COVID-19 VACCINE ACCEPTANCE AMONG MARGINALIZED POPULATIONS IN KOSOVO: INSIGHT FROM A QUALITATIVE STUDY DISCUSSION PAPER SEPTEMBER 2022 Ha Thi Hong Nguyen Mrike Aliu Kim Ashburn Vlora Basha Berisha / COVID-19 Vaccine Acceptance Among Marginalized Populations in Kosovo: Insight from a Qualitative Study Ha Thi Hong Nguyen Mrike Aliu Kim Ashburn Vlora Basha Berisha September 2022 Health, Nutrition, Population (HPN) Discussion Paper This series is produced by the Health, Nutrition, and Population Global Practice of the World Bank. The papers in this series aim to provide a vehicle for publishing preliminary results on HNP topics to encourage discussion and debate. The findings, interpretations, and conclusions expressed in this paper are entirely those of the author(s) and should not be attributed in any manner to the World Bank, to its affiliated organizations, or to members of its Board of Executive Directors or the countries they represent. 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Any queries on rights and licenses, including subsidiary rights, should be addressed to World Bank Publications, The World Bank Group, 1818 H Street, NW, Washington, DC 20433, USA; fax: 202-522-2625; e-mail: pubrights@worldbank.org. © 2022 The International Bank for Reconstruction and Development / The World Bank 1818 H Street, NW Washington, DC 20433 All rights reserved Health, Nutrition, and Population (HNP) Discussion Paper COVID-19 Vaccine Acceptance among Marginalized Populations in Kosovo: Insight from a Qualitative Study Ha Thi Hong Nguyen,a Mrike Aliu,b Kim Ashburn,c Vlora Basha Berishad a Health, Nutrition, and Population, The World Bank b Health, Nutrition, and Population, The World Bank c World Bank Consultant, Washington, DC, USA d Kantar Kosovo, Prishtina, Kosovo Abstract: Kosovo has fully vaccinated 45.5 percent of the population, below what is needed to slow the spread of COVID-19. The Roma, Ashkali, and Egyptian communities, as marginalized ethnic groups, have been identified as high risk for acquiring COVID-19 and for lower acceptance of vaccines. Factors associated with vaccine acceptance are examined in this qualitative study among Roma, Ashkali, and Egyptian community members and representatives from civil society, community leaders, health care providers, and government working directly within these communities. Using a social-ecological model, intrapersonal, interpersonal, community, and structural factors influencing vaccine acceptance were identified. Intrapersonal-level factors centered on fear of side effects and doubt about vaccine safety and effectiveness, and lack of trust of health care providers; at the interpersonal level, male head of households decided for the entire family whether to receive the vaccine; in the social context at the community level, exposure to prolific misinformation on social media, television news, and paper pamphlets distributed in study communities created fear, doubt, and anxiety about vaccines, and stereotypes about the strong immune systems of ethnic minority groups reinforced beliefs about the communities low susceptibility to COVID-19; and structural-level barriers included the requirement for identification documents, and a buildup of doubt about motivations of the vaccinators created by massive vaccine-promotion efforts and police harassment in implementing curfew, and other protective measures targeting ethnic minority communities. Implications of these findings highlight a need for a segmented approach in designing subgroup-specific and multicomponent interventions to promote vaccine acceptance. Strategies include training local opinion leaders in door-to-door awareness raising, directly addressing misinformation, and distributing vouchers to be exchanged for incentives after vaccination; using social media where respected health care providers and community members post videos promoting vaccination; and removing or providing an alternative to identification requirements. Keywords: Vaccine acceptance, COVID-19, vaccine, Kosovo, Roma, Ashkali, and Egyptian Disclaimer: The findings, interpretations, and conclusions expressed in the paper are entirely those of the authors, and do not represent the views of the World Bank, its Executive Directors, or the countries they represent. Correspondence Details: Ha Thi Hong Nguyen, 1818 H Street, NW, Washington, DC 20433, hnguyen19@worldbank.org. Table of Contents ACRONYMS ............................................................................................................................................... 5 ACKNOWLEDGMENTS ........................................................................................................................... 6 EXECUTIVE SUMMARY .......................................................................................................................... 7 PART I - INTRODUCTION ....................................................................................................................... 1 Conceptual Framework .......................................................................................................... 2 PART II - AIM AND METHODS............................................................................................................... 4 Study Aim ............................................................................................................................... 4 Study Methods ....................................................................................................................... 4 Analysis .................................................................................................................................. 5 PART III - RESULTS ................................................................................................................................. 6 Demographic Characteristics and Vaccination Levels at the Time of Study ............................ 6 Intrapersonal Level ................................................................................................................. 6 Interpersonal Level ................................................................................................................. 9 Community Level...................................................................................................................11 Structural Level .....................................................................................................................12 Facilitators Promoting Vaccine Acceptance ...........................................................................16 PART IV - RECOMMENDATIONS........................................................................................................ 18 Raise Awareness ..................................................................................................................19 Address Misinformation .........................................................................................................20 Strengthen Trust....................................................................................................................21 Shift Social and Gender Norms .............................................................................................21 Address Structural Barriers....................................................................................................21 Limitations .............................................................................................................................22 Conclusion ............................................................................................................................22 REFERENCES ......................................................................................................................................... 23 ANNEXES ................................................................................................................................................. 25 Annex 1: Focus Group Discussion Recruitment Tool .............................................................25 Annex 2: Focus Group Discussion Guide ..............................................................................28 Annex 3: In-Depth Interview Guide ........................................................................................32 Annex 4: Paper Pamphlets Disseminated in Study Communities ..........................................35 ACRONYMS COVID-19 Coronavirus Disease 2019 CSO Civil Society Organization NGO Nongovernmental Organization WHO World Health Organization ACKNOWLEDGMENTS This paper was developed by the World Bank, Health, Nutrition, and Population (HNP) team of staff and consultants for Kosovo. The authors include Ha Thi Hong Nguyen (Senior Health Economist, World Bank), Mrike Aliu (Human Development Specialist, World Bank), Kim Ashburn (Consultant), and Vlora Basha Berisha (Managing Director, Kantar Kosovo). Eleta Shala, Dardan Dervishaj, and Arber Hajrizaj lead the field research and data collection from Kantar Kosovo. The interpretations in this paper are those of the authors alone. They do not necessarily represent the views of the World Bank Group, its executive directors, or the countries they represent. The authors are grateful to reviewers of this paper—Lung Vu and Olena Doroshenko—for their invaluable comments and feedback. We wish to thank Tania Dmytraczenko (Practice Manager, HNP, Europe and Central Asia) and Massimiliano Paolucci (Country Manager for Kosovo and North Macedonia) for their endorsement and support to the team, and Mjellma Rrecaj and Helena Nejedla for their administrative support. The work would have not been possible without the financial support from the ECA Front Office through the small grant scheme for operationalizing Roma inclusion. Finally, the authors wish to thank all those who participated in focus group discussions and individual interviews during this qualitative study. The authors are grateful to the World Bank for publishing this report as an HNP Discussion Paper. EXECUTIVE SUMMARY Since the first reported case of COVID-19 in March 2020, Kosovo has had over 3,000 deaths due to the disease. The most effective strategy for preventing the spread of COVID-19 is vaccination. Currently 45.5 percent of the population in Kosovo is fully vaccinated. However, the level of vaccination is estimated to be lower among the highly marginalized Roma, Ashkali, and Egyptian ethnic minority groups. A qualitative study was designed to examine factors associated with vaccine acceptance among these minority groups. Using a socio-ecological framework, intrapersonal, interpersonal, community, and structural factors associated with vaccine acceptance were explored. At the intrapersonal level, fear of potential side effects, mainly infertility and weakening the immune system and even causing death, and concerns about the contents and effectiveness of the vaccine were the most frequent reasons for not receiving a vaccine. A history of mistrust in health care providers and health care institutions contributed to refusing a vaccine. Within the household at the interpersonal level, whether to receive a vaccine is a decision most often made by the head of household, typically a male family member, on behalf of all household members. In addition to interpersonal- and intrapersonal-level factors, community-level factors influencing vaccine acceptance were identified. Many of the fears and concerns discussed during focus groups, including fears of infertility, were based on misinformation and conspiracy theories heard or seen on local news, social media, and in paper pamphlets widely disseminated in study communities. Misinformation circulating in the community reinforced ideas that ethnic minority groups have strong immunity and are less susceptible to COVID-19; and mistrust of the health system fostered fear that the vaccine was developed to