Substantial evidence shows that support groups for people living with the Human Immunodeficiency Virus (PLHIV) are crucial in increasing adherence to and retention in HIV care and treatment services, addressing literacy and psychosocial needs (1–5), and managing stress and stigma and improving wellbeing. They act as a space to practice and form new behaviors that are necessary for coping and living healthy with the virus (6). PLHIV support groups are voluntary and designed to fulfill a common purpose to address a shared challenge (e.g., HIV) that alters the normal course of life (1, 7). In sub-Saharan Africa, support groups are extensively accepted as an integral part of HIV care and treatment programs (3, 6) due to their significant contribution to increasing PLHIV’s wellbeing as a result of lower HIV-related illnesses and deaths among participants than non-participants (8).

In Tanzania, support groups for PLHIV exist, and consist of three age-appropriate peer groups: (a) children (age 0–14 years), (b) adolescents or teen clubs (age 15–17 years), and (c) adults (age ≥ 18 years). The support groups for PLHIV are created on the basis that PLHIV health outcomes will improve when clinical services received are complemented by quality social support and age-appropriate information and attention to treatment, adherence, HIV status disclosure, positive living, and life skills for healthy living and overall welfare (4). All PLHIV are informed about and encouraged to join the support groups for PLHIV (9) to easily gain access to treatment support and literacy as well as socialize and normalize their experience of living with HIV (4, 5).

Despite the known importance of these groups, limited evidence exists on the factors that affect participation in the PLHIV support groups for different population groups such as HIV-positive caregivers of orphans and vulnerable children (OVC) (1–3, 5). Caregivers are considered a unique population with special needs because they care for their loved ones and other individuals who cannot live independently, but they are not prepared or equipped for the caregiving job (10). Research evidence reveals that caregivers face significant economic, physical, behavioral, and psychological vulnerabilities in the caregiving process (10–12). These vulnerabilities are further compounded by HIV (13, 14). This ultimately increases their risk of mental health issues as well as chronic stress because the caregiving role alters their work, relationships, and friendships (15, 16). Indeed, a recent empirical study in India found that caregivers were more likely to have depression and poor self-rated health than non-caregivers (17).

It is evident that to achieve HIV epidemic control, it is critical to target everyone with key interventions such as the PLHIV support groups for better health outcomes. Given the voluntary nature of participation in these groups, it is crucial to target PLHIV at a higher risk of treatment interruption (7). Therefore, this study aimed to identify factors associated with participation in support groups for PLHIV among HIV-positive caregivers of OVC in Tanzania, with the goal of providing targeted support to those who may benefit the most.

As already highlighted, this study aimed to investigate the factors associated with caregivers’ participation in support groups for PLHIV in Tanzania. It is crucial to understand the factors that influence participation in these groups, given the well-established benefits they provide (1–5). Identifying these factors can help develop targeted support strategies, particularly for those at higher risk of interruption in treatment. The study revealed that several factors were significantly associated with caregivers’ participation in the PLHIV support groups, including the level of household hunger, place of residence, physical or mental disability, age, marital status, and education level.

The study found that a majority (84.2%) of the caregivers were active participants in the PLHIV support groups, indicating generally a high level of engagement with the group support services. However, the study also revealed that a significant portion of the caregivers (15.8%) who were receiving ART lacked complementary support from the support groups for PLHIV. This proportion ranged from 12.3% among caregivers in households with severe hunger to 29.7% among those with physical or mental disabilities.

From the multivariable analysis, the higher odds of utilization of the support groups for PLHIV among caregivers living in urban areas compared to those in rural areas may be due to various factors including the fact that many PLHIV groups are established in selected high-volume facilities, which are more placed in urban than in rural areas. Also, it may be attributed to the shorter travel distances to the locations where PLHIV groups meet, and better transportation infrastructures which may be more so in urban than in rural areas. In contrast, rural caregivers may face transportation challenges, long distances to the health facilities or other locations where the groups meet, and inadequate resources for transportation (24, 25), which may limit their utilization of PLHIV support group services. These observations of higher likelihood of utilization of the support groups for PLHIV in urban than in rural areas have been found in similar studies (26–28). Strategies aimed at improving access to HIV support groups for rural caregivers may include provision of targeted support and resources for initiation of new support groups for PLHIV in health facilities (and communities) where they do not exist, and community-based initiatives to improve health literacy and awareness. It is crucial to address these barriers and ensure that rural residents have equal access to health services, including support groups for PLHIV.

