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Editorial

A total facility approach to reducing HIV stigma in health facilities: implementation process and lessons learned

Nyblade, Lauraa,b; Mbuya-Brown, Rebecca J.b,c; Ezekiel, Mangi J.d; Addo, Nii A.e; Sabasaba, Amon N.f; Atuahene, Kyeremehg; Kiwia, Pfiraelih; Gyamera, Emmae; Akyoo, Winfrida O.d; Vormawor, Richarde; Manyama, Willbrordh; Shoko, Subirai; Mingkwan, Piaa,b; Stewart, Christinb,j; Balampama, Mariannak; Bowsky, Sarab,c; Jacinthe, Suziel; Alsoufi, Nabill; Kraemer, John D.m

Author Information
doi: 10.1097/QAD.0000000000002585

Abstract

Introduction

Globally, there is widespread recognition of the harm caused by HIV stigma. Stigma damages individuals’ health and wellbeing and undermines efforts to combat the epidemic, hindering HIV prevention and impeding all stages of the treatment cascade [1,2]. Stigma's negative effects on individual health [3] and HIV epidemic control are well documented [4–8].

Stigma is a social process through which an individual's worth and social standing are eroded on the basis of a perceived association with socially unacceptable behaviors or marginalized groups, resulting in a loss of status and discrimination [9,10]. HIV stigma in healthcare settings is widespread [11–14] and harmful [15]. It manifests in many ways, including care denial, inferior service quality, longer wait times, breaches of confidentiality, gossip, verbal or physical abuse, use of stigmatizing language, and stigmatizing avoidance behaviors – such as double gloving, avoiding contact, or taking additional precautions – by staff when caring for clients living with HIV, which can both stigmatize, and disclose clients’ HIV status without their consent [12,13,16–18].

Despite the wealth of evidence demonstrating stigma's negative effects, and a growing body of tested stigma-reduction intervention approaches [19–23], particularly in health facility settings [24–35], there has been a lack of commensurate stigma-reduction action in the global HIV response. This disconnect may be partly due to the relatively nascent peer-reviewed literature on evaluated interventions and the tendency to focus on evaluation results – providing less detail on intervention content and process, details needed for replication.

In response, this article describes the development and implementation of a ‘total facility’ approach to reducing HIV stigma in health facilities in Ghana and Tanzania. The approach was developed and tested by the Health Policy Plus (HP+) project together with local partners – Educational Assessment Research Center (EARC) in Ghana, Kimara Peer Educators and Health Promotors Trust (Kimara Peers) and Muhimbili University of Health and Allied Sciences (MUHAS) in Tanzania – in partnership with participating hospitals, national AIDS control programs, and the Ghana AIDS Commission. The approach built on the published literature [24,27,30–34,36] and a wealth of programmatic experiences and tools from the past 2 decades [37–40].

Methods

The article's objective is to describe the implementation process of the total facility stigma-reduction approach in Ghana and Tanzania and share lessons learned in sufficient detail to facilitate replication. Evaluation results are presented elsewhere; the intervention was evaluated using a quasi-experimental approach in Ghana [29] and a pre-post comparison in Tanzania [41]. Lessons learned come from regular discussions with implementing partners; routine project progress reports; and feedback collected during end of project dissemination meetings and visits to each participating facility, including group, and individual discussions with facilitators (staff and clients), champion groups and facility management.

District-level health facilities were selected for the intervention due to their staff size (ranging from around 200–800), HIV client caseload, and location. In Ghana, there were five intervention facilities, one from each of the five National HIV and U.S. President's Emergency Fund for AIDS Relief (PEPFAR) priority regions at the time of the study. In Tanzania, two district-level rural facilities in the same region participated. All participating facilities offered a full complement of general (i.e., maternal-child-health, outpatient) as well as specialized [i.e., HIV, tuberculosis (TB)] services, including lab, radiology, and pharmacy.

The total facility approach adapts a socioecological model [42–45] to the individual health facility environment, working with the health facility to develop stigma-reduction intervention activities that address stigma at multiple socioecological levels: individual health workers, with a focus on client interactions; the interpersonal level of how staff work together and interact with each other across departments and staff cadres; and the institutional/health facility level (Fig. 1).