control ethnic minority groups’ reproductive health and contributed to individuals rejecting the vaccine. Structural-level barriers such as lack of required identification documents and misunderstanding of need for scheduling appointments at vaccination centers deterred vaccination. Stigmatizing and targeting of communities by vaccine campaigns and harassment by law enforcement in implementation of protective measures, such as curfews, exacerbated the fear and frustration related to COVID-19 and created doubt about motivation behind vaccine efforts in study communities. Four subgroups were identified in the study population: deniers; fearful who are concerned about side effects; mistrusting who doubt vaccine effectiveness and mistrust the health system; and individuals who do not have required identification documents. Based on these findings it is imperative to design interventions addressing factors contributing to hesitation to receive a vaccine. Interventions should be tailored to each subgroup’s specific concerns. Design of future vaccine programming should directly address misinformation about the existence of COVID-19 and risk perceptions, potential side effects (particularly infertility) and contents of the vaccine; build trust in the health care system and health care providers, vaccine development, and vaccine safety; and clarify information about vaccine effectiveness campaign fatigue and experiences with enforcement of disease prevention and control measures in Roma, Ashkali, and Egyptian communities. Recommended approaches are, as follows: • Identify and train influential community opinion leaders (religious leaders, respected community leaders), respected civil society organization representatives, and health care providers to visit door-to-door, sharing accurate information, directly addressing misinformation; clarifying appointments are not required to receive a vaccine; and, as appropriate, accompanying individuals to vaccine centers. • Engage health care providers, health communication specialists, scientists, and religious leaders to post accurate information and videos on social media targeting families, parents/caregivers, and adolescents (age 12 years and older) • Use incentives such as vouchers to exchange for an incentive package after vaccination • Consider mandating vaccines for specific groups (e.g., health care providers) • Remove identification documents as a requirement for vaccination, or develop an alternative for those who do not have identification documents • Identify communities where transportation may be a barrier and extend transportation services PART I - INTRODUCTION The first case of COVID-19 was reported in Kosovo in early March 2020. Since that time, there have been 228,308 confirmed cases and 3,139 deaths due to COVID-19 in Kosovo (Kosovo Ministry of Health n.d.). The best strategy preventing the spread of COVID-19 is successful implementation of vaccination. In June 2021 Kosovo started a national mass vaccination program for individuals 12 years and older using the Pfizer and AstraZeneca vaccines. According to data from the Johns Hopkins University COVID-19 Resource Center, a total of 1,828,472 vaccine doses have been administered and 822,842 individuals have been fully vaccinated (JHU n.d.). This translates to 45.5 percent of Kosovo’s population being fully vaccinated. National survey data show that among those unvaccinated, the intention to get vaccinated was lowest among individuals with only primary school education, at 43 percent, or no formal education, at 20 percent, versus 57 percent among those with secondary, and 58 percent among those with postsecondary education (World Bank 2021). Understanding vaccine acceptance, or the intention to receive the vaccine in the future, among those not yet vaccinated is necessary in developing more effective implementation strategies. The COVID-19 vaccines, unlike other existing vaccines, were rapidly developed in an emergency response, with application of mRNA technology, new to vaccine science. The overwhelming proliferation of misinformation and conspiracy theories appearing in the media and online may contribute to reluctance or resistance to the vaccine (Razai et al. 2021). These and other contextual factors must be considered in understanding COVID-19 vaccine acceptance. In Kosovo, the Roma, Ashkali, and Egyptian ethnic minority groups have been identified as particularly vulnerable to COVID-19 (ECDC 2021). The historic social and economic marginalization of these ethnic groups has contributed to high rates of poverty, limited educational attainment, and often poor and crowded living conditions. While vaccination data are not disaggregated by ethnic group, these groups are considered important populations in implementing effective vaccine strategies. In this context, the aim of this qualitative study is to generate data on considerations in vaccine acceptance in the Roma, Ashkali, and Egyptian communities; and to identify subgroups in the study population that could inform strategic implementation of interventions to increase vaccine acceptance. Roma, Ashkali, and Egyptian Communities in Kosovo The Roma, Ashkali, and Egyptian communities represent the largest ethnic minority groups in Kosovo. Historically socially and economically marginalized, these communities are considered among the most vulnerable populations in the country. These three minority groups distinguish themselves from one another in cultural, linguistic, and ethnic heritage. During the 1998/1999 Kosovo war, many from these minority groups were expelled from Kosovo or moved to refugee camps primarily in Northern Kosovo. According to 2011 census data, excluding northern Kosovo, the Roma, Ashkali, and Egyptian communities made up 0.5, 0.9, and 0.6 percent, respectively, of the total population, although these estimates are widely regarded as underestimated (CIA 2021). These groups live in dispersed communities across Kosovo, often in settlement communities with inadequate housing and poor infrastructure. Unemployment is high, estimated at over 90 percent, compared to 25 percent nationally (EC 2020). Health outcomes among the Roma, Ashkali, and Egyptian communities are generally poor compared to for the general population. According to Kosovo’s 2019–2020 Multi-Indicator Cluster Survey 1 (MICS) data, children in these ethnic minority groups have twice the probability of dying between birth and five years of age, at 27 per 1,000 live births compared to all children in Kosovo, at 15 per 1,000 live births (Kosovo Agency of Statistics and UNICEF 2020). MICS data show a much lower proportion of children under two years of age are fully vaccinated in Roma, Ashkali, and Egyptian communities at 38 percent, versus 73 percent among all children in Kosovo. Early marriage (marriage before age 18 years) is four times higher among Romani, Ashkali, and Egyptian women compared to all women in Kosovo; and the probability of adolescent pregnancy is much higher at 78 versus 13 per 1,000 girls age 15–19 years, respectively. Changing harmful gender norms has been the focus of local and international organizations to ensure more equitable inclusion of women in social and economic life in these communities (UN Women 2021). Conceptual Framework A range of factors associated with COVID-19 vaccine acceptance have been identified in multicountry reviews, including studies from low- and middle-income countries (Razai et al. 2021; ECDC 2021; CIA 2021). Factors identified reflect constructs from existing health behavior models, primarily the Heath Belief Model (HBM) and the Theory of Planned Behavior (TPB). The Health Belief Model posits that perception of risk of the susceptibility and severity of disease, perceived benefits and barriers, cues to action, and self-motivation influence health behavior. In addition to these constructs, the Theory of Planned Behavior includes attitudes, subjective norms, perceived outcomes, and behavioral control (control one has over his or her own behavior) as predictors of intention to perform a behavior. Factors associated with vaccine acceptance identified in the literature include risk perception of severity and susceptibility of COVID-19 (Razai et al. 2021; ECDC 2021; CIA 2021; EC 2020; Kosovo Agency of Statistics and UNICEF 2020); perceived safety and effectiveness of the vaccine (Razai et al. 2021; ECDC 2021; CIA 2021); attitudes, regret in not accepting the vaccine (UN Women 2021); attitudes, vaccine skepticism, conspiracy theories (Davis et al. 2022); and, social norms (Razai et al. 2021; Davis et al. 2022; Moola et al. 2021). While not a construct in HBM or the TPB, lack of trust in health care providers and institutions has been associated with vaccine hesitancy (Razai et al. 2021; EC 2020; Moola et al. 2021; Biswas et al. 2021). Multiple studies document the spread of misinformation about the COVID-19 vaccine in social media and online (Wong et al. 2020; Huyn et al. 2021). Evidence of an erosion of trust in science and vaccines as waves of the pandemic continue presents an important challenge in strengthening confidence in vaccine science (Roundtree and Prentice 2021). A review of interventions highlighted the effectiveness of multicomponent, dialogue-based interventions to address vaccine hesitancy/resistance; the importance of audience segmentation and multicomponent approaches; and involvement of health care professionals in vaccine policy and implementation planning and in developing interventions to address vaccine acceptance and uptake (EC 2020). One of the criticisms of the HBM and TPB is the emphasis on individual, psychological-level determinants of health behavior. Expanding this perspective to include multilevel factors, socio- ecological models have been used to explain public health phenomena more comprehensively. A socio-ecological model was developed for this study using constructs from HBM, TPB, and other constructs from the literature, situating them in a multilevel framework shown in Figure 1. Risk perception of COVID-19 severity and susceptibility, fear of side effects, concerns related to the safety and effectiveness of the vaccine, religious beliefs, and trust in health care providers are key determinants at the individual, intrapersonal level. Determinants at the interpersonal and 2 community levels include decision-making power within the household, and social norms and misinformation/disinformation in the community, respectively. Structural factors contributing to receiving a vaccine are related to required identification documents, understanding of requirements for scheduling appoints at vaccination centers in advance, possible transportation constraints, and stigmatizing prevention efforts by health care institutions in heavy targeting of vaccine promotion, and by law enforcement in implementation of curfews and other protective measures in ethnic minority communities. Figure 1. Socio-Ecological Framework for COVID-19 Vaccine Acceptance Structural • Document requirements • Transporta�on • Appointment scheduling • S�gma�zing policies Community • Misinforma�on/ Disinforma�on • Social and gender Norms Interpersonal • Household decision making power Intrapersonal • Risk percep�ons • Fear of side effects • Safety/ Effec�veness concerns • Religious beliefs • Trust Source: Authors 3 PART II - AIM AND METHODS Study Aim The overall aim of this study was to generate evidence related to COVID-19 vaccine acceptance and to identify subgroups within the study population to inform strategies to improve vaccine uptake among Roma, Ashkali, and Egyptian minority groups. Study Methods Qualitative methods employing focus groups and in-depth interviews were used in cross- sectional data collection during March 2022. Study sites were purposively selected based on cities with the highest proportions of Roma, Ashkali, and Egyptian ethnic group members. The