All study participants held national and regional leadership roles in vaccine policymaking, financing, and/or program planning and management across vaccine research, development, and roll-out stages for at least ten years in India. In addition to their role in India, five participants reported managing programs in multiple countries of Asia, Africa and Latin America. Table 1 describes the study participants.
Conceptualization of Community
Most participants defined communities as ‘beneficiaries of the UIP,’ with a notion of transactional exchange of vaccine related information between the providers and the communities, always with the aim for vaccination uptake. In these cases, communities consisted of the following categories of people : (1) vaccine-eligible children, vaccine-eligible young adults, and their parents and guardians who make vaccination-decisions for the former; (2) frontline healthcare providers who deliver vaccines and sensitize vaccine-eligible populations and their guardians for improved vaccination rates and herd immunity; (3) local-level stakeholders who disseminate information to encourage vaccination uptake; (4) gatekeepers, who resist a particular vaccine or vaccination per se, and; (5) implementers, a group that includes what is known in India as the 3A’s: Auxiliary Nurse Midwifes (ANM), the Multipurpose Workers (MPWs) responsible for administering vaccines among < 5000 people, Accredited Social Health Activists (ASHA), and Anganwadi Workers (AWW), who are workers who live with and are responsible for promoting maternal and child health, including interpersonal communication for full immunization coverage, among <1000 priority populations.
Few participants taking the ‘whole community approach’ mentioned:
“…Communities are in relation to HIV vaccine trials such as the commercial sex workers. It is the whole communities in which those individuals were living.” [Participant from a vaccine clinical trial organization]
Most of the participants acknowledged their distance from the community, mentioning “if I went to the community nobody will accept me,” while comparing the sense of community with local organizations because they “help raise community demand for routine immunization.” These organizations included grassroots Non-profit Organizations (NPOs), community-based organizations (CBOs) like women’s self-help groups (SHGs), local-level representatives of occupational groups like brick-kiln workers and barbers, and the local-chapters of technical and youth organizations such as the Indian Association of Pediatricians (IAP), Indian Medical Association (IMA); Rotary Club, Lion’s Club, National Cadet Corps, National Service Scheme, and Nehru Yuva Kendras. Several NGO heads identified themselves as communities for their people-centric approach though, in most of these expressions, fractious relationships and issues of incompatibility between decisionmakers [mostly government or donors] and NPOs were evident.
“….they [Government or donors] want to clip our wings. This is very sad because we [NPOs] bring up issues [local issues of the communities], which you [Government or donors because of being at the national-level] might never know.”
Some participants identified vaccine-gatekeepers, people who were suspicious that vaccination is a political agenda against minority groups, as communities. Interventions targeting their positive vaccination decisions increasingly came across as an area of CE.
“… in Mallapuram the mother generally said ‘no’ to vaccination because their husband lived in the Middle East [who were proxy decision-makers for their child’s vaccination]. We [decisionmakers] then realized that we have to find a way to tap the men [fathers] who are influencing immunization acceptance back home.”
Finally, although the media was not definitively identified as ‘community’ in this section, whether the media was part of the community or a driver of community’s vaccination decision outcomes was unclear. Most participants had the perception that media spread misinformation and promulgated negative sentiments among vaccine priority populations about vaccines, and thus expressed the need “to stop negative media so that they [media] do not “blindly publish”, or “over-sensationalize when it is not an Adverse Event Following Immunization (AEFI).”
Conceptualization of CE
The participants perceived CE both as a strategy and tool in implementation terms, and variously defined CE as segments of processes comprising of: (1) vaccine policy and program formulation; (2) capacity-building of frontline stakeholders; (3) vaccine information dissemination among communities to promote vaccination uptake, and; (4) targeted community-level interventions to curtail the recurring incidents of vaccine-related community backlash. There was evidence of relational goals of CE, like “longer-term trust building” [between the vaccine decision-makers and the communities], driven to “….understand what is going on in people’s minds [regarding vaccinations]”.