Fig. 1
Fig. 1:
Overview of three-stage ‘total facility’ stigma-reduction approach.

The approach is grounded in social cognitive theory principles [46] and interpersonal or intergroup contact theory [47], and works to combat stigma by creating space for interactions (contact strategies) [47–49], fostering empathy [50–53], and building efficacy for stigma reduction through awareness, skills, and knowledge building [22,30,50,54–56] as well as through joint action planning for changes needed in the facility environment.

Intervention activities aimed to address the immediately actionable drivers of stigma as identified in the literature [14,24,31,33,37,57]: first, fear of HIV acquisition while providing client care; second, stigma awareness; third, attitudes; and fourth, health facility environment. HIV acquisition fears among staff, often driven by misunderstanding or insufficient knowledge about how HIV is acquisition and about standard precautions, contributes to HIV stigma in healthcare settings and manifesting in stigmatizing avoidance behaviors. Likewise, stigma may be driven by inadequate awareness and understanding of what stigma is in concrete terms – what it looks like or how it manifests in daily language and behaviors, or for health facilities, in service delivery and processes and structures. Lack of awareness of how stigma harms individuals and society more broadly also drives stigma. Stigmatizing attitudes (negative attitudes based on social judgments) may influence, often unconsciously, service delivery. Recognizing and addressing such attitudes can help mitigate unconscious bias in service delivery. The facility environment itself plays a role. For example, do staff have supplies to protect themselves from HIV acquisition? Do health facility policies protect client confidentiality and support stigma-free care?

The total facility approach targets the whole facility and all staff levels (clinical and nonclinical), as all staff are important for shaping a stigma-free environment. Stigma can occur during any interaction with staff and stigma encountered at the gate or in the reception area can impede entry to and retention in care as readily as stigma experienced during a clinical interaction. Although the focus in both countries was on HIV stigma, the approach incorporated elements addressing stigma toward specific populations – men who have sex with men (MSM) in Ghana; youth seeking HIV and other sexual and reproductive health services in Tanzania. These groups experience high levels of stigma, which harms their access to and utilization of HIV and other health services [2,58–65].

Results

As this article focuses on the implementation process of delivering the total facility stigma-reduction approach, this section describes in detail each of the three stages of the process: first, formative assessment to inform intervention design and catalyze action; second, building stigma-reduction capacity within the facility; and third, integration of stigma-reduction into facility structures and processes. Most activities served dual purposes, targeting multiple socioecological levels within the facility (Fig. 1) and sometimes multiple actionable drivers of stigma (Table 1).

Table 1
Table 1:
How ‘total facility’ approach addresses key actionable drivers of stigma.

Stage 1: formative assessment

The first step was collecting formative data to inform intervention design. Globally validated measurement tools [14] were adapted to each context through a 2-day participatory workshop with key stakeholders, including health facility staff and management, national HIV response officials, and people living with HIV, including key populations (Ghana) and youth (Tanzania). Formative research included mostly self-administered surveys with all levels of health facility staff and face-to-face interviews with clients living with HIV in each participating facility. More detail on methods and evaluation results for Ghana [29,66] and Tanzania [41] are described elsewhere.

Data, focusing on key drivers and manifestations of stigma, were shared with participating facilities through 1-day participatory workshops designed to validate the data, catalyze action and inform facility-led stigma-reduction activity development. In Tanzania, workshops attended by facility management and staff from various cadres and departments were held at each of the two participating facilities, with data only from that facility presented. In Ghana, because more facilities participated in the formative research, five regional workshops were held, each including around 40 participants – roughly 10 representatives from each region's four participating facilities. Data were presented for the region (four facilities combined). After a brief overview of key formative data, workshop participants worked in groups of 5–10 people, each focused on one area of the data (e.g., one stigma driver or manifestation). Groups were given tables with select data for their topic, broken down by staff cadre (senior medical, mid-level medical, administrative, and support), and asked to review and discuss the results, guided by a few questions. For example, were they surprised by the results? Why or why not? Groups then brainstormed possible solutions to stigma challenges posed by the evidence. In particular, participants strove to identify no-cost or low-cost activities that could be carried out within the realities of their facility's day-to-day functioning. Groups presented their key observations on the data, along with their potential solutions, to the full group for further discussion.

