Abstract
Introduction
The “Models of Hope” programme trains HIV-positive individuals as counselors and educators to bridge this gap. However, their roles and the challenges they face remain understudied.
Aim
We sought to understand the responsibilities and challenges of models of hope in the HIV AIDS care-giving continuum in Ghana.
Methodology
The study employed an exploratory qualitative design to explore the responsibilities and challenges of HIV/AIDS models of hope in Ghana. Interviews were audio recorded and transcribed verbatim for analysis. Data were analyzed using the Atlas ti software.
Results
Twelve models of hope participated in the study. From the data four (4) main themes and eight (14) sub-themes were generated. The main themes include; roles and responsibilities as models of hope, lived experiences, challenges faced, and coping mechanisms.
Conclusion
Capacitating models of hope is instrumental in fostering resilience and promoting the health and well-being of PLHIV in Ghana.
Introduction
In Ghana, HIV/AIDS continues to be a significant public health challenge. 1 By the end of 2024, the total number of people living with HIV in the country was 334,721, with an estimated 15,290 new infections recorded. 2 Also, the Volta region has been ranked the seventh-highest HIV load among the sixteen regions. 3
With regards to that, the Joint United Nations Programme on HIV/AIDS (UNAIDS) has been championing universal access to care for all persons living with HIV (PLHIV) over the years. 4 They reckon that 95% of persons living in each country should know their HIV status through testing. Out of those that would test positive for the virus, 95% should be on antiretroviral therapy with 95% of them having achieved viral suppression by the year 2030. 4
However, Ghana faces a substantial challenge in the HIV/AIDS care-giving continuum, which encompasses testing, linkage to care, retention in care, and viral suppression, 5 due to poor patient-to-nurse ratio. In Ghana for instance, the patient-to- nurse ratio stands at 1:1000. 6 This overwhelming workload on healthcare professionals underscores the importance of finding alternative pathways to augment HIV/AIDS care personnel in the country. One of such measures is through the integration of “Models of Hope” in the HIV/AIDS care continuum. 7 Models of Hope are individuals living with HIV/AIDS who have successfully navigated the care-giving process and have achieved viral suppression. 8 Models of Hope promotes access to healthcare services, and advocating for the rights of people living with HIV/AIDS (PLHIV). They also offer services such as home-based care, treatment literacy, psychosocial support, stigma reduction, and helping link clients to health facilities. 9
In Ghana, Models of Hope have been instrumental in responding to the HIV/AIDS epidemic, particularly in areas such as the Volta Region, where the prevalence rate of HIV/AIDS is higher than the national average. 10 To address the gaps in the HIV/AIDS care continuum in the country, the Models of Hope programme was launched with funding from the United States Agency for International Development (USAID). The programme trains HIV-positive individuals (“Models”) to serve as counselors, educators, and role models, providing comprehensive support services within their communities. 11 The premise of the programme is that HIV-positive peer models can gain trust, offer hope, and positively influence behaviours among others facing similar challenges.
By the year 2022, over 2,500 Models were active across Ghana’s seven highest HIV burden regions, including the Volta Region. 10 Consequently, this has led to increased HIV testing uptake, facilitated treatment initiation and adherence, and fostered enabling environments in these regions. 12 However, Models face tirade of challenges such as irregular compensation, transportation barriers, burnout and HIV-related stigma. 13 This is particularly so in the Volta Region where it has longed been reported that models operate within the context of limited resources, sociocultural barriers, and challenges related to stigma and discrimination. 14 Despite these obstacles, they have demonstrated resilience and a commitment to improving the well-being of PLHIV. 12
Moreover, studies conducted on HIV/AIDS in the country and the region at large has failed to account for the role Models of Hope play in the HIV/AIDS care-giving continuum15-21 to better inform policy makers on how to improve and sustain the initiative.If the unique expertise of Models of Hope in the HIV/AIDS care continuum is not adequately strengthened and utilized through research that highlights their roles and challenges, the burden on healthcare professionals in the region and across the country will remain unrelieved. This could lead to worsened health outcomes for PLHIV. Hence, we examined the work-related responsibilities and challenges of HIV/AIDS Models of Hope in in the Volta Region of Ghana for informed decision making on HIV/AIDS care in the region and the country, thereby improving the quality of life of PLHIV, per the constructs of Figure 1. Conceptual framework of the study
Materials and Methods
Study Design
This study employed an exploratory qualitative design to gain a deeper understanding of the responsibilities and challenges of Models of Hope in the Volta region of Ghana, using a semi-structured interview guide. The study was conducted over a one-month period, from May 1 to May 31, 2024, in accordance with established qualitative reporting guidelines (SRQR). 22
