Self-reported stigma and other challenges to HIV treatment adherence for clients in their first 6 months after treatment initiation in Zambia

Self-reported stigma and other challenges to HIV treatment adherence for clients in their first 6 months after treatment initiation in Zambia | medRxiv /* */ /* */ <!-- <!-- /*! * yepnope1.5.4 * (c) WTFPL, GPLv2 */ (function(a,b,c){function d(a){return"[object Function]"==o.call(a)}function e(a){return"string"==typeof a}function f(){}function g(a){return!a||"loaded"==a||"complete"==a||"uninitialized"==a}function h(){var a=p.shift();q=1,a?a.t?m(function(){("c"==a.t?B.injectCss:B.injectJs)(a.s,0,a.a,a.x,a.e,1)},0):(a(),h()):q=0}function i(a,c,d,e,f,i,j){function k(b){if(!o&&g(l.readyState)&&(u.r=o=1,!q&&h(),l.onload=l.onreadystatechange=null,b)){"img"!=a&&m(function(){t.removeChild(l)},50);for(var d in y[c])y[c].hasOwnProperty(d)&&y[c][d].onload()}}var j=j||B.errorTimeout,l=b.createElement(a),o=0,r=0,u={t:d,s:c,e:f,a:i,x:j};1===y[c]&&(r=1,y[c]=[]),"object"==a?l.data=c:(l.src=c,l.type=a),l.width=l.height="0",l.onerror=l.onload=l.onreadystatechange=function(){k.call(this,r)},p.splice(e,0,u),"img"!=a&&(r||2===y[c]?(t.insertBefore(l,s?null:n),m(k,j)):y[c].push(l))}function j(a,b,c,d,f){return q=0,b=b||"j",e(a)?i("c"==b?v:u,a,b,this.i++,c,d,f):(p.splice(this.i++,0,a),1==p.length&&h()),this}function k(){var a=B;return a.loader={load:j,i:0},a}var l=b.documentElement,m=a.setTimeout,n=b.getElementsByTagName("script")[0],o={}.toString,p=[],q=0,r="MozAppearance"in l.style,s=r&&!!b.createRange().compareNode,t=s?l:n.parentNode,l=a.opera&&"[object Opera]"==o.call(a.opera),l=!!b.attachEvent&&!l,u=r?"object":l?"script":"img",v=l?"script":u,w=Array.isArray||function(a){return"[object Array]"==o.call(a)},x=[],y={},z={timeout:function(a,b){return b.length&&(a.timeout=b[0]),a}},A,B;B=function(a){function b(a){var a=a.split("!"),b=x.length,c=a.pop(),d=a.length,c={url:c,origUrl:c,prefixes:a},e,f,g;for(f=0;f<d;f++)g=a[f].split("="),(e=z[g.shift()])&&(c=e(c,g));for(f=0;f<b;f++)c=x[f](c);return c}function g(a,e,f,g,h){var i=b(a),j=i.autoCallback;i.url.split(".").pop().split("?").shift(),i.bypass||(e&&(e=d(e)?e:e[a]||e[g]||e[a.split("/").pop().split("?")[0]]),i.instead?i.instead(a,e,f,g,h):(y[i.url]?i.noexec=!0:y[i.url]=1,f.load(i.url,i.forceCSS||!i.forceJS&&"css"==i.url.split(".").pop().split("?").shift()?"c":c,i.noexec,i.attrs,i.timeout),(d(e)||d(j))&&f.load(function(){k(),e&&e(i.origUrl,h,g),j&&j(i.origUrl,h,g),y[i.url]=2})))}function h(a,b){function c(a,c){if(a){if(e(a))c||(j=function(){var a=[].slice.call(arguments);k.apply(this,a),l()}),g(a,j,b,0,h);else if(Object(a)===a)for(n in m=function(){var b=0,c;for(c in a)a.hasOwnProperty(c)&&b++;return b}(),a)a.hasOwnProperty(n)&&(!c&&!--m&&(d(j)?j=function(){var a=[].slice.call(arguments);k.apply(this,a),l()}:j[n]=function(a){return function(){var b=[].slice.call(arguments);a&&a.apply(this,b),l()}}(k[n])),g(a[n],j,b,n,h))}else!c&&l()}var h=!!a.test,i=a.load||a.both,j=a.callback||f,k=j,l=a.complete||f,m,n;c(h?a.yep:a.nope,!!i),i&&c(i)}var i,j,l=this.yepnope.loader;if(e(a))g(a,0,l,0);else if(w(a))for(i=0;i (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0];var j=d.createElement(s);var dl=l!='dataLayer'?'&l='+l:'';j.src='//www.googletagmanager.com/gtm.js?id='+i+dl;j.type='text/javascript';j.async=true;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-P4HH5NV'); Skip to main content Home About Submit ALERTS / RSS Search for this keyword Advanced Search Self-reported stigma and other challenges to HIV treatment adherence for clients in their first 6 months after treatment initiation in Zambia View ORCID Profile Nancy Scott , Aniset Kamanga , Allison Morgan , Linda Sande , Taurai Makwalu , Kari Radoff , Anushka Reddy Marri , Prudence Haimbe , Priscilla Lumano-Mulenga , Hilda Shakwelele , Sydney Rosen doi: https://doi.org/10.1101/2025.08.17.25333875 Nancy Scott a Department of Global Health, Boston University School of Public Health , 801 Massach us etts Ave, Boston, MA, USA Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Nancy Scott For correspondence: nscott{at}bu.edu Aniset Kamanga b Clinton Health Access Initiative , 175 Kudu Road, Lusaka, Zambia Find this author on Google Scholar Find this author on PubMed Search for this author on this site Allison Morgan a Department of Global Health, Boston University School of Public Health , 801 Massach us etts Ave, Boston, MA, USA Find this author on Google Scholar Find this author on PubMed Search for this author on this site Linda Sande c Health Economics and Epidemiology Research Office, Faculty of Health Sciences, University of the Witwatersrand , 32 Princess of Wales Terrace, Parktown Johannesburg, South Africa , 2193 Find this author on Google Scholar Find this author on PubMed Search for this author on this site Taurai Makwalu b Clinton Health Access Initiative , 175 Kudu Road, Lusaka, Zambia Find this author on Google Scholar Find this author on PubMed Search for this author on this site Kari Radoff a Department of Global