study population was composed of members of these ethnic minority groups (age 20–50 years) and stakeholders. Stakeholders included representatives from civil society organizations working in study communities, community leaders representing the Roma, Ashkali, and Egyptian minority groups, government representatives, and health care providers working in health facilities in the study communities. Focus group discussions were used to gather data on barriers and facilitators for vaccine acceptance from the perspective of ethnic minority group members and from stakeholders working in these communities. A total of eight focus groups, six with 8–10 participants and two with 5 participants in each group, were conducted with members of the ethnic minority groups across four study sites. Sampling for the focus group discussions is shown in Table 1. Focus groups were conducted with women and men separately in each study site. Within each selected city, focus group participants were recruited using purposive sampling and a recruitment questionnaire to ensure equal numbers of women and men, and individuals with vaccinated and unvaccinated status (Annex 1). Table 1. Focus Group Discussion Sampling City Gender Language Prizren Male Albanian Prizren Female Albanian Graçanicë Male Serbian Graçanicë Female Serbian Fushë Kosovë Male Albanian Fushë Kosovë Female Albanian Gjakovë Male Albanian Gjakovë Female Albanian Source: Authors A focus group guide was developed and further refined after the first focus group discussion (Annex 2). The guide covered topics on trust in health care providers and health authorities; awareness of COVID-19 and the vaccine; risk perceptions of severity and susceptibility of COVID-19; barriers to accessing the vaccine; attitudes about taking the vaccine to protect others; and sources of information about COVID- 19 and the vaccine. 4 Table 2 presents the sampling for in-depth interviews with stakeholders. In-depth interviews were conducted with 11 key stakeholders representing a range of civil society organizations, community leaders, and health care providers who work closely with, and have intimate knowledge of, the study communities. Table 2. In-Depth Interview Sampling Stakeholder type Number of in-depth Study sites interviews Civil society 3 All sites organizations Community leaders 3 Prizren (Roma) representing ethnic Gjakovë (Egyptian) minority groups Fushë Kosovë (Ashkali) Government and 2 National UNICEF representatives Family Medicine 3 Prizren, Gjakovë, Center health Fushë Kosovë facilities Source: Authors Note: UNICEF = United Nations Children’s Fund. An in-depth interview guide was developed based on results of the focus group discussions (Annex 3). Topics included organization affiliation and role of the stakeholder; trust in health care providers and health care authorities; risk perception of severity and susceptibility of COVID-19; motivations and barriers for vaccination; sources of information; and recommendations for communication strategies, messages, and identification of individual opinion leaders to engage in communication efforts. Analysis A content analysis approach was used to analyze focus group and in-depth interview data. Transcripts were prepared from focus group discussions and in-depth interviews. A codebook was developed from the focus group and in-depth interview guides. Data were coded and coded text exported into a matrix to organize the data by theme and frequency of appearance in the transcripts, and by type of participant for comparative analysis. Salient themes were identified and synthesized. 5 PART III - RESULTS Results are presented according to the socio-ecological framework developed for this study. Key constructs identified in focus group and interview data include awareness and risk perceptions; beliefs; misinformation; trust in health care providers and health care institutions; social and gender norms; stigmatizing minority communities; access to vaccines; collective responsibility; sources of information; and influential individuals. Demographic Characteristics and Vaccination Levels at the Time of Study Focus group participants included 51 percent (34/66) women and 49 percent (32/66) men, age 20–50 years. Most did not complete primary school at 45 percent (30/66); 18 percent (12/66) completed primary school; 18 percent (12/66) secondary school; and 18 percent (12/66) university. Most focus group participants were unemployed, at 39 percent (26/66); 32 percent (21/66) were employed; 18 percent (12/66) reported being “housewives”; and 11 percent (7/66) students. Vaccination levels among focus group participants reflected national vaccination levels in Kosovo. Most focus group participants had not yet received a single dose of a COVID-19 vaccine at the time of the study, at 58 percent (38/66); 33 percent (22/66) were fully vaccinated; and 9 percent (6/66) partially vaccinated. Intrapersonal Level Risk Perceptions Overall, participants in focus groups described feeling fearful of COVID-19. COVID-19 and the origins of the virus that causes the disease were frequent topics of conversation in study communities. Participants knew of mask wearing, handwashing, and physical distancing prevention measures. There were some community members who denied that the virus existed, often invoking religious views that death was God’s will, “The virus is not real. It is a lie! People died because God said so.” -Prizren, woman, not vaccinated Fear of Potential Side Effects of the Vaccine As mass vaccinations efforts began in June 2021, community concerns seemed to shift from fear of acquiring the disease, COVID-19, to fear of the vaccine. These fears primarily centered around potential side effects of the vaccine based on misinformation and conspiracy theories circulating on social media, television news, and paper pamphlets (Annex 4) disseminated in the study communities. Generally, fears of the effects of the vaccine were shared across most focus group participants, regardless of their vaccination status. Most of the vaccinated focus group participants, with a few exceptions, were vaccinated to fulfill a mandatory requirement for employment, or for travel, rather than as a completely personal choice. 6 “I took the vaccine because of work since they won’t allow you to work without it and because of the visa, which I had to apply for in the embassy. Honestly, no, I wouldn’t take it because I was scared due to all the reasons that we mentioned so far, chip and so on. But also, I heard from international doctors that the vaccine is not good for you; I heard that it lowers your immune system, it increases your tiredness, it makes your conditions worse and the problems with babies. However, I had to take it, I had no other choice. I don’t know, I am 50/50 sure.” - Gjakovë, woman, fully vaccinated One of the most often mentioned fears was that the vaccine causes infertility and impotence in those receiving the vaccine. This was particularly a concern of parents of young girls, for whom the possibility of future infertility kept them from vaccinating their daughters. “Reproduction, [the vaccine is] deadly, [the vaccine] handicaps children. Generally, the fear is the decrease in reproduction of people and not managing to increase the population. When I first took the vaccine, I did not feel good emotionally or physically. When I got up, I was scared I would fall; I was not able to eat; my menstruation cycle was not regular; I still cannot hear very well, and I forget a lot.” -Prizren, woman, fully vaccinated “I haven’t taken the vaccine because they keep saying that you cannot have kids.” -Prizren, man, not vaccinated Other frequently mentioned fears were that the vaccine weakened the immune system and even caused death; that the vaccine contained anti-religious products such as pork fat, monkey cells, remains of aborted fetuses; and that the vaccine contained microchips, allowing those who received a vaccine to be surveilled. “I never took a vaccine up until one month ago because I was scared that my health would be at risk from any side effects; one of my friends had a problem with the vaccine because his arm got all black from a reaction and another friend’s arm hurt for a long time. His memory was not working properly. The immune system got weakened.” - Fushë Kosovë, man, partially vaccinated While side effects of the vaccine seemed to be the biggest barrier to getting vaccinated, focus group participants discussed a lack of confidence in vaccine effectiveness, in part due to the rapid development of the vaccine, the contents of the vaccine as noted earlier, and motivations behind giving the vaccine. “You can’t make a vaccine in one year, it seems untrue, because if you really think about it, all of this seems political; China and Russia were the first to develop vaccines. Also, they say that this vaccine gets into your DNA and afterwards, there can be mutations later on.” - Fushë Kosovë, man, fully vaccinated Focus group participants frequently talked about having witnessed cases of family members becoming ill with COVID-19, some of whom died. For some, these firsthand experiences may have transformed their beliefs about the existence of COVID-19; although these did not necessarily change attitudes about the vaccine, as the following quotes show: 7 “Well, my mother had COVID-19 and I saw what it did to her, so I believe it. I knew she had it because she had breathing problems.” - Gjakovë, man, not vaccinated "We heard about COVID-19, and I think it is quite serious. We didn’t believe it in the beginning. We put faith in God, if it is written to die from it, we will. But four people have died from it. And they were young.” - Graçanicë, woman, not vaccinated When COVID-19-related illness or death involved a person who had been vaccinated, this raised concerns for some about vaccine effectiveness, as in the case of this participant: “I had to take the vaccine because of my work, otherwise I could lose my job. If it was not for this I would never take it. At the company that I work we have to have at least one dose of the vaccine because of the inspections. I got only one dose, and I hope I won’t have to take another one. No one from my family is vaccinated except for me. I didn’t let them, but my mother and wife didn’t want to take it either. I don’t trust the vaccines. My uncle got three doses and got COVID-19 and hardly made it through. He was seriously ill. The vaccine is not effective at all. A friend of mine from Mitrovica told me that they will give us the first dose to see if we will survive it, then the second and the third, so you die more quickly. I don’t believe this, but many people complain, and you can see the examples, like the case with my uncle.” - Graçanicë, man, partially vaccinated Trust in Health Care Providers and Health Care Institutions Trust in health care institutions and health care providers is crucial to ensuring a healthy population (Kosovo Agency of Statistics and UNICEF 2020). Exploring trust in the health care system in focus groups revealed a history of negative experiences in health care facilities; poor treatment by staff in health facilities; discrimination based on ethnic identities; and medical incompetence, particularly in public health facilities. Attitudes broadly reflected health-seeking behavior in health facilities, only in the case of medical emergencies: “Sometimes they don’t behave nicely, depending on who is working there. Once, I got prescribed some medication, which were other than what I needed and they did not do me good. Just that.” -Prizren, woman, partially vaccinated This lack of trust in health care institutions in focus groups was corroborated by stakeholders who acknowledged the little trust in these communities in health care providers and health facilities. Failure on the part of the health care system to adequately address health problems in these communities may be based on legitimate resource constraints, at least in the public sector, but failures in health care were linked to failures in supporting these communities in other ways as well—suggesting a picture of broader marginalization economically, socially, and politically. 