Issuu

Measuring Trust in Health Systems & Vaccines Read more: www.thevaccinetrustproject.com

Table of contents 1.

Context: Why investigate trust? And how we approached it

Introducing the Vaccine Trust Framework: Contextualizing the framework as a tool for building efficient and resilient health systems & driving vaccine uptake

Quadrant-specific chapters: For each, key quadrant characteristics, impact of low trust, a gender lens, and hypothesis dimensions will be covered

Health System Promise

Healthcare Delivery

Vaccine Promise

Vaccine Delivery

Summary: Hypothesis dimensions and trust implications 2

C O N T E X T

Trust is increasingly in-focus as a critical component in driving health-seeking behavior – but it is also clear that there is no consensus on how to understand and work with trust There is consensus that trust is But it has also become clear important, particularly after the that there is no consensus on COVID-19 pandemic how to understand – and measure – health-related trust “Trust is an area where governments can move the needle, and the fact that it outweighs traditional measures of healthcare capacity and pandemic preparedness should be a wakeup call for all of us as we face the ongoing pandemic and the threat of future disease outbreaks”

The existing literature on trust is messy – there is a lack of agreement on what trust in health systems and vaccination is, and how to measure it1. Existing measures lack specificity and granularity and are difficult to use for decision-making. This has led to a variety of initiatives across organizations looking to better quantify trust.

Thomas J. Bollyky, director of the CFR global health programme & author of a recent Lancet study showing a link between trust and COVID-19 vaccination rates

1. 2.

This is particularly true in low-income contexts

In our review of the literature on measuring healthand vaccine-related trust, we have identified a notable gap when it comes to measuring trust in low-income contexts. Almost all existing trust measures have been designed, tested, and validated in US populations. In a recent review of more than 30 studies of trust and vaccine acceptance,2 only one was based in a middle-income country, and none in low-income countries.

How do you measure trust in the health system? A systematic review of the literature. Ozawa & Sripad. Soc Sci Med. August 2013 Measuring trust in vaccinations: A systematic review. literature. Larsen et al. Hum Vaccin Immunother. 2018

C O N T E X T

Our review of the trust literature has revealed four major challenges with existing ways of measuring trust CHALLENGES

Trust measures are situational and imprecise

There is a lack of agreement on what trust is

Most trust measures are Western-centric

Trust measures are removed from decision-making

Existing trust measures are developed in an ad hoc manner and are rarely grounded in a deep, contextual understanding of trust

There is disagreement within the quantitative trust literature on what trust is, which dimensions are important, and how to measure them

Existing trust measures are developed and validated in a Western context with insufficient attention to potential LMIC specificities

Existing trust measures devote little attention to solutions and decisionsmakers’ perspectives and are rarely applied outside of academia

“More work should also be done to improve existing trust measures. Validity of the measures could be strengthened by using qualitative methods and pilot-testing scales and indices.” 1

“People's trust in the health system plays a role in explaining one’s adherence, access to and utilization of medical care [..]. Yet it is not easy to find trust measures and understand what they are measuring.” 2

“While we found growing numbers of health systems trust measures, very few were developed and validated in lowand middle-income countries.” 3

“Improving well-being requires solid evidence that can inform policymakers and citizens where, when, and for whom life is getting better… Nevertheless, certain topics have not yet received the attention […]Trust is one of these topics.” 4

1: Ozawa, Sachiko, and Pooja Sripad. "How do you measure trust in the health system? A systematic review of the literature." Social science & medicine 91 (2013): 10-14. 2: *How do you measure trust in the health system? A systematic review of the literature. Ozawa & Sripad. Soc Sci Med. August 2013

3: Ozawa, Sachiko, and Pooja Sripad. "How do you measure trust in the health system? A systematic review of the literature." Social science & medicine 91 (2013): 10-14. 4: OECD Guidelines on Measuring Trust. OECD. 2017

C O N T E X T

Given the gaps in trust understanding, we have embarked over the past 2 years on a three-stage process of framework development WE ARE HERE

Developing a framework & hypothesis dimensions The initial vaccine trust framework, and hypothesis dimensions, were developed in a COVID-19 context, through deep qualitative research & a literature review.

Refining & expanding the dimensions The dimensions have been re-assessed, refined, and expanded through the lens of another intervention: HPV vaccination.

Operationalizing The framework will be operationalized through a survey – and made available to decision makers in a collaborativelydeveloped, visualized tool.

C O N T E X T

Investigating trust during COVID-19 offered an opportunity to examine trust in health systems – while HPV has provided a lens for examining the ‘extremes’ of trust… COVID-19 provided a highly accessible and expansive context for understanding trust…

…while HPV represents a chance to explore more specific characteristics of trust

The COVID-19 pandemic was characterized by near-universal campaign awareness, including much public discussion of the disease, spread-prevention measures and vaccination itself. This openness put a spotlight on trust as a major contributor to demand, and allowed for the exploration of how trust in a health-seeking context relates to broader societal trust.

HPV vaccination represents an entirely different context, with a highly specific (and sensitive, gendered) target group and an unfamiliar disease area. This immunization is also preventative over the much longer-term and relies on a complex decision-making process. These characteristics allow us to explore additional nuances of trust.

The goal is that combining these two cases will result in a robust, widely-applicable tool for understanding, measuring, and eventually building trust to build a stronger demand for vaccines as they become or are made available Images: Bloomberg, GAVI

C O N T E X T

Limits to the framework’s applicability do of course currently exist, highlighting areas where further work will be needed to demonstrate relevance The two vaccination efforts studied are characterized by important similarities & differences E.g. similarities between C19 & HPV:

E.g. differences between C19 & HPV:

 Prevent relatively unfamiliar diseases

 Acute (COVID-19) vs. routine (HPV) intervention contexts

 Evolving science and changing guidelines (e.g., shift from just girls to gender neutral in Kenya)

 Different target groups, i.e., adults (COVID-19) and adolescents (HPV)

And, for HPV, we have studied two different stages of intervention roll-out In Kenya, the HPV vaccine has been introduced nationally and there’s now a need to drive uptake

In Pakistan, HPV vaccination delivery is in active planning – but has not yet been rolled out

“Currently, 60 per cent of all eligible girls have received the first of the recommended two doses”

“We plan to roll out the HPV vaccination in Sindh in the fall of 2024. We have to roll out the HPV vaccine. There is simply nothing else to do.”

– Dr Mary Nyangasi, head of the National Cancer Control Programme

– Provincial health official

Framework applicability implication While the vaccine trust framework likely applies in other contexts, more work with diverse interventions – including beyond vaccination – will be required to validate this

In Kenya, the vaccine trust framework should provide a useful tool for driving HPV vaccination uptake and guiding future planning

In Pakistan, the vaccine trust framework should provide a useful tool for guiding HPV vaccination roll-out planning

C O N T E X T

The following deck fulfils four major purposes:

Introducing the Vaccine Trust Framework and why it’s a relevant model

Discussing critical characteristics of each trust domain

Introducing hypothesis trust dimensions & the impact when trust is low in each

Summarizing HPV vaccine specific insights (Appendix A)

Trust as a key for building resilient demand Explaining and contextualizing the Vaccine Trust Framework as a tool for building efficient and resilient health systems & driving vaccine uptake

I N T R O D U C I N G

T H E

VA C C I N E

T R U S T

M O D E L

Trust consists of four interlinked domains: trust in the promise & the delivery at a system and vaccine level at a point in time, with each ranked from high to low T RU S T I N T H E

Promise

of the social contract Belief that the health system will uphold the social contract. This implied health contract includes an emotional certainty in the aligned priorities of the perceived systems surrounding health

T RU S T AT T H E

Health system level

T RU S T AT T H E

Vaccine level *

Does the health system have my and my community’s best interests at heart?

Do I believe that this vaccine has value for me and my community?

Does the health system generally work for me and my community?

Do I feel this vaccine is available & accessible to me and my community?

T RU S T I N T H E

Delivery

of the social contract Belief that healthcare is accessible, safe and effective. This trust is generally linked with past community experiences, and is often grounded in trust in community-level providers * COVID-19 or HPV vaccination

I N T R O D U C I N G

T H E

VA C C I N E

T R U S T

M O D E L

The research illustrated how the framework provides an understanding of how trust is impacted by vaccines over time – with COVID-19 mandates as a key case study When COVID-19 vaccines were introduced within lowtrust health systems, their visible prioritization was met with some confusion and suspicion

In this context, mandates compounded this unease – greatly damaging trust in the promise of the COVID-19 vaccine specifically…

During 2021 research, vulnerable populations1 across the countries studied voiced confusion as to why COVID was prioritized over more deadly and familiar diseases, e.g. malaria or cholera.

Peoples’ concerns were amplified when COVID-19 vaccines were then mandated – while their concerns about vaccine utility, safety, and even access remained unaddressed.

COVID-19 vaccines entered already lowtrust contexts Defined here according to the NCCDH definition

And mandates resulted in very low vaccine trust

…and over time, our data indicates, harming trust in vaccines in general During the 2023 HPV vaccination research, COVID-19 mandates were mentioned frequently as a reason for generalized suspicion of vaccines – indicating lasting trust damage.

“They shouldn’t have made it mandatory and forced us to take the vaccine. There must be a reason why [some] people…don’t have their children vaccinated.”– Ghazala (50, PK)

Which impacted overall health system trust over time

Creating even lower trust levels for future vaccines

This is a key component of the trust model within lowtrust contexts:

Every vaccine has a trust impact – positive or negative – which eventually impacts trust in the overall health system

I N T R O D U C I N G

T H E

VA C C I N E

T R U S T

M O D E L

Trust in the Promise in particular plays a pivotal role in establishing robust, resilient trust – that can endure over time, through changes, and despite individual bad experiences… Trust in the promise has a cushioning effect when suboptimal health services are encountered High trust in the promise of the heath system – or a given vaccine – provides more tolerance for healthseeking experiences which do not live up to people’s expectations. In other words, communities with high trust in the promise can absorb more ‘bad experiences’ before trust is significantly damaged – and starts to impact behavior at a systemic level.

But building trust in the promise is not as simple as investing in supply & access

Developing a trustworthy promise is generally not an area of focus

A robust and trustworthy process is of course critical for maintaining health service demand. But given that the promise of a given intervention is deeply linked with social context, access and supply-side improvements do not always translate into increased trust in the promise, where greater sensitivity to how a vaccine is perceived is required.

Within both contexts studied (the COVID-19 vaccination campaign in 2021 and the HPV vaccination campaign in Kenya today), investments in building trust in the promise were limited to factsfocused communication campaigns – and not focused on the deeper social benefits of accessing either vaccine.

I N T R O D U C I N G

T H E

VA C C I N E

T R U S T

M O D E L

…making trust – particularly trust in the promise – critical for driving health system efficiency, and ultimately system resilience

[Pictured] Kiwapa mobile children’s health clinic (KE) relies on trust-based community relationships to drive demand

“More research into public trust in health care systems could contribute to improving efficiency while protecting the health of the public” - Journal of Health Services Research & Policy 1

Trust is an important driver of health system efficiency…

…as well as system resilience over time and changing circumstance

While there are several ways to drive vaccine uptake (e.g., force, incentives, intensive campaigns), each of these introduces an additional cost burden when compared with trust. Trust therefore also plays a key role when it comes to system efficiency.