Health, Boston University School of Public Health , 801 Massach us etts Ave, Boston, MA, USA Find this author on Google Scholar Find this author on PubMed Search for this author on this site Anushka Reddy Marri a Department of Global Health, Boston University School of Public Health , 801 Massach us etts Ave, Boston, MA, USA Find this author on Google Scholar Find this author on PubMed Search for this author on this site Prudence Haimbe b Clinton Health Access Initiative , 175 Kudu Road, Lusaka, Zambia Find this author on Google Scholar Find this author on PubMed Search for this author on this site Priscilla Lumano-Mulenga d Ministry of Health , Haille Selassie Avenue, Ndkeke House, Lusaka, Zambia Find this author on Google Scholar Find this author on PubMed Search for this author on this site Hilda Shakwelele b Clinton Health Access Initiative , 175 Kudu Road, Lusaka, Zambia Find this author on Google Scholar Find this author on PubMed Search for this author on this site Sydney Rosen a Department of Global Health, Boston University School of Public Health , 801 Massach us etts Ave, Boston, MA, USA c Health Economics and Epidemiology Research Office, Faculty of Health Sciences, University of the Witwatersrand , 32 Princess of Wales Terrace, Parktown Johannesburg, South Africa , 2193 Find this author on Google Scholar Find this author on PubMed Search for this author on this site Abstract Full Text Info/History Metrics Data/Code Preview PDF Abstract Background The first six months after initiating or re-initiating antiretroviral therapy (ART) for HIV is the highest risk period for disengagement from care. Little qualitative research has explored ART clients’ experiences in this period in the era of universal ART eligibility. We aimed to understand clients’ challenges in the early treatment period in order to identify potential interventions that could both meet ART clients’ needs and optimize efficiency in this time of declining resources. Methods We surveyed adults who were initiating or had recently initiated (<6 months) ART at 12 healthcare facilities in two provinces of Zambia. A subset of survey respondents who had experienced or anticipated experiencing adherence challenges were recruited to participate in focus group discussions (FGDs) up to 12 months after the survey. FGDs included up to 10 participants each and were led by facilitators trained in qualitative methods. Results Fifteen FGDs were conducted (n=126 participants, median age 35). Themes emerged at the individual, interpersonal, facility, and community levels. Stigma related to HIV was the most common theme at all levels. Participants expressed self-stigma, fear of disclosure to family and acquaintances, concerns about what would happen to romantic relationships if their partner learned of their status, and fear of community gossip. Food insecurity was common. Clinic congestion, lack of privacy, and unsympathetic providers emerged as facility-level barriers. Participants mentioned lack of transport money and work conflicts as other impediments. Religious leaders and reliance on traditional healers discouraged ongoing engagement in care. Discussion Zambian ART clients faced multifaceted barriers to remaining in care during the critical first few months, with particular concern about the insidious roles of stigma influencing their behavior. While societal stigma remains stubbornly difficult to offset, clients’ early clinic experiences—often marked by unwelcome disclosure, facility inefficiency that is perceived as disrespect, and negative provider interactions—and financial and logistical challenges may be amenable to improvement by adapting existing evidence-based interventions. Introduction Achieving continuous and lifelong engagement in HIV treatment for people living with HIV is a critical aspect of global efforts to combat the HIV/AIDS pandemic. The early treatment period, generally defined as the first six months after newly initiating antiretroviral therapy (ART) or re-initiating ART after disengagement( 1 ), is the highest risk interval for both temporary treatment interruptions and long-term disengagement from care. In Zambia, we estimated that 33% of initiating clients had disengaged from care by 6 months, and only 51% remained continuously in care, without any interruptions >28 days, during that period( 2 ). Health system advances that have been demonstrated to improve long-term engagement, such as differentiated service delivery models( 3 ), are generally not available to clients in the early treatment period, as eligibility usually requires at least 6 months of experience on ART and documented viral load suppression( 4 , 5 ). For the most part, health systems continue to rely on traditional approaches such as requiring frequent clinic visits and adherence counseling sessions to promote engagement in the first six months( 6 ). The high attrition from care seen during the first six months after starting ART suggests that clients face more challenges or different barriers