Stage 2: capacity building for stigma-reduction

Adapting global participatory training materials and final curricula

A key recommendation from the data workshops was the need for stigma-reduction training for all staff levels. In response, tailored training materials for each country were adapted from the Health Policy Project's Comprehensive Package for Reducing Stigma and Discrimination in Health Facilities[39] to fit the context, assessment findings, and focus populations. The adaptation process included holding 2-day workshops with health facility staff, national HIV response officials, and people living with HIV, including key populations in Ghana and youth in Tanzania, to refine a draft set of training exercises. The training curricula were further finalized during the training-of-facilitators. Final facilitator's guides, available online, were developed for Ghana [67] and Tanzania (English [68] and Swahili [69]) covering key stigma drivers, manifestations and action planning.

Selection and training of facilitation teams

To build facility capacity to respond to stigma the approach built and trained facilitation teams of health facility staff and clients living with HIV, including youth (Tanzania) and key populations (Ghana), for each participating facility. Facilitators were selected, in consultation with facility management, to attend a 5-day offsite training-of-facilitators to build their participatory facilitation skills, knowledge of relevant content, including how to deliver each exercise, and confidence as trainers. Facilitation teams then returned to their facilities to conduct stigma-reduction trainings for staff, initially with coaching from master trainers who observed the training teams as they delivered their first two sets of 2-day staff trainings. Coaches supported the training teams with their preparations each morning and then provided feedback during breaks and at the end of each day.

Participatory training of all levels of health facility staff

Health facility staff (all levels and cadres) attended 2 days (10–14 h) of participatory stigma-reduction training sessions, held at or nearby the facility. For example, one facility's training was in a nearby church as the facility lacked appropriate training space. The approach aimed to reach 50–70% of facility staff with participatory stigma-reduction training; however, once the training began, management and staff demanded training of more staff. A total of 526 (100% of facility staff) and 1228 (79% of staff across all facilities, with the percentage trained in each facility ranging from 61% – in the largest facility – to 97%) staff were trained in Tanzania and Ghana, respectively. Each training group (30–35 participants) included a mix of staff from different levels and departments. Training schedules and group composition were designed in consultation with facility management to minimize service delivery disruption. The modular curriculum can be delivered different ways. In Ghana, facilities delivered the training on 2 consecutive days. In Tanzania, groups attended 2-daylong sessions, held at least 1 week apart.

Stage 3: integrating stigma-reduction activities into facility structures and processes

A group of staff motivated to develop and lead more stigma-reduction activities in their facilities emerged organically from the participatory training. Thus, each facility created a team of stigma-reduction ‘champions’: 8–10 staff drawn from management and different departments and cadres. Teams were empowered by facility management to officially lead stigma-reduction activities. Each received a seed grant of around US$5000 from HP+ to support stigma-reduction activities, which they developed, prioritized, and implemented with technical assistance from HP+ local partner implementing organizations, EARC (Ghana) and Kimara Peers (Tanzania). Activities varied across facilities, including drafting and posting codes of conduct and patients’ rights; publicizing the facility's commitment to stigma-free care through banners, posters, community events, and community radio and TV spots; and integrating stigma-reduction into routine structures and processes. For example, facilities incorporated stigma into loudspeaker announcements, staff meetings, and ward rounds. Some established accountability mechanisms – including client feedback systems and programs to recognize staff for providing stigma-free care – and integrated these into existing management and performance systems. Some facilities recognized a ‘staff member of the month’ who exhibited exceptional stigma-free behavior during facility-wide staff meetings.

An important factor in any intervention is cost. Cost will vary by setting due to general differences in the cost of inputs, as well as by the total number of staff being trained since some costs are fixed (e.g., adaptation of training materials, capacity building of trainers). Although we do not have specific cost data to share for both countries, we have provided a breakdown of cost categories that would need to be considered for replication (Table 2).

Table 2
Table 2:
Key cost components of total facility approach.

Discussion (implementation lessons learned)

The total facility approach to facility stigma-reduction built on 2 decades of programmatic [38,39,70] and intervention research [24,31,71], combining elements from this work, in particular the focus on participatory training and the immediately actionable drivers of HIV stigma, to create a more comprehensive approach that considered the whole facility. Key differences with prior approaches are the focus on the whole facility and all levels of staff and departments, building capacity within facilities to develop and lead stigma-reduction activities and going beyond staff training to support facilities to develop and implement their own stigma-reduction activities.