8 “Honestly, they don’t have great faith in these institutions [referring to health care institutions]. They have many requests. We know that these communities live with many problems, them being financial, health, and housing. In a way the trust was lost because of not being able to meet these needs.” -Ashkali Civil society representative Participants from civil society organizations, local representatives, and health care institutions who work daily on minority issues, emphasized that a tremendous amount of work has been done within their agencies and institutions to inform the Roma, Ashkali, and Egyptian communities about SARs-CoV2 and COVID-19. Stakeholders generally felt that after all of their time and effort in promoting the vaccine, a complacency has taken root among the Roma, Ashkali, and Egyptian communities and COVID-19 is no longer considered a threat. “It was such a crisis, now with the war in Ukraine, everything suddenly ended, as if it doesn’t exist anymore.” - Graçanicë, man, fully vaccinated “I don’t think the perception is any different in comparison to the majority of the other communities. I think generally they perceive risks similarly, them being that the vaccine kills or shortens the life span. If we would ask them in the beginning, they would say that there is no more dangerous virus than COVID-19, but now they’re getting used to it and not taking it very seriously.” -Civil society representative, stakeholder Interpersonal Level Household decision making The traditional social structure in the study communities is patriarchal. Decisions are made by the male head of the household for all household members including decisions related to health. In focus groups, participants said in most households, men make the decision for all family members whether to get vaccinated. If any adult in the family disagrees with the decision of the head of the household, it would be uncommon to act on an individual judgment and go against the family decision. “No family members have taken the vaccine. They don’t dare to do so. I would make them leave the house.” -Prizren, male, not vaccinated “If the husband doesn’t permit for the wife to get vaccinated, then she won’t get the vaccine. If I didn’t take the vaccine, then how can the wife get the vaccine? I don’t know for the others; this is my opinion.” - Graçanicë, man, fully vaccinated “People do have impact on their children, because as a family they are convinced to not be vaccinated. Maybe there are cases where children broke this barrier and went to get vaccinated but in rarer cases. Still, I think the head of the family is the one who is asked. This is not just about children as I said there is also a problem with women and girls for whom they decide.” -Bethany Christians Services representative, stakeholder 9 For women it was more complicated. In addition to needing permission or approval of the male head of household to get vaccinated, women must be accompanied to vaccination centers by their husbands or another male family member. Moderator: “And if these same people decided that they would want to get vaccinated, do you think they would need a permission or a companionship of a family member? Participant: No, everyone goes together with their husbands. Moderator: What if your husband tells you that you can't get vaccinated? Participant: It happens that parents-in-law don't permit (the family members) to get vaccinated. Moderator: So you need permission and companionship? Participant: Yes, it is our custom.” - Graçanicë, woman, not vaccinated Focus group participants noted that children, particularly daughters, have been prohibited from getting vaccinated by their parents, driven by the fear of the impact it might have on their future fertility. “No, no child is vaccinated in our community.” - Graçanicë, man, not vaccinated “People read a lot of things on the Internet, and there is fear of children getting sick or that the vaccine causes sterility in girls and boys. Most of the people believe in this. There is a lot of disinformation.” - Graçanicë, man, fully vaccinated “My 17-year-old daughter has not been interested to take the vaccine, but I wouldn’t let her get it, just like I didn’t get it. Mostly because of this sterilization.” -Egyptian community representative The importance of the protection of children, above the elderly or other groups, was frequently discussed in focus groups and interviews. Participants said that concerns about the COVID-19 vaccine and infertility led to children not receiving other routine, existing vaccines because parents feared health care providers would try to vaccinate their children against COVID-19. Participants also discussed how their children developed COVID-19 symptoms but were not taken to the doctor. “People are convinced on not taking the vaccine, which is why during this period children were not even taking their regular vaccines because they were afraidwe would vaccinate them against COVID-19 as well.” -Bethany Christians Services representative, stakeholder 10 "I have three grandchildren Maasha’Allah, and they were ill also (from COVID-19), all three of them. But God said take care of them. If I took them to the hospital, I would lose them, God forbid. I took care of them at home and without the doctor it went away. Their throat was bad and we took antibiotics.” - Graçanicë, woman, not vaccinated Community Level Misinformation Many of the fears about potential side effects, and doubts about vaccine safety and effectiveness identified at the intrapersonal level were based on misinformation and conspiracy theories circulating on social media, television news, and paper pamphlets (Annex 4) disseminated in the study communities. Almost all focus group participants reported having access to Internet at home, a smartphone, and cable television. Generally, participants said they got their information about COVID-19 and the vaccine from television and social media platforms, primarily Facebook, Snapchat, Instagram, and for younger generations, Tiktok. When prompted, most focus group participants could recall a recent message promoting the vaccine. However, the exposure to false information, including antivaccination messages from community leaders, left participants confused, untrusting, and stressed about vaccine decisions. As one participant said, there should be some protection against “fake news.” “On the national television of Serbia, RTS, there is this doctor, Nestorovic, who says that we shouldn’t get vaccinated. He goes out on serious TV channels and speaks against the vaccination, in front of millions of people. If this is not the truth, then the government should not let him spread this information and confuse people.” - Graçanicë, man, not vaccinated “No, I am not vaccinated because I believed the media, most of them say don’t get it, which is why I felt stressed.” -Egyptian community representative, not vaccinated “I am concerned because I don't know who to trust. The things I read on Facebook; I saw that after the vaccine the metal sticks to the skin because of a magnet. I am afraid.” - Graçanicë, woman, not vaccinated Not all focus group participants believed the negative messages about the vaccine, a small minority of participants rejected the misinformation. “People read a lot of things on the Internet, and there is fear of children getting sick, or that the vaccine causes sterility in girls and boys. Most of the people believe in this. There is a lot of disinformation.” - Graçanicë, man, fully vaccinated Stakeholders felt that awareness of COVID-19 was higher, and there was less resistance to vaccines, in Roma, Ashkali, and Egyptian communities in urban areas than in more isolated communities. In urban communities, there was less exposure to antivaccine messages. Overall, stakeholders held the view that participants who were not vaccinated based their decision not to receive the vaccine on misinformation spread by word of mouth and through social media. Several examples of this misinformation were shared by stakeholders during interviews 11 (https://youtu.be/IBpYhyy8zHc; https://www.facebook.com/100073981525812/posts/129675366175180/; https://www.bitchute.com/video/bVhOELunLKA5/). For one stakeholder, community norms were more influential in urban areas, where individuals can see and hear what others are doing or saying about the vaccine, versus in more isolated communities, as described by one stakeholder, below: “We cannot generalize this. It depends where they live. If they live in rural areas, they might not have the information for the situation; if they live in urban areas, they will be influenced by the circumstances: whatever people around them do they will also do. But there are individuals who are aware and respond; there are those who do not want to get involved; there are those who are aware but do not want to get involved.” -Balkan Sunflower Organization, stakeholder Risk Perception at the Community Level Stereotypes of ethnic minority communities were co-opted in COVID-19 messages circulating on social media, leading to perceptions of lower risk of acquiring COVID-19. Some misinformation promoted the perception that ethnic minority groups who work in recycling are accustomed to handling refuse and have a stronger immune system than the general population. Individual decisions about vaccination are made in this context of perceived lower risk of COVID-19 for these ethnic minority groups. For some participants who believe in the existence of COVID-19, they felt they were not at risk of acquiring COVID-19 because they were part of an ethnic minority group that had better immunity than others. “From our community, just a small number of people get the virus because we are very strong; our immunity is tough.” - Fushë Kosovë, man, not vaccinated “I saw in an article on Facebook that the Roma population do not get the vaccination, and they would generally say that ‘we work in garbage containers all day and we still do not get the viruses, and we still work.’ So they feel that they are secure and do not get it.” -Prizren, woman, fully vaccinated “COVID-19 didn’t really affect the Roma community. People were ill but not as much as it was talked about in the TV and Internet. In the beginning there were high numbers of infections, but in the Roma community no one was infected” - Graçanicë, man, not vaccinated Structural Level Stigmatizing Minority Communities Enforcement of mandatory curfews Earlier in the COVID-19 epidemic in Kosovo, the government introduced mandatory curfews as a strategy to control the spread of COVID-19. Focus group participants often viewed the government’s enforcement of the curfews and other protective measures in their communities 12 as stigmatizing and discriminatory. Participants said that their communities have been closely watched by the police during curfew hours, and members of their ethnic minority groups were often stopped by police checking to see that they were following the government’s protective orders, such as wearing masks, obeying curfew hours, or limiting visits to other households. As mandatory curfews were instated, these preventive steps escalated fears and frustrations about COVID-19. In most Roma, Ashkali, and Egyptian ethnic minority communities, income is derived from working outside of the home. The mandatory restrictions on mobility disrupted livelihoods and created crises in accessing food and other necessities, as illustrated by this quote from a participant: “This has been an experience just like war. We have been locked down, without food, and I couldn’t go out to work. I didn’t get any assistance from anyone.” -Prizren, man, not vaccinated Campaign fatigue and uneven targeting In some neighborhoods targeting ethnic minority communities with vaccine awareness and vaccine campaigns may have led to suspicion among the community about the motives of the mass vaccination. Indeed, when approached to participate in the study, some community members responded that they hoped this was not about the COVID- 19 vaccine. A sense of vaccine fatigue seemed evident in focus groups and interviews. “We had 35 employees in fieldwork, which reported that there were cases where people reacted harshly to them since they were tired of being asked to take the vaccine. There were those who were visited two to three times, and those who are convinced instantly. Nevertheless, people do not believe in COVID-19, they don’t know its consequences, don’t have the means to get it, they live far away, so there is low awareness around vaccination. Fake news was the greatest factor. All these worked in different ways to make people hesitate to take the vaccine.” -Balkan Sunflower Organization, stakeholder Stakeholders said efforts to promote vaccination in the ethnic minority communities had some success in certain communities but may not have reached more rural areas or communities outside of urban centers. The vaccine information campaigns led to lower vaccination rates than hoped for. Prizren was one community where stakeholders felt the door-to-door information campaigns worked well to raise awareness in the community, as the following stakeholder noted: “Indeed, they are, we went door-to-door and worked with organizations in Prizren where we helped raise the awareness of the community.” -Roma community representative, stakeholder Participants from other communities felt that no effort or limited efforts were made to disseminate information about the vaccine in their communities; door-to-door campaigns or doctors coming to talk to communities about the vaccine did not happen everywhere, even though participants felt this could have been effective in getting more people vaccinated. 13 “Yes. Maybe people would get the vaccines if it would come right at their house. But no one came.” - Graçanicë, man, not vaccinated “It still hasn’t happened that a group of doctors have come here and informed us about vaccination. They know that most of the people of Qyl neighborhood [Egyptian neighborhood in Gjakova] are unvaccinated. We have enough space for them to come and inform us about this.” -Egyptian community representative “If at the beginning of the pandemic the doctors or officials visited our community, we would trust them more. If we would have felt that we are taken care of, we would feel more secure and trust them more. We were alone within our community and helped each other how we could.” - Graçanicë, man, partially vaccinated Transportation Focus group participants said they experienced challenges in getting transportation to vaccination centers initially when fewer sites were set up, but as vaccination sites have expanded, and transportation services have been provided, transportation is no longer a barrier in the study communities. The farthest walking distance from homes in the study communities to a vaccination site was approximately five kilometers (Fushë Kosovë), with distances under five kilometers in Prizren, Gjakovë, and Graçanicë. “In the beginning when the center was in Miradi, we had a deal with the municipality to cover the transportation. We were organized to gather based on how much interest there was from people wanting to get the vaccination. If there were specific cases, we had a budget from UNICEF to send them by car. In the beginning without the project, it was hard, but then with the project the problem was solved.” -Ashkali civil society representative Stakeholders noted that it is plausible that transportation is still a potential barrier for members of Roma, Ashkali, and Egyptian communities living outside of urban centers, even though this has been resolved in study communities. Scheduling Appointments Appointments were initially required for getting a vaccine. For several months now, participants have noted that anyone can walk into a vaccine center and receive a vaccine without an appointment or waiting in line. Participants felt that while this is a positive change, this information has not reached all communities, and many still believe appointments are required to receive the vaccine. “For rural areas it is more problematic. But urban areas have it easier because there are several NGOs [nongovernmental organizations] who are engaged with this. Appointments are the main problem. How would you expect an old lady to make appointment for herself?” -Prizren, man, fully vaccinated 14 “It is easy, and it is close by, at the health center. You don’t need transportation and there is no need for appointments either. I didn’t have to wait for my third dose at all.” - Graçanicë, man, fully vaccinated “The center is here, we work all day, seven days per week, during the week we work from 7 to 9, in the weekends from 7 to 4. We even went close to help them with [outreach] so that we left them no space to complain about transport or financial conditions. We were stationed in Mosques, stores, and FMCs [Family Medicine Centers].” - Gjakovë, female, vaccination nurse Identification Documentation Requirement Identification documents (IDs) are required to receive a vaccine. One participant reported the innovative strategies used to access IDs for people who want to get vaccinated but do not have identification: “Only the vaccination card, of course, without an ID, you cannot be put into the system, there were some two–three people who had no documents, but we communicated with the assembly and got their personal numbers without which we cannot put them into the system.” - Gjakovë, female, vaccination nurse Health care providers are not required to take this extra step to acquire an ID, it is not a standard practice or a resolution to the problem. According to a UNICEF representative, the issue of the identification documents has left some in the study communities unvaccinated. Participants felt that people in the study communities are aware of the identification requirement for vaccination and this has deterred people from coming to vaccination centers. “One of the issues is registration; one of the problems was that they couldn’t be put in the system; therefore, they couldn’t get vaccinated, and then it is because of their perceptions, which stem from misinformation.” - UNICEF, stakeholder Participants said that this may be an issue for many, whether born in Kosovo or another country. It is unclear the actual number of residents in the study communities or similar communities who may lack identification documents. “There are a few families which don’t have ID cards, and you need one to get vaccinated. This is one of the obstacles. But this is only some five or six families.” - Graçanicë, man, fully vaccinated “Not really [there are no barriers], except IDs they do not need anything else, but indeed, there are a number of people who came from Serbia, Montenegro, but we tried to help them with the documents.” -Ideas Partnership, stakeholder 15 Facilitators Promoting Vaccine Acceptance In addition to barriers to vaccine acceptance, several important facilitators were discussed in the focus groups and in-depth interviews. The study team prompted participants about collective responsibility, whether the respondents feel their decisions impact the well-being of others. Generally, participants agreed that the vaccine protects not only the individual but could protect others in the community as well. Many who held this view were still not vaccinated or would not allow their family members to get vaccinated. This hesitancy could reflect a “wait and see” approach where people are waiting for others to be vaccinated to see how they react before getting the vaccine themselves, or it could indicate that the concept of herd immunity is not quite clear in the community. “No, it would not help protect other people.” - Prizren, man, not vaccinated “I don’t really know. What is the difference between those who get the vaccine and those who don’t?.” - Prizren, man, not vaccinated Several unvaccinated participants said that they felt that the vaccine would indeed protect others from the virus, but they have not gotten the vaccine because of their limited autonomy in making this decision. “Yes, I would take the vaccine to protect them.” - Prizren, woman, not vaccinated "The best would be if all people got vaccinated" - Graçanicë, woman, not vaccinated Influential Individuals Focus group participants identified individuals in their communities whose opinions were respected. These often included the highly educated who served as community leaders, and individuals who work in civil society organizations, who were themselves members of the ethnic minority communities. Community leaders were generally well-respected and influential in vaccine decisions in extended family networks and the community. Several examples of influential leaders are reflected in the following quotes: “When I got vaccinated and posted it on Facebook, it wasn’t even in 15 minutes that about seven relatives reached out to me asking how to take the vaccine. So, my own case has affected some people to take it, and this has pushed me to do the project to create role models which influence getting the vaccine.” - Balkan Sunflower Organization, stakeholder Stakeholders pointed out that while some in the community respect their representatives in Parliament, religious leaders, and politicians, there are community members who do not consider politicians as trustworthy; view those in politics as not representing the interests of the 16 community but as pursuing their own personal interests and personal gain. Community members also have different relationships with religious leaders, where for some these are well- respected leaders but for others this is less so. “Politics has great impact on this actually. I can mention Fridon Lala, who is an MP in the Parliament of Kosovo; then is Armend Beluli in the Municipal Assembly, Pranvera Kershi an official in the municipal office for the communities, Artan Berisha from Rugova and a representative in one of the ministries. They all have representatives in the respected municipalities. I can give you the list of people, for example, in our neighborhood [names of community leaders], and I can tell you more later if you need. There are people who can be viewed negatively from their own community so we should be careful about this. The most impact on the community is the Islamic community. The imam, sheikh, and the priest also have their impact on different regions.” - Bethany Christians Services, stakeholder Mandatory Vaccine Policies The main impetus for receiving a vaccine among most focus group participants was mandatory vaccination policies by employers or by the government for travel visas. Only a few participants said that they received a vaccine as a personal choice. This is a notable structural-level facilitator for vaccine acceptance. 