Study Site Description
This research was conducted in the Volta region of Ghana. The Volta Region is one of Ghana’s sixteen regions with Ho as its capital. 23 The region has a population of 1,659,042 and borders the Oti Region in the north, the Gulf of Guinea in the south, the Eastern Region in the west, and the Republic of Togo in the east. It is located between longitudes 000 15′W and 100 15′E and latitudes 600 15′N and 800 45′N. It has a total land area of 9,504 square kilometers (km2), accounting for (8.7%) of Ghana’s total land area. 24 The Volta Region, like the rest of Ghana, has a tropical climate with mild temperatures ranging between 21 and 320 degrees Celsius for the majority of the year. 25 It is one of the regions with high burden of HIV in the country. 8 The region hosts 749 health facilities in total, comprising 29 hospitals, 156 health centres, 44 clinics, 4 polyclinics, 14 maternity homes, 452 CHPS compounds, and 50 private facilities. Among these, the Volta Regional Hospital, Ho Teaching Hospital, Bator Catholic Hospital, Adidome Hospital, and Torgorme Hospital function as sentinel sites staffed with certified HIV/AIDS counselors. 3
Researcher Characteristics and Reflexivity
The research team comprised four members with backgrounds in public health and qualitative research. Two members (ASO and FD) conducted the fieldwork, including participant recruitment and in-depth interviews. Their prior experience in HIV/AIDS-related studies enhanced their ability to build rapport and elicit rich data. The project supervisor, EM, provided oversight on methodological rigor and ethical considerations, while VCU supported data validation and interpretation.
Also, the team recognized the potential influence of their professional experiences and personal beliefs on data collection and analysis. To minimize bias, reflective journals were kept to document assumptions and field experiences. Regular team debriefings were held to address emerging biases and ensure consistency in interpretation. Interviews were conducted in a respectful and empathetic manner, fostering participant trust and openness. These reflexive practices enhanced credibility, ensured neutrality, and strengthened the overall integrity of the study.
Study Population
The population of interest was the Models of Hope in the sentinel sites offering ART services in the Volta Region of Ghana. All Models of Hope who were 18 years and above and had at least one year of working experience in HIV/AIDS care-giving in the Volta Region were included. Models who met the inclusion criteria but had traveled out of their work stations at the time of data collection were excluded from the study. A total of twelve (n = 12) participants were included.
Sample Size Determination
The saturation method was employed to determine the total number of participants enlisted in the study. Data saturation indicated the stage in the research process where no new information emerged during data collection and analysis, signaling to researchers that data collection could cease. 26 Typically, saturation in qualitative studies is achieved within the first twelve (12) interviews, 27 as was in the case in this study. Hence, twelve (12) persons were interviewed in this study.
Sampling Procedure
Participants were purposively selected based on their experience and involvement in HIV care. Only those who consented to participate and met the inclusion criteria were recruited.
Data Collection Procedure
An in-depth interview guide was used to collect the data. The interview guide consisted of three main sections; socio-demographic characteristics of the participants, their roles as models of hope and the challenges they faced in executing their duties. Two research team members (ASO and FD) moderated the interviews. The project supervisor (EM) examined the interview guide to guarantee the instrument’s dependability. The two data collectors were then trained on the tenets of the interview guide and on ethical issues pertaining to research involving human subjects. The guide was then piloted among two models of Hope in the Hohoe municipality which was not part of the main study sites, before the actual data collection began. Audio recorders were used to record the interviews with the permission of the participants. Each interview lasted about 45 minutes and were conducted in secluded places within the various health facilities in order to ensure participants privacy.
Data Analysis
Data were analyzed thematically. Interviews were transcribed verbatim and coded inductively using ATLAS.ti software. Codes and themes were developed based on study objectives. Discrepancies were resolved through discussions among the research team.
Ethical Considerations
Ethical clearance for the study was sought from the Research Ethics Committee. Permission was also sought from the management of the healthcare facilities where the study was conducted. Signed informed consent was then sought from the participants before being interviewed. Participation was voluntary and the ethical principles of beneficence, non-maleficence, and respect for human dignity were carefully adhered to when conducting the study. Data was managed, stored, analyzed, and reported in ways that prevented respondent details from being revealed.
