”
- TG community and PLHIV network support-The services rendered by peer navigators as community care coordinator and outreach workers were found beneficial by some respondents. Narratives, sharing both positive and negative experiences are notable-In FGD 1 one respondent stated-”the TG community-based organizations (CBOs) operating in Kolkata and the districts have made our voices heard, and this has been the positive social impact created.” Another respondent in FGD 2, however, pointed out-”our TG CBO is active mostly in Kolkata and periphery districts, but our community PLHIV in rural areas seldom get their services for the lack of their presence in those areas.”
Notwithstanding the complexity of the ART regimen, our data indicated that respondents' quite a strong desire to “stay alive through ART regimen” and adhere to treatment. Probably, the motivation may well be because respondents had experienced the death of others or had experienced what it is like to be bedridden with illness and not have access to treatment.
That motivation for adherence is enhanced by accessible free of charge care, approachable and supportive health services providers, broad societal acceptance of ART, and past first-hand experiences with comorbidity issues, as most of the respondents in the study told us.
However, the lady Doctor at ARTC pointed out that the expressed firm motivation to adhere to ART regimen gets faded, as patients become more “well” and passed sufficient years under the ART regimen the long-term adherence may be poorer as a result.
The purposively selected respondents lacked suitable representativeness. Furthermore, the participating patients were already receiving care and support from the ART center; therefore, the narratives are subjective descriptions of experiences as they understood them at the time of the focus groups. These narratives may be affected by biases relating to social desirability, recall, and participants' interpretations of their experiences. Again, as qualitative study in nature, it may not be reflective of all TG PLHIV on ART in the country.
In the perspective of the chronic nature of the disease, HIV treatment and care require the making of extra assistance focuses on the inclusion of patients into their treatment plan to systemize the treatment process. In addition, engagement of their community-peer navigators provides reliable and relevant information to help PLHIV patients overcome barriers to engagement, retention, or re-engagement in treatment.
The authors would like to acknowledge National AIDS Control Organization ans West Bengal State AIDS Prevention & Control Society for supporting the study. We are thankful to Santanu Banerjee and Sutapa Dey for conducting FGDs. Last but not the least, we are thankful to all participants for their spontaneous and meaningful interfaces in the study.
Financial support and sponsorship
National AIDS Control Organization, New Delhi.
Conflicts of interest
There are no conflicts of interest.
| References|| |
Paterson DL, Swindells S, Mohr J, Brester M, Vergis EN, Squier C, et al
. Adherence to protease inhibitor therapy and outcomes in patients with HIV infection. Ann Intern Med 2000;133:21-30.
Glaser B, Strauss A. The Discovery of Grounded Theory: Strategies for Qualitative Research. New York: Routledge; 2000.
Amico KR, Toro-Alfonso J, Fisher JD. An empirical test of the information, motivation and behavioral skills model of antiretroviral therapy adherence. AIDS Care 2005;17:661-73.
Kitzinger J; Focus groups. In: Pope C, editor. Qualitative Research in Health Care. 3rd
ed. Malden, MA: Blackwell Publishing Ltd.; 2006. p. 21.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3:77-101.