during this period than later in their treatment journeys. Little qualitative research has explored clients’ experiences in the months immediately after initiation in the era of universal ART eligibility and frequent re-engagement, however( 7 ). A systematic review of the qualitative literature on long-term retention in ART programs in Africa identified poverty and unpredictable life events, self- and social-identity, a “punishing and uninviting” healthcare system, and the challenge of daily medication adherence as the major reasons for disengagement from care during the pre-universal test-and-treat era, when most ART clients had started treatment with more advanced illness and were ART-naïve( 8 ). In the current universal treatment era, all individuals with HIV are eligible for and encouraged to start ART as quickly as possible, and a majority of those who present for initiation are treatment experienced( 9 ). As both treatment guidelines and the population initiating treatment have changed, it is reasonable to expect client experiences and barriers to engagement to have evolved with them. In an era of funding reductions for global HIV programming, moreover, it is more critical than ever to increase facilities’ operational efficiency by helping them to identify effective interventions to sustain and improve early retention in care ( 10 ). By pinpointing effective practices and leveraging proven strategies, HIV programs have an opportunity to optimize resources, minimize service disruptions, and maintain progress toward critical treatment targets[10]. Qualitative inquiry is an effective tool to explore lived experiences and nuanced concepts such as stigma, discrimination, coping mechanisms, and social support networks. We qualitatively explored the barriers to remaining on treatment among people living with HIV in the first six months after initiation in Zambia, using the client perspective to reveal changes to the barriers they face during the early treatment period and to identify opportunities to improve retention and continuity of care to foster program sustainability. Methods Study design and setting PREFER-Zambia was a sequential, mixed-methods study conducted as part of the Retain6 project, which aims to identify strategies to improve outcomes during the first six months on ART in Zambia and South Africa. From September 2022 to April 2023, PREFER quantitatively surveyed adults who were initiating, re-initiating, or had recently initiated (<6 months) ART at 12 healthcare facilities in Zambia. PREFER study sites, which were located in Lusaka and Central Provinces and were purposively selected based on ART patient volume, setting (rural and urban), and the differentiated service delivery models offered, are described in previous publications( 11 , 12 ). ART is provided free of charge at Zambian clinics. Sampling and recruitment Focus group discussions (FGDs) were conducted at 7 of the 12 PREFER study facilities in Zambia, selected to allow sufficient FGD enrollment and represent both urban and rural areas. The FGD study sites included three facilities located in Lusaka Province, consisting of two first level hospitals and one rural health clinic, and four in Central Province, consisting of two district hospitals situated in a peri-urban environment and two urban health centers. We aimed to conduct a total of 15 FGDs with 8-10 participants per group, the number needed to reach saturation, a measure of qualitative validity ( 13 ). Consent for PREFER survey participation included agreement to be contacted up to 12 months after survey enrollment if we wished to invite participants to qualitative FGD. Potential FGD participants were identified from the full PREFER survey sample based on their quantitative survey responses to questions about experiencing or expecting to experience challenges in remaining on HIV treatment. This included those who responded that they had missed any scheduled visits in the past year by 2-3 days or more; expected having difficulty in taking their medications every day or picking up their medication supplies; or reported that the care that they received in the clinic was worse than they expected it to be. Once all potential FGD participants had been identified from the overall PREFER sample, the subsample was stratified by sex to allow for single-sex focus groups to be conducted. The final sample in each facility-based FGD depended on the number of potential participants from that facility. At most sites, females were randomly selected from the list of potential FGD participants, while the full list was used for males, of whom fewer had been enrolled in the PREFER quantitative survey. Participants were then contacted by their preferred mode (telephone or email) and invited to participate. Data collection and management Before commencing each FGD, all participants were briefly screened to re-confirm eligibility and undergo a second informed consent process, specific to the FGD activity. We re-captured participants’ demographic characteristics and assigned the same PREFER unique study ID to allow linkage of demographic data from the quantitative survey. FGDs were led by two study staff conversant in both English and the appropriate local languages and trained in human subjects’ protection and FDG methodologies. One study team member took notes and one led the FGD using a discussion guide developed from specific issues or concerns that participants brought forward in the quantitative survey (Supplementary file 1). Interview questions focused on facilitators of and barriers to starting and adhering to HIV treatment in the first 6 months of care. All FGDs were single-sex per the guidance of the in-country principal investigator [AK] that separating by sex would be culturally appropriate, create a more comfortable environment, and allow for more open responses. FGDs lasted approximately two hours. Participants received transport reimbursement and a lunch allowance equivalent to US $6.50 (170 ZMW). All FDGs were audio recorded and directly transcribed and translated to English for analysis. Data quality and reflexivity statement To mitigate potential biases brought by the investigators and data collectors, the study team members established trust and rapport with participants before commencing the FGD by transparently identifying their motives and the study goal. Data collectors were trained by study investigators [JK, NS] in qualitative methods, to be active listeners, and to probe in ways that validated participants’ experiences. The local principal investigator [AK] provided oversight and support to data collectors in the field. To ensure data quality, transcripts from the first two FGDs were reviewed for thoroughness and completeness by two study investigators [NS, JK]. The coding and analysis were conducted by a study investigator [NS] and research fellow [KR] and results were interpreted with input from all study authors. Analysis and interpretation For the analysis, we first described aggregate demographic characteristics of FGD participants using linked quantitative survey data. The qualitative codebook was developed using an inductive-deductive approach, wherein most codes were identified jointly by the study team [KR, NS] a priori and aligned with the FGD guide and literature but additional codes were allowed to emerge to form a final analytical codebook. Both coders [KR, NS] coded an initial set of transcripts and compared coding. Discrepancies were discussed; one coder [KR] then completed the coding. We then conducted a content analysis in which emerging themes were grouped into larger themes( 14 ). Data were reviewed to ensure that emerging themes were not driven by individual FGDs; only those that emerged across multiple or all groups were considered as key emerging themes. Emerging themes were organized using the Social-Ecological Model (SEM) framework, which situates individuals within layers of influence, from personal factors to broader societal and environmental factors( 15 ). With the broad understanding that all barriers are interconnected, we adapted the SEM slightly and organized results as barriers experienced by clients at the individual, interpersonal, health facility, and community levels ( Fig 1 ). The SEM framework allowed us to better understand the multi-layered and interconnected barriers that clients experience within the first six months on treatment and provided a structure in which to identify opportunities for intervention. Themes were similar across male and female FGDs, so results were not stratified by sex, but differences are noted when the emergent theme was driven predominantly by one sex. Results are presented in aggregate form, with supporting illustrative quotations when appropriate. Download figure Open in new tab Fig 1. Social Ecological Model Framework as applied to this analysis In the results, we briefly describe description of participants’ characteristics, then present emerging barriers by SEM domain. In the discussion, to enhance the interpretation and actionability of our qualitative findings, we mapped key barriers identified through the socioecological model onto the COM-B model (capability, opportunity, and motivation for behavior change) ( 16 ). Using the COM-B framework allowed us to identify specific behavioral drivers influencing care-seeking in the first six months of ART, and thus potential areas for targeted, evidence-based intervention. Ethical considerations Ethics approval was obtained from the Boston University Medical Campus IRB (H-42903) in the United States; ERES Converge IRB (2022-June-007) and National Health Research Authority (NHRA000007/10/07/2022) in Zambia; and the Wits University Human Research Ethics Committee (M220535) in South Africa. Written informed consent was obtained via signature or a thumbprint from all participants. FGDs were conducted in private clinical or community settings, and the importance of respect and confidentiality was reviewed with all participants prior to