HIV-related stigma and discrimination among health care workers during early program decentralization in rural district Gunungkidul, Indonesia: a cross-sectional study

Stigma and discrimination (SAD) towards people living with HIV (PLHIV) remains widespread across the globe and particularly in low- and middle-income countries (LMICs) [1‐3]. More than half of adult residents sampled in population surveys on SAD reported at least one HIV-related SAD attitude within their lifetime [4] and in every PLHIV experienced a denial of health service since their diagnosis [5]. The advent of antiretroviral treatment (ART) has made HIV-related SAD increasingly less associated with debilitating disability or illness resulting from immunocompromised health [6, 7], but more embedded in a multitude of behavioural and social identities that characterize the HIV key populations as possible targets of SAD treatment [8]. In this sense, SAD is a product of complex interactions of structural impetus (e.g., discriminatory policies, societal norms, economic opportunities for marginalized groups) and interpersonal factors (e.g., levels of social support, the prevailing attitude in the household or at the organizational level) with individual characteristics (e.g., educational attainment, employment, sexual orientation, substance abuse) [9‐11], which collectively augments the normative distinctions of the HIV key populations from the rest of the masses. Consequently, the types of SAD, its sources or perpetrators, and the mechanism of action in relation to health outcomes for each type are governed by the patterns of interaction within and between these determinants at various population levels [12].

Much of the early theoretical ground to distinctively capture and measure SAD in numerical indices was derived from the work of Goffman (1963) who laid the foundation of what constitutes stigma in terms of perpetrated actions (to devaluate) and the impact these inflicted on others (the feeling of discredit) [13]. The conceptualization by Link and Phelan (2001) describes the cognitive and attitudinal process of stigma by active labeling of differences and stereotyping and by separating and eventually excluding those stigmatized from a relevant social context, thereby equating stigma with discrimination [14]. More recent theoretical work clarifies the cognitive process of SAD in which stereotyped ideas or imagined contra attitudes condition future discriminatory actions enacted as a response [15, 16]. Within this framework, SAD is underpinned by principal human faculties that manifest in knowledge or its lack thereof (ignorance), attitude (prejudice), and actions (discrimination) [17]. Once applied on target victims, SAD works to compel PLHIV or those associated with the infection to modify their health behaviours and current access to care in response to enacted service barriers (enacted stigma), devalued self-worth from internalizing unfavourable societal views (internalized stigma), and revised expectations of foreseeable negative treatment from others (anticipated stigma) [12]. SAD therefore can be broadly viewed as a continuum of process [18] comprising two distinct but related endpoints that accrue to the presumed perpetrators, for whom attitudinal indicators or discriminatory practices are its final outcomes, or to the victims, for whom health detriments or declining health status are its final outcomes.

In health care delivery, the setting of the current study, health care workers (HCWs) are in position of power over entry into care and its continual adjustments during chronic treatment to maximize health outcomes while also serving in the best interest of the patient [19]. Evidence demonstrates that SAD in health care setting restricts access to HIV testing and diagnosis, disincentivizes uptakes of antiretroviral treatment (ART), erodes treatment adherence, and compromises the quality of life of PLHIV [20‐24]. The deleterious consequences of suboptimal health behaviors in morbidity and mortality [25] place health care delivery in a prominent rank among the priority sectors to target for SAD elimination [26].

Although experiences of SAD by PLHIV in the health care setting are widely documented [27‐29], examination of SAD attitudes and practices among health care workers (HCWs) in the context of decentralized care has received less attention. The expansion of HIV care and treatment in LMICs over the last two decades brought about innovations to redistributing service capacity more evenly in the health system in response to increased demand by decentralizing provision down to primary care and across the ranks of health care cadres [30]. Advances in diagnostic and antiretroviral technologies have simplified and standardized care procedures to the point of becoming amenable to decentralized provision by non-physician clinicians at the primary care level [31]. HIV care decentralization provides a unique programatic context for emergent SAD in which a wider scope of HCWs is introduced first-hand to the care engagement of PLHIV and key populations.