Trust is also a critical component in health service demand. Ensuring that trust is robust and able to withstand change is therefore important for ensuring the resilience of demand itself – highlighting the importance of trust in the promise in particular.

1: Gille F, Smith S, Mays N. Why public trust in health care systems matters and deserves greater research attention. Journal of Health Services Research & Policy. 2015;20(1):62-64 (link )

Employing a systematic and thoughtful approach to trust assessment and trust-building within health contexts is therefore critical

I N T R O D U C I N G

T H E

VA C C I N E

T R U S T

M O D E L

The Vaccine Trust Framework provides a way of conceptualizing trust which allows for programmatic decision-making to takes into account longer-term trust impacts

1. Identify trust gaps The trust framework should provide a ‘scanning’ function to assess a health system and vaccine uptake for trust gaps, which can then be further investigated, building up to a diagnosis of root causes

Example: Arab Barometer provides insights into various key dynamics shaping Arab societies, including political attitudes, social values, and perceptions of democracy and governance. The barometer collects data through face-to-face survey. It is the largest repository of publicly available data on the views of people in the MENA region.

2. Inform trust-building interventions The framework and additional ‘trust diagnostic’ investigations will provide core guidance for the development of trust-building interventions – and inform ‘trust risk’ assessments

Example: The Decision Support System Agrotechnolo gy Transfer (DSSAT) supports people in the agricultural field to evaluate farming methods via crop simulation models and allows users to assess what if questions through virtual simulations rather than real-life experiments. The system has been used widely in 180+ countries since the 1980s.

3. Monitor trust-building success Over time, the framework can be used to track trust levels – capturing the impact of health policy decisions in general, and trust-building interventions specifically Example: The Global Gender Gap report and index, carried out by the World Economic Forum, monitors and benchmarks gender parity across four key dimensions (Economic participation and opportunity, educational attainment, health and survival, and political empowerment) since 2006 across 146 countries.

Building a tool capable of delivering on level 1 is the goal of the framework for now – but eventually, the trust framework should be able to fulfill all three interlinked roles 14

I N T R O D U C I N G

T H E

VA C C I N E

T R U S T

M O D E L

To develop a useful tool, each quadrant must be measurable and their impact on each other understood – this has required developing hypothesis ‘trust dimensions’ TRUST IN THE PROMISE…

… OF THE HEALTH SYSTEM

AUTONOMY PRIORITIES ALIGNMEMT ✔ ︎✔ ︎✔ ︎

… OF THE VACCINE

BENEFIT R E L E VA N C E

C A PAB I L I T Y

TRUST IN THE DELIVERY…

FA I R N E S S

CONFIDENTIALITY C O M PAS S I O N

✔ ︎

COMPETENCE ACCESS

ADEQUACY OF INFO D E L I V E RY S E T T I N G

We are currently in the process of fielding a survey exploring the hypothesis trust dimensions, which will allow us to refine and streamline the dimensions of the trust framework

AGENCY SAFETY

AFFORDABILITY 15

I N T R O D U C I N G

T H E

VA C C I N E

T R U S T

M O D E L

The next 4 chapters explain these hypothesis dimensions, as well as providing an overview of the core characteristics of each trust quadrant and key gender implications The following slides unfold findings from the qualitative research – particularly the more recent HPV work – and how they led to each hypothesis dimension. This data is also used to develop a deeper explanation about how each trust quadrant should be characterized & understood.

Areas unfolded for each trust quadrant

Quadrant-level trust characteristics: how trust in this quadrant should be understood and why it’s important

A gender lens: how trust manifests particularly for women and the impact of low trust on women’s perceptions & behaviour

Hypothesis dimensions & associated qualitative insights: hypothesis dimensions that make up trust in this quadrant 16

Health System Promise

H E A LT H

S Y S T E M

P R O M I S E :

Q U A D R A N T

C H A R A C T E R I S T I C S

The health system promise is a manifestation of the social contract that formally and informally commits people and state to a mutual set of obligations and expectations – and the degree to which individuals and groups of people feel included in it Across countries and social groups, healthcare is a primary area of interaction with a broader set of governmental and social services – and so carries a weighty set of expectations. Given the intimate and vital role of the health system promise, this quadrant captures aspects of trust that reflect expectations of the social contract, and thus not entirely reducible to accumulated process experiences over time.

“The promises and expectations surrounding universal health coverage reforms shaped the claims people made to accessing care.”

For most in the populations studied, perceived reality breaches many of these promises, leading to low trust in this quadrant.

“

Health is a duty that the government has to fulfill for its people, yet health is the most neglected prospect in our area that causes dayto-day life problems

– Muinde & Prince (2022) on UHC in Kenya

A new universalism? Universal health coverage and debates about rights, solidarity and inequality in Kenya. Muinde & Prince. Social Science & Medicine. 2022

– FGD mothers (Lyari, PK)

H E A LT H

S Y S T E M

P R O M I S E :

Q U A D R A N T

C H A R A C T E R I S T I C S

Ensuring a strong health system promise is particularly important when it comes to women’s trust, as they are more likely to face practical barriers to health access – and so feel excluded While health decision-making is often shared within family units…

…women carry the burden of driving & facilitating most practical health access

75% of women in Kenya had

contact with a small public clinic in 2021/2022 – 15pp more than men in the same period1. In Pakistan, women are responsible for

“It's mostly us the mothers [who are responsible for health] because we are the ones who spend a lot of time with the kids. If a child is sick, I am the one who will notice first and then either handle it on my own if it's not that serious or inform my husband if it's serious.” – FGD Mothers, Collette (Nairobi, KE)

91% the unpaid carework in the home including keeping the children healthy2

Ensuring women’s trust in the health system promise represents an outsized opportunity to develop resilient trust in those most likely to take health action 1. 2.

AfroBarometer. 2022. “In the past 12 months, have you had contact with a public clinic or hospital?” . n=2400 The Unpaid Care Work and the Labor Market. An analysis of time use data based on the latest World Compilation of Time-use Surveys. The International Labour Organization. 2019

H E A LT H

S Y S T E M

P R O M I S E :

Q U A D R A N T

C H A R A C T E R I S T I C S

Dimensions summary: within each of the four hypothesis dimensions, many currently experience a system which does not live up to their expectations… HYPOTHESIS TRUST DIMENSIONS

Autonomy The HS recognizes people’s autonomy in making decisions about their own health

Priorities alignment The HS prioritizes positive health outcomes

✔ ✔ ︎ ︎✔ ︎

Capability The HS is able to deliver on people’s expectations to the treatment of issues that fall within the purview of the system

Fairness The HS provides services in a nondiscriminatory manner

RESEARCH FINDINGS SUMMARIZED

Perception: that the institutional part of the system breaches people’s autonomy by pressuring them into accepting health interventions without enabling them to make informed and free choices for themselves and their family – raising questions about the intentions of system actors.

Perception: that the health system’s priorities are not aligned with people’s priorities for their own, their family’s, and their community’s health, which is reinforced when interventions are seen to target lower priority areas – indicating a lack of understanding of what matters most to people.

Perception: that the health system is insufficiently equipped to respond to diseases such as cancer and diabetes that are emblematic of a system’s capability – giving rise to a sense that people are on their own

Perception: that certain groups are being treated unfairly by the institutional part of the system based on, e.g., ethnicity or SES, and giving rise to a sense that the system is less for them than for others 20

H E A LT H

S Y S T E M

P R O M I S E :

Q U A D R A N T

C H A R A C T E R I S T I C S

…leading to a feeling of loss of belonging to the broader social contract The institutional components of the health system are perceived to not be upholding the social contract when people feel a sense of exclusion, expectations breached and are having the perception that the system has misaligned – if not outright malevolent – intentions. This gives rise to a sense of alienation and that the system is ‘not there for you,’ which generally makes people less likely to take up vaccines and increases the trust stakes of every interaction – compared to a high-trust context, where there’s greater tolerance for sporadic fallouts in the service experience.

DIMENSIONS AUTONOMY

PRIORITIES ALIGNMENT

CAPABILITY

✔︎ ✔︎ ✔︎

FAIRNESS

HOW IT IS EXPERIENCED

“I feel that the county government has failed my people. We are often left out of important government initiatives. My areas has many challenges such as drought, lack of water, electricity, and health facilities are quite far”

– Katana (51, KE)

A U T O N O M Y

In the vulnerable and marginalized groups studied, many access the HS primarily through campaigns – reducing their sense of autonomy and introducing space for trustcorroding suspicion For many in the groups we studied, healthcare access is limited, and contact with the health system is primarily through campaigns

In the absence of a deeper, more user-driven relationship with the healthcare system, these campaigns can feel like a lack of autonomy

E.g. Min B (43, KE) is a financially-precarious single mother. Though she acknowledges the importance of accessing health services – even for preventative care – she admits that financial constraints have prevented her and her children from visiting hospitals and clinics for the past 8 years. She did, however, encounter the COVID-19 vaccination campaign, which she felt forced to engage in – raising suspicions.

In this context, suspicion of the governmental and international bodies behind health campaigns has space to grow – eroding in the autonomy dimension over time These suspicions were particularly concentrated around: • National governments and ministries • International governments and actors (e.g. western nations) • NGOs & INGOs

“When [the COVID-19 vaccines] were forced like that, I thought the government did not have good intentions toward the citizens.” 22

P R I O R I T Y

A L I G N M E N T

Vulnerable groups experience need in many areas – and their trust in the health system promise is eroded when they perceive their fundamental health needs to be unmet In both countries, we saw how people were juggling competing priorities along with the uncertainty they are facing

When vaccines are given for free, while fundamental challenges are left unaddressed, it raises suspicion…

E X P E C TAT I O N S

REALITY

“People are so deprived that they cannot even manage their necessities (…) it’s all about wrong priorities and lack of resources, which is the fault of poor economic choices by the government”

– Tanveer (53, PK)

… as people question why the system invests in a perceived minor issue but fails to solve perceived bigger challenges

“You even see on TV the way children are malnourished, so I wonder when the doctor comes with vaccines and tells you to eat well before taking medication; are you killing this person or helping them?”

“We do not need more vaccines at this point. More vaccines mean more expenses. We need to focus on the root cause which is that people are consuming sub-standard food and water.”

– Susan (40s, KE)

– FGD Fathers (Township, PK)

This misalignment between expectations and reality corrodes trust over time 23

C A PA B I L I T Y

✔︎ ✔︎ ✔︎

Key to trust in this quadrant is a feeling that the HS can actually deliver on its promises – but for many, experiences with health system dysfunction currently undermine this

People expect that the health system will generally be able to make them healthier – and not cause more harm

But these expectations are broken when they encounter a lack of equipment or personnel…

E X P E C TAT I O N S

REALITY

“... all we want is that the government does something about it so that poor people like us don’t have to pull out all our savings just for health to get treated at a private hospital” – FGD Mothers (Lyari, PK)

…and experience health issues which they perceive the health system appears entirely unable to deal with

“One of the worst (referral) hospitals we have in this county. Recently, my brother was brought to the hospital, and there were no resources, no medicine, no equipment – only healthcare workers.”

“Cancer is a painful disease! It eats you up slowly. Then, it will eat your resources and leave your family penniless. I had a friend who had mouth cancer – his family spent so much money on treatment, and yet in the end, he died.”

