1.1 BACKGROUND
The
HIV epidemic, since its beginning till present accounts for approximately 40.4
million deaths, and about 85.6 million people are infected with the virus.(1)
By the end of 2022, 39.0 million persons globally were HIV positive.(1) The disease burden differs
significantly between regions and nations. It is reported that the WHO African
region is the most affected with approximately 1 in every 25 adults living with
HIV and comprising more than two-thirds of all HIV-positive individuals
globally. There are global concerted efforts targeted at interrupting disease
transmission, achieving treatment adherence, and enhancing viral suppression.(2)
In recent years, ART regimens have evolved; they are currently more
potent, better tolerated, and widely available in fixed-dose combinations for
individuals of all ages.(3) These improvements have improved
adherence to treatment and facilitated viral suppression.(3) However, the psychosocial dimension
in HIV care, though often neglected is critical to the attainment of successful
clinical outcomes and subsequent survival among HIV-infected individuals
particularly in Sub-Saharan Africa.(4)
The World Health Organization recommends a
range of facility, home, and community-level interventions for Persons Living with
HIV (PLHIV) that support treatment adherence, psycho-social care, retention,
and re-engagement in their management. Patient-centred
care models have been adopted by different nations to enhance adherence. In
Sub-Saharan Africa, several approaches to improving adherence have been used
such as adherence counselling, reminder systems like alarms and calendars, SMS
messaging, electronic pill devices, adherence support clubs and the use of
treatment supporters.(5),(6),(7) The use of
patient-nominated treatment supporters has been recommended by the WHO and
adopted into HIV programmes as HIV patients are more
likely to be more open to their confidants in their home environment.(8),(9) Also, the chronicity of HIV infection and its
accompanying life-long management have made retention in care crucial. Hence PLWHA often rely on others for the much
needed help to enable them adhere to their treatment regimens and keep clinic appointments.
(4)
The concept of the use of treatment supporters has been employed in
chronic disease management such as diabetes, tuberculosis and hypertension, to
improve and enhance retention in the care of affected patients.(10)
The
World Health Organization defined a treatment supporter as a person (usually a
family member, friend or neighbor) nominated by the patient based on trust
whose main responsibility is to ensure that the patient takes his or her drugs
as prescribed throughout the course of the treatment.(11)
These treatment
supporters may be close friends or members of the patient’s family who are
chosen by the patient. (11) Studies have shown that HIV patients with the necessary
support have a higher likelihood of coping with the illness, keeping clinic
appointments and subsequently improving adherence to prescribed medications.(12),(4) The relevance of this strategy makes it
expedient to be incorporated as a viable support component in HIV care and
management. (13)
Patient-nominated
treatment supporters are called diverse names in different settings such as
treatment partners, care buddies, medicine companions, assistants, or treatment
buddies.(14),(12),(4),(15),(16) In
some places, they play vital roles in ensuring that infected individuals and
clinic visits. (14),(4) The expected role of a treatment supporter
comes in diverse forms.(4) Their
assistance impacts directly on the patient but subsequently affects the family,
community and the nation at large.(11) The scope of this role may include reminding the patients
of their hospital appointments, accompanying the patient for their clinic
visits, sometimes assisting to pick up their medications and in drug adherence(4)-(12),(14) Additionally, they
may help in fostering health-related behaviours for
example, restricting drug and substance use.(17) Furthermore, the treatment supporter also
helps to restore confidence in these patients, who often times are battling
with low self-esteem. (4),(18),(19), This way, the
patients and their families are encouraged.(12) The services of a treatment supporter
are unpaid for, they usually are not officially taught, neither are they
expected by managing physicians to carry out certain roles such as counselling
or home-based care.(20),(21) The expected function of these treatment
buddies is to ensure that the patients adhere to the prescribed course of
therapy.(14),(21)
Several qualitative studies in Asia and Africa(4),(14),(15),(18),(19),(22), have reported
conflicting patient’s experiences and opinions on the role of treatment
supporters in their care and management. Some patients expressed fears about
involving treatment supporters in their care. It can be deduced from this that
despite scale-up of ART and increased HIV awareness, PLWHA are still grappling
with apprehension on issues bothering on stigma and discrimination. This can
have a detrimental effect on the psychological well-being and the quality of
life of persons living with HIV. Furthermore, HIV-related stigma and
discrimination have been linked to mental health disorders such as anxiety and
depression. These can lead to poor adherence to ART and subsequent adverse
health outcomes. The use of treatment supporters, though often not necessary in
enrolment in HIV care in our settings is a viable treatment strategy with
evidence of its impact in HIV care and management. However, certain research gaps exist as there are few, recent and
relevant published work on the topic. Also,
there are conflicting findings on the subject matter underscoring
the need for more research in this area to corroborate the findings and also
depict the true situation in our local setting.(23),(24)
This study aims to explore treatment supporter experiences among HIV
patients attending the ante-retroviral clinic in a tertiary health facility in
Rivers State.