Rigor
To ensure rigor and trustworthiness, the study adhered to the four key qualitative research criteria proposed by Lincoln and Guba: credibility, transferability, dependability, and confirmability. 28 Credibility was achieved through prolonged engagement with participants, triangulation of data sources, and member checking, where participants verified the accuracy of interpretations. Transferability was ensured by providing rich descriptions of the study context and participants, allowing readers to determine applicability to other settings. Dependability was maintained through a detailed audit trail documenting all methodological decisions and procedures. Confirmability was achieved by maintaining reflexive journals and conducting peer debriefing sessions to minimize researcher bias. The use of audio recordings, verbatim transcription, and coding verification by multiple researchers further enhanced data reliability. Collectively, these strategies ensured that the study’s findings accurately reflected participants’ perspectives, thereby enhancing the overall trustworthiness and rigor of the research process.
Results
Socio-Demographic Characteristics
Sociodemographic Information of Participants
Thematic Results
Thematic Results of the Study
Responsibilities as Models of Hope
When asked about their responsibilities as models of hope, participants mentioned being a model of hope to clients, counseling activities, client education, treatment and medication, mental health support and social support as the key roles they play.
Being a Model of Hope to Clients
One of the major responsibilities shared by participants was their role as models of hope to clients. Many explained that their positions as individuals living with HIV empowered them to encourage others, especially those newly diagnosed. Three main codes emerged under this sub-theme: peer paralegal, using oneself as an example to newly diagnosed clients, and giving hope to newly diagnosed clients.
Peer Paralegal
A few participants described serving as peer paralegals within their communities. They noted that their work involved educating clients on important legal and health issues, particularly concerning their rights as people living with HIV. One participant shared: “I am a paralegal, yes. So, principally, my work is to educate the class on certain key topics. For instance, their rights.” (P10, Male, 44 years).
Peer Support
Most participants indicated that they often used themselves as examples to inspire hope and confidence in newly diagnosed clients. They explained that sharing their personal experiences of living positively with HIV helped demystify the disease and encourage others to adhere to treatment. One respondent expressed: “I am a self-motivator to those who are living with HIV, as me. At first, I didn't know anything concerning HIV, but through our training on this, I've gained a lot of knowledge about it. And I've also tried to impart it to other clients who are living with this particular disease.” (P8, Male, 28 years). “As a model of hope, I was taught to use myself as an example to other people suffering from the same infection.” (P11, Female, 47 years).
Giving Hope to Newly Diagnosed Clients
Some participants emphasized that one of their key responsibilities was to give hope to newly diagnosed clients. They explained that many clients initially experienced fear and hopelessness after diagnosis, and seeing someone living healthily with HIV motivated them to adhere to treatment and live positively. As one participant narrated: “Okay, so as a model of hope, I'm also a victim of virtual. So, my responsibility is to motivate my colleagues to adhere to the medications and also attend some HIV programs so that it will help them to stand firm. Okay, thank you very much.” (P12, Female, 36 years).
Counseling Activities
Participants also discussed their counseling activities as one of the positive aspects of their work. These activities involved providing guidance and education to clients on prevention, treatment adherence, and legal rights. Three main sub-categories emerged under this theme: counseling mothers on PMTCT, medication adherence counseling, and counseling clients on their legal rights.
Counseling Mothers on PMTCT Transmission of HIV
A few participants mentioned focusing their counseling on HIV-positive mothers during antenatal care visits. They educated the mothers on preventive measures to avoid transmitting the virus to their babies and monitored them throughout the process. One participant explained: “I mainly focus on talking to mothers who are diagnosed with HIV during antenatal visits. I educate them on the necessary steps to prevent their babies from getting infected during childbirth.” (P1, Female, 44 years). “And make sure that the babies are safe. And the mother as well.” (P6, Female, 38 years).
Medication Adherence Counseling
The majority of participants reported that they counseled clients on the importance of adhering to antiretroviral therapy (ART). They highlighted that consistent medication use helps suppress the virus and maintain good health. Counselors also noted that some clients struggled with adherence, making this an essential focus area. One participant shared: “We also talk to them on the need for them to also start taking drugs for their own wellbeing.” (P6, Female, 44 years). “We educate people on the importance of taking their medication and the risks of not doing so. Some collect the drugs but don’t take them, while others hide their status. We visit, counsel, and help them start treatment at the hospital.” (P6, Female, 50 years).
Counseling Clients on Their Legal Rights
A few participants stated that they provided counseling on legal rights, particularly focusing on confidentiality, non-discrimination, and stigma reduction. They emphasized that understanding one’s rights helped empower clients and fostered a more respectful and supportive environment for people living with HIV. One participant explained: “Even if someone is seen, they still have fundamental human rights. Only they can disclose they have HIV, you have no right to ask, and spreading their status is illegal.” (P10, Male, 44 years). “I can say that the people now know their rights, and that has helped to reduce stigma a lot.” (P3, Female, 50 years).