– Sheikh Abdelhamid (30s, KE)

– Jack & Naomi (53 & 42, KE)

FA I R N E S S

For the groups studied, navigating and accessing the HS requires confrontation with multiple types of unfairness – which also erode trust in the promise over time The vulnerable groups studied are very aware that their experience of the health system is not the same as others’ in society in various ways… E.g. a group of financiallyprecarious mothers in Lyari stressed the importance of a government that provides accessible health services for all, and agonize the fact that they are not able to afford private care. When they tried to access public hospitals they encountered a system based on clientelism, and having to wait in long lines because the system did not work in their favour.

…They experience wealthier people being able to pay for private care, while they have to wait in lines to access public health

“Nobody pays attention to the people here. Hospitals work on references as the rich can get early check-ups, but the poor get nothing out of it as there is one general hospital and only if you have someone working there, then you can get yourself checked – otherwise you would keep on waiting in lines”

As perceived unfairness compounds – and vulnerable groups are forced to rely on family & community to afford and navigate care – trust healthy system promise becomes more and more fragile. 25

H E A LT H

S Y S T E M

P R O M I S E

Summary: Building trust in the health system promise represents a powerful tool for combatting alienation and driving societal belonging

As a primary point of interaction with the broader social contract, the health system is well-positioned to combat social isolation and marginalization. Potential routes to trust-building: • Ensuring that health interventions are sensitive to peoples’ contexts – including the priorities they have beyond health where possible • Respecting autonomy and enabling free choice • Establishing a pattern of fairness (and addressing concerns around fairness if they arise) • Ensuing the system feels capable of delivering positive health outcomes

Delivering on these dimensions brings the potential to improve not just trust in the HS specifically, but also engagement in the broader social contract. AUTONOMY

PRIORITIES ALIGNMENT

CAPABILITY

FAIRNESS

✔︎ ✔︎ ✔︎

Healthcare Delivery 27

H E A LT H C A R E

D E L I V E R Y:

Q U A D R A N T

C H A R A C T E R I S T I C S

While the ‘health system’ is a broad and abstract concept, on-the-ground users understand it concretely as a continuum from personal to institutional

Example health touchpoints for the groups studied

The institutional level faceless & structural International health orgs (e.g. WHO) National health authorities (e.g. MoH) Referral hospitals Local hospitals Health posts / dispensaries Private doctors Community health mobilizers* Healers

The personal level face-to-face & linked to individuals

How people define the institutional & personal levels will depend on factors such as marginalization & socioeconomic status. But there are similarities in how the levels are experienced. For the low-income groups in Kenya & Pakistan included in this work, embedded community touchpoints make up the personal level. The institutional level is distant for the groups studied – leading to differing trust levels in different parts of the health system, which are critical to capture in measurement.

*We refer to community health mobilizers as category of health providers that includes lady health workers (PK), community health workers (KE) and community health volunteers (KE).

“The Ministry of Health campaigns towards underfive medical intervention are well-funded and organized” – Amina, Health Administrator, KE

“Since I’m really the only person they can ask, if I don’t have answers, then they feel the system is not there for them” – Vanessa, Nurse, KE

H E A LT H C A R E

D E L I V E R Y:

Q U A D R A N T

C H A R A C T E R I S T I C S

Trust in healthcare delivery is generally built up over repeat interaction – and for the group studied, most interaction with the health system is at the personal level The groups studied are highly reliant on the ‘personal’ level of the health system…

…but they do not interact extensively with institutional providers

e.g. developing relationships with their local community health workers

They do not build up much familiarity – or build much trust –in these levels of the health system

Community health mobilizers (CHMs)

Local hospital

Other providers at the personal level:

Other providers at the institutional level:

•

Traditional birth attendant

•

Pharmacists

•

Health dispensary

•

Hakeems

•

Quack doctors

•

Referral hospital

•

Healers

•

…

•

…

Private doctors

Therefore, for this group, trust in healthcare delivery tends to be more tightly linked with individual providers – and different at different levels throughout the health system continuum 29

H E A LT H C A R E

D E L I V E R Y:

Q U A D R A N T

C H A R A C T E R I S T I C S

Reliance on the ‘personal’ level of health system continuum poses particular challenges for women, who must navigate socially complex areas of health At the ‘personal’ level, providers tend to be deeply embedded in their communities

“A community health volunteer is like a midwife between the community and the [health] facility” – Angel, CHV (KE)

For women – who are more likely to lack the resources or decision-making power required to access more institutional health providers – personal providers are often the only option E.g. Angel (a CHV in Kitui, KE) describes the satisfaction she gets from building strong relationships with the women and girls in her community, many of whom have little other contact with health services.

But this reliance on the ‘personal level’ can also impose barriers when women seek advice or discuss highly sensitive, sociallyfraught health matters such as SRH. At a FGD in Lahore, PK the women we met talked openly about their struggles with PPD and miscarriages – only to be judged afterwards by the accompanied LHW that accused a woman of having abortion: “How come a woman who had delivered multiple babies happens to have a sudden ‘miscarriage’”

This is particularly true for adolescents (who are likely to experience judgemental reactions when accessing SRH supplies), and makes women and girls’ trust in healthcare delivery particularly vulnerable

H E A LT H C A R E

D E L I V E R Y:

Q U A D R A N T

C H A R A C T E R I S T I C S

Dimensions summary: Across providers, people tend to rely on 5 major trust dimensions – which cannot currently be found at any one point in the system… HYPOTHESIS TRUST DIMENSIONS

RESEARCH FINDINGS SUMMARIZED

Confidentiality

Institutional HC providers are perceived by many as less accountable when it comes to confidentiality – although more personal providers also risk feeling too familiar. This leaves many with little trust in this dimension, across health system levels.

Compassion

People recognize the importance of the relationships they form with providers on the personal end of the HS continuum – and feel let down by institutional providers, with whom many struggle to find compassionate interaction.

Medical and personal information will be kept private and undisclosed outside the provider/patient relationshipµ

Providers engage patients with respect and recognition and demonstrate a commitment to their betterment

✔ ︎

Competency

Healthcare providers have the knowledge and skills required to attend to people’s issues

Affordability

Getting healthcare when needed without having to forego/delay treatment due to cost

Access

Ease of accessing healthcare

Trust in competence differs greatly throughout the health system, with institutional providers generally enjoying more trust in this dimension than personal providers. Institutional providers are perceived as prohibitively expensive for many families – even when their services are accessed through public channels. Personal-level providers are perceived as much more affordable. Institutional providers are also experienced as inaccessible – navigating them is a maze with long travel and wait time. Personal providers generally enjoy higher trust in this dimension, as they are expected to maintain close ties with communities. 31

H E A LT H C A R E

D E L I V E R Y:

Q U A D R A N T

C H A R A C T E R I S T I C S

… leading to a situation where trust in the overall system – which for many is only experienced through limited providers, who can deliver on few trust dimensions – is highly vulnerable

People in the communities studied do not experience all five trust dimensions at any level in the health system. In general, providers at the institutional level feel inaccessible and unaffordable, creating an over-reliance on providers on the personal level (e.g. CHMs). Though personal-level providers do generally deliver on some trust components (e.g. compassion), they are not able to deliver on all of them (e.g. competence, which is often linked with training they do not have access to). This introduces vulnerability not only when it comes to health access – but also trust in healthcare delivery.

DIMENSIONS

✔︎ CONFIDENTIALITY

COMPASSION

COMPETENCE

HOW IT IS EXPERIENCED

“Medical care is difficult to get –

there are few doctors or hospitals here. So, you have to travel and pay a lot and not everyone can afford that... But the LHW comes here sometimes and I can talk to her, she helps us with most things.” – FGD mothers (Lyari, PK)

ACCESS

AFFORDABILITY

C AO U N T O F INDOEMNYT I A L I T Y

Institutional HC providers are perceived by many as less accountable when it comes to confidentiality – although more personal providers also risk feeling too familiar For many in the groups studied, the more institutional levels of the health system are characterized by indiscrete access and perceived indifference to people’s privacy “When you go to a public place for HIV testing it’s a feeling of fear… They might reveal it… I have distrust in how the clinic keep your information. They might have all the tech, but they might reveal your secrets.”

The more personal levels of the system are generally seen as more accountable when it comes to privacy, given they are embedded in communities. But this proximity can make it difficult in some cases to broach more sensitive topics – and tolerance for confidentiality breaches is very low. “You need to be confidential. You need to assure the women that you will not tell this or that person what you heard. You need to stay true to this too. They will find out if you gossip and will not trust you.” – Angel, CHV (KE)

This can leave people with what feels like few good options when it comes to confidential health services – damaging this trust dimension

– Perry, FGD young men (Kisumu, KE) 33

C AO U M T O PN A O S S M IYO N

People recognize the importance of the relationships they form with providers on the personal end of the HS continuum – and feel let down by institutional providers “The most critical aspect of a good doctor is their ability to empathize with their patients and listen attentively… Patients who are already suffering and are in pain find it difficult to trust doctors who lack empathy.”

INSTITUTIONAL LEVEL

PERSONAL LEVEL

People often feel judged and stigmatized eroding any sense of compassion and leads people to forego SRH service

CHMs and similar providers are perceived to take the time to build compassionate relationships with the people they serve

“I once went for cervical screening …The nurse openly accused me of being a lesbian. She even rudely told me to go and get test for STI or HIV…I felt really bad and vowed never to visit the hospital again.”

“I talk to the CHV about maternal care and my baby. But we also talk about other things – about my life and how I’m doing. She has come by almost every week since I had my baby, so she really cares.”

– Lucy, FGD adolescents (Kisumu, KE)

– Salma, (36, KE)

– Nabila (34, PK) People express deep appreciation for healthcare providers who respect and recognize them as individuals and demonstrate genuine commitment to their betterment

C AO U M T O PN EO T E M NY C E

✔ ︎

While community providers are trusted with common, non-urgent health concerns, providers at the institutional level are preferred for more critical and urgent illness

INSTITUTIONAL LEVEL

PERSONAL LEVEL

Perceived formal training underpins people’s trust in institutional providers’ competence – particularly in in critical and specialized health matters. They are often perceived as more competent than community-level providers.

Community-based providers competence is often perceived to be restricted to health advice – as opposed to more active treatment. This limits their perceived competence overall.

Perceived areas of competence TREAT CRITICAL DISEASES

PROVIDE GENERAL HEALTH ADVICE

People perceive – and expect – institutional providers to be able to tend to critical diseases such as cancer and chronic diseases such as diabetes based on their specialized education and experience from practicing medicine.

CHMs are perceived to be knowledgeable on general health, e.g., diet, minor ailments, and especially women’s health issues such as irregular menstruation. While few associate CHMs’ competence to formal education, most reference their exposure to the issues as their main source of knowledge.