Investigations into decentralized programming indicate fear of discrimination and unwarranted disclosure of HIV status as two areas of SAD that PLHIV feel strongly concerned about or commonly experienced during health care delivery [32, 33]. Firstly, these concerns may signal an early progress in organizational learning as primary health centres (PHCs), now an emerging model of HIV care provision in the health system, rearrange resource allocations in adapting to the imperative of HIV service provision. This contrasts with the referent hospital whose pioneering HIV care in the community has reached maturity. Gaps in supply-side determinants of quality of care such as differential capacity building, skills composition, experience in service provision, and other resource endowments between types of facility units in a decentralization setting can therefore inform priority areas of improvement when transitioning to a decentralized model of HIV care. Secondly, in maturing decentralization programs and rural areas the same concerns may also foretell a possible trade-off for a segment of patients who changed or maintained their access location at a PHC close to their residence when the cost of obtaining better quality of care at the referent hospital exceeds that of access convenience [34‐36]. Seen from this perspective, the predominant type of SAD in HCWs and its effect on PLHIV patients can differ by the stage of program maturity or geographical context in which decentralized HIV care is instituted. For instance, actioned discrimination such as denial of services by HIV serostatus or membership to a key population may be more prevalent during early decentralization as the human resource capacity is being built to target these actions [35], whereas a vestige of attitudinal SAD and stigmatizing beliefs may persist in a later stage of program cycle. The indication of differential quality of care receives little attention in comparative effectiveness reviews of HIV care decentralization programs in LMICs, which have concluded non-inferior outcomes of PHCs or other equivalently decentralized provision relative to the pioneering hospital [30, 37‐39]. The summary effect sizes reported in these reviews mask the impact of various stages of program maturity in the included studies. Similarly, existing studies on HIV-related SAD among HCWs are limited in the scope of health care professions or had a focus on mature programs [40‐43], which forego the dynamics in patient-provider interactions and emergent SAD during early decentralization.

The global commitment to HIV-related SAD has been recognized on an equal footing with efforts to eliminate new HIV infections and AIDS-related deaths [44]. In 2018, UNAIDS launched a partnership to support countries in protecting the human rights of PLHIV and advance country capacity to reduce SAD [26]. Within the short timespan since the launch, changes to the baseline levels of SAD have been reported in varying degrees, with most countries failing to achieve the elimination target by the end of 2020 [27]. Recent data reveal that the proportions of PLHIV experiencing SAD during health care delivery varied greatly in the range of 1.7% to 21.0% [27], which suggests different trajectories in the capacity to reduce SAD that may be specific to the health system in each locality [45].

The HIV epidemic in Indonesia is characterized by stable growth in annual incidence and a concentration of disease burden in a few key populations such as men who have sex with men (MSM), people who inject drugs (PWID), and sex workers [46]. ART is provided free at the point of use, but coverage which currently stands at 26% of an estimated 540,000 PLHIV is among the lowest in the region [46] and the true rates of community viral suppression remain largely undocumented due to routine viral load monitoring being financed out-of-pocket. In 2012 the Ministry of Health launched a nationwide campaign to surge the diagnostic and treatment capacity in the wake of new projections of HIV cases, targeting phased service expansion to existing PHCs and peripheral facilities in anticipation of a growing demand for immediate ART for key populations and other priority groups such as HIV-infected pregnant women and tuberculosis coinfected patients [47]. To date, there are 1.951 health care facilities in the country with the capacity in ART initiation and management in addition to HIV diagnosis, of which 61% are PHCs [48].

A growing body of research on HIV-related SAD in the country has documented the health burden of SAD in PLHIV in relation to its negative effect on adherence to ART in urban and rural districts [49, 50]. Two studies examined beliefs and attitudinal HIV-related SAD in HCWs, specifically among nurses and in multiple HCW cadres practicing in a low caseload setting [42, 51]. While these studies document high SAD in PLHIV with average value measures consistently exceeding half the plausible range, neither compared between types of health care facility and nor was situated in rural areas where care decentralization is most relevant to overcome distance-related barriers to health care access [34‐36]. We also note the dearth of international studies measuring HIV-related SAD in the setting of care decentralization, as we pointed above. Herewith we present findings from a survey of HCWs, describing the prevalence and examining the correlates of attitudinal and behavioural indicators of SAD against PLHIV during early decentralization in rural Gunungkidul, in the direction of recommending actions to tackle HIV-related SAD in this context. The negative effects of HIV-related SAD on sustained chronic HIV care [20‐24, 49, 50, 52] runs counter to the benefit of decentralization in creating new capacity for treatment and promoting more equitable access in close proximity to the community PLHIV and their families reside, particularly in rural areas with a sparse distribution of health care providers.

The prevalence of SAD during early decentralization was high as found in this setting and in equivalently concerning levels for all the four indicators despite some notable differences between hospital and PHC HCWs. Highly prevalent discriminatory practices, exceeding 90% and 80% of HCWs at the district hospital and PHCs respectively, may indicate a lack of understanding of infection control, as evidenced from the low training coverage. Different indicators of SAD seem to have unique correlates in the type and direction of effect. In general, systemic correlates encapsulating individual HCWs within their workplace or health care professions exert a greater likelihood of SAD than do demographic correlates or those related to competency such as training, HIV knowledge, and service interactions.

A rather unusual finding is related to how training can have an opposing influence on certain SAD indicators. In this case, training was associated with a reduction in the odds of fear of transmission and unexpectedly increased avoidance of service duties. Our liberal definition of training as any receipt in one or more competency topic may misrepresent the training effect in its association with service avoidance. We defined training as such since some of the training topics may broadly correspond to more than one SAD indicator. This approach could, however, underplay specific trainings that are more relevant to service avoidance and result in a statistical artifact for other SAD indicators that share little in construct with fear of HIV transmission. It is also possible that relevant training materials, particularly in infection control, missed the emphasis on due safety precautions or that protective facility-level policies such as access to post-exposure prophylaxis were minimal so that this condition exaggerated the nosocomial risk of HIV transmission to the point of avoiding care duties.