commencing the FGD. Participants were linked to the PREFER survey results using their unique study ID only. Only study staff essential to the data processing had access to the data. PREFER-Zambia was registered at Clinicaltrials.gov as NCT05454852 . Results Characteristics of participants Fifteen focus groups were conducted with a total of 126 participants. Demographic characteristics reflect the status of the participants at the time of enrollment in the PREFER study, up to 12 months prior to participating in the FGDs ( Table 1 ). Participants had a median age of 35 years; just over half were female. Nearly half (46%) reported that they were newly initiating ART or within one month of initiating when they enrolled in the study; the rest had been on ART up to 6 months at enrollment. About 57% reported food insecurity (participants or other household members sometimes or often going without food) and nearly 88% reported that they would find it difficult or very difficult to access the equivalent of US$4 (100 Zambian Kwacha) if needed for health-related expenses, such as transport to a clinic. View this table: View inline View popup Download powerpoint Table 1: Demographic characteristics of FGD participants in Zambia (n=126) Qualitative results revealed important insights into challenges faced by clients in the first 6 months of HIV treatment. Structural and social barriers that emerged included food insecurity, stigma at all levels of the SEM, transportation, work conflicts, and a lack of family support. Some facility-level barriers were mentioned but were not a major area of a concern for participants. Individual and interpersonal levels Individual and interpersonal barriers to remaining in care are detailed in Table 2 . At the individual level, the theme that emerged most strongly was self-stigma, or the internalization of negative stereotypes and social prejudices. Participants discussed the challenges of confronting and accepting their diagnosis and adhering to daily medication therapy. Participants here also reported vacillating between acceptance and denial, potentially leading to inconsistent treatment engagement. Food insecurity also emerged as a barrier at the individual level, reflecting the high proportion of participants (57%) who reported going without food sometimes or often. Participants reported increases in appetite when initiating treatment and had insufficient food. Side effects and missing doses were also attributed to not having food. View this table: View inline View popup Table 2. Client reported individual- and interpersonal-level challenges to HIV adherence in the early treatment period At the interpersonal level, stigma was also the dominant theme, particularly as it relates to disclosure within intimate relationships. Participants from nearly all of our female-only FGDs described the reactions and perceptions of those with whom they are in close relationships or the prospect of romantic relationships as factors affecting ART continuation. Non-disclosure of HIV status was frequently reported and is often associated with stigma and a fear of abandonment. Participants described that fear of unwanted disclosure in close relationships, including marriages, leads to hiding behaviors, reticence about care seeking, and sometimes, treatment interruption. In addition, social support, both positive and negative, emerged as an important theme for clients during the first 6 months of ART. Perceived lack of support and intra-familial stigma were reported as negatively impacting adherence, while, conversely, positive support from family and friends was described as motivating for ART adherence. Participants reported, for example: “My family even knows what time I take the medication, so they are always encouraging me to take the HIV drugs at the right time.” -male “If you have friends and explain the problem to them, friends can encourage and help give strength, rather than being alone which can cause heartbreak.” –female Facility level At the facility level, three themes arose: anticipated stigma, lack of respect by healthcare providers, and inefficient clinic processes leading to long waiting times ( Table 3 ). Participants feared non-consensual disclosure of their status and subsequent experience of stigma. They explained that many people feel anxious that they may encounter people that they know when attending clinic, who in turn may disclose their status without their consent. View this table: View inline View popup Table 3. Client reported facility-level challenges to HIV adherence in the early treatment period In describing providers’ lack of respect, participants used language that suggested a perception of being treated like children or prisoners. Participants also explained that having a negative encounter with a provider can discourage remaining in care. They desired compassion and understanding, especially with missed appointments, and wanted to be attended to by providers with kind, inquisitive dispositions. Community