All study participants held national and multi-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 roles in India, five participants reported managing programs in multiple countries in Asia, Africa, and Latin America. Table 1 describes the study participants.
This section sequentially shares results organized by the following categories and subcategories. Because the results are extensive, we list many of the key themes in brief here as well.
(1) conceptualization of community, and how stakeholders define community;
- community was typically understood to be one or more of vaccine-eligible children and their parents and vaccine-eligible adults, frontline healthcare providers, local-level stakeholders, vaccine gatekeepers, and local-level implementing organizations.
(2) conceptualization of CE, with particular attention to analyzing extant efforts, which generally fell into three categories:
(2a) capacity building of frontline stakeholders as CE;
- capacity building most often was expressed as training, training-of-trainers, and course offerings;
(2b) vaccine-related information dissemination as CE;
- participants described a wide variety of different communication methods, as well as perceived benefits and disadvantages to each;
(2c) targeted community interventions as CE;
- participants provided examples of ways in which community
interventions had been carried out;
(3) different tangible ways in which CE might be fostered;
- fostering CE was viewed on a broad spectrum that ranged from highly participatory approaches to direct imposition of vaccination services;
(4) evolution and transformation of CE;
- all participants acknowledged the need for a better understanding of CE and, in
the member check-in meeting, were able to agree on a consensus definition of
CE.
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 of vaccination uptake. 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) 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) local-level implementing organizations of community health workers, groups that includes what are known in India as the 3As. These are Auxiliary Nurse Midwifes who are based at a s ub-center and are multipurpose workers responsible for administering vaccines among communities of < 5000 people; Accredited Social Health Activists, who are local women trained to act as health educators in their communities catering to 700 people in tribal areas and 1000 in rural villages; and Anganwadi Workers, resident workers in the village rural child care centers in India who are responsible for promoting maternal and child health, including interpersonal communication for full immunization coverage, among communities of <1000 people. A few participants took a broader perspective: “It is the whole communities in which those individuals were living.”
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, 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 and Nehru Yuva Kendras Sangathan (autonomous organization for youth development under the Government of India, Ministry of Youth Affairs and Sports). 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 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 was proxy decision-makers for their child’s vaccination].”
Finally, it was unclear whether the media was part of the community, or a driver of communities’ vaccination decisions. Most participants indicated that the 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.”
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], and “….understand what is going on in people’s minds [regarding vaccinations]”.
Intuitively, all the participants proposed ongoing and early instantiation of CE for better vaccination outcomes:
“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.”
However, several participants critiqued that CE interventions came in waves, mostly during vaccine introductions, before and during vaccine trials, and in response to a disease outbreak. They also noted that there were no tools or metrics to measure its impact. They speculated that these deficits may be because:
“The Immunization Technical Unit was not built with a CE model [CE frame] for immunization. Like, you [Government] compensate Accredited Social Health Activists for fully immunizing children and trainings attended, but not for doing CE.”
Participants described a top-down and decentralized vaccine governance structure where vaccine policy formulation and vaccine introductions were conducted at the Ministry, considering disease burden, vaccine cost, cold-chain, and supply chain issues. These efforts were completely funded by the Ministry of Health and Family Welfare (MoHFW) and international donors.
“….[CE is like] a chandelier, the [MoHFW] is the hook. The different lights are the different partners, they are held at right distances in the right manner. In immunization, the roles and partnerships [of national level decisionmakers] are clearly defined.”
The development of vaccine policies and operational guidelines in English and Hindi (one of the 22 scheduled languages of the Republic of India, and also one of the official languages of India which is understood, spoken, and read by more people than English) by the technical bodies of MoHFW, such as the Immunization Technical Support Unit, 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 no such example of any such revisions incorporated based on communities’ recommendations were cited.