2. METHODOLOGY
2.1.
Study Area
This
study was carried out at the anti-retroviral clinic of the University of Port
Harcourt Teaching Hospital, Port Harcourt. The anti-retroviral clinic runs daily
with an average of 400 patients seen weekly. At the time of this study, the
test and treat approach as recommended by WHO had taken effect.(2) The ARV clinic adopted and effected
the WHO test and treat approach in June 2017. The patients are required to do a
confirmatory HIV test. Once they are enrolled into care, they undergo sessions
of adherence counseling and educated on HIV infection, the untoward effects of
the antiretroviral drugs etc. They are also asked to identify a treatment
supporter to assist in medication adherence. When started on ART, they are
expected to return to the clinic after two weeks, where they are reviewed for
any side effects and if none, they are scheduled on two monthly visits for
medication pickups. Adherence counseling is done at each refill visit. CD4
monitoring is done every three months and viral load monitoring every six
months.(25)
2.2 Study Design
This
was an exploratory, qualitative cross-sectional study design.
2.3 Study Population
HIV-infected
adult patients accessing treatment at the ARV clinic of University of Port
Harcourt Teaching Hospital. The study respondents comprised of two groups:
patients who had a treatment supporter and those who did not
have a treatment supporter.
2.4 Sample Size Determination
For each study group,
two FGDs were required - one male and one female, giving a total of 4
FGDs).Each FGD comprised of 12 persons,(26) giving a total of 48 study
participants.
2.5
Sampling technique
Purposive
Sampling was employed in the selection of the study respondents. Those selected
were those who met the eligibility criteria using the clinic care cards.
Eligible HIV patients were selected as they came for the clinic consultation.
The clinic care cards had the patients’ information such as duration of HAART,
whether they had a treatment supporter or not, presence or absence of known
chronic illnesses such as hypertension, tuberculosis or diabetes mellitus.
Those who had been on HAART for at least six months, who had no known chronic
illness, and had treatment supporters formed the sampling frame for the group
of patients with treatment supporters. Similarly, patients who had been on
HAART for at least six months, who had no known chronic illness but had no
treatment supporters formed the sampling frame for the group of patients who
had no treatment supporters. The cards of those who met the eligibility
criteria for both groups were assigned identification numbers. The
identification numbers were assigned to avoid double selection. The purpose of
the study was explained to the selected patients, their confidentiality was
assured and informed consent was obtained.
2.6 Study Instrument
2.6.1 Focus Group
Guide
The
Focus Group Guide contained a list of discussion topics used to assess
patients’ views on the role of treatment supporters in their care. This focus
group discussion guide was adapted from similar studies (19),(27)
2.7
Data
Collection Methods
The
qualitative method involved the use of focus group discussions. Participants
were educated on the aim and process of the FGD by the primary researcher.
Consent was obtained from the participants and their confidentiality assured. A
schedule was subsequently drawn for the FGDs after their consultations.