PROVIDE EMERGENCY CARE

TREAT MINOR, EVERYDAY HEALTH ISSUES

“I also trust Kenyatta hospital… they have good services, and the best doctors with good education… When my boy had the bike incident last fall, we were received well. Every process is good, they give the best services” – Amy (33, KE)

“The LHW can help with me with small things. Painkillers and vitamins. She helps with my children and private things… But she cannot help me if I fell very ill or I had an accident – she is not a real doctor.” – Sara (46, PK)

H E A LT H C A R E

D E L I V E R Y

As a result, health seekers in low-trust contexts experience a system in which no level satisfies all trust dimensions when it comes to trust in delivery – damaging trust in this quadrant overall

QUALITATIVE TRUST ASSEMENT: CONFIDENTIALITY

Institutional level

Personal level

COMPASSAION

Institutional level

Personal level

COMPETENCE

✔ ︎

Institutional level

Both types of providers are valuable to people and have comparative advantages that make them trusted to attend to different health needs and situations. Ideally, they would supplement each other, covering different health needs – but always fulfilling all trust dimensions

In an ideal health system, health-seekers would be able to consult the providers they trusted the most for the specific health issue – with all trust dimensions present at each level

E.g. Receiving cancer treatment at the local referral hospital

E.g. Seeking health advice on iron deficiency from the CHM

Personal level

H E A LT H C A R E

D E L I V E R Y

Despite trust in their competence, many people have the impression that providers on the institutional level are unaffordable and out of reach even for critical health issues Institutional providers are perceived to be prohibitively expensive for many families ACCESS

AFFORDABILITY

“We went to the general hospital with my husband when he had a finger infection. We stayed for 3 hours, then we were told to go back home because there was no one to attend to us. Usually, it takes 8 hours to be seen.”

“Health care here in our county is very expensive. It is one of the easiest ways to die. Our referral hospital has very poor services. You basically have pay for everything.” – Ngete (68, KE)

– Farhana (25, KE)

78% of people in Pakistan rely on private healthcare which, for the 1

majority, is highly expensive. Without affordable options and sufficient health insurance, it’s estimated that 350.000 households fall into poverty each year due to the high cost of healthcare.2 1. 2. 3.

Country Policy and Information Note Pakistan: Medical and healthcare provisions. The UK Home Office. 2020 Making quality healthcare accessible and affordable. The Aga Khan University. 2020 AfroBarometer. 2022. n=2400 4) AfroBarometer. 2022. n=2400 5) AfroBarometer. 2022. n=2400

Institutional providers are experienced as inaccessible – navigating them is a maze with long travel and wait time

32% of people in Kenya ”often” encounter long wait times at public clinics and hospitals, and 38% find it difficult to obtain healthcare more generally3.

H E A LT H C A R E

D E L I V E R Y

Instead, people in the group studied experience a limited health system where relience is concentrated on a single provider group – the community-level health mobilizers The institutional level

People experience a limited health system where institutional providers are out of reach… …and they must rely solely on CHMs for the vast majority of health matters “The lady health worker is a very trusted member for us in every matter including health” – Anmol, FGD Mothers (Lahore, PK)

The personal level

As a result, the CHMs are made responsible for various health matters – often far beyond their training FAMILY PLANNING Rukia (KE) asked her CHV for family planning after giving birth POLIO VACCINE Humaira (PK) asked her LHW about whether or not to vaccinate her children against polio TYPHOID TREATMENT With his wife critically ill with typhoid, Tanveer (PK) consulted the LHW GUIDANCE & REFERRALS Unable to make sense of the hospital, Maryam (PK) asked the LHW to guide her through the system

FERTILITY As a newly-wed, Amina (PK) struggled to become pregnant and sought advice from the LHW DIET AND SUPPLEMENTS CHV Kipe (KE) guided women in her community on diet in the lack of nutritious food OTHERS… The list of issues CHMs are asked to attend to is substantial and includes diarrhea, fever and childcare

H E A LT H C A R E

D E L I V E R Y

The over-reliance on CHMs to deliver too many health services sets them up for failure to live up to all expectations – jeopardizing the trust they currently enjoy As people’s trust concentrates on CHMs, they are expected to deliver on all trust dimensions

CONFIDENTIALITY

Unequipped to lift the responsibility people place on them…

… CHMs are at imminent risk of eroding the trust they enjoy

CHMs as a group find themselves unequipped to lift the responsibility people place on them and strained by the large workload. This becomes evident when CHMs resort to personal beliefs or unsubstantiated treatment in the attempt to attend to people’s issues, or neglect certain groups in order to save time.

When CHMs are unable to deliver on people’s expectations, e.g., by providing wrong information, inefficient treatment or don’t deliver any service at all, people feel let down and vulnerable without any other access to healthcare services. As a result, they start questioning the CHMs general authority and trustworthiness – and so the trustworthiness of the entire healthcare delivery.

COMPASSION

AFFORDABILITY

✔︎ COMPETENCE

ACCESS

“

It’s very difficult for us to talk much about the HPV vaccine since we do not want to give the wrong information that might make us lose trust with the community.

– Kabibi, CHV (KE) 39

H E A LT H C A R E

D E L I V E R Y

Summary: Building trust in this quadrant will require considering trust dimensions across providers – creating more robust trust, and more trust-based care journeys

In the contexts studied, people perceive the health system as a continuum between institutional and personal providers. Ensuring that this continuum is in fact experienced as a system – with trust embedded throughout – is critical for creating trust-based demand for health services. This requires: • Ensuring that providers beyond the personal level prioritize currently under-delivered upon trust dimensions • Equipping personal level providers (e.g. CHMs) with the tools to deliver on all trust dimensions • Of course, addressing access issues (e.g. over-reliance on community providers) would allow for more diversified – and therefore robust – trust across the system

Delivering on these dimensions throughout the health system will help to create a more unified care experience – and more robust trust healthcare delivery overall.

✔︎ CONFIDENTIALITY

COMPASSION

COMPETENCE

ACCESS

AFFORDABILITY

Vaccine promise

VA C C I N E

P R O M I S E :

Q U A D R A N T

C H A R A C T E R I S T I C S

Health-seekers perceive a promise in every vaccine they encounter – with the perceived promise always a combination of intended messaging and interpretation

Messaging about intended Promise

INTERPRETIVE FILTER

While health messaging of course plays a critical role in how vaccines are perceived, equally critical is the sociocultural lens through which people interpret health messaging

The Promise people perceive

This interpretive filter means that people always perceive a promise – regardless of how little active messaging surrounds a health campaign

The HPV vaccine is a clear example of this – with highly divergent interpretations of the vaccine’s promise linked to differing social positions, worldviews, and other beliefs E.g. though Kabibi and Zainabu belong to the same extended family (they’re sisters-in-law who live in the same homestead), they interpret the promise of the HPV vaccine differently partly due to differing religious backgrounds.

“I think that the vaccine is good when you understand its benefits… My daughter is now 16 years and past the required age, thefore I regret it’s quite late for her, but I would like her to get the vaccine.” – Kabibi (33, KE)

Sociocultural context creates an interpretive filter which impacts meaning percevied in messaging about vaccines. Through this process, the Promise is constructed, transformed, and interwoven with other inputs.

“Our religion demands that girls shouldn’t have sex before marriage, and I am confident that my daughters will remain pure till they get married. I don’t think I will allow them to get the vaccine.” – Zainabu (30s, KE)

VA C C I N E

P R O M I S E :

Q U A D R A N T

C H A R A C T E R I S T I C S

As communities interpret vaccine’s promise, they may relate to existing societal narratives – which can lead to hesitancy if left unaddressed

SRH

New vaccines run the risk of tapping into existing narratives of vaccine hesitancy. These interpretations are often associated with low overall system trust – i.e. a perception that the broader system does not have good intentions. “I trust childhood vaccines because they prevent dangerous diseases, and they have been there for a long time. However, I have an issue with all these new vaccines. I think there must be a hidden motive with these vaccines.” – Terry (KE)

E.g. the HPV vaccine taps into a variety of existing narratives around the dangers of vaccines (e.g. as a political tool for population control)…

“It became political, even at a national level, that the vaccine was being given to stop the population in the country in the next 10 years.”

…leading to confusion ultimately decreasing trust in the promise of the vaccine as a safe and effective preventative measure

“My mother said that the HPV vaccine may make me infertile in the future, but at school the teacher said that it isn’t true that the vaccine can cause infertility. Now I don’t know who to believe.”

– Angel, CHV (KE)

– Edna, FGD adolescents Kilifi (13, KE) 43

VA C C I N E

P R O M I S E :

Q U A D R A N T

C H A R A C T E R I S T I C S

Key to promise interpretation is the target of a given vaccine – with vaccines aimed at women coming under particular scrutiny The target population of a given vaccine naturally has a large impact on the interpretive filter people apply when trying to determine its promise Many of the ideas surrounding target populations within society become integral to how vaccines targeting them are perceived – e.g. vaccines targeting children tap into broader ideas around the roles of both parents and their offspring.

Vaccines targeting women or girls are therefore inextricably interwoven with societal perceptions of their roles

“Boys and girls are treated differently in this community” – Ayesha (27, PK)

This is especially true for adolescent girls, who represent a focal point for the preservation and/or re-negotiation of women’s roles in society – and carry heavy familial and community expectations. PAKISTAN

KENYA

Periods mark a transition into adulthood. Because puberty is happening concerningly earlier, parents are experiencing additional anxieties, and struggle to explain this phenomenon. They attribute it to vague technological and dietary changes and engage in rituals to “regain control” over periods.

In Kenya, adolescence is a moment caregivers meet with fears around the future of their daughters. Many felt as though investments in their girls’ future could be derailed by a variety of external factors. In preparation for this moment, some discuss and provide guidance on key physical changes.

“Girls as young as 8 to 10 years old are entering adolescence and experiencing the changes that come with puberty. Society and individuals start discussing girls' future marriages and responsibilities… The societal pressure can be overwhelming.” – Sara (46, PK)

“As a mother, there are certain things that I discuss with my daughters… I took the initiative to talk to my daughter once she developed breasts about menstruation before she experienced it.” – Judy (47, KE)

VA C C I N E

P R O M I S E :

Q U A D R A N T

C H A R A C T E R I S T I C S

Information around the HPV vaccine touches upon various themes which are particularly contentious in relation to it’s target population of primarily adolescent girls

If it had been for adults

Childhood vaccines are a strong default for most and don’t require a lot of reflection about the diseases they protect against – the HPV vaccine could leverage this default for cancer protection

HPV vaccines that aren’t a default make people reflect on the connection between cancer in the future and their presently healthy children, which feeds into wider discourses and expectations

Cancer is generally linked to adulthood and older age, which could make a cancer protection promise be perceived as more relevant for adults

It would likely raise fewer gender-related concerns to give the vaccine at a younger age, where fertility is a less pressing concern

In contexts where HPV vaccines are given to girls only, it raises a lot of questions, particularly around fertility and related issues that are highly charged for this age group

While other vaccines, e.g., C19 have raised gender concerns, this theme would likely be less contentious if the HPV vaccine was for adults because of the relatively lower focus on gender and fertility.