Home Visit Counseling
Some participants emphasized the importance of home visits as part of their counseling responsibilities. They explained that visiting clients who miss appointments or are unable to visit the facility helps ensure continuity of care and strengthens the client counselor relationship. This sentiment is captured in the following narratives: “Whenever a patient is unable to come to the facility, we conduct home visits to find out why they missed treatment. If the patient needs help, I offer my support to ensure they continue care.” (P6, Female, 38) “I counsel clients who visit the facility and also reach out to those afraid to come. Sometimes, other clients inform me about new patients, so I visit their homes and talk to them personally since phone calls are not effective.” (P12, Female, 36)
Nutritional Counseling
Most participants discussed the significance of providing nutritional counseling to clients living with HIV/AIDS. They highlighted that a balanced diet is essential to enhance immunity, improve the effectiveness of treatment, and support overall wellbeing. This was reflected in the following statements: “We encourage them to get up and start doing whatever they were once doing before the diagnosis. Also, we talk to them on the food they should be eating.” (P2, Female, 24) “Eat food that boosts our immunity. Examples are fruits and vegetables.” (P11, Female, 47)
Client Education
Stigma Prevention and Sensitization
A few participants indicated that they engaged in activities aimed at preventing stigma and promoting community sensitization. They explained that stigma remains a major barrier to care, and through education and advocacy, they strive to change negative perceptions toward people living with HIV. Some even reported cases of discrimination to authorities to promote accountability. This is illustrated in the following accounts: “We educate people about stigma and how to avoid behaviors that promote it. We also report individuals who use offensive language to the police. Many live close to people with the disease without knowing, yet mock those they do. We once reported a woman who later apologized.” (P3, Female, 50) “We educate people about stigma and how to prevent it, teach them ways to protect unborn babies from infection, and encourage them to stay hopeful and live normal, healthy lives.” (P1, Female, 44)
Provision of HIV Information to Newly Diagnosed Clients
Most participants stated that they provide comprehensive information on HIV/AIDS to newly diagnosed clients. They see it as their duty to educate clients on the disease, its management, and the importance of adherence to medication. This was expressed as follows: “Our responsibilities as caregivers is to provide newly diagnosed people with information on the disease and how to live henceforth.” (P4, Female, 49) “Okay, I don’t have any specific thing that I do. But one thing I can tell you is that I use myself as an ambassador to teach other people how to go about their ART drugs and how to live their life.” (P7, Male, 39)
Advising Clients to Avoid Alcohol and Herbal Medicine
Some participants discussed educating clients about avoiding alcohol and herbal medicine, explaining that such substances interfere with antiretroviral therapy and overall health. They emphasized the importance of maintaining a healthy lifestyle and strict adherence to prescribed drugs. This was reflected in the following statements: “Also, alcohol is not good for someone suffering from this infection.” (P11, Female, 47) “Now, I take my drugs on time, I do not participate in any risky behaviors. I do not take alcohol and herbal medicines. And I think this is really helping me. Recently, when I checked my viral load, they said it has reduced very much and that really made me happy.” (P8, Male, 28)
Educating HIV Pregnant Women to Take Their Drugs
A few participants reported that they focus on counseling pregnant women and nursing mothers on the importance of consistent medication use. They highlighted that this form of counseling helps prevent mother-to-child transmission and promotes the health of both mother and child. The following quotations summarize their perspectives: “We also talk to them on the need for them to also start taking drugs for their own wellbeing.” (P1, Female, 44) “As a model, as a mentor mother, my work is to counsel the pregnant patients and the nursing mothers as well. For them to be on the ARVs all the time. To come to the clinic at the dates assigned to them.” (P6, Female, 38)
Treatment and Medication
Assisting in the Distribution of Medication to Clients
Some participants indicated that they assist in the distribution of medication, especially to clients who cannot visit the facility regularly. This support ensures that clients maintain adherence to their treatment schedule and do not default on their drugs. The following quotes illustrate this responsibility: “Most of my clients used to depend on me to bring their ARVs to their homes. When I stopped working at the facility, I told them to come for the drugs themselves, but many stopped coming because they relied on me for delivery.” (P6, Female, 38) “We also take the drugs from the hospital to them at their various homes. Some people also call us to share their grievances with us and ask for guidance.” (P4, Female, 49)
Mental Health Support
Counseling Clients out of Depression and Stigma