Focus group discussions were carried out in a
quiet and comfortable environment (in the seminar room of the department of
Community Medicine) in the hospital. There were two FGDs (male and female) in
each group (those who had treatment supporters and those who did not have
treatment supporters) making a total of four FGDs. Twelve participants
presented for each of the focus group discussion (FGD) and participated in the
process. These constituted a total of 48 participants for the qualitative
study.
All focus group discussions were moderated by
the primary researcher. Research assistants (a note-taker/a recorder) were
trained to assist with note taking including non-verbal cues and tape recording
of the sessions. Each FGD session lasted for about 45-60 minutes.
2.8 Statistical Analysis
The
recorded sessions from the FGDs were transcribed verbatim into a word document.
There was no need for translations as English language was used for all
sessions. Participants’ responses were represented as quotes. The responses
were organized based on the questions for each group (treatment supporter and
no treatment supporter). These were then coded based on emerging themes which
correspond to the key categories. The thematic analysis was employed in data
analysis with familiarization through repetitive reading, theme generation,
application of codes to the transcripts, and interpretation.
2.9
Ethical Considerations
Ethical
approval was obtained from the Ethics Committee of the University of Port-
Harcourt Teaching Hospital before the study commenced. A written permission to
conduct the study was sought and obtained from the Head of the ARV clinic. A
written informed consent was obtained from eligible participants in this study
by signing and returning a consent form prepared for this purpose. All study
participants were assured of confidentiality of their opinions and responses.
They were also informed about the voluntary nature of the study and were free
to opt out of the study at any stage without being penalized.
3. RESULTS
The
age ranges of the study participants in the FGDs who had treatment supporters
and those who did not have were 27 to 40 years and 25 to 40 years respectively.
In both groups, 10(41.7%) and 13(54.2%) respectively were married. The majority
had secondary level education [16(66.7%) in the treatment supporter group and
18(75.0%) in the no treatment supporter group]. The predominant occupation in
both groups was business 13(54.2%) and 11(45.8%) respectively. The responses
were coded and the main themes and sub themes are as showed in Fig 1 below
The responses were coded and the main themes and sub
themes are as showed in the diagram.
Diverse
responses were stated by the HIV patients from on how having a treatment
supporter has improved their clinic attendance. Majority of the participants in
the treatment supporter group said that having a treatment supporter was
important and had improved their clinic attendance.
4.
DISCUSSION
In
this study FGD participants who had treatment supporters and those who did not
have correctly identified the characteristics and roles of treatment
supporters. This was however where the concordance ended. Persons who
benefitted from having a treatment supporter affirmed them to be important for
ensuring treatment adherence, providing financial, emotional and physical
support. Persons who didn’t have a treatment supporter
stated fear of stigmatization and discrimination as major reasons why they
didn’t want a treatment supporter.
Comparing the finding above with other
studies that explored patients’
perspectives on the role of treatment supporters in HIV care(19),(14),(22) Popular opinions of HIV patients on the assistance they got from their
treatment supporters include reminding them to take their drugs and financial
support. The
implication of this is that drug adherence which is a predictor of viral
suppression and treatment success can be improved by the role of treatment
supporters. This study illustrates the value of treatment supporters to
maintaining good adherence. This also corroborates with others studies that
reported that they acted as drug reminders, and helped them keep to their
clinic appointments. (15), (18) Other supportive
roles that they offered included financial support, emotional support, and
physical support. These help to enhance overall wellbeing and quality of life
of the patients. This is critical to HIV care and management considering the
chronicity and the psychosocial problems that PLHIV have to cope with in the
course of their treatment.
Clients who did not
have a treatment supporter reported fear of stigmatization and discrimination
as the primary reasons why they didn’t want a treatment supporter. These
findings are consistent with similar studies(4),(24) that observed PLHIV expressed their fears on involving treatment
supporters in their care. This implies that despite ART scale-up and increased
HIV sensitization, PLHIV are still troubled with concerns on issues like
stigmatization and discrimination. This therefore underscores the importance of
intensifying patient counselling, public health education and community-wide
sensitization.