Small children aren’t connected with sexual activity, which would firmly background the mode of HPV transmission

HPV vaccines allude to sexual activity, which parents may find problematic for sociocultural reasons at a moment when children’s future is at stake

Sexual activity and STIs are much less controversial for adults – though not entirely destigmatized

SRH

CANCER

It’s particularly sensitive for adolescents

GENDER

If it had been for children

VA C C I N E

P R O M I S E :

Q U A D R A N T

C H A R A C T E R I S T I C S

Dimensions summary: as people determine their trust in the promise, their assessment can be subdivided along two dimensions, which for HPV likely represent different trust levels HYPOTHESIS TRUST DIMENSIONS

RESEARCH FINDINGS SUMMARIZED

Benefit The vaccine has a benign intent and contributes to positive health outcomes

Relevance How much the outcomes of the vaccine relate to people themselves and to their lives

Key for trust in the benefit subdimension is people’s continued belief that the vaccine can deliver expected benefits. Failure to live up to expectations harms trust in this dimension and quadrant overall – and can lead to longer-term system trust impacts. HPV perception: many perceive a strong benefit in a vaccine aimed at preventing cancer. But there are also indications that for some, this promise quickly becomes ‘protection from all cancers’ – posing a risk to long-term trust when the vaccine inevitably fails to live up to these expectations

Benefit alone is insufficient – people also need to trust the personal relevance of a vaccine. There is a risk that as repeated irrelevant interventions are encountered, peoples’ trust in the promise of the system overall is damaged over time. HPV perception: while most grasp that the HPV vaccine against cervical cancer is beneficial, trust in the relevance dimension is often lower, particularly when parents perceive the vaccine’s promise to be closely linked with sexual activity. Also, parents of boys and boys themselves are currently entirely left out, impacting their trust. 46

VA C C I N E

P R O M I S E :

Q U A D R A N T

C H A R A C T E R I S T I C S

…leading to some uncertainty & aversion when it comes to the HPV vaccine in particular Like all other vaccines – and even more so because of the sensitive topics it evokes – the HPV vaccine’s Promise is constructed through people’s interpretation of it. This interpretation takes place within dense sociocultural contexts, and people ascribe meaning based on information they receive, what they hear from others, past experiences, norms in the community, etc. Even when the promise is carefully managed, there’s a risk of both negative interpretations instantiating well-known types of hesitancy, overly positive interpretations of what the vaccine can do, and simply perceived irrelevance – all of which can be detrimental to trust, create a sense of uncertainty and even aversion towards the vaccine, and contribute to discourses (and eventual long-term trust impacts) beyond the vaccination itself.

DIMENSIONS BENEFIT

RELEVANCE

HOW IT IS EXPERIENCED

“Some churches and religious traditions are against it and feel that it’s wrong. Some say it’s family planning, some fertility, and some that they’re injecting the disease itself to keep business going… People fear cancer – they really fear it. When it’s this dangerous, how can there be a vaccine? … As a CHV I’ve gone first and given it to my daughter.” – Amy, CHV (KE)

B E N E F I T

The ‘benefit’ trust dimension relies on the ability of a vaccine to deliver a perceived life advantage – and can be quickly undermined if the perceived benefit is not realized Naturally, health seekers assess the benefit of a given vaccine upon encountering it – but trust in this benefit is very quickly undermined if the vaccine does not deliver on this expected benefit. E.g. It had a negative impact on perceived benefit when people believed the vaccine protected them from C19, but they contracted the virus and experienced symptoms regardless: “I took the vaccine but still caught COVID twice, which made me question its effectiveness” – Umaima (PK)

In the case of HPV, a clear benefit is perceived when the vaccine is understood to prevent cancer – but there is a risk of ‘overinterpretation’, as the vaccine does not of course prevent all cancers. Cancer is a major – and seemingly rising – fear in both Kenya and Pakistan, not only because of the physical challenges and death sentence it’s associated with, but also because of the many ‘social deaths’ it involves, including the financial burden on the family, stigma, etc. Therefore, the cervical cancer protection message strongly appeals to many.

But many (e.g. Katundu (67, KE), quoted to the right) understand ‘cancer’ to mean all cancers – raising the risk of damaging benefit perception in the long term when cases emerge of HPV vaccinated individuals who get other types of cancer than cervical.

“My granddaughter came and told me their teacher had said that cancer has no cure, but she told them that there were nurses coming to vaccinate them to prevent cancer. I was very happy because it meant that if she got vaccinated, she would be safe” - Katundu (67, KE)

R E L E VA N C E

But benefit alone is not enough to drive trust in this quadrant – personal relevance is also key for developing trust in the promise of a vaccine In the case of the HPV vaccine, while many can see the benefit, relevance is less widely agreed-upon – particularly if the vaccine is linked with sexual behavior.

Given it is not available to them, the HPV vaccine is inevitably also perceived as irrelevant for boys and men, a decision many question given the ‘over interpretation’ of the vaccine’s cancerprevention benefit

“I or my daughters would not need HPV vaccine because we can never indulge in illicit sexual relations, so we wouldn’t take it”

“Why only girls and not boys?... Why are boys excluded? Cancer is cancer whether cervical or otherwise… Why only for females?”

– Umaima (28, PK)

– Father Daniel (40s, KE)

Over the long term, these perceptions of irrelevance are damaging not only to this trust dimension but begin to erode trust in the promise of the system more generally Continuous exposure to perceived irrelevant vaccines can have a negative spill-over on system trust because it raises questions about whether the system recognizes people and “is for them”. E.g. as boys and men encounter repeated vaccines aimed at women and girls, narratives begin to form around male neglect: “To get a chance as a boychild you need to know someone… It’s a feeling of being neglected. Everyone wants the same opportunity.” – Frank, FGD boys (KE) 49

VA C C I N E

P R O M I S E :

Q U A D R A N T

C H A R A C T E R I S T I C S

Summary: An active focus on building – and understanding community interpretations of – the promise of a vaccine is key to building trust in this quadrant

While a Promise can never be controlled entirely, acounting for promise interpretations and discursive links in vaccine positioning is key to building trust in this quadrant. Potential routes to trust-building in the case of HPV: • Optimizing messaging to account for both positive and negative interpretations within sociocultural contexts. This can be done both when planning vaccine introductions (PK) and after introduction (KE) to drive further uptake by increasing perceived Benefit and Relevance. • Being aware of managing negative interpretations related to gender and SRH, while leveraging the Benefit of cervical cancer protection • Offering the vaccine to boys holds a potential to change interpretations, build greater trust and drive uptake

A focus on building trust in the benefit & relevance of a given vaccine not only drives demand, but offers a critical route towards building trust in the promise of the health system more broadly over time BENEFIT

RELEVANCE

Vaccine Delivery 51

VA C C I N E

D E L I V E R Y:

Q U A D R A N T

C H A R A C T E R I S T I C S

Every vaccine a health-seeker meets is an opportunity to build trust in healthcare delivery more broadly – but only if the vaccine is adequately integrated Every encounter with a vaccine – e.g. every campaign – has the potential to impact system trust, particularly in contexts where trust in the promise of the health system is low See more detail on slides 11 & 12.

But interventions which are experienced outside of regular PHC (i.e. campaigns) often have less effect on trust – given that they are more likely to be perceived as separate from other health services Because they tend to be separated from people’s regular HC system, campaigns are typically weak for building trust and fostering healthseeking behaviors beyond the vaccine. They can, however, still have a negative impact on trust in the Institutional level of the health system promise (as C19 demonstrated).

This is particularly true if campaigns do not play a role in building up health-seeking habits, and knowledge...

…and means that for particularly vulnerable people – whose interaction with the HS is primarily through campaigns – opportunities for trustbuilding are limited

E.g. Andy, a vaccination nurse in Nairobi, is critical of how the HPV roll-out is not closely integrated with other health services – and notes that its unreliable cadence does nothing to build up health habits (and trust) amongst its target group. “The next campaign should come every 6 months. But the government might not do the next campaign, and then after 6 months girls are just told to go to the nearest hospital, which they don’t do”

VA C C I N E

D E L I V E R Y:

Q U A D R A N T

C H A R A C T E R I S T I C S

For those already largely excluded from the health system – for example, vulnerable women and girls – campaigns represent a particularly important missed opportunity Women already face specific access barriers when it comes to health – especially in gendersegregated societies. In many cases, scarcity of providers and services attuned to the needs and requirements of women indirectly hamper women’s access to healthcare. An over-reliance on campaigns removes an opportunity to not only build suitable health infrastructure, but also women’s health literacy, habits – and trust.

In the case of HPV, given that rollout in Kenya has so far been through schools, the campaign exacerbates girls’ intense reliance on teachers in matters of health… While teachers are often strong sources of support, students are likely to lose connection when they leave. Because of how closely linked HPV vaccination is to school and teachers – rather than the HCPs who administer the vaccines – it is a missed opportunity for exposing girls HS.

…and introduces a high risk that out-of-school girls are left behind…

… a gap currently being filled in an ad-hoc manner, e.g. by community mentors and CHMs

E.g. Alongside being a CHV, Miriam (above) is a DREAMS mentor, providing a safe space for low SEL girls and opportunities for those not in school. This means that she is a key touchpoint for girls in the community and can direct them to the HPV vaccine, but it’s limited what they she do with parents, which Miriam sees as a systematic gap.

“We refer the girls who are part of the program for HPV vaccination…They get it in school, but for those who don’t [attend] we talk about it and refer them… There are some we don’t reach, either because the parents are against it or because the girls are too difficult to reach” - Miriam (CHV, KE) 53

VA C C I N E

D E L I V E R Y:

Q U A D R A N T

C H A R A C T E R I S T I C S

HPV vaccination currently occupies a grey area between routine immunization and campaigns – relying heavily on intermediaries not closely linked with the health system ROUTINE IMMUNIZATION

GREY AREA

CAMPAIGNS

HPV vaccines

COVID-19

HPV vaccination is partly integrated in the established immunization system…

… but draws heavily on trust in teachers and schools…

… and predominantly operates on a campaign mode of delivery

Photo of ledger from clinic visit

Photo of school or teacher, e.g. from Melany or Samuel

Photo of flyer with cartoon drawing

“The teacher told us that the vaccine was meant to protect us against cancer and that we should get it. I opted to get the vaccine because I believed her.”

“When there’s a campaign, CHVs go to all the schools in the jurisdiction and tell the children to come for vaccination. There’s a day of info, then the children get consent from their parents, and then a nurse comes to school.”

Childhood vaccines

SIGNS OF INTEGRATION

• It is the same vaccinators as for routine immunization • HPV vaccines are also available in clinics • Ideally it happens routinely on a fixed schedule • Vaccinations are recorded in the typical ledgers • …

– Faida, FGD adolescent girls (Kilifi, KE)

– Andy, Nurse (KE)

Because of the reliance on schools, teachers, and other intermediaries – and not only the health system as such – it complicates the picture of who and what is trusted, also for adolescents and their parents, and introduces risks.

Currently, in Kenya, the HPV vaccination process is dependent on recurring campaigns that push information, sensitize the intermediaries involved, mobilize communities, and carry out the vaccinations. 54

VA C C I N E

D E L I V E R Y:

Q U A D R A N T

C H A R A C T E R I S T I C S

Dimensions summary: within each hypothesis dimension in this quadrant, the HPV vaccination campaign represents an area of sensitivity… HYPOTHESIS TRUST DIMENSIONS

Adequacy of information Completeness of the information provided about the vaccine

Delivery setting Appropriateness of the site(s) where the vaccines are delivered

Agency Adequacy of consent collection and respect of people’s own choice

Safety Risk of adverse events and level of uncertainty about side effects

RESEARCH FINDINGS SUMMARIZED

Health-seekers feel well-informed not only by larger-scale public campaigns – the nature of the messenger is also an important factor for building trust in this dimension

Many campaigns (e.g. HPV vaccination) borrow trust from intermediaries, who are embedded in other systems – and thereby has a potential to both erode and built it

Perceived personal agency is a critical trust dimension across vaccines – and is particularly important when caregivers make decisions for dependents

While perceived vaccine safety is always important, this dimension becomes even more salient when the vaccine touches socially critical areas – in particular, SRH

VA C C I N E

D E L I V E R Y:

Q U A D R A N T

C H A R A C T E R I S T I C S

… leading to a fragile trust within this quadrant when it comes to the HPV vaccination campaign Trust in vaccine delivery is at particular risk without a robust information chain. The campaign-like HPV vaccination process exhibits this issue by relying heavily on nonmedical intermediaries and adolescents as conduits, and by lacking channels for directto-parent information to build trust. Parents’ autonomy might be breached if their consent is not sought, and if information about the vaccine reaches them as decisionmakers at the end of the waterfall, there’s a high risk that it’s so diluted that they feel insufficiently equipped to make an informed decision and become reluctant.