Most participants described counseling clients who struggle with depression and self-stigma following their HIV diagnosis. They explained that many clients initially experience denial, fear, and shame, but through continuous counseling, they regain confidence and acceptance. This was expressed as follows: “It is important to me because it gives me the opportunity to help other retro patients and provide them with the information they need. Many feel ashamed and isolate themselves after diagnosis, but through our talks, they gain confidence to live normal lives and see themselves as capable individuals.” (P2, Female, 24) “We were also trained on how to talk these patients out of depression and the stigma associated with the disease.” (P3, Female, 50)
Emotional Support to Clients
A few participants emphasized providing emotional support to clients who reach out to share personal challenges. They explained that listening and offering guidance helps clients feel valued and connected, reducing feelings of isolation. The following quotations highlight their views: “Some people also call us to share their grievances with us and ask for guidance.” (P4, Female, 49) “But the one thing we are doing, when we call ourselves, no one is going to talk about the HIV, we are just talking about our life. Maybe when they question me about that issue, I may know, maybe the place I am, I may know how to respond to them.” (P5, Male, 46)
Social Support
Assisting in Folder Identification at the Facility
A few participants reported assisting with administrative tasks such as identifying and organizing clients’ folders at the facility. This form of support helps streamline service delivery and ensures efficient client management. The following accounts illustrate this role: “Maybe to share the folders and things, we do that when we come to the facility.” (P9, Female, 26) “In the facility over there, I help them arrange the files. When the clients come, I help them look for the files.” (P10, Male, 44)
Willingly Supporting Clients in Need
One participant shared that she extends personal assistance to clients in need, providing social and sometimes financial support whenever possible. This gesture strengthens trust and encourages clients to continue treatment. “As said earlier, I counsel them, but when they are in any need and I can help, I willingly support.” (P6, Female, 38)
Providing Reminders and Follow-Up
A few participants explained that they remind clients of their clinic appointments and follow up on those who miss visits. They emphasized that reminders are essential to maintain adherence and continuity of care. This was described as follows: “I talk to them about how to take their medicine and encourage them to visit the hospital. I also call to remind them of their appointment days and offer counseling when they face challenges. Like talking to your own children, it can be difficult with newly diagnosed patients who fear taking their drugs.” (P2, Female, 24)
Motivating Clients
A few participants shared that they serve as motivators to clients, encouraging them to remain positive and committed to their treatment. They described offering hope, inspiration, and practical advice to help clients rebuild confidence and live fulfilling lives. This is summarized below: “I focus mainly on counseling them and giving the right motivation they need to regain their confidence. I also guide them with helpful programs and activities that inspire and encourage them to stay positive and keep moving forward.” (P12, Female, 36)
Challenges
The study explored the challenges faced by Models of Hope in the Volta Region of Ghana. Four main sub-themes emerged: personal challenges, client-related challenges, health system challenges, and societal challenges. These themes highlight the many-sided barriers encountered in their work as peer counselors supporting people living with HIV/AIDS.
Personal Challenges
The personal challenges experienced by participants included missed employment opportunities, and financial difficulties. These challenges affected their motivation, job stability, and overall wellbeing as volunteers and peer educators.
Missed Employment Opportunity
Some participants expressed frustration about being unable to continue working after the expiration of their contracts. They indicated that their roles as Models of Hope were meaningful and fulfilling, but the discontinuation of the program left them unemployed and unable to continue helping clients. This challenge is captured below: “It is very hard staying at home, but if the program is brought back, we can return to work. I see some HIV-positive children who lack proper care and medical attention. I pray the program is renewed so I can help and talk to them again.” (P2, Female, 24) “So the thing is, the program is really helpful, but the problem is they have not renewed my contract. That's really helping me because I really love the work. So if they can renew my contract and then I can start to work immediately, I would really like to help.” (P12, Female, 36)
Financial Challenge
Financial difficulties were a common concern among participants. Some reported not being paid for long periods and spending their own resources to travel for work. Despite their commitment, these unpaid wages affected their morale and ability to continue their volunteer activities. One participant narrated: “Oh, my work was good for me. Back then, I had just completed senior high school (SHS) and wasn’t doing any job. Through the support group, I was selected to be one of the Models of Hope. The only challenge I faced was not receiving my salary for a year and traveling a long distance to work.” (P9, Female, 26)
Client-Related Challenges
Client-related challenges reported by participants included clients giving wrong contact information, poor perceptions about HIV, poor attitudes toward counselors, non-adherence to treatment, and stigma among clients themselves. These challenges limited the effectiveness of follow-ups and counseling interventions.