Intuitively, all the participants proposed ongoing and early CE for better vaccination outcomes:
“The moment you leave the village, it will be the same thing. [Communities] will say, ’Are you mad that you listened to them [vaccine decisionmakers] and got your child vaccinated?” Exemplifying need for ongoing community engagement.
“We have never faced any challenges with the introduction of and expanded the program in other districts in 2017. We could reach almost 98% of our targets [for HPV vaccinations]. We always go to the communities earlier and have media campaigns, and interpersonal communications to sensitize people on what [vaccine] we would give to their children.” Highlighting effectiveness of early-on engagement with communities.
However, several participants critiqued that CE interventions came in waves, mostly during vaccine introductions, before and during vaccine trials, and in case of a disease outbreaks, and that there were no tools or metrics to measure its impact. This they opined could be because:
“The Immunization Technical Unit was not built with a CE model [CE frame] for immunization. Like, you [Government] compensate ASHAs for fully immunizing children and trainings attended, but not for CE.”
Participants expressed a top-down and decentralized vaccine governance structure where vaccine policy formulation and vaccine introduction were made at the Ministry, considering disease burden, vaccine cost, cold-chain, and supply chain issues, and was completely funded by the MoHFW and the international donors.
“….[CE is like] a chandelier, the Ministry (MoHFW) is the hook. The different lights are the different partners, they are held at right distances in the right manner; meaning in immunization, the roles are well-defined and there are very clear partnerships and no duty-shedding.”
The development of the vaccine policy and vaccine operational guidelines in English and Hindi (the official language of India which is understood, spoken, and read by more people than English is) by the technical bodies of MoHFW, such as the Immunization Technical Support Unit (ITSU), and the Mission Steering Group, was conceptualized as CE too. Participants mentioned that the “state translated and modified [these documents] if they think that something is to be added or deleted,” though there were no examples of any such revisions incorporated based on communities’ recommendations.
Except the Vaccine Policy (2011), which recommended enhancing communities’ vaccination acceptance and confidence, and vaccine-specific Operational Guidelines, which recommended community-facing strategies, participants did not indicate any sub-population based, exclusive CE specific policy. Almost half of the participants cited the Communication Strategy for Polio Eradication, (UNICEF and USAID CORE Group), detailing intensive outreach for polio vaccination as nearest to any CE guideline. Three participants, considering India’s diversity where “every mile the language changes, the culture changes” suggested having “village-level communication strategy.” Participants noted strategic programs like Mission Indradhanush (MI) and Intensified Mission Indradhanush (IMI) to achieve 90% immunization “to the last child” as CE.
The heads of organizations and technical bodies often criticized chasms in this one-way, top-down approach as “working in silos” and “not real CE,” and feared that it would ultimately “hinder an integrated approach.” A few participants identified spaces like the Village Nutrition and Sanitation Days (VHND), organized monthly at the AWC/ rural child care center, where communities could clarify or question about the vaccines and vaccination strategy. However, these participants were doubtful if communities possessed any emancipated voice beyond seeking or resisting vaccines.
Capacity Building of Frontline Stakeholders
Some participants mentioned cascade Training of Trainers (ToT) for the 3As and local Master Trainers to motivate communities for full immunization as CE. Notably, the CE roles of the 3As and other local stakeholders were different. The ANM and AWWs were salaried staff for vaccine administration among communities, the ASHAs received honoraria for counselling and escorting the communities for vaccinations, whereas the local NPOs and CBOs were instrumental in carrying out community-based activities to motivate community’s vaccination decisions, and, in the case of vaccine trial conducting organizations, were conduits between researchers and vaccine clinical trial participants.
Participants conceptualized the 3-day Boosting Routine Immunization Demand Generation (BRIDGE) course for the 3As, and vaccination sensitization trainings for the local-level vaccine-champions (CABs, local religious leaders, barbers, and CBO members), as CE. In these it appeared that some interpersonal tactics were imparted to frontline stakeholders, which was later delegated by them. However, a few participants questioned the ‘quality CE outcomes’ from these trainings:
“So, you [Government] piggy back everything on that the Community Healthcare Worker, who talks to communities about everything immunization, family planning, maternal health, school health, adolescent health, non-communicable diseases, and cancer…[but] you are not actually engaging or doing CE.”