level Stigma also emerged as a salient theme at the community level, alongside scheduling conflicts, transportation challenges, and religion and traditional culture ( Table 4 ). Clients described experiencing and anticipating ridicule, criticism, and gossip and expressed fear of being singled out by community members. They explained that some people choose to bypass nearby clinics to avoid disclosure and gossip within the community, which can contribute to increased transportation and opportunity costs as they travel to more distant facilities. View this table: View inline View popup Table 4. Client reported community-level challenges to HIV adherence in the early treatment period Many clients reported encountering logistical difficulties with work schedules in the initial 6 months following treatment initiation, which is a period when frequent clinic visits are required. Many feared disclosure of their status and job loss if they request time off to attend clinic visits. Some struggled to pick up medications due to their work or school commitments and being denied time off. Others found it challenging to adhere to scheduled clinic visits, especially if they travel for work. Clients reported that for many of those who travel for work, though not all, it can be easier to stop completely or to present at a different facility as a ‘new’ patients than to navigate the transfer process. When discussing costs of seeking care, lack of funding for transportation was raised as a concern, though participants generally agreed that costs incurred at the facility itself are not a barrier to early adherence, as ART is given free of charge. Lastly, religion and culture emerged as an important theme that influenced treatment retention during the early treatment period. Participants in many of the FGDs explained that many prophets, pastors, and online churches promote prayer to cure HIV instead of, not in conjunction with, ART. Participants explained that many people are also encouraged to first or exclusively utilize traditional curative practices, mentioning visiting witch doctors, taking herbs, or drinking the fat of a crocodile as traditional remedies for HIV. Discussion Our study contributes uniquely to the existing literature by specifically examining the barriers and facilitators experienced during the critical six-month period following ART initiation, an interval which remains understudied despite its recognized importance for long-term treatment success ( 6 ). We qualitatively explored the challenges and lived experiences of clients in the first six months after initiating or re-initiating ART in two provinces in Zambia. We found that, despite the more than two decades since large-scale treatment programs were launched and the near universality of treatment access in countries like Zambia, stigma remains a potent obstacle at all levels of the SEM. Participants described stigma as both internalized stigma (experiencing self-judgment) and as external stigma (anticipating or experiencing judgment from others within their close relationships, at facility visits, and at various interactions within communities). At the individual level, the fear of being judged or rejected if one’s HIV status is disclosed led to intentional non-disclosure, often disrupting treatment. This is particularly evident in the interpersonal domain, where non-disclosure was driven by the desire to preserve romantic relationships or avoid conflict within marriages. These findings, primarily reported by women, align with other research in similar contexts where women report internalized stigma and non-disclosure of HIV status as barriers that influence care seeking and treatment adherence ( 17 , 18 )[19]. At the community-level, both our findings and other studies in sub-Saharan Africa highlight the pervasive influence of community stigma on ART retention ( 19 , 20 ). A 2017 review identified stigma as the third most frequently patient-reported barrier to ART adherence in sub-Saharan Africa, preceded only by forgetfulness and food insecurity( 21 ). While it is well documented that stigma can negatively affect HIV outcomes and continued engagement in care( 22 – 24 ), we found only one longitudinal study in the literature --conducted among patients in the United States-- that examined the effects of experienced and perceived stigma during the early treatment period on treatment outcomes( 25 ). It concluded that internalized stigma and depression in the early treatment period mediate HIV outcomes, including viral load suppression. While stigma remains stubbornly persistent and food insecurity a pervasive challenge, it is noteworthy that previously dominant barriers such as concerns about side effects, misconceptions regarding ART, and misinformation about treatment duration ( 26 ) were rarely mentioned by our participants. This suggests substantial progress in patient education and drug tolerability, reflecting important advancements in ART delivery. In an era marked by diminishing funding