Clients Giving Wrong Numbers and Addresses
A major difficulty encountered by the Models of Hope was the provision of incorrect phone numbers and addresses by clients. This hindered effective follow-up and delayed care continuity. Some clients even denied ever visiting the facility. This was expressed in the following quotes: “One of the main challenges we face is that the clients sometimes give us the wrong numbers. Others also change their numbers immediately they get home. This makes it difficult for us to reach them and check up on them. Others also deny that they have been to the hospital claiming that it is a wrong number.” (P4, Female, 49) “One big challenge we face is that some clients give wrong phone numbers or false directions. Even the names they provide at the hospital don’t match where they live, making it hard to trace or help them properly.” (P5, Male, 46)
Clients’ Poor Perception About HIV
Participants noted that misconceptions about HIV remain a key barrier to treatment adherence and prevention. Many clients had limited understanding of the disease and believed false information, which affected their attitude toward care. The following quotations illustrate this: “Yes. I once met a young girl, about eight years old, who got HIV from her mother through birth and breastfeeding. It made me realize how adults must act responsibly in relationships to protect unborn children. HIV isn’t visible, so everyone should live carefully and take medications seriously.” (P10, Male, 44) “There are people who do not understand the reason why they should be taking the drugs. It is not because they do not want to take the drugs but because they have been misinformed. By talking to them, we are able to make them understand the importance of taking the drug.” (P4, Female, 49)
Poor Attitude of Other Clients Towards Counselors
Some participants shared experiences of being mistreated or disrespected by clients. These attitudes were often rooted in clients’ frustration, fear, or denial of their status. Counselors, therefore, needed patience and empathy to handle such interactions effectively. As some reported: “These are some of the challenges we face. Some people who come to the facility treat us poorly, and if you don’t have patience or a strong heart, it becomes very difficult to tolerate their behavior.” (P5, Male, 46) “Yes, of course. Actually, at first, I was a bar operator. Because of this disease, some people tried to stop coming to my shop because they think if they buy things from me, they might end up contracting the same infection.” (P8, Male, 28)
Non-Adherence to Treatment
Convincing clients to adhere to treatment remains one of the biggest challenges. Participants noted that denial, fear, and misinformation make it difficult for newly diagnosed individuals to take their medication consistently. This was captured in the following narratives: “Okay. Some of the challenges is that when people are new to the system, it makes it difficult to convince them to adhere to their treatments and their medications because already hearing the name HIV or retro, like what comes to your mind that, God, I'm already dead. So what the person is thinking is that I'm already dead.” (P12, Female, 36) “The biggest challenge I face is convincing young people to take their medication. Some listen, but others don’t. Many also hide their status from their partners, which often leads to unplanned pregnancies and makes it even harder for them to disclose the truth.” (P2, Female, 24)
Stigma Against Other Clients
Participants also reported observing discrimination among clients themselves, where individuals living with HIV stigmatize others within their community. This intra-group stigma affected social and economic relationships among clients. As they explained: “They get discriminated against even when they go out to buy things from a regular shop. Some too run out of business when their status is made public since no one wants to buy from a retro patient. Some retro patients cannot even go out to buy or sell or do anything for themselves.” (P2, Female, 24) “When it comes to maybe, let me say, someone is talking against the person that is taking our drug, so we are the people in charge to hold that person in response, to maintain or to stop whatever he or she is doing against the other person. So we have the lawyers among us, the police, a lot.” (P9, Female, 26)
Health System Challenges
Health system-related challenges identified by participants included the absence of dedicated ART units, difficulty in reaching large numbers of clients, and breaches of confidentiality by some healthcare workers. These systemic weaknesses hindered effective HIV care and counseling delivery.
Absence of a Dedicated ART Unit
Some participants reported that the lack of a dedicated ART clinic within their facilities limited privacy and made counseling less effective. Without a structured space, they had to repeat the same information to multiple clients individually. As one participant shared: “The main challenge is that my facility has no clinic day, so I have to talk to clients one by one, repeating the same topic many times. Also, since there’s no separate ART unit, privacy becomes difficult, and clients often feel uncomfortable sharing personal issues when others are around.” (P12, Female, 36)
Difficulty in Reaching Large Clients
Limited organization and resources made it difficult for participants to reach and educate large numbers of clients. This affected the efficiency and coverage of HIV education and counseling activities. A participant explained: “We all need to keep learning. Without proper planning, I sometimes repeat the same information to different people, which slows progress. Reaching many people becomes difficult, and deciding what topic to cover next is challenging. This lack of organization affects my work a lot.” (P12, Female, 36)
Lack of Confidentiality
Breaches of confidentiality by healthcare workers were a serious concern for participants. They noted that some nurses disclosed patients’ HIV status, leading to stigma and mistrust in the health system. One participant stated: “One thing I want to share is that nurses in hospitals need more education on confidentiality. Some reveal patients’ information to others, causing stigma and fear. These breaches discourage people from seeking care, so I hope such actions stop for the well-being of those infected.” (P3, Female, 50)
Societal Challenges
Participants identified societal discrimination and verbal abuse as key challenges they faced in their communities. These forms of stigma affected their confidence, mental wellbeing, and relationships with others.