17 PART IV - RECOMMENDATIONS These findings highlight specific individual, social, and structural barriers for accepting a vaccine and should be addressed to increase vaccination in study communities. Important facilitators for receiving a vaccine provide useful information on who in the community to engage and how to effectively promote vaccines in these communities. The lessons of previous vaccine campaigns that overwhelmed some in the communities and underwhelmed others reminds implementers to consider careful monitoring of where interventions are too thin and where communities are saturated by vaccine promotion. Addressing these factors will require multicomponent and innovative interventions while recognizing that not everyone has the same concerns or needs. Reasons for not getting a vaccine are not monolithic. Not everyone has the same views or gets their information from the same sources. A one-size-fits-all approach to vaccine promotion will likely fail. There is a strong rationale for tailoring interventions to subgroup-specific needs. As part of the analysis of study data, the study population was segmented into subgroups according to individual views and concerns. Four main subgroups were identified: 1) Subgroup 1, Deniers: This group does not believe in the existence of the COVID- 19 virus. These views are rooted in religious beliefs and in conspiracy theories that COVID-19 is propaganda spread by specific individuals for their own personal benefit. For this group, the vaccine is considered unnecessary. Communication campaign fatigue should be considered in designing interventions targeting this subgroup. 2) Subgroup 2, Fearful: For this group, fear of the potential side effects of the vaccine outweigh fear of getting COVID-19. Individuals in this group often have other chronic health problems and are afraid that the vaccine may worsen their condition. They tend to believe the information about potential side effects of the vaccine, mainly infertility and misinformation about the contents of the vaccine that conflict with religious beliefs. This group gets information from family members, local influencers, and television, particularly local television stations. Older grandparents or parents get information from social media indirectly through their children. 3) Subgroup 3, Mistrusting: Doubts of the effectiveness of the vaccine deter this group. The vaccine is seen as ineffective in their own protection or for the protection of others. These views are reinforced by observing individuals who have been vaccinated, getting COVID-19 and transmitting it to others. This group gets information from local influencers, social media, and television. 4) Subgroup 4, Lack of identification: This group may have an interest in receiving the vaccine but do not have the required identification documents. Removing or developing alternative documentation in the form of a voucher or other could facilitate access to vaccines for this group. Using this segmentation approach, interventions can be designed for specific subgroups. Several interventions are recommended here, and while they may be relevant to all groups, 18 segmentation offers a guide in selecting interventions that may be particularly effective for one subgroup or another. Considerations for subgroup-specific interventions are presented in Table 3. Table 3. Subgroups, Key Issues and Barriers, and Tailored Interventions Subgroup Issues and barriers Intervention Subgroup 1, Deniers Disbelief in existence • Door-to-door awareness of COVID-19; raising by influencers religious beliefs that (imams, educated community illness and death are men) God’s will and not • Incentive packages due to the virus; and conspiracy theories that the pandemic was devised for the benefit of a few Subgroup 2, Fearful Fear of side effects of • Social media targeting youth the vaccine, belief • Local television targeting that vaccine causes adults infertility, • Door-to-door awareness exacerbates chronic raising by influencers illness, weakens the (imams, doctors, respected immune system, and community leaders) can cause death • Incentive packages Subgroup 3, Doubt about vaccine • Social media targeting youth Mistrusting effectiveness and • Local television targeting safety based on adults misinformation, • Door-to-door awareness observation of raising by influencers vaccinated getting (imams, doctors, respected COVID-19, and community leaders); NGO mistrust of the health representatives, health system more workers generally • Incentive packages Subgroup 4, Lack ID Official identification • Develop policy alternative requirement is a to identification barrier to individuals requirement who have never officially registered as residents of Kosovo Source: Authors Note: NGO = Nongovernmental organization. 19 Raise Awareness Raise awareness about COVID-19 and how it is transmitted, about the fact that everyone is at risk and that it can cause severe illness, even death. At higher risk are the elderly and those with underlying health conditions (e.g. hypertension, diabetes, immunocompromised). Up-to- date information about effective protective measures such as wearing masks, physical distancing, handwashing, and vaccines should be emphasized. Message should also clarify that appointments are not required for receiving a vaccine and that transportation services are available. To raise awareness, one approach that was recommended by stakeholders is door-to-door education. While door-to-door awareness-raising efforts were made in some communities, primarily Prizren, study data indicated that not all communities received this type of intervention. Work with communities to identify and train teams of influential community leaders (religious leaders, respected opinion leaders), civil society representatives, and respected health care providers who support vaccination efforts by visiting door-to-door, sharing accurate information; directly addressing misinformation; and, as appropriate, accompanying individuals to vaccine centers for vaccination. Religious leaders may be critical for some in dispelling beliefs related to COVID-19 vaccine contents that might be perceived as antireligious. Imams may have influence in certain communities and among certain individuals. Engaging political parliamentary representatives will be less effective because of the poor perceptions of the motives of politicians among some members of the study communities. Identified teams should be trained in disseminating accurate information about the severity of COVID-19 and the importance of vaccines as the primary prevention strategy, information about the effectiveness and safety of the vaccine, and how to correct misinformation identified in study data. The training should emphasize the role of community leaders in raising awareness in the community. Considering the influence of the community leaders in these communities, paying community leaders for their time and participation in training sessions and in vaccine awareness-raising activities could encourage community leaders’ participation and show leaders they are a valued resource for maintaining the health and well-being of the community. Address Misinformation Directly address misinformation about the existence of COVID-19 and the safety and effectiveness of the vaccines. Messages about COVID-19 should emphasize that everyone is susceptible to the disease, that it can be fatal, and that no group has special immunity against the disease (e.g. Roma and other ethnic minority groups do not have particular immunity). Messages about the vaccines should focus on clarifying misinformation about negative effects of the vaccine on reproductive health and the immune system; and ensuring vaccine safety, clarifying the contents of the vaccine and the vaccine development process. To address misinformation, one approach is door-to-door awareness raising, to spread accurate information and to correct specific misinformation directly in person. Messages from trusted health care providers and community leaders can be posted on social media targeting young 20 adults and adolescents and broadcasted on local television stations targeting adults. Teams trained in awareness raising can organize to ban paper pamphlets spreading misinformation in their communities and can solicit support from government officials to control misinformation on local media outlets. Strengthen Trust Lack of trust in health care providers and health care institutions is an enduring issue in the Roma, Ashkali, and Egyptian communities. Strengthening trust will facilitate more openness to accepting the vaccine. One approach for building trust is to engage health care providers, health communication specialists, scientists, and religious leaders to post accurate information and videos on social media targeting parents/caregivers, adolescents, and youth. Shift Social and Gender Norms Raise awareness among families, parents, and caregivers about the risks of COVID-19 and the safety and effectiveness of vaccines in preventing severe illness. Correcting misinformation that the vaccine causes infertility can help ensure access to vaccines for women and children, particularly girls. Identify male heads of households and their families who willingly chose to receive the vaccine to protect their families, to share their stories on social media. Another approach is to implement mandatory vaccine policies, which can force behavior change before norm change related to vaccination has shifted. While vaccine requirements mandated by employers or for travel seem to have been the impetus to get vaccinated for many in this study, mandatory vaccines for health care providers, for example, can provide important protection for vulnerable populations and over time could normalize COVID-19 vaccination as a standard practice for certain groups. Address Structural Barriers Stigma Consider overall effects interventions may have on marginalized communities. Working with trusted civil society representatives and community leaders will be key in building support for vaccine efforts and taking a “less is more” approach to avoid overwhelming communities or generate doubt about motives. Transportation Transportation appeared not to be an issue in the study communities. However, more isolated minority communities, or elderly or disabled residents in those communities, may experience transportation as a barrier. The extent to which transportation is an issue in ethnic minority communities should be investigated, and communities where transportation is still a barrier should be identified. Establish transportation services in those areas and disseminate information about the services. Identification requirement 21 Remove the identification document requirement or develop an alternative for those who do not have identification documents for vaccination, and disseminate information that IDs are not required for vaccination. Widely disseminate information that appointments are not required for receiving a vaccine through local television stations, social media, and door-to-door. Incentives and vouchers A family hygiene package (e.g., basic toiletries) was recommended by stakeholders as a potentially effective incentive. Incentive packages should only be provided if all members of the household are vaccinated. Incentives should be provided to all community members, regardless of the dose received (first dose, second dose, booster). Vouchers that can be exchanged for incentive packages after vaccination can be distributed as part of door-to-door awareness- raising activities Limitations Several limitations of this study should be noted. This qualitative study provides evidence on the range of barriers and key issues in the marginalized groups included in this study. The findings and recommendations cannot be generalized to groups outside of the study participants. Limited data were available on knowledge of the vaccine and knowledge of COVID-19 epidemiology and prevention, other than ever having heard about the vaccine and the disease. The associations between vaccination acceptance; knowledge about the vaccine; and knowledge about COVID-19, age, education, and occupation could not be explored due to limitations in the data. Data collection for this study was one time only, giving a snapshot in time of a rapidly evolving pandemic. Conclusion Multilevel factors influence vaccine acceptance among the Roma, Ashkali, and Egyptian ethnic groups in Kosovo. The proliferation of misinformation via media and social media, and historic mistrust of health care institutions and providers are key factors in low vaccine acceptance. Vaccine programming could be more effective if tailored to specific needs of subgroups in the population. 