DIMENSIONS

ADEQUACY OF INFO

DELIVERY SETTING

AGENCY

SAFETY

HOW IT IS EXPERIENCED

“When the vaccines were being brought to the school, we called the girls, talked to them, and gave them the note from the hospital, which their parents had to sign to give consent. The girls took the notes to their parents, who read them and either gave consent or not. They brought back feedback that it was family planning; that the vaccine would cause infertility: ‘My mother said I will not give birth if I am vaccinated.’ ” – Patience (Teacher, KE) 56

A D E Q U A C Y

O F

I N F O

Health-seekers feel well-informed not only by larger-scale public campaigns – the nature of the messenger is also an important factor for building trust in this dimension Large-scale health campaigns are of course important for providing adequate information – to healthseekers, but also the intermediaries who go on to inform them

“It’s important for us to be supported by larger campaigns, which includes messaging from TV, radio, and social media. It makes our work of communicating with the community much easier because they already know something and it’s not on us to explain everything.” – Doris, CHV (KE)

The nature of these intermediaries also plays a key role in how people perceive information, with different groups playing differentiated roles Because of their crucial role as trusted bridges between the health system and vulnerable communities, a lot hinges on the sensitization and activation of CHMs. But administrators – such as chiefs and elders – also have a role to play in advising communities on health matters, particularly when it comes to child or adolescent health. Though religious institutions aren’t systematically involved in driving uptake, they clearly are trusted in important matters of health and can have a significant impact.

In the case of HPV vaccination, the perceived lack of a largescale campaign has put more pressure on intermediaries to communicate information – reducing trust in this dimension

“The community understanding of HPV is low. It started abruptly in ‘19, then COVID came, and there was total silence. We didn’t give HPV attention like COVID. It’s only now the government has started to talk about HPV.” – Amina, acting health director (Isiolo, KE) 57

D E L I V E R Y

S E T T I N G

Like other campaigns, HPV vaccination borrows trust from intermediaries, who are embedded in other systems – and thereby has a potential to both erode and built it COMMUNITY-BASED HEALTH

CHMs & CHMs & administrators administrators

RELIGIOUS INSTITUTIONS

Religious leaders

CIVIL SOCIETY ORGS

SCHOOL SYSTEM

Youth mentors

Teachers

+/-

Trust

+/-

Trust

+/-

Trust

+/-

Trust

INTERMEDIARIES

The HPV vaccination process The current HPV vaccination process is highly dependent on intermediaries – especially teachers – by design and functions by borrowing their trust. Because these intermediaries are partly or fully embedded in other systems, trust implications from their involvement can both affect them as individuals and the institutions they are part of – positively and (especially) negatively. Details about the role of CHMs, religious leaders, and youth mentors in appendix

D E L I V E R Y

S E T T I N G

HPV vaccination specifically relies on the high trust in teachers in health matters, but the separation from the HS also puts their trust at risk and makes the whole process vulnerable

Teachers’ trust in matters of health builds on their position as educational authorities

This trust enables teachers – and schools – to sexual & reproductive health

The existing trust in teachers means that they can lend trust to HPV vaccines

However, relying on the trust in teachers – which has limits – is not without risk

“If you have good academic performance, they will trust you even in matters of health. When the performance is bad, morality goes down, and discipline goes down.

“We have different options for talking about health, sexuality, and drugs & alcohol. For example, we have counseling sessions… We also have an after-school pastoral education program, where we discuss topics of adolescence.”

“Our teacher from the counceling department is the one who talked to us about the vaccine. She told us the vaccine will prevent us from getting cancer… My teacher has been very nice to me – she gives me sanitary pads and food.”

“A teacher was chased away from a nearby school because of encouraging students to take the [C19] vaccine. Parents demonstrated and demanded his sacking – he had no option other than to leave this area.”

– Melany, senior teacher (40s, KE)

– Melany, senior teacher (40s, KE) Both parents and children in the fieldwork generally had high levels of trust in teachers without necessarily being able to pinpoint the mechanism behind that trust. Melany offers a likely explanatory model that has the benefit of showing how trust in different domains is linked.

SRH is on the agenda in Kenyan primary schools and initiatives such as the one Melany arranges in collaboration with a local church, where the children can anonymously bring up concerns. Melany considers SRH firmly within her domain that encompasses “good upbringing”.

– Kabibi (33, KE)

– Emelda (13, KE) Emelda is Melany’s student, and both she and her grandmother trust Melany, who is a key figure in relation to health, which is why they opted for the HPV vaccine without hesitation – even though other students’ parents refused to consent, e.g., on the grounds of infertility worries.

The story of a teacher being chased out of his job by worried parents demonstrates a critical vulnerability of school vaccination – when trust in the teacher is insufficient, the message gets lost, the intervention fails, and trust in the school may be damaged.

A G E N C Y

Perceived personal agency is a critical trust dimension across vaccines – and is particularly important when carers make decisions for dependents Agency becomes particularly salient for parents, who naturally hold strong opinions about their children’s health. Many have unfortunately experienced breaches in this trust dimension… Mandated vaccination in school during C19 has left its mark on trust in this dimension Multiple parents told that their children had either been vaccinated for C19 in school without their knowing – or, that they had been forced to accept it for the children to sit their exams.

Worried that the expectation of consent might be breached, some parents take precautions E.g., Salma already had her worries about vaccination happening in school without her consent, which was confirmed when a teacher called to ask why her son had refused the yellow fever vaccine – if she hadn’t instructed her son to refuse, she believes they would’ve done it without asking.

… and there are indications that agency is vulnerable within the HPV vaccination process Currently, daughters are the only source of information about the HPV vaccine for parents, which inevitably leaves unanswered questions and gaps. When these gaps aren’t filled by teachers or other intermediaries, there’s room for general vaccine suspicion – and does not set parents up for providing informed consent.

Raising the risk of longterm trust damage Non-consensual HPV vaccination risks damaging trust in vaccine delivery, future interventions, and the system Neither Father Taxi nor his wife consented to their daughter receiving the HPV vaccine (although she has received it), and they’re not alone as stories of this practice abound from different counties. This has a high likelihood of damaging trust delivery – and exacerbating vaccine suspicions in a context of big gaps in information and understanding.

S A F E T Y

While perceived vaccine safety is always important, this dimension becomes even more salient when the vaccination touches socially critical areas – in particular, SRH Safety is naturally a concern for health-seekers, particularly in lowtrust contexts where the buffering effect of high trust in the promise is low E.g. during the COVID-19 vaccination effort, very real fears around vaccine side-effects – e.g. when it came to pregnancy, breastfeeding, or interaction with underlying conditions – were expressed by many. As the vaccine was new, communities did not have enough time to experience it as safe, and intermediaries did not have the knowledge needed to discuss and assuage safety fears.

“I am often asked about vaccine sideeffects and how to treat them” - Fatma, LHW (32, PK)

This is especially true when vaccinations touch upon socially sensitive areas – e.g. fertility – which come under more scrutiny

Vaccines like the HPV vaccine are assessed even more carefully, given the perceived fragility of fertility and its social importance. In a focus group with adolescents, several mentioned their parents held them back from accessing the vaccine due to concerns around side effects, particularly damage to the reproductive system. “On that day my mum told me not to go to school…She told me the vaccine is not safe” – FDG girls (Kilifi, KE)

In the case of the HPV vaccine, parents do voice a variety of safety concerns. But a fragile information chain prevents deeper conversation which might drive trust in the vaccine’s safety

“The health system does not adequately follow up with girls or parents to encourage vaccine completion. If the girls were to get side-effects, we don’t know where to get this information or who to reach out to in case we have concerns regarding the vaccine.” – FGD mixed (Kitui, KE)

VA C C I N E

D E L I V E R Y

Overall, the HPV vaccination process seems to rely on a fragile information chain, where with opportunities to further build health-seeking behavior – and trust (SUB-)NATIONAL POINT OF STRENGTHENING

Generally, there seems to be a potential for more direct-to-parent information through different channels to fill the gaps, which can also contribute to taking some of the responsibility off adolescents.

#1 Adequacy of information The Trust Framework shows that every interaction matters when Promise trust is low, and that vaccine interventions are likely to leave a trace on system-level trust, for better or worse. However, because HPV vaccination isn’t integrated in the HS, it’s a missed opportunity for building girls’ trust in it, cultivating positive health-seeking behaviors, and ultimately bolstering system resilience. INTERMEDIARIES

#2 Delivery setting

POINT OF STRENGTHENING

The current HPV vaccination process is heavily reliant on borrowing teachers’ trust, which creates risks of damaging not only their personal trust but also that of schools and the institutional part of the system. Strengthening the Delivery could entail diversifying responsibility, especially among providers in the HS.

ADOLESCENTS

#3 Agency

POINT OF STRENGTHENING

At the last mile of the chain, the current Delivery relies heavily on adolescents passing on information to their parents, which has a high likelihood of leaving a significant gap into which vaccine hesitancy, risk aversion, etc. can seep in – especially if system-level trust is also low. Strengthening the Delivery could entail reducing the singular reliance on adolescents while retaining education to build their health literacy.

PARENTS 62

Summary: Ensuring trust in this quadrant is essential to drive uptake – particularly in contexts where trust in the promise is low – and build trust in the broader health system

Ensuring strong links between health campaigns in the health system creates opportunities for building health-seeking behavior – and for building trust in healthcare delivery more broadly. Potential routes to trust-building in the case of HPV: • In its existing form in Kenya, the campaign-like HPV vaccination process is highly reliant on borrowed trust from intermediaries – particularly teachers and schools – with little integration in the HS and limited sensitization through public discourse. Addressing these areas of fragility will not only strengthen the campaign but also add to trust • Additionally, more direct-to-parent information, moving some of the responsibility from teachers to healthcare providers, and relying less on adolescents to fill the gap

A focus on delivering on the trust dimensions in this quadrant in every vaccination is critical for building trust – not just in each vaccination individually, but in healthcare delivery overall over time.