for global HIV programming, identifying efficient interventions and strategically adapting them to address early retention challenges is critical. Responding directly to barriers identified by at-risk patients, such as stigma, food insecurity, and lack of psychosocial support, may help facilities target interventions to those at greatest need and thus improve resource allocation. To make our findings more practical and actionable for providers, we applied the COM-B model (capability, opportunities, motivation for behavior change) to our results to pinpoint the behavioral drivers and identify evidence-based interventions that may be adapted for use among clients in the early treatment period. Capability , which includes both psychological (knowledge, resilience) and physical (health, physical skills) components, aligns closely with barriers at the individual level. Psychological capability was particularly affected by internalized stigma, resulting in ambivalence about diagnosis acceptance. While acceptance is a pivotal factor in motivating participants to initiate and sustain treatment ( 27 ), participants described vacillating between acceptance and denial, which could lead to inconsistent adherence. Enhancing psychological capability could involve interventions such as counseling or structured peer-support to bolster mental resilience and self-acceptance post-diagnosis ( 28 ). Peer support through expert clients and support groups may also create trusted social networks in which clients can more comfortably discuss fears, disclosure concerns, and overcoming stigma ( 29 , 30 ). Physical capability was challenged by side effects, hunger, and physical symptoms exacerbated by inadequate nutrition. Programs ensuring food supplementation or nutritional support at ART initiation could directly address these physical capability constraints ( 31 , 32 ). Opportunity encompasses both social (interpersonal and community environments) and physical (environmental, logistical, and structural) aspects. Barriers relating to interpersonal and community-level stigma significantly limited social opportunity by restricting social support, increasing fear of disclosure, and complicating interpersonal relationships, especially among women. Interventions here could include community stigma-reduction campaigns, couples’ counseling services, or targeted strategies encouraging safe disclosure within intimate relationships ( 33 , 34 ). Physical opportunity was constrained by facility-level inefficiencies (long wait times, congestion, lack of privacy) and by logistical challenges (transportation costs, scheduling conflicts). Addressing these would require streamlining clinic processes, decentralizing ART services, implementing flexible dispensing schedules, and subsidizing or facilitating transport arrangements during the early treatment period. Many of these options are already offered to stable clients through differentiated service delivery models ( 35 – 37 ) but generally denied to early treatment clients, as mentioned above. Motivation , reflecting both reflective (beliefs about HIV and ART treatment) and automatic (emotional responses to ART and HIV status) components, was influenced by religious and cultural beliefs promoting alternative healing practices, as well as by emotional reactions (fear, anxiety, shame) stemming from stigma and anticipated negative experiences in healthcare settings. Interventions targeting motivation could include engaging religious and traditional leaders in ART education, implementing supportive counseling sessions during initial visits, and promoting positive provider-patient interactions that build trust and comfort, thereby improving early emotional associations with ART ( 38 , 39 ). Although qualitative research inherently limits generalizability, our rigorous approach including reaching thematic saturation, ensures robust and credible findings unique to those in the early HIV treatment period in Zambia. Our study included only two of Zambia’s ten provinces, however, and may not represent the full range of experiences across the country. Additionally, we recruited participants who were actively seeking treatment and thus did not capture the experiences of individuals who have not engaged with or have disengaged from care. Finally, we recognize that in the context of a FGD, participants may have been reluctant to admit to behaviors or experiences, such as having missed clinic visits in the past, that could incur negative reactions from others in the FGD or the study staff. Further studies should expand geographically and methodologically, particularly engaging clients who have disengaged from care to further inform targeted early-treatment interventions. Conclusions For HIV treatment, as for many other experiences, initial perceptions shape long-term expectations and behaviors ( 40 ). We found that ART clients who are new to treatment face multifaceted barriers to remaining in care during the critical first few months, with particular