The intervention portion of the total facility stigma-reduction approach was implemented in just over 7 months in Ghana and 3 months in Tanzania, demonstrating a basic level of feasibility. The approach was also well received, as shown by facilities’ enthusiastic response to the intervention, including significant in-kind facility contributions (training space and staff time), demand by management to train more staff than originally targeted, emergence of staff-led stigma-reduction champion teams, and official management support for these teams. In Ghana, further intervention scale-up is supported by the Global Fund. In Tanzania, the National AIDS Control Programme incorporated the contents of the HP+ facilitator's guide into a draft national stigma-reduction training curriculum for health workers [72].

Key lessons learned through the implementation process and ad hoc feedback from facility management, stigma-reduction facilitators, staff trainees, and clients underscored key characteristics of the approach for consideration in replication.

The formative research and engagement of facility management and staff in participatory workshops gave staff the chance to engage with and reflect on the formative data and brainstorm potential solutions. These workshops created a sense of urgency and need for action by demonstrating the presence and nature of stigma in their facilities and helped shape the intervention as well as strengthened ownership of the process. Although we note the power of this formative research, if resources are not available for formative data collection, discussions with management could be held using any available data for the country or region. In our experience, most health facility managers recognize that stigma is a challenge to delivering quality services and welcome concrete solutions.

Building capacity within facilities for participatory stigma-reduction was critical. In-house staff facilitators brought credibility and legitimacy that outsiders may lack and helped further shape the training material for their specific facilities during their five-day training. Moreover, facilities were left with in-house stigma-reduction expertise. Pairing staff and clients living with HIV, including members of key populations and youth, as facilitators was vital – enriching content by bringing in lived experience and understanding of the day-to-day realities of workplaces and communities. Staff-client interactions on facilitation teams fell outside the provider-patient power dynamic, reinforcing stigma-reduction by challenging established habits and attitudes. However, selection of individuals to be facilitators is critical to success and can be tricky as not all people make strong participatory trainers. Therefore, working closely with management to build understanding about the trainings’ participatory nature, the role of facilitators and key characteristics (personality, interest in stigma-reduction, respect among peers) that make for successful candidates is essential. Building on learning from Ghana, which implemented first, Tanzania added a competitive selection process for trainers with a simple application form. This helped ensure participants’ interest in being trainers and broadened the pool of trainees beyond those who would typically be selected.

‘Training health facility staff as facilitators led to much better results… Because they were our own staff, they were able to go and learn and then prepare sustainable trainings for their colleagues… Trainings were easier to understand and better received, because the facilitators know their fellow staff members and understand the facility context, and were able to plan the content accordingly.’ – Feedback at end of project dissemination meeting, Medical Officer-In-Charge, Tanzania

Using participatory training creates a safe environment to interactively explore sensitive issues and deepen learning through self-reflection, joint discussion, interaction with clients and action planning. Trainings were also fun and joyful, despite the weight of the issue being addressed. After the first training was held in each facility, word spread quickly, and staff came forward to demand they be in the next round of training.

The training location and participant mix is also key. Sessions were held at or near facilities, which enabled more staff to participate. It strengthened and broadened ownership as training was not just for a few selected staff who got to go away for a training. Each training included a mix of staff levels and departments. Initially there was skepticism at facilities that a single training could successfully combine medically trained and support staff. However, careful facilitation built relationships and caused joint learning and collective action for stigma-reduction across divisions and staff levels. It also reinforced the message that stigma-reduction is the responsibility of all facility staff and that each person in the facility is important to this effort.

Flexibility in timing was also important. The training is modular and so accommodates a range of timing for the sessions allowing each facility to determine what is feasible and least disruptive to their service delivery. In Tanzania, groups attended 2 separate daylong sessions, held at least 1 week apart, which facilitators found enabled participants to process and apply learning in the interim. Participants noticed incidents of stigma that they likely would not have recognized before and came to the second session with questions and ideas about addressing stigma in their facilities. In Ghana, facilities delivered the training on 2 consecutive days, both for scheduling ease and to provide continuity in learning. Other countries use different timings. For example, in Viet Nam [73], training has been delivered in multiple 2–3 h afternoon sessions over 1-week period.