ADEQUACY OF INFO

DELIVERY SETTING

AGENCY

SAFETY

Summary of: • •

Dimensions Implications

S U M M A R Y:

D I M E N S I O N S

The identified trust dimensions will be explored, tested refined in our operationalization of the trust framework TRUST IN THE PROMISE…

… OF THE HEALTH SYSTEM

AUTONOMY PRIORITIES ALIGNMEMT ✔ ︎✔ ︎✔ ︎

… OF THE VACCINE

BENEFIT R E L E VA N C E

C A PAB I L I T Y

TRUST IN THE DELIVERY…

FA I R N E S S

CONFIDENTIALITY C O M PAS S I O N

✔ ︎

COMPETENCE

ADEQUACY OF INFO D E L I V E RY S E T T I N G

AGENCY

ACCESS SAFETY AFFORDABILITY 65

S U M M A R Y:

I M P L I C AT I O N S

Addressing gaps of trust in each quadrant does not only strengthen the dimensions within, but has the potential to strengthen system resilience overall WHY TRUST IS IMPORTANT

IMPACT OF STRENGTHENING TRUST DIMENSIONS

HEALTH SYSTEM PROMISE As a primary point of interaction with the broader social contract, the health system is well-positioned to combat social isolation and marginalization

Delivering on these dimensions brings the potential to improve not just trust in the HS specifically, but also engagement in the broader social contract.

HEALTHCARE DELIVERY In the contexts studied, people perceive the health system as a continuum from personal to institutional – ensuring it is in fact experienced as a system is critical for creating trust-based demand for health services.

Delivering on these dimensions throughout the health system will help to create a more unified care experience – and more robust trust in healthcare delivery overall.

VACCINE PROMISE While a Promise can never be controlled entirely, acounting for promise interpretations and discursive links in vaccine positioning is key to building trust in this quadrant.

A focus on building trust in the benefit & relevance of a given vaccine not only drives demand, but offers a critical route towards building trust in the health system promise more broadly over time

VACCINE DELIVERY Ensuring strong links between health campaigns in the health system creates opportunities for building health-seeking behavior – and for building trust in healthcare delivery more broadly.

A focus on delivering on the trust dimensions in this quadrant in every vaccine is critical for building trust – not just in each vaccine individually, but in healthcare delivery overall over time. 66

Appendix A: An HPV perspective Pictured: Public market in Kitui, Kenya where health services are offered informally 67

H P V

P E R S P E C T I V E

This appendix collects trust-relevant HPV-vaccination insights gathered during deep qualitative fieldwork in Kenya & Pakistan 45 IMMERSIONS • 25 in Kenya • 20 in Pakistan

1000+ PAGES

24 FOCUS GROUPS • 16 in Kenya • 8 in Pakistan

of field notes compiled from interviews and observations

300+ HOURS

43 KEY INFORMANTS • 28 in Kenya • 15 in Pakistan

of recorded audio and video from interviews and observations

26 OBSERVATIONS • 10 in Kenya • 16 in Pakistan

5000+ PHOTOS

from the interviews and observations 68

H P V

P E R S P E C T I V E

Kenya & Pakistan were selected as countries of study largely due to the differences in vaccine roll-out stage – with each providing lessons for the other, and beyond In Pakistan, HPV vaccination delivery is in active planning but has not yet been publicly rolled out

In Kenya, the HPV vaccine has been introduced nationally and there is now a need to drive uniform uptake “Currently, 60 per cent of all eligible girls have received the first of the recommended two doses”

“We plan to roll out the HPV vaccination in Sindh in the fall of 2024. We have to roll out the HPV vaccine. There is simply nothing else to do.”

– Dr Mary Nyangasi Head of the National Cancer Control Programme

– Provincial health official

What we can learn An ideal context for exploring the trust impact of a current HVP-vaccination roll-out, including differences between counties, the emerging impacts of choices made, etc.

An ideal context for exploring a ‘pre-HPV vaccine roll-out state’, including existing societal narratives, positionality of target group, decision-making processes, etc. 69

H P V

P E R S P E C T I V E

This appendix sorts HPV-vaccination specific insights into 5 major themes:

Relevant context

Disease area

Target group

Intermediaries & influencers

Information chain

Current discourses and structural realities in Kenya & Pakistan which are impacting & are likely to impact HPV roll-out

Perceptions of the disease areas the HPV vaccine targets likely to impact uptake – and trust

Role, expectations and societal position of the HPV-vaccine target group: i.e. (mainly) adolescent girls

Key profiles which influence parents’ and adolescents’ decisionmaking

A core learning from the Kenyan HPV rollout: that the information chain is fragile

Sub-themes: 1. Changing gender roles post-COVID 2. Reliance on community providers

Sub-themes: 1. Cancer as salient motivation – but with key countrylevel differences 2. SRH introduces particular complexity

Sub-themes: 1. Adolescence as a time of particular social scrutiny 2. Men & boys at risk of feeling alienated

Sub-themes: 1. Key influencers per country and their role in target communities

Sub-themes: 1. In Kenya, an information chain that relies on teenagers 2. What this might mean for Pakistan

Relevant Context

Current discourses and structural realities in Kenya & Pakistan which are impacting & are likely to impact HPV roll-out 1. Changing gender roles 2. Reliance on community providers

Picture: A mother we visited in front of her house in Lahore, Pakistan. 71

C O N T E X T:

C H A N G I N G

G E N D E R

R O L E S

Both Kenya and Pakistan are currently going through cultural and economic shifts which profoundly impact the role and position of women in society…

“Traditionally, males are the head of household however, the reality is, whoever earns money controls things. In this community, males can’t earn enough to feed the whole family… In this situation, gender roles are switched. Women are expected to earn money as well as to make all the decisions for the family” – Saadia (42, PK)

More women are pushed into working outside the home…

…and more income sometimes means a shift in role…

…leading to broader societal discussion around gender…

In both countries, respondents highlighted how recent economic hardship (e.g. COVID-19, inflation) has pushed more women into work

Many highlighted that this change shifts women’s role in the household – adding additional workload, but in some cases also decision-making power

This has led to much discussion on women’s role in society in both countries – with high polarization around the topic

…and a risk that as their burden grows, women downprioritize their own health New roles and responsibilities are cited by women as a reason to down-prioritize their own health 72

C O N T E X T:

C H A N G I N G

G E N D E R

R O L E S

…opening up HPV-vaccine relevant conversations and possibly providing opportunities for a trust-based, female-focused vaccine roll-out Even beyond gender roles, there is a widespread sense that societal values, norms & behaviors are changing in lasting ways post-COVID

Amid these changes, parenting – a core area of gendered workload, falling primarily on women – is becoming more complicated for caregivers

In what participants described as a shifting cultural landscape, balancing local practices and values with regional and global influences is hard to achieve for families.

We spoke with parents who prided themselves in bringing up children in a way that accompanies contemporary changes. Yet, they shared that it was not enough to absorb the profound shifts at play nowadays

“It is obvious that if we let our children go outside with mobile phones… without restriction then they will go out wearing a veil and then change into jeans as soon as they are in public. This is what happens these days” – Fouzia (35, PK)

TRUST

IMPACT

A trust-based HPVvaccination roll out is not only beneficial, but timely HPV vaccination presents a unique opportunity to build much-needed trust amongst women – while contributing to an emerging conversation around women, girls, and the roles they play (and could play) in society

All this highlights a timely opportunity for engaging in new, trust-based discussions around women’s health – and the health of their families 73

C O N T E X T:

C O M M U N I T Y

P R O V I D E R S

In both countries, health systems rely on providers at the personal level – with CHMs* playing a critical role in providing health services, particularly for marginalized women Women rely on CHMs for most health-related issues far beyond their formal competencies – replacing other formal health services “I trust the CHV more than others for health advice. When I first heard about the vaccine, I went to the CHV, and she gave me the information.” – Rehema (40s, KE)

CHMs Without access to other more formal healthcare providers, women rely on CHMs even for health matters beyond their competencies replacing other healthcare providers and restricting their healthcare services to almost exclusively take place at the concrete level.

Health issues CHMs are consulted for:

Whereas other providers at the concrete level only are consulted for specific health issue Traditional birth attendant

Hakeems & healers

 SRH incl. family planning, and STIs  Mental health  Fertility and pregnancy  Children’s health

 

 Vaccines

SRH Fertility



Mental health

 

Pharmacists

Quack doctors

 Minor health issues e.g., fever and diarrhea

Pregnancy Childbirth

 Referrals and guidance to the system  …

*Community health mobilizers CHMs. CHMs both includes community health volunteers (CHVs) in Kenya and lady health workers (LHWs) in Pakistan.

 

Minor health issues Referral to specialized doctors

 

OTC medication Prescriptions 74

C O N T E X T:

C O M M U N I T Y

P R O V I D E R S

Though CHMs are go-to resources for women’s health questions, they are often themselves in a precarious position that may hamper the trust communities place in them TRUST

“Pregnant women come to me to ask for advice about which gynaecologist in the area they should go to and even about family planning… In other situations, women ask me personal questions – how to get hired as a vaccinator… [But young men harass me] they have a problem with me being a woman, not with the vaccines.” – Fatma (32, Lahore)

In PK, LHWs fulfill key needs that build trust in the system. Yet, they remain financially & professionally precarious In several low-income areas, LHWs are the first – and only – point of access to affordable health services for women. They often take on responsibilities beyond health to relieve community members’ issues. Though many of their female peers covet LHWs’ role as government employees, their salaries are low.

Despite their trust among women, LHWs continue to face physical precarity at the hands of other community members But LHWs exposed to danger within the communities they serve – where some of them face gender- and profession-based harassment. Despite discussing it with their hierarchical superiors and demanding support, little change seems to take place.

In KE, CHMs play a similarly demanding and precarious role Community Health Volunteers are generally trusted bridges between communities and the health system – and they also fulfil many other roles such as mentors, advocates, and role models. But like LHWs, their position in communities is often precarious, and they are not always well-equipped for the large variety of roles and expectations placed on their shoulders.

IMPACT

CHM’s informational precarity puts them at risk of losing communities’ trust when unable to answer questions Their position is also vulnerable due to not always being equipped with appropriate information to answer all their patients’ health question. As a result, they are at risk of amplifying misconceptions about women’s health, and potentially eroding communities’ trust should their health be at risk. 75

Disease Area

Perceptions of the disease areas the HPV vaccine targets likely to impact uptake – and trust 1. Cancer 2. Sexually transmitted infection

Picture: Photo of a flyer given at a health clinic for the HPV vaccine 76

D I S E A S E

A R E A :

C A N C E R

In both KE and PK, the fear of cancer is salient and thus a vaccine against cancer is welcomed as a remedy for what is perceived to be a death sentence and mysterious Cancer as a disease is dreaded, and causes remain mysterious… “If you hear cancer, you just know its death. There is no future. When someone gets cancer, they stop living.” – Min B (43, KE)

“Breast cancer is very painful as I have witnessed it in a hospital. I think it happens to women who have contaminated milk, but I am not sure of it”

– Ayesha (27, PK)

…and to make sense of this hard-to-understand but serious threat, people associate it with deeper social discourses, e.g.: Discriminatory ideas about women

Toxic modern environmental causes

“Diseases like cancer spreads because of condom use and mother’s refusing to breastfeed their children. This is proven by research”

“Other parents took their girls for vaccination saying the food nowadays has a lot of chemicals and if the vaccine is to prevent the effect of the chemicals”

– FGD Mothers (Township, PK)

– Farhana (25, KE)

While discourses persist around women, a vaccine against cancer can resonate with people given the perceived seriousness of the disease “Eventually people are taking in positively, cancer has become a big elephant in every room. So when they hear that this vaccine will help reduce cases of cancer in the community, people are warming up to it. So people should be sensitized very well.” – Jacob, community leader, (KE) 77

K E N YA

D I S E A S E

A R E A :

C A N C E R

The HPV vaccine is understood as safeguarding adolescent girls from cancer – which resonates with many, but can interpreted as protection from all cancers: a trust risk For many in KE, the vaccine is understood as preventing deadly cancer

This understanding is motivating, given cancer’s devastation…

… But brings a risk of being ‘over-interpreted’ as preventing all cancers

Cancers – esp. female ones – came up as a concerning disease for our participants whose nature and root causes are difficult to conceptualize.