Discrimination
Some participants mentioned that despite efforts to educate communities, discrimination against people living with HIV remains prevalent. However, they also noted that systems were in place to report and resolve such cases through the health facility or legal means. This was highlighted as follows: “I personally haven’t faced stigmatization, but I’ve observed it mostly from some nurses whose attitudes make clients feel judged. When such cases are reported, we handle them internally by warning the accused. If unresolved, the matter is referred to higher authorities for further disciplinary action.” (P10, Male, 44) “Yes, we use both a report book and a tablet to record our work, with similar columns for tracking cases and resolutions. When a facility resolves an issue, it’s marked. If unresolved, the case is sent to the head office for further action against the person involved.” (P9, Female, 26)
Verbal Abuse From Community Members
A few participants reported experiencing verbal abuse from community members due to their HIV status. They described these experiences as emotionally distressing, though they had developed resilience over time. This was reflected in the following quote: “Verbal abuse due to my status. This happens a lot on a daily basis. I was once verbally abused by a certain boy, and I still remember it to this day. But these don’t really affect me anymore.” (P3, Female, 50)
Discussion
This study aimed to understand the responsibilities and challenges of Models of Hope in the HIV/AIDS care-giving continuum in the Volta Region of Ghana. Two main themes and ten sub-themes emerged from the data. Regarding responsibilities, Models of Hope engaged in a wide range of activities including counseling (e.g., PMTCT counseling, adherence counseling, and home visit counseling), client education (e.g., stigma sensitization, legal rights education, and first-diagnosis support), treatment and medication support, mental health counseling, and social support services such as folder identification, follow-up reminders, and motivational engagement. Concerning challenges, Models of Hope faced significant personal barriers including discrimination, missed employment opportunities, and financial hardship. Client-related challenges such as poor treatment adherence, inaccurate contact information, and internalized stigma further complicated their work. At the health system level, the absence of dedicated ART units, large client caseloads, and confidentiality breaches were notable. Societal challenges, particularly community-level discrimination and verbal abuse, also undermined their effectiveness. These findings collectively highlight both the broad scope of peer-support roles and the structural vulnerabilities that impede their impact and areas that future researchers should prioritize to strengthen HIV care delivery.
Our findings indicate that the responsibilities of Models of Hope in the HIV/AIDS care-giving continuum are extensive and multifaceted, spanning clinical, psychosocial, and legal domains. Some participants described paralegal responsibilities, consistent with literature suggesting that peer paralegals bridge gaps in legal and health services for people living with HIV.29,30 In the area of counseling, participants reported supporting mothers on prevention of mother-to-child transmission (PMTCT), providing adherence counseling, conducting home visits, and offering nutritional guidance. Research affirms that empowering mothers with knowledge about transmission risks enhances adherence and reduces transmission rates.31,32 Participants also emphasized the role of personal storytelling in counseling, which aligns with studies showing that peer narratives strengthen empathy, build trust, and demonstrate that living positively with HIV is achievable.33,34 In terms of education, Models of Hope provided first-diagnosis support, sensitization on stigma, and information on clients’ legal rights and responsibilities institutionalized within Ghana’s Models of Hope programme.35,36 Regarding medication and treatment, participants assisted with medication distribution and counseled clients against alcohol use and herbal/non-prescription remedies that may compromise ART effectiveness, consistent with evidence that substance use and traditional remedy use undermine care retention and adherence.19,37,38 Mental health support, including counseling for depression and stigma, also featured prominently, aligning with findings that peer-led counseling reduces internalized stigma and enhances emotional well-being. 39 Social support activities such as folder identification, follow-up reminders, and motivational engagement further demonstrate the holistic nature of this role. Studies confirm that structured follow-up and motivational support improve ART adherence, reduce loss to follow-up, and strengthen clients’ psychological resilience.40-46