Vaccine-Related Information Dissémination
Most respondents mentioned “bilateral information transfer [interpersonal and behavior change communication] sent down to communities” as CE. In the same vein, most participants denoted the Communications Officer as the CE human resource. In fact, one participant said, “The role of communication, I mean CE, sorry using the wrong word again.”
“We [vaccine providers and decisionmakers] sat with communities and asked if they wanted to talk. We would ask, why the children were not getting immunized. Then they [communities] asked what the harm is if children did not get immunized?”
“…we could reach almost 98% [vaccination] targets. We use all sorts of communication channels to make people understand what we are going to give their children and why.”
Some participants highlighted the need to be creative and explore web-based media considering its easier usage, cost-effectiveness, and penetration to interior locations:
“Nobody is interested to read your mobile texts. So, use GIF messaging.”
There were few examples acknowledging bottom-up information, going from the community to the government which facilitated realizing the vaccine program goals:
“In a construction site we [participant’s organization] did the mapping. But when we reached the community after a fortnight, they [community] have already migrated. The local person would tell us the whereabouts of the mobile community and we could then reach them through the ASHA network.”
Some participants highlighted campaign-related booklets like the area-based ‘Underserved Strategy,’ developed after a polio outbreak in Uttar Pradesh in 2002 among the Muslim populations, the ‘Social Mobilization Network’ formed in 2001 to sensitize families to polio immunization, ‘My Village my Home’ (MVMH), a pictographic vaccination tracking method in the shape of a hut, where each column of the hut contains vaccination details of each new-born in the village, and media trainings of “State Immunization Officers on how to handle the media and stop negative media,” as CE.
Vaccine-champion-engagement and celebrity-engagement to motivate communities’ vaccination decisions came across as another form of CE, though there were mixed reactions regarding this strategy.
“The Deputy Collector used to vaccinate his child in the [community], and then the parents [with vaccine-eligible children] believed. We explained that vaccines do not differentiate between a Hindu and a Muslim child.” Quote highlighting champion engagement as an effective strategy for CE
“Our communication campaigns are pathetic. What is the point in having [a film star in his 70s] there? We have no way of measuring that. Does he convey safety of the product? To sell a toothpaste or a phone we spend hundreds of millions of dollars. How much is going into selling something far more important as vaccines?” Quote highlighting ambiguity about celebrity engagement’s effectiveness for CE
Targeted Community Interventions
Some participants perceived CE as a [right of the communities], “communities want the leadership to come to them. …just sit with them [communities], work with them and that is CE. The leader needs to go to the community …. at least once or twice. It really increases the communities’ motivation and trust.”
Others suggested more emancipatory understanding of CE:
“[Vaccine] demand generation is another thing. It means that you [government/vaccine providers] are giving we [vaccine-eligible community] are accepting. Policy influencing is that where the [empowered] community thinks that certain things needs to be changed. Like, if the community thinks that oral vaccines are easier than the others, are they influencing the government to change?”
Intervention programs reflected a range, between vaccine imposition and respectful engagement with community stakeholders, where participants’ responses reflected balanced trade-offs between CE’s time and resource investments and feasibility, emphasizing that it is a “marathon, and not a sprint,” “an expensive process” and “took 20 years to learn about community and how to do CE.”
“In XXXX district community was very resistant and started beating the vaccination team. Then we had to contact a local muscleman, briefed him that this [carrying on with the vaccination drive] is important, and then told him to make an announcement that vaccination is not a bad thing.” Quote implying vaccine imposition on populations.
“We engaged with the staff of Aligarh Muslim University, Jamia Milia Islamia and Jamia Hamdard [institutions of higher education that were created to manifest indigenous ethos and spirit of plurality and diversity in India], who went to the field. That helped to address the issue of vaccine hesitancy among religious leaders [Muslim religious leaders].” Quote elucidating participatory stakeholder engagement.