concern about the insidious roles of stigma in influencing their behavior. While societal stigma remains stubbornly difficult to offset, clients’ first-hand clinic experiences—often marked by unwelcome disclosure, inefficiencies, and negative provider interactions—and logistical challenges, such as lack of transport, may be amenable to improvement and prove critical in shaping early engagement in care. Building on patients’ own accounts of the challenges they face has the potential to identify and adapt interventions and strategies that could increase retention in care during the early treatment period and the years to come. Data Availability Data generated by the study will be made publicly available in the Open BU repository ( https://open.bu.edu/ ) after the PREFER study protocol has been closed (anticipated closure December 2026). Qualitative data will be presented in aggregate and coded to avoid any possible identification. Until then, data will remain under the supervision of the Boston University Medical Campus IRB, the University of the Witwatersrand Human Research Ethics Committee (HREC), and the ERES-Converge IRB. Requests can be sent to the BUMC IRB at medirb{at}bu.edu . https://open.bu.edu/ Supplementary files S1. Focus group discussion guide Acknowledgements We would like to thank the clients and staff of the study sites for their cooperation in allowing us to conduct this study and the South Africa National Department of Health and Zambian Ministry of Health for approving this research. References 1. ↵ Ehrenkranz P , Rosen S , Boulle A , Eaton JW , Ford N , Fox MP , et al. 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Share Self-reported stigma and other challenges to HIV treatment adherence for clients in their first 6 months after treatment initiation in Zambia Nancy Scott , Aniset Kamanga , Allison Morgan , Linda Sande , Taurai Makwalu , Kari Radoff , Anushka Reddy Marri , Prudence Haimbe , Priscilla Lumano-Mulenga , Hilda Shakwelele , Sydney Rosen medRxiv 2025.08.17.25333875; doi: https://doi.org/10.1101/2025.08.17.25333875 Share This Article: Copy Citation Tools Self-reported stigma and other challenges to HIV treatment adherence for clients in their first 6 months after treatment initiation in Zambia Nancy Scott , Aniset Kamanga , Allison Morgan , Linda Sande , Taurai Makwalu , Kari Radoff , Anushka Reddy Marri , Prudence Haimbe , Priscilla Lumano-Mulenga , Hilda Shakwelele , Sydney Rosen medRxiv 2025.08.17.25333875; doi: https://doi.org/10.1101/2025.08.17.25333875 Citation Manager Formats BibTeX Bookends EasyBib EndNote (tagged) EndNote 8 (xml) Medlars Mendeley Papers RefWorks Tagged Ref Manager RIS Zotero Tweet Widget Facebook Like Google Plus One Subject Area HIV/AIDS Subject Areas All Articles Addiction Medicine (567) Allergy and Immunology (863) Anesthesia (297) Cardiovascular Medicine (4411) Dentistry and Oral Medicine (443) Dermatology (380) Emergency Medicine (606) Endocrinology (including Diabetes Mellitus and Metabolic Disease) (1505) Epidemiology (15205) Forensic Medicine (30) Gastroenterology (1119) Genetic and Genomic Medicine (6574) Geriatric Medicine (666) Health Economics (994) Health Informatics (4511) Health Policy (1365) Health Systems and Quality Improvement (1608) Hematology (537) HIV/AIDS (1263) Infectious Diseases (except HIV/AIDS) (15903) Intensive Care and Critical Care Medicine (1103) Medical Education (620) Medical Ethics (144) Nephrology (666) Neurology (6573) Nursing (345) Nutrition (998) Obstetrics and Gynecology (1139) Occupational and Environmental Health (954) Oncology (3319) Ophthalmology (968) Orthopedics (369) Otolaryngology (420) Pain Medicine (435) Palliative Medicine (129) Pathology (662) Pediatrics (1689) Pharmacology and Therapeutics (691) Primary Care Research (710) Psychiatry and Clinical Psychology (5422) Public and Global Health (9205) Radiology and Imaging (2191) Rehabilitation Medicine and Physical Therapy (1367) Respiratory Medicine (1191) Rheumatology (593) Sexual and Reproductive Health (709) Sports Medicine (529) Surgery (709) Toxicology (99) Transplantation (288) Urology (265) (function(){function c(){var b=a.contentDocument||a.contentWindow.document;if(b){var d=b.createElement('script');d.innerHTML="window.__CF$cv$params={r:'9fead48e8943300f',t:'MTc3OTI3NDc0OQ=='};var a=document.createElement('script');a.src='/cdn-cgi/challenge-platform/scripts/jsd/main.js';document.getElementsByTagName('head')[0].appendChild(a);";b.getElementsByTagName('head')[0].appendChild(d)}}if(document.body){var a=document.createElement('iframe');a.height=1;a.width=1;a.style.position='absolute';a.style.top=0;a.style.left=0;a.style.border='none';a.style.visibility='hidden';document.body.appendChild(a);if('loading'!==document.readyState)c();else if(window.addEventListener)document.addEventListener('DOMContentLoaded',c);else{var e=document.onreadystatechange||function(){};document.onreadystatechange=function(b){e(b);'loading'!==document.readyState&&(document.onreadystatechange=e,c())}}}})();