This study identified multiple layers of challenges confronting Models of Hope. At the personal level, participants reported HIV-related stigma from both health facilities and community settings, causing emotional distress and social isolation consistent with findings by Turan et al. 47 and Stangl et al. 48 Discrimination during hiring processes and resulting financial hardship further compounded their burden, with economic insecurity linked to treatment non-adherence and poor mental health outcomes.38,49 Client-related challenges were also prominent: clients providing incorrect contact details disrupted follow-up and continuity of care, while poor perceptions about HIV, negative attitudes among clients, and peer-level stigma undermined the peer support environment.50-53 Non-adherence to ART, driven by stigma, financial strain, and emotional fatigue, remained a persistent barrier despite peer support efforts.54-56 At the health system level, the absence of dedicated ART units resulted in fragmented care and reduced confidentiality, consistent with evidence that specialized ART spaces improve adherence and patient-provider trust.57,58 Large client caseloads stretched available resources and compromised the quality of individual support,59,60 while breaches of confidentiality by healthcare staff discouraged disclosure and reduced care engagement.61,62 Finally, societal challenges including community discrimination and verbal abuse manifesting as mockery, gossip, and derogatory comments created fear, shame, and social withdrawal among both clients and peer supporters, undermining prevention efforts and treatment adherence.47,63-65
These findings have important clinical and programmatic implications beyond the Volta Region and are likely to resonate in other resource-limited, high-stigma HIV care settings across sub-Saharan Africa. The breadth of responsibilities undertaken by Models of Hope underscores the need for structured training that equips peer supporters with skills in legal literacy, mental health first aid, and adherence counseling, rather than relying on informal knowledge transfer. The identified challenges particularly confidentiality breaches, inadequate ART infrastructure, and psychosocial burden on peer supporters call for targeted health system strengthening. Dedicated ART units, strict confidentiality protocols, and integration of professional mental health support into HIV care teams are recommended to protect both clients and peer supporters.58,66 Furthermore, given that financial hardship and workplace discrimination were major personal challenges, social protection programs and inclusive employment policies should be incorporated into national HIV response strategies. 49 Anti-stigma interventions at community and facility levels remain essential and should be reinforced through multi-level campaigns that combine education, policy enforcement, and peer-led sensitization.47,63 Collectively, these findings support a model of HIV care that is client-centered, rights-based, and attentive to the well-being of peer supporters themselves.
Strengths and Limitations of the Study
A major strength of this study is the detailed reporting of methods and procedures, which lends credibility to the findings and supports their transferability to similar settings. However, the qualitative design and small sample size mean that findings should be interpreted with caution and are not statistically generalizable. Future studies using larger, mixed-methods designs are recommended to validate and extend these findings across diverse HIV care contexts in Ghana and the wider region.
Conclusion
In conclusion, the findings highlight the critical roles and responsibilities of peer supporters as models of hope for people living with HIV (PLHIV). Their lived experiences, both positive and negative, shape their capacity to provide essential support, counseling, and education. Despite the positive impact of the work of models of hope, challenges such as discrimination, stigma, and health system barriers persist, underscoring the need for ongoing support and resources for both peer supporters and their clients. Overall, retooling and capacitating these individuals is instrumental in fostering resilience and promoting the health and well-being of PLHIV in the Volta region and the country at large.
Footnotes
Acknowledgements
We acknowledge the contributions of our study participants for the realization of this study and its publication thereof.
Ethical Considerations
Ethical approval for this study was obtained from the Ethics Review Committee of the University of Health and Allied Sciences (UHAS-REC A.4 [020]23-24).
Consent to Participate
Written informed consent was obtained from all participants before interviews commenced. All participants were informed of their right to withdraw at any time. Confidentiality and anonymity were strictly maintained.
Author’s Contribution
Angela Serwaa Opoku (ASO) conceptualized the study, developed the interview guide, and co-conducted the data collection. She also participated in data transcription, coding, analysis, and drafting of the manuscript. Festus Dwomoh (FD) contributed to the data collection by co-moderating the interviews, and was actively involved in transcription, coding, thematic analysis, and interpretation of the findings. Emmanuel Manu (EM) supervised the entire research process, critically reviewed the interview guide to ensure its reliability, and provided guidance during data analysis, including resolving discrepancies between coders. He also contributed to revising the manuscript for important intellectual content. Elvis Enowbeyang Tarkang (EET) contributed to the overall design of the study, provided methodological guidance, and critically reviewed and edited the manuscript. All authors read and approved the final version of the manuscript and agreed to be accountable for all aspects of the work.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement
The datasets used and/or analyzed during the current study are available from the corresponding author upon reasonable request.