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 identify any sub-population-based CE-specific policy. Almost half of the participants cited the Communication Strategy for Polio Eradication, published by the 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 a “village-level communication strategy.” Participants noted strategic programs like Mission Indradhanush and Intensified Mission Indradhanush 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 CE as activities occurring in spaces like Village Nutrition and Sanitation Days, which are organized monthly at rural childcare centers. There, communities can ask questions about vaccines and vaccination strategies. However, these participants were doubtful that communities possessed any emancipated voice beyond seeking or resisting vaccines.
Capacity Building of Frontline Stakeholders
Some participants mentioned ‘cascade training of trainers’ for the 3As and local Master Trainers as CE, since the goal is to motivate communities for full immunization. Notably, the CE roles of the 3As and other local stakeholders were different. The Auxiliary Nurse Midwives and Anganwadi Workers are salaried staff for vaccine administration among communities and the Accredited Social Health Activists receive honoraria for counselling and escorting the communities to vaccinations. However, the local NPOs and CBOs appear to be instrumental in carrying out community-based activities to motivate each community’s vaccination decisions, and, in the case of vaccine trial conducting organizations, act as conduits between researchers and vaccine clinical trial participants.
Participants conceptualized the 18 months training for ANMs, and 3–4 weeks trainings for AWWs and ASHA workers respectively, with additional trainings such as the 3-day Boosting Routine Immunization Demand Generation course for the 3As, and vaccination sensitization trainings for the local-level vaccine-champions (community advisory boards, local religious leaders, barbers, and CBO members), as CE. In these instances, it appeared that some interpersonal tactics were imparted to frontline stakeholders, and tasks were later delegated to 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 Dissemination
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.”
Some participants highlighted the need to be creative and explore web-based media, considering its ease of use, cost-effectiveness, and penetration to interior locations:
“Nobody is interested to read your mobile texts. So, use GIF messaging.”
There were a few examples where bottom-up information, going from the community to the government which facilitated realizing the vaccine program goals, was acknowledged:
“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 Accredited Social Health Activist 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’, 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.
“Our communication campaigns are pathetic. What is the point in having [a film star in his 70s] there? We have no way of measuring CE. 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?”
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 a more emancipatory understanding of CE:
“[Vaccine] demand generation is another thing [than CE]. 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 [and advocates for that].”
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.”
“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 diversity in India], who went to the field. That helped to address the issue of vaccine hesitancy among religious leaders [especially the Muslim religious leaders].”
Later, in the member check-in meeting, participants reiterated that effective CE conceptualization and conduct will require developing CE performance and outcome indicators and advocating for 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 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.”
Range of Approaches to Fostering CE
Though a strict categorization of responses by organizations would not be accurate, participants endorsed a wide variety of types of approaches to fostering CE. These methods generally fell on a spectrum ranging from empowered (‘1’) to disempowered (‘7’). Table 2 provides exemplar quotes illustrating efforts or actions that might be categorized into these different levels.
(Table 2)
All participants acknowledged “decision-makers’ good intention for CE but they were not matched with recipes of successful CE models.” Most of the CE interventions reported occurred during the National Polio Surveillance Program (a campaign of the World Health Organization 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.
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 wherein women were forcibly sterilized.”
There was some evidence of pragmatic pressures by global provider/donor organizations (e.g., “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] 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 described 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 Accredited Social Health Activist and Auxiliary Nurse Midwife encouraging them to vaccinate every child.”
In the day-long member check-in meeting, the summary of analysis from the interviews was presented. Study participants and their teams agreed with the findings, and jointly 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 decisionmakers 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 recognized the need to carry out interventions in ways such that trustworthy relationships between communities and decisionmakers are 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 healthcare workers and vaccine decisionmakers. Meeting participants were especially interested in addressing inequities in vaccination coverage by building on the existing range of interventions while innovating newer mechanisms such as community mobilization for vaccination, strategic interventions with vaccine gatekeepers, providing immunization information using traditional, digital, and social media, and dispelling vaccine misinformation and disinformation while formulating rumor management strategies.