Involving a substantial proportion of facility staff (61–97% in Ghana; 100% in Tanzania) from all levels and cadres in stigma-reduction efforts helps transform the facility environment. Training so many staff improves prospects for sustainability, however the size of a facility could be a challenge to this approach. In both countries, most facilities were medium-sized district level facilities (around 200 staff). This made the total facility approach more feasible than perhaps in larger facilities in which training the majority of staff may be infeasible and a more targeted approach, focusing on key departments and staff cadres, may be needed. In larger facilities, with more complex institutional structures, it may be more challenging to secure management buy-in – which was a key factor in the intervention's success. With 10–14 h of training, the curriculum could be considered relatively long for busy facility staff. However, all facilities managed to accommodate this training and staff expressed a desire for additional sessions.

Perhaps the most important lesson learned is that when provided with knowledge, understanding and skills for stigma-reduction, facility staff voluntarily and enthusiastically used their new skills to design and implement stigma-reduction activities in their facilities. These locally led solutions were tailored to facilities’ specific needs and contexts and integrated into existing structures and processes, building a foundation for sustained change. In Tanzania, the medical officer-in-charge of one participating facility reported that new staff members are oriented on the facility's aspiration to provide stigma-free services while a youth trainer has begun using WhatsApp clips to reach out to other young people living with HIV to encourage them to live positively and to come to the facility to access services without fearing stigma. A doctor in Ghana explained at an end-of-project dissemination meeting: ‘This interaction is different from anything else we have experienced so far – we defined the response; we owned it.’ Engaging facility management throughout the process is vital and lays the groundwork for institutionalizing stigma-reduction efforts. Early engagement of national and local government authorities is also vital for smooth implementation and improves prospects for future funding to support scale-up.

We hope that sharing this implementation experience in detail will enable others to replicate this approach, tailoring it to their specific sociocultural and epidemic contexts.

Acknowledgements

Author contributions: L.N., R.M.-B., M.E., S.B., S.J., N.A. conceived of the concept and study. L.N., R.M.-B., M.E., N.A., A.M., K.A., P.K., E.A., W.A., R.V., W.M., S.S., M.B. were responsible for implementing research and intervention activities. A.M., R.V., L.N., P.M., C.S., J.K. managed the data and conducted analysis. N.A., S.J., K.A., S.S., M.B., S.B., J.K. guided and advised through study implementation. L.N., R.M.-B. drafted and finalized the article. All authors read and provided comments on drafts and approved the final article.

The authors thank all those who contributed to this endeavor and without whom this study would not have been possible, including our government colleagues at the Ghana AIDS Commission, The Ghana National AIDS Control Programme and Tanzania's National AIDS Control Programme, and our local partners at the Educational Assessment Research Center in Ghana and the Muhimbili University of Health and Applied Allied Sciences and the Kimara Peer Educators and Health Promoters Trust Fund in Tanzania. We also thank the 3C consulting group of stigma-reduction master trainers from Zambia for sharing their expertise to build stigma-reduction training capacity in Ghana. We thank the management and staff of participating health facilities and the clients who gave so generously of their time and insights during the baseline and endline surveys. We extend special thanks to the stigma-reduction facilitators and champion team members. This work was made possible by the generous support of the U.S. Agency for International Development (USAID) and the U.S. President's Emergency Fund for AIDS Relief (PEPFAR) through the Health Policy Plus (HP+) project under Agreement No. AID-OAA-A-15–00051. In Ghana, additional funding was provided by the Global Fund to Fight AIDS, Tuberculosis and Malaria. The content of this article is the sole responsibility of the authors and does not necessarily reflect the views or policies of the Global Fund, USAID or PEPFAR and does not imply endorsement by the U.S. Government.

Supplemental Digital Content 1, http://links.lww.com/QAD/B763.

The study was supported by USAID and PEPFAR in both Tanzania and Ghana. In Ghana, additional funding was provided by The Global Fund to Fight AIDS, Tuberculosis, and Malaria.

Conflicts of interest

There are no conflicts of interest.

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Keywords:

behavioral interventions; discrimination; health facility environment; healthcare delivery; HIV; stigma

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