The strength of
this study relates to its explorative nature as the study participants were
able to express their views and opinions on the experiences, they had with
their treatment supporters. The study also highlighted major concerns and
uncertainties patients who had no treatment supporters faced. The limitations
are however that in assessing some of the information from the patients in this
study, there could be a possibility of social desirability bias. Anonymity and
confidentiality were employed in this study to minimize this type of bias.
5.
CONCLUSION
The role of patient-nominated
treatment supporters in HIV care is
critical in the care and management of PLHIV.
This strategy is
imperative given the chronicity and psychosocial dimension of HIV, and is well
known to enhance their likelihood of coping with the illness, keeping
clinic appointments and improving adherence to medications among other
benefits. This study highlights the importance of more intensive public health
education, advocacy and community-wide sensitization by Healthcare providers
and all stakeholders in order to reach and educate affected individuals and
families on the need for treatment supporters. This strategy should fittingly
be incorporated as a viable support component in HIV care and management. Their
assistance transcends the direct effects on the patient, to consequently impact
the family, community and the nation at large.
Acknowledgements: None
Competing Interests: The authors declare no conflict of interest.
REFERENCES
1. World
Health Organization. Global Health Observatory [Internet]. 2024 [cited 2024 Jan
31]. Available from: https://www.who.int/data/gho/data/themes/hiv-aids
2. Organization
WH. Progress report 2016: prevent HIV, test and treat all: WHO support for
country impact. World Health Organization; 2016.
3. Caplan MR,
Daar ES, Corado KC. Next generation fixed dose combination pharmacotherapies
for treating HIV. Expert Opin Pharmacother. 2018;19(6):589–96.
4. O’Laughlin KN,
Wyatt MA, Kaaya S, Bangsberg DR, Ware NC. How treatment partners help: social
analysis of an African adherence support intervention. AIDS Behav.
2012;16:1308–15.
5. Mills EJ,
Lester R, Thorlund K, Lorenzi M, Muldoon K, Kanters S, et al. Interventions to
promote adherence to antiretroviral therapy in Africa: a network meta-analysis.
Lancet HIV. 2014;1(3):e104–11.
6. Church K,
Kiweewa F, Dasgupta A, Mwangome M, Mpandaguta E, Gómez-Olivé FX, et al. A comparative
analysis of national HIV policies in six African countries with generalized
epidemics. Bull World Health Organ. 2015;93:457–67.
7. Maduka O,
Tobin-West CI. Adherence counseling and reminder text messages improve uptake
of antiretroviral therapy in a tertiary hospital in Nigeria. Niger J Clin
Pract. 2013;16(3):302–8.
8. Organization
WH. Consolidated guidelines on the use of antiretroviral drugs for treating and
preventing HIV infection: recommendations for a public health approach. World
Health Organization; 2016.
9. World Health
Organization. Consolidated guidelines on HIV prevention, testing, treatment,
service delivery and monitoring: recommendations for a public health approach.
2021.
10. Jaung MS,
Willis R, Sharma P, Aebischer Perone S, Frederiksen S, Truppa C, et al. Models
of care for patients with hypertension and diabetes in humanitarian crises: a
systematic review. Health Policy Plan. 2021;36(4):509–32.
11. Organization
WH. Patient monitoring guidelines for HIV care and antiretroviral therapy
(ART). 2006; Available from:
https://iris.who.int/bitstream/handle/10665/43382/9241593881_eng.pdf
12. Kibaara C, Blat
C, Lewis-Kulzer J, Shade S, Mbullo P, Cohen CR, et al. Treatment buddies
improve clinic attendance among women but not men on antiretroviral therapy in
the Nyanza region of Kenya. AIDS Res Treat. 2016;2016.
13. Organization
WH. Psychosocial support for people with TB, HIV and viral hepatitis in the
continuum of care in the WHO European Region. World Health Organization.