Caregivers with physical or mental disabilities were significantly less likely to participate in the support groups for PLHIV than those without the disabilities. Although the disabled caregivers are few, accounting for less than 1% (n = 478) of the sample, it is already well recognized within the framework of universal health coverage (UHC) that service provision including those aimed at ending the AIDS epidemic, should leave no one behind (29). Therefore, specialized strategies should be devised to reach this group, given that disabled people are disadvantaged in many dimensions, including HIV status disclosure (30, 31), access to information, counseling and treatment (32, 33), obtaining HIV test results (32), ART utilization (33, 34), adherence to ART (35), and more (36–39). Further, stigma and discrimination associated with disability are widespread (40, 41), and can be significant barriers to service access in this group (30, 31, 42–44). Unfortunately, the adverse effects of disability are cascading, as one study found that children cared for by disabled caregivers are also less likely to access services (45) and caregiver’s poor health implies children’s poor health (46). Therefore, efforts to address inequalities in HIV care and treatment services should prioritize disability as one of the critical factors requiring urgent attention because such small groups are likely to be left behind in the future trajectories of the HIV epidemic.

Caregivers residing in households with moderate hunger were found to be significantly less likely to participate in the support groups for PLHIV than those in little to no hunger households (food secure). Other studies have also shown that caregivers have to face a lot of struggle with food insecurity due to the additional economic pressure of caregiving obligations (47–49). This suggests that such caregivers may prioritize securing food for their families, leaving them with limited time and resources to attend PLHIV support groups. Therefore, providing economic empowerment interventions, including social protection (e.g., direct food support) to address household hunger is likely to improve caregivers’ participation in PLHIV support groups, ultimately contributing to their overall wellbeing.

The present study observed that while caregivers with primary education were significantly more likely to participate in the PLHIV groups, those with secondary education or more were significantly less likely to participate compared to those with no formal schooling. While education can potentially reduce treatment misconceptions (50), and consequently improve service uptake (34), the likely mechanism underlying the observed direction of the association was unexpected. It is unclear whether those with higher levels of education may be engaged in commitments such as formal employments thereby lacking the time to participate in the groups, or if they feel superior to associate with less educated individuals. Further research is needed to explore and explain this association, so that barriers to participation can be addressed (e.g., by adjusting meeting times or places to cater to those with employment).

Marital status was found to be another significant factor affecting caregivers’ participation in support groups for PLHIV. Specifically, widowed, and unmarried or single caregivers were significantly less likely to participate in the groups compared to those who were married or living together with their spouses. This implies that marital unions may provide higher social support, which is associated with better HIV treatment adherence (51, 52), explaining the observed association. Therefore, it is crucial to provide targeted emotional or psychosocial support to widowed and unmarried or single caregivers to improve their participation in the PLHIV groups for their overall wellbeing.

Finally, the study found a negative association between age and participation in the PLHIV support groups in such a way that each of the age groups above 29 years had lower odds of participating in the groups compared to the age group 20–29 years. While this observation suggests the need to prioritize older caregivers in strategies to improve participation in the PLHIV groups, the underlying reason for this association remains unclear. Thus, further research is needed to investigate and clarify the factors contributing to this trend. Understanding these factors could help in developing targeted interventions to improve participation among older caregivers and ultimately improve their overall wellbeing.

The study found that majority of the caregivers (84.2%) were active participants in the support groups for PLHIV in Tanzania. Participation was significantly associated with several factors, including the level of household hunger, place of residence-urban/rural, mental, or physical disability, age, marital status, and educational attainment. However, 15.8% of the caregivers were not participating in the PLHIV support groups, with the proportion rising to 29.7% among disabled caregivers.

To improve participation in the PLHIV support groups, tailored support should be provided to caregivers who are physically or mentally disabled and those who live in rural areas. Additionally, targeted support should be given to caregivers aged 30 or older, widowed, or unmarried, food insecure, and those with secondary education or more. These strategies could help increase participation rates among caregivers who may face specific barriers to accessing support groups. These findings highlight the need for targeted interventions to ensure that all caregivers LHIV are given the necessary support including linkage in PLHIV support groups to improve treatment outcomes.

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

The studies involving humans were approved by the Medical Research Coordinating Committee (MRCC) of the National Institute for Medical Research (NIMR) in Tanzania. The studies were conducted in accordance with the local legislation and institutional requirements. The participants provided their written informed consent to participate in this study.

LK conceptualized the problem and critically reviewed the manuscript for intellectual content. AE participated in problem conceptualization, conducted statistical analysis, conducted literature review, wrote the first draft of the manuscript, and revised subsequent versions. JC prepared the data, participated in statistical analysis, and critically reviewed the manuscript for intellectual content. RM and TM conducted data management and critical review of the manuscript for intellectual content. AA participated in statistical analysis and critically reviewed the manuscript for intellectual content. ATe, AB, RF, ATa, GM, MB, EK, TV, and EL critically reviewed the manuscript for intellectual content. All authors contributed to the article and approved the submitted version.

The ACHIEVE project is funded by the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) through the United States Agency for International Development (USAID). This work was conducted as a part of the authors’ responsibilities under their employment.

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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