Even beyond pain and death, female cancers lead to dire social effects, from a sense of “burdening” one’s family, to shame and isolation

Many understood the vaccine as protecting more broadly against cancer, however – presenting a long-term risk when it fails to live up to these expectations.

“My mum succumbed to cervical cancer. I hate that monster. So, my girl needs to take this vaccine to prevent cervical cancer…” – Mama M (38, KE)

“I just get scared. I’ve never asked even the doctors at the hospital what causes cancer when my mother was diagnosed. Up to now we are paying some of the debts… we mostly borrowed from relatives and friends”

– Salome (48, KE)

“My granddaughter came and told me their teacher had said that there were nurses coming to vaccinate them to prevent cancer. I was very happy because it meant that if she got vaccinated, she would be safe.”

TRUST

IMPACT

Cancer prevention is a timely and welcome benefit – but when ‘overinterpreted’ as protection against all cancers, this promise brings a trust risk Key to maintaining trust in the HPV vaccine will be ensuring that it lives up to its perceived promise. Ensuring clarity around the vaccine’s ability to prevent cervical cancer – and not all cancers – will be key in maintaining communities trust in it.

– Katundu (67, KE) 78

D I S E A S E

A R E A :

S T I

For most women in the contexts studied, SRH is a naturally sensitive area which is currently not well serviced by the experienced health system ABORTION

CERVICAL CANCER SCREENING

FAMILY PLANNING

“I went to the doctors, but all of them refused to abort the baby. I went to four different lady doctors, but they were all rigid and said that it is a sin, even though it was approved.”

“My friend went to a cervical caner screening, and the doctor called his two colleagues. They all came and looked at her, without speaking to her. It was very invasive and distressing.”

“I feared going for family planning services because you hear from other girls that they went for family planning, and they would be shouted at by health providers, so they end up fearing to go”

– Umaima (28 , PK)

– Amy (33, KE)

– Rose (23, KE)

To avoid stigmatization, women leave SRH unattended “I once went for cervical screening because I thought it was free…She openly accused me of being a lesbian. She even rudely told me to go and test for STI or HIV…I felt really bad and vowed never to visit the hospital again” – Lucy, FGD adolescents (Kisumu, KE)

Women who have decided on an abortion may face difficulties following through with the procedure and feel shamed by providers – even when the procedure is approved by religious leaders.

Women feel vulnerable at their cervical cancer screening – the screenings are experienced as intrusive and uncomfortable, which is amplified by providers’ insensitivity and lack of compassion.

When women – especially adolescent girls – seek advice on family planning, providers often question them and their need for family planning. Having to justify themselves, women feel judged and disrespected.

In Kenya and Pakistan, we saw women leave SRH issues unattended out of fear of judgment from uncompassionate providers. SRH avoidance was especially pronounced for ethnic minorities minorities like LGBTIQA+ people such as Lucy, who faced stigma and discrimination from her provider.

D I S E A S E

A R E A :

S T I

When the HPV vaccine is understood as preventing a sexually transmitted disease by those who are already vaccine hesitant, it can be linked with other forms of hesitancy Kenyan participants rarely linked the HPV vaccine to the HPV virus, which seems less controversial than other STIs “I heard from my aunt that cervical cancer is caused by abortions and also having sex while on periods. I didn’t know that it’s an STI and caused by a virus.” – Lucy (24, Kitui)

For those that made the link, the HPV vaccine may instantiate well-known types of hesitancy, e.g. INFERTILITY

POPULATION CONTROL

HARMFUL EFFECTS

“A colleague had her daughter vaccinated and warned me against it. She said the vaccine was a family planning method and that she feared her daughter might become infertile.”

“It became political, even at a national level, that the vaccine was being given to stop the population in the country in the next 10 years.”

“I heard a rumour that if you take the vaccine you will get cervical cancer” – Sophie, FGD adolescents Nairobi (14, KE)

IMPACT

Narratives clearly linking SRH with the HPV vaccine should be handled carefully to avoid long-term system trust damage

– Angel, CHV (KE)

– Lina, (KE)

In Pakistan, many hold strong explanatory models for cancer based on lifestyle shifts, which may make it difficult to establish a link between the HPV virus and cervical cancer.

TRUST

These interpretations are associated with existing low trust in health system promis

Explicitly referencing sexual health is likely to damage trust in the vaccine in the contexts studied, as HPV presents the potential to reify common forms of vaccine hesitancy and pass them on to children.

Target Group

– Role, expectations and societal position of the HPV-vaccine target group: i.e. (mainly) adolescent girls 1. Adolescent girls 2. Men & Boys

Picture: Focus group discussion with adolescent girls in Kilifi, Kenya 81

TA R G E T

G R O U P :

A D O L E S C E N T

G I R L S

Parents’ scrutiny around their daughters’ behavior increases during adolescence – a key moment during which they fear investments in their futures may be derailed

Adolescence is an important moment where opportunities and risks multiply…

… and girls carry especially heavy family & community expectations

Parents perceive adolescence to be a time where their children’s future is being crafted. Be it their reputations or their academic achievements – all aspects of their lives have to be preserved to unlock future mobility.

Preparing young girls for their future as mothers and breadwinners start as soon as they reach puberty. Parents in Kenya and Pakistan become acutely aware of the variety of risks that involve their daughters’ sexual health and behavior – with early pregnancy and sexual activity threatening both their economic and reputational futures

This creates a context where parents’ fears and anxieties are heightened, in environments that are perceived to be riddled with dangers to their daughters’ future “Girls as young as 8 to 10 years old are entering adolescence and experiencing the changes that come with puberty. Society and individuals start discussing girls' future marriages and responsibilities… The societal pressure can be overwhelming.” – Sara (46, PK)

TA R G E T

G R O U P :

A D O L E S C E N T

G I R L S

It is at this sensitive time that the HPV vaccine is introduced – leading risk-averse caregivers to weight its utility for and benefit to their daughters The gendered nature of the HPV vaccine’s promise taps into existing narratives around girls’ role and their protection

One of these narratives is particularly taboo, as it revolves around girls’ sexual activity

People’s perceptions of the HPV vaccine – which is being exclusively administered to girls – are inextricably interwoven with societal perceptions of their roles.

Because the HPV vaccine helps tackle the consequences of a sexually transmitted condition, parents struggle to understand its relevance for girls who are expected to remain sexually inactive. Some go as far as interpreting the vaccine as an admission of failure to protect girls against these dangers

“Boys and girls are treated differently in this community” – Ayesha (27, PK)

“And would my daughter still be, okay? And what if she gets the vaccine and something happens, will I blame myself ? So, we have that fear on that one I would say.” “The immediate question if the vaccine comes to would be, if this vaccine is going to be

– Marion (30, KE)

given to young girls, why of this age? What if then within 4 or 5 years, some of them are going to get married and they want now to stop them from giving birth? So, for them to understand that it is to prevent early cancer, at least cervical, it may not really click so quickly.” – Coach Guardiola (35, KE)

My daughters would not need HPV vaccine because we can never indulge in illicit sexual relations… It will also raise eyebrows if we will take this vaccine. People will wonder why we are taking vaccines for the virus which only spreads from having multiple sexual partners. – Umaima 28 83

TA R G E T

G R O U P :

A D O L E S C E N T

G I R L S

The unexplained exclusion of boys from the vaccination process only heightened caregivers’ concerns TRUST

In the research, we found concerns about the neglect of boys’ health issues…

…while they filled the informational gaps with pre-existing concerns

Due to the vaccine being considered a cure to “all cancers,” participants wondered why men would not benefit from it. This taps into entrenched narratives of neglect when it comes to boys.

Without clear explanation around the rationale behind the exclusive targeting of girls, participants filled the gaps with suspicion and existing narratives around population control.

“Why only girls and not boys?... Why are boys excluded? Cancer is cancer whether cervical or otherwise… ” – Daniel, Religious leader (40s, KE)

“I heard that when you get the vaccine, you won't be able to get children”

– Lorraine (35, KE)

“My friend’s father died after getting the COVID vaccine. That's why I am afraid of it. I think only children's vaccines are safe. I am not in favor of any vaccine at a later age"

– Ayesha (28, PK)

IMPACT

The explicit target of only girls can raise suspicion on the intent of the vaccine, potentially leading to hesitancy rather than acceptance

While a focus on strengthening girls’ health is generally welcomed, the target of adolescent girls can raise alarms around intended infertility. Any roll-out should be done carefully leaving no gap to be filled by other existing concerns. 84

Intermediaries & influencers Key profiles in each country, which influence parents’ and adolescents decision-making 1. Key influencers per country Picture: Visit of a mosque in Karachi, Pakistan

K E N YA

I N T E R M E D I A R I E S

I N F L U E N C E R S

The rollout of the HPV vaccine sits at a complex network of messengers who shape perceptions and acceptability of the HPV vaccine in Kenya Religious leaders

Religious institutions and leaders aren’t systematically involved in driving uptake, they are trusted in matters of vaccines and can have a significant impact in sparking mistrust or building trust

Youth mentors

Youth mentors have a play a key role in HPV vaccination because of their involvement in adolescents’ health especially in SRH matters and reach among out-of-school girls – making them a key bridge

Teachers

HPV vaccination relies on the high trust in teachers in health matters, but the separation from the HCS also puts their trust at risk and makes the whole process vulnerable – especially when they are unequipped to answer all questions

Community leaders

Community leaders such as area managers, chiefs and elders are key trust intermediaries in disseminating health information and reaching out-of-school girls, with many CHVs relying on their support

TRUST

IMPACT

Intermediaries play a significant role in communities as messengers of information and so present an opportunity to impact vaccine acceptability by lending their trust to interventions

K E N YA

I N T E R M E D I A R I E S

I N F L U E N C E R S

Religious institutions aren’t systematically involved in driving uptake, however it is clear that they are trusted in matters of vaccines and can have a significant impact SPARKING MISTRUST

BUILDING TRUST

The catholic church’s initial stance on HPV vaccination makes it clear how impactful these trusted institutions can be

However, religious leaders can also be a powerful force in driving uptake – some already take it upon themselves

“They were coming to vaccinate my daughter, but the catholic church said to refuse – they had tested it in their labs. The government didn’t come clear after the catholic church whistled… Let me first of all avoid it for my daughter. Then, when everything is clarified, it’s ok.”

1) JUSTIFYING VACCINES IN RELIGIOUS TERMS

2) GIVING DIRECT ADVICE FROM THE PULPIT

3) LENDING CREDIBILITY TO EXPERTS

“The bible tells us that God has given us all these herbs and trees for treatment, and there’s nothing wrong with that. So, you show them the truth, and they do understand.”

“I don’t know much about the HPV vaccine, but I have had my girls vaccinated because the church [pastor] said it will help prevent cervical cancer.”

“Sometimes it’s awkward for me to talk about health, so I’d rather have health workers do it in church. People will listen more if