Regional Office for Europe; 2020.
14. Ware NC, Idoko
J, Kaaya S, Biraro IA, Wyatt MA, Agbaji O, et al. Explaining adherence success
in sub-Saharan Africa: an ethnographic study. PLoS Med. 2009;6(1):e1000011.
15. Foster SD,
Nakamanya S, Kyomuhangi R, Amurwon J, Namara G, Amuron B, et al. The experience
of “medicine companions” to support adherence to antiretroviral therapy:
quantitative and qualitative data from a trial population in Uganda. AIDS Care.
2010;22(sup1):35–43.
16. Nakigozi G,
Makumbi FE, Bwanika JB, Atuyambe L, Reynolds SJ, Kigozi G, et al. Impact of
patient-selected care buddies on adherence to HIV care, disease progression,
and conduct of daily life among pre-antiretroviral HIV-infected patients in
Rakai, Uganda: a randomized controlled trial. JAIDS J Acquir Immune Defic
Syndr. 2015;70(1):75–82.
17. Olowookere SA,
Fatiregun AA, Akinyemi JO, Bamgboye AE, Osagbemi GK. Prevalence and
determinants of nonadherence to highly active antiretroviral therapy among
people living with HIV/AIDS in Ibadan, Nigeria. J Infect Dev Ctries.
2008;2(05):369–72.
18. Bezabhe WM,
Chalmers L, Bereznicki LR, Peterson GM, Bimirew MA, Kassie DM. Barriers and
facilitators of adherence to antiretroviral drug therapy and retention in care
among adult HIV-positive patients: a qualitative study from Ethiopia. PLoS One.
2014;9(5):e97353.
19. Duwell MM,
Knowlton AR, Nachega JB, Efron A, Goliath R, Morroni C, et al.
Patient-nominated, community-based HIV treatment supporters: patient
perspectives, feasibility, challenges, and factors for success in HIV-infected
South African adults. AIDS Patient Care STDS. 2013;27(2):96–102.
20. Chang LW,
Kagaayi J, Nakigozi G, Ssempijja V, Packer AH, Serwadda D, et al. Effect of
peer health workers on AIDS care in Rakai, Uganda: a cluster-randomized trial.
PLoS One. 2010;5(6):e10923.
21. Torpey KE,
Kabaso ME, Mutale LN, Kamanga MK, Mwango AJ, Simpungwe J, et al. Adherence
support workers: a way to address human resource constraints in antiretroviral
treatment programs in the public health setting in Zambia. PLoS One.
2008;3(5):e2204.
22. Wasti SP,
Simkhada P, Randall J, Freeman J V, Van Teijlingen E. Barriers to and
facilitators of antiretroviral therapy adherence in Nepal: a qualitative study.
J Health Popul Nutr. 2012;30(4):410.
23. Taiwo BO, Idoko
JA, Welty LJ, Otoh I, Job G, Iyaji PG, et al. Assessing the viorologic and
adherence benefits of patient-selected HIV treatment partners in a
resource-limited setting. JAIDS J Acquir Immune Defic Syndr. 2010;54(1):85–92.
24. Nachega JB,
Chaisson RE, Goliath R, Efron A, Chaudhary MA, Ram M, et al. Randomized
controlled trial of trained patient-nominated treatment supporters providing
partial directly observed antiretroviral therapy. AIDS. 2010;24(9):1273.
25. Olakunde BO,
Adeyinka DA. Test-and-treat approach to ending HIV epidemic in Nigeria: current
status and future prospects of domestic funding. HIV AIDS Rev Int J HIV-Related
Probl. 2017;16(4):205–11.
26. K.Park. K.Park.
Park’s textbook of Preventive and Social Medicine. Bhanot Publishers. 2007:717.
27. Root R,
Whiteside A. A qualitative study of community home‐based care and
antiretroviral adherence in Swaziland. J Int AIDS Soc. 2013;16(1):17978.