22 REFERENCES Biswas, M. R., M. S. Alzubaidi, U. Shah, A. A. Abd-Alrazaq, and Z. 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Ng, et al. 2020. “Acceptance of the COVID-19 Vaccine Based on the Health Belief Model: A Population-Based Survey in Hong Kong.” Vaccine 39: 1148–56. World Bank. 2020. “Kosovo, Vaccine Survey,” June. Washington, DC. 24 ANNEXES Annex 1: Focus Group Discussion Recruitment Tool Hello, my name is from Kantar Index Kosova. As part of an important research study on access and factors behind vaccine uptake among Roma, Ashkali and Egyptian communities in Kosovo, we’re asking people in your community to take part in a focus group discussion. If you match the participation criteria and take part in the focus group, you will be rewarded for your time. As a part of the recruitment procedure, I would need to ask you a couple of questions to see if you match the participant type we are seeking for participation in the study. May I continue? 1. Yes – Continue 2. No – Terminate and Thank Q1. Have you participated in a focus group discussion in the last six months? 1. Yes – Terminate and Thank 2. No – Continue Q2. Gender (Do not ask) 1. Male 2. Female Q3. How old are you? 1. Below 18 years – Terminate and Thank 2. 20 – 35 years – Continue 3. 36 – 45 years – Continue 4. 46 – 50 y.o. – Continue 5. 51+ y.o. – Terminate and Thank Q4. What is your ethnicity? 1. Roma 2. Ashkali 3. Egyptian Q5. What is your marital status? 1. Married 2. Divorced 3. Single 25 Q6. Could you please tell me whether you are 1. Fully vaccinated 2. Partially vaccinated 3. Not vaccinated 4. Refuse Q7. Can you please tell me if you are currently employed; and if so, what type of work you do? ________________________________________________________________ Q8. How many years of formal education have you completed? ___________ years Q9. Which of the following do you have in your household in functioning order? Yes No Don’t know a. TV 1 2 3 b. Computer/Laptop/Tablet 1 2 3 c. Smart Phone 1 2 3 d. Internet 1 2 3 e. Cable TV 1 2 3 f. Car 1 2 3 Q10. What are your main tools of information? 1. ________________ 2. ________________ 3. ________________ Q11. When was the last ad you saw about health and where? ________________________________________________________________ Q12. Would you describe the area where you live as urban or rural? 1. Urban 2. Rural 26 Q13. Can you please tell me where you live at the moment? Please specify: City/Village: ________________ Municipality: ________________ We would like to invite you to participate in a focus group discussion with people from our country about COVID-19 vaccination uptake. The discussion will last about 90 minutes. For your participation, you will be rewarded for your time. The focus groups will be held the week of , and while they will be recorded, your identity and responses will remain completely confidential. If you are interested, someone will phone to confirm the exact time of the focus group discussion. Q13. Name and surname of the participant:__________________________________ Q14. Telephone:________________________________________________________ 27 Annex 2: Focus Group Discussion Guide Introduction and warm-up session Welcome to our group. My name is from Kantar (Index Kosova). As we explained in our initial contact, we are conducting a research study on access and factors behind vaccine acceptance among Roma, Ashkali, and Egyptian communities in Kosovo. Let me inform you again that we are video recording this session, only for the purposes of the analysis, while the video will remain only in our office and will not be shared with the third parties. Please feel free to express your thoughts freely, there are no right or wrong answers. 0. I would like to start with a question concerning your daily routine. Please think about your typical day. From the moment you wake up, for example, you have your coffee? And then what? MODERATOR: Gather detailed information about the daily activities of the participants in the group from the moment they wake up until they fall asleep. Focus on movement (where do they go and for which purpose) and information gathering (TV/social media, word of mouth, etc.) Let’s switch the topic here. I would like to talk about health care in general now. 1. When was the last time you have visited the doctor? Was it for you or for other family members? Where did you go (public vs. private)? Why particularly that institution? (Probe: closer to home, better treatment, more affordable, you feel more at ease with the providers?). Did someone recommend it? How did you find out about that place/doctor? 2. What happened there? How was the treatment? Were there any obstacles? Can you tell me more? 3. Was there any moment when you might have felt uncomfortable? Why was that? How was the treatment from the medical staff? Did the doctor answer all your questions? 4. Do you trust health authorities (doctors, nurses, etc.)? Why is that? Why don’t you/do you trust them? What makes them (not) trustworthy? 5. Did the doctor prescribe any treatment for you? What were they? Did you take the medication? If not, why didn’t you take the medication? (if price related, Probe: if it would have been free, would you have taken it? Why?) 6. Let’s continue further on the subject of health. What do you believe are the most immediate health threats to you personally? (MODERATOR: make a list of the diseases the respondents mention). Are you facing them at the moment? How are you dealing with them? (home remedies, doctors) 7. What do you believe are the most immediate health threats that might affect not only you but also your community? (MODERATOR: make a list of the diseases the respondents mention). If not mentioned spontaneously, ask: 8. What about COVID-19? Have you heard about the COVID-19 virus? 9. How serious would you say this virus is? What are the chances that you might get infected with COVID-19? Why is that? 10. How often do you think about COVID-19 and its impact and risks? 11. What is your biggest concern with regard to the COVID-19 vaccine? 28 12. Are you concerned that COVID-19 could cause you to have serious health complications? What kind of complications would those be? 13. Have you or any other member of your family been infected with COVID-19 virus in the past two years? (if yes) when was this? 14. Have you ever been tested for COVID-19? When was that? What were the results? Where did you test, in which facility? Why there? Why did you test? (Probe: symptoms, fear) 15. What were the symptoms? What did you do? Did you go to the doctor? Why is that? What else did you do to manage the symptoms? (Probe: home remedies, taking vitamins, etc.) 16. How did it affect your family and community? Can you please tell me a story when you or someone else in your community was infected with COVID-19? How did they deal with the virus? 17. Has anyone from the community died from COVID-19? (if yes) What happened? 18. Do you believe there is prevention for the COVID-19 virus? If yes, what is it? How can we prevent it? What are the health care measures? (Probe: washing hands, social distancing, hygiene, vaccination, etc.). Where did you hear about these measures (MODERATOR: if the respondents show knowledge about the health care preventive measures, find out in detail their source of information). (if vaccination is not mentioned spontaneously, ask). 19. Have you heard of the vaccination that is used as a preventive means against the COVID-19 virus? If yes, where have you heard about it? (Again, solicit details about the source of the information) 20. Do you believe this vaccine is effective? Do you think it works? Why is that? Can you mention three advantages of the vaccination? How about disadvantages? Why is that? 21. When you think of the people in your surroundings, would you say they support the vaccination or not? Why is that? Who supports it? Who doesn’t? Why is that? 22. Have the people from the community been vaccinated? Why? (if not) What are the barriers? What is stopping them? What about your family members (ask separately for elderly, adults, and children above the age 12), have they been vaccinated? Why is that? What were the reasons they decided to get/not get vaccinated? How much did you trust the [health care providers] who gave you a COVID-19 vaccine? 29 23. What about you? Have you been vaccinated against the COVID-19 virus? Why is that? (if yes) What made you decide to get vaccinated? Why did you go? Who advised you? Why is that? How important did you think getting vaccinated against COVID-19 was for your health? How concerned were you that a COVID-19 vaccine could cause you to have a serious reaction? 24. How easy do you think it is to get COVID-19 for you, your family, your friends? Why is that? 25. A percentage of the population from different communities in Kosovo decided not to get vaccinated. In this matter, I would like you to think about someone from your community who is not vaccinated and tell me what could be the reasons why they particularly decided not to get vaccinated. I do not need that person’s name, just the reason for choosing not to get vaccinated. (MODERATOR: make a list of all the reasons the participants mention and explore each of them). We spoke about the reasons why someone may not want to get vaccinated. Now I want you to continue thinking about the same people (people who did not get vaccinated). 26. If those people decided that they would want to get vaccinated, could you please tell me how easy or difficult would it be for them to get the information on the effects and side effects of the vaccine? Why is that? Where would they get this information? What would they have to do? How would they do that? (MODERATOR: ask for specific examples here; that is, they can ask the community leader, ask in the health care facility etc.). Would they have any barrier here (understanding the written materials, understanding what the doctor is saying)? Why is that? Is that an extra expense for them? 27. And if these same people decided that they would want to get vaccinated, could you please tell me how easy or difficult would it be for them to reach that vaccination center? Why is that? Where would they have to go? Where is the nearest vaccination area near you? Would they have to use transportation? Is that a barrier? 28. And if these same people decided that they would want to get vaccinated, could you please tell me if they would need specific documents to do that? Is that a barrier? Why is that? 29. And if these same people decided that they would want to get vaccinated, do you think they would need permission or to be escorted by a family member? Why is that? What would they have to do? 30. Speaking of COVID-19, what do you believe are the most effective ways to stop the spread of the virus? Why is that? 31. How safe do you think a COVID-19 vaccine is for you and your family? Do you believe vaccines can stop the spread of the virus? How so? 30 32. Do you think getting a COVID-19 vaccine for yourself would protect other people in your community from COVID-19? How does that work? 33. Speaking of COVID-19, respecting raising awareness in your community, which institution would you say should deal with this issue? Who do you believe would do the best job? (Probe: international organizations, if yes, which? Local NGOs, if yes, which?). Last few questions in our session. Thank you for your collaboration so far. 34. Please tell me how do you get informed about the events in your country? (Probe: TV, social media, word of mouth)? (if TV and social media) which ones specifically? (if word of mouth) from whom specifically? (Probe: peers, family members, community authorities, and organizations). 