Later, in the member check-in meeting, participants reiterated that effective CE conceptualization and conduct will require devising CE performance and outcome indicators and advocating their incorporation in immunization surveillance instruments in India. Herein, all the participants emphasized the need to document CE effectiveness and its relational gains:
“… as a country, I will not be ashamed …., very poor in documentation. You will hardly see any papers from the learnings of polio eradication. This is so because the people who are doing CE do not have the time to document.”
Fostering of CE
Though a strict categorization of responses by organizations would not be accurate, a spectrum with seven different expressions and patterns of CE fostering roles by participants was deciphered. These examples helped see tangible ways in which CE goals were realized. Exemplar quotes in Table 2 explain the full repertoire of different engagement strategies to foster CE.
All participants acknowledged “decision-makers’ good intention for CE but they were not matched with recipes of successful CE models.” Again, most of the CE interventions reported were during the National Polio Surveillance Program (a campaign of the WHO and MoHFW initiated in 1995 to ensure polio eradication through house-to-house poliovirus vaccine delivery), with minimal evidence of institutionalization, replication or scale-up of these during introduction of other vaccines. Examples of such interventions were:
“…approaching the brick-kiln owners, getting the list of all the children, and sending it to the Government officials [vaccine decisionmakers] requisitioning vaccination” or the “Communication Officer giving vaccine IEC materials to the barbers and training the barbers’ associations’ who in turn sensitized the men [customers] on vaccination.”
Evolution and Transformation of CE
All participants indicated that CE was still a “very poorly understood space,” “complex,” and there were “several gaps to understand this puzzle.” Three participants from NPOs critiqued that it is “offhand,” “ad-hoc practices to douse the fire,” “firefight,” or “control big chaos and help put things back to normal” and recommended “real community engagement” and a “scientific approach to CE.” Recollecting CE’s evolution, participants noted that the earlier paternalistic prevention impositions has built a negative community memory, and jeopardized communities’ trust on vaccine authorities:
“..the vaccine fear was connected to the family planning program, when women were forcibly sterilized.” Quote exemplifying that the ‘face of decisionmakers’ continues to be same for ‘communities’, and the negative experiences of mandatory sterilizations carried out in the 80s and 90s have a bearing on the immunization drives and campaigns even now.
There were some evidence of pragmatic pressures by external provider/donor organizations “GAVI funding went partly for community mobilization.” that reinforced renewed systems-thinking and inclusive bottom-up- models, like:
“We were not really very serious and formed a small community group. (Initially, the community group) they came, had some snacks and went off. CE really didn’t go beyond that. But by then the NIH and USAID wanted Community Advisory Boards or CABs …and then we learnt how necessary it was.”
Consequently, several participants indicated recent and direct interactions between vaccine decisionmakers and communities while referring to “The Prime Minister’s Office invites suggestion from the public” and “Health Minister issues letters to each ASHA and ANM encouraging them to vaccinate every child.” In the member check-in meeting, participants came up with a robust definition of CE, which can be summarized as:
“CE is an upstream policy imperative rather than downstream interventions to build trustworthy relationships between vaccine decision-makers and communities. It involves demystifying vaccine science and transparent communication for empowered community agency. This would enable communities to critically analyze vaccine related myths and misinformation and enable knowledge co-production in building community sensitive vaccine policies and programs. [CE] is incumbent to sustained political-will and resources to ensure evidence-informed, tailored, vaccine policies and programs, providing equitable, quality, and tangible vaccination and capacity building benefits to community members.”
Meeting participants also suggested the need to recognize the relational gains of CE and carry out interventions in ways such that trustworthy relationships between communities and decision makers is established. There were comments reflecting realizations like “If we [decisionmakers] close the doors once again to the community, we might lose their trust, and not get the communities back, ever again.” They also recommended creating more opportunities for relationship-building and group discussions between community HCWs and vaccine decisionmakers.