This study showed that the increase of HIV knowledge would reduce the odds of discriminatory practice. The association of HIV knowledge with discriminatory practices was in line with the results of prior studies [51, 62]. No other SAD indicators were correlated with HIV knowledge. Improving knowledge is essential and needs be recognized as one of the factors that condition or mediate SAD-preventive behaviours as found in other studies of HCWs or other populations in LMICs [63‐65].

Discriminatory practices are more prevalent in the hospital and among the non-physcian cadres, especially nurses/midwives. HIV patients seeking care at the hospital tend to be in late clinical stages and have a worse prognosis, requiring more invasive procedures that may subject ill-informed HCWs to excessive prevention in the presence of a perceived elevated threat of HIV and opportunistic infections. As decentralization program matures, more burden of acute care will be alleviated through expanded health system capacity to diagnose and enroll a greater number of PLHIV into ART care at PHCs [34, 65, 66], and this growth in implementation can be expected to contribute to a reduction of excess SAD among hospital HCWs. SAD in non-physician cadres can be attributed to the physician-centered model of care preceding decentralization that placed nurses or other medical professions in support roles, with a limited functional scope in the delivery of vital health care for PLHIV such as management of opportunistic infections or ART prescribing. Decentralization taps into the supply of non-physician cadres and empowers them to assume clinical leadership in HIV care with documented success in other LMICs [37, 38]. Quasi-experimental evidence demonstrates SAD reduction among nurses after participation in health delivery leadership programs [67].

Given the high prevalence of SAD among HCWs in this early decentralization setting, capacity building activities to combat SAD can are needed. Among the top priorities is special trainings on HIV-related SAD with a hands-on ap proach to nurture effective and culturally competent service interactions that uphold the rights and dignity of PLHIV and HIV key populations. A review of the existing national curricula, which HCWs must complete to hold a professional certification in HIV care, can identify gaps in modules, program structures, and learning methodologies to better adapt to the needs of HIV key populations and to the demand of decentralized programs in clinical leadership roles for nurses and other relevant cadres, and to the prevailing communal culture in the district to strategically promote respect and autonomy over HIV status disclosure associated with occurrence of SAD [68]. Engagement with PLHIV groups as experts in the review process, content updating, and training facilitation will ensure that curricula stay abreast of emerging community perspectives.

Current approaches to capacity building allow piecemeal deliveries where a curriculum or a competency program is completed on standalone topics accumulated over a period of time. While offering flexibility, these approaches can delay completion of essential skills and result in partial competence. Systematizing training deliveries coherently for a comprehensive coverage of topics is another area of improvement in capacity building. Preferably, all essential trainings should be completed for all HCW cadres prior to or at the earliest time around the decentralization program roll-out. Additionally, staffing policies that reward staff retention is needed to facilitate selection of highly-motivated individuals into HIV care decentralization programs, promote specialization in HIV care, and balance against outflows of competent HCWs due to compulsory job rotation and transfers in public health [69].

Our findings should be interpreted with caution. Apart from the artifactual problem described above, the training effect on SAD can also be an outcome of self-selection where the trainings attracted participation from HCWs with persistent discriminatory attitudes or those who reasonably protect themselves from nosocomial HIV transmission rather than vice versa due to the cross-sectional design. Secondly, two SAD indicators depicted in this study, namely perceived negative image and avoidance of service duties, evaluate perceptions and hypothetical (in)actions which may or may not bear resemblance to the actual behavior of HCWs and therefore should not be construed as a definite form of enacted SAD. Thirdly, we do not feel that social desirability drove our results given the prevalent SAD found in the study and the self-administration of the survey, which minimized the likelihood of responses being falsely congruent with the expectations of the research team. Lastly, our survey participants encompassed a wider pool of health care cadres, with some non-medical professions having minimal exposure to HIV and thereby elevating the SAD prevalence as compared to what would be expected if participation was limited to medical professions.

Program implementation in high-SAD environment such as the study setting can benefit from the development and evaluation of innovations in capacity building of HCWs to reduce SAD. Tracking of SAD indicators over time can give insights into how SAD evolves through phases of program maturity and impacts on long-term patient outcomes.

Early decentralization is a critical period with possible high SAD in service delivery as a broad spectrum of HCW cadres participate in rapidly expanding services to anticipate the surging demand for HIV care. Facility type in which HCWs provide services and types of HCW cadres, HIV knowledge and training, are the strongest correlates of SAD. Pre-decentralization preparatory work or timely interventions in capacity building, emphasizing professional, cultural, and practical competencies to create safe and emphatic interactions during health care delivery, can reduce SAD among HCWs going forward.