35. Thinking about information related to health care specifically, how do you get informed (specify)? (Probe: community talks in organizations, health care facilities). 36. When was the last time you were informed about health care? Where did you get that information? Were there any recommendations included in the information? Did you apply the recommendation? Why yes, why no? How? Can you explain? 37. Have you seen or heard any information about COVID-19 vaccines? (if yes) Can you explain them a bit? Where have you seen them? How do you feel about the information you’re getting on COVID-19? 38. What is the most important source of information when it comes to the COVID-19 vaccine? 39. Who do you trust the most for advice on the COVID-19 vaccine/health-related concerns? Is there any personality (TV, politician, well-known face) that you would say you trust? Who is that person? Would that person be suitable for conveying health care messages? Why? 40. If you had a choice, where would you prefer to get the vaccine? What would motivate you to get vaccinated? Thank you! 31 Annex 3: In-Depth Interview Guide Introduction and warm-up session Thank you for agreeing to take part in the interview. My name is from Kantar (Index Kosova). As we explained in our initial contact, we are conducting a research study on access and factors behind vaccine acceptance among Roma, Ashkali, and Egyptian communities in Kosovo. Let me inform you again that we are audio-recording this session, only for the purposes of the analysis, while the video will remain only in our office and will not be shared with third parties. Please feel free to express your thoughts freely, there are no right or wrong answers. 1. To start with, could you briefly explain your position and your involvement with the Roma, Ashkali, and Egyptian communities? 2. How do you think the pandemic (COVID-19) affected the Roma, Ashkali, and Egyptian communities overall? Was there any specific impact? (Probe: for impact in social welfare and health care). 3. A series of focus group discussions with the community have revealed that only a small portion of the community has been vaccinated. Out of those who were vaccinated, they did it either because they were obliged by the employer or because they had to travel and needed it for the visa purposes but rarely or never voluntarily. Why would you say this is? What is the reason for this type of attitude toward vaccination? 4. Do you believe the Roma, Ashkali, and Egyptian communities perceive the COVID-19 virus as a threat to them? What about to the vulnerable member of the family or community? (Elderly, people with chronic diseases, children). Why is that? How serious do they consider this disease to be? 5. How aware do you believe the Roma, Ashkali, and Egyptian population is about the causes, symptoms, and consequences of the COVID-19 virus? Why is that? 6. What about the vaccination against COVID-19? How aware do you believe is the Roma, Ashkali, and Egyptian population about the vaccination process in general? Why is that? Let’s move further into the topic. 7. How much trust do you think the Roma, Ashkali, and Egyptian communities has toward Kosovo institutions in general? Do you believe they respond to the communications and calls of the government or the institutions? Why is that? What about different communications and calls from the Ministry of Health? Do they penetrate to the community? Why is that? (Moderator: Check the authority of the health care institutions) 8. What about health care authorities (doctors, nurses, etc.)? Why is that? Why don’t/do you trust them? What makes them (not) trustworthy? 9. Are the health care recommendations by the institutions accepted and addressed by the community? Why is that? Is it different when they are communicated through doctors? 32 10. Have there been any efforts by the health facilities, formal public institutions, or community organizations toward improving vaccine acceptance among Roma, Ashkali, and Egyptian population? Please elaborate on those efforts. I would like you to think about one or more specific individuals of the Roma, Ashkali, and Egyptian communities who are not vaccinated. 11. Could you please tell me, how easy or difficult it is for them to get vaccinated? Why is that? What are the specific barriers? 12. If those people decided that they would want to get vaccinated, could you please tell me how easy or difficult would it be for them to get the information on the effects and side effects of the vaccine? Why is that? Where would they get this information? What would they have to do? How would they do that? (MODERATOR: Ask for specific examples here; that is, they can ask the community leader, ask in the health care facility, consult imam, etc.). Would they have any barrier here (understanding the written materials, understanding what the doctor is saying)? Why is that? Is that an extra expense for them? 13. And if these same people decided that they would want to get vaccinated, could you please tell me how easy or difficult would it be for them to reach that vaccination center? Why is that? Where would they have to go? Where is the nearest vaccination area to you? Would they have to use transportation? Is that a barrier? 14. And if these same people decided that they would want to get vaccinated, could you please tell me if they would need to bring specific documents to do that? Is that a barrier? Why is that? 15. Our findings from the focus groups indicate that the young men and women are prohibited by their parents to get vaccinated because of sterility as a potential side effect of the vaccination. If these same people decided that they would want to get vaccinated, do you think they would need permission or to be escorted by a family member? Why is that? What would they have to do? 16. Are there other obstacles that we did not mention here? If yes, what are they? Thank you for your collaboration so far. 17. Please tell me what are the main sources of information for the Roma, Ashkali, and Egyptian communities, specifically for health care recommendations? (Probe: TV, social media, word of mouth)? (if TV and social media), which ones specifically? (if word of mouth) from whom specifically? (Probe: peers, family members, community authorities and organizations). 33 18. Thinking about information related to health care specifically, how do they get informed (specify)? (Probe: community talks in organizations, health care facilities). 19. Who do they trust the most for advice on the COVID-19 vaccine/health-related concerns? Why is that? What about public institutions? And international organizations and local NGOs? (Probe and see which ones specifically are perceived as trustworthy by the community). 20. If we or someone would like to communicate to the Roma, Ashkali, and Egyptian communities about COVID-19 and vaccination, raising awareness and increasing the vaccination intake, what do you believe is the most effective way? How would you recommend we approach this matter? 21. What are the channels of the information you would recommend we use (Probe: direct talks, media, through organizations, etc.)? 22. Who should be the person to communicate the message? Who do you think should be involved? Anyone the community worships/respects? If yes, who are they (Moderator: Ask for specific names. Probe for names such as Albert Kinolli, Qazim Rrahmani, and Veton Berisha). What about Imams? Anyone in particular? 23. What do you believe is the most effective way to approach them? (Probe for tools to be used, activities?) 24. What should the messages focus on? How effective is the issue of social responsibility? I would like to discuss with you some of the findings from the discussion with the community. I would like to hear your perspective on these findings 25. It has been noticed from the focus group discussions that one of the barriers to vaccination is lack of trust in health care institutions. According to your opinion, what are possibilities to address this barrier to the community (i.e., do the vaccination in private institutions)? What would be a result of that? 26. An excessive fear of vaccination, especially related to side effects and potential consequences, such as getting sick and having problems conceiving children were noticed in the community. Where do you think that comes from? How can we inform the community about the research findings that vaccination has shown no impact on the reproductive system? Thank you! 34 Annex 4: Paper Pamphlets Disseminated in Study Communities 35 36 37 Kosovo has fully vaccinated 45.5 percent of the population, below what is needed to slow the spread of COVID-19. The Roma, Ashkali, and Egyptian communities, as marginalized ethnic groups, have been identified as high risk for acquiring COVID-19 and for lower acceptance of vaccines. Factors associated with vaccine acceptance are examined in this qualitative study among Roma, Ashkali, and Egyptian community members and representatives from civil society, community leaders, health care providers, and government working directly within these communities. Using a social-ecological model, intrapersonal, interpersonal, community, and structural factors influencing vaccine acceptance were identified. Intrapersonal-level factors centered on fear of side effects and doubt about vaccine safety and effectiveness, and lack of trust of health care providers; at the interpersonal level, male head of households decided for the entire family whether to receive the vaccine; in the social context at the community level, exposure to prolific misinformation on social media, television news, and paper pamphlets distributed in study communities created fear, doubt, and anxiety about vaccines, and stereotypes about the strong immune systems of ethnic minority groups reinforced beliefs about the communities low susceptibility to COVID-19; and structural-level barriers included the requirement for identification documents, and a buildup of doubt about motivations of the vaccinators created by massive vaccine-promotion efforts and police harassment in implementing curfew, and other protective measures targeting ethnic minority communities. Implications of these findings highlight a need for a segmented approach in designing subgroup-specific and multicomponent interventions to promote vaccine acceptance. Strategies include training local opinion leaders in door-to-door awareness raising, directly addressing misinformation, and distributing vouchers to be exchanged for incentives after vaccination; using social media where respected health care providers and community members post videos promoting vaccination; and removing or providing an alternative to identification requirements. ABOUT THIS SERIES: This series is produced by the Health, Nutrition, and Population Global Practice of the World Bank. The papers in this series aim to provide a vehicle for publishing preliminary results on HNP topics to encourage discussion and debate. The findings, interpretations, and conclusions expressed in this paper are entirely those of the author(s) and should not be attributed in any manner to the World Bank, to its affiliated organizations or to members of its Board of Executive Directors or the countries they represent. Citation and the use of material presented in this series should take into account this provisional character. For free copies of papers in this series please contact the individual author/s whose name appears on the paper. Enquiries about the series and submissions should be made directly to the Editor Jung-Hwan Choi (jchoi@worldbank.org) or HNP Advisory Service (askhnp@worldbank.org, tel 202 473- 2256). For more information, see also www.worldbank.org/hnppublications. 1818 H Street, NW Washington, DC USA 20433 Telephone: 202 473 1000 Facsimile: 202 477 6391 Internet: www.worldbank.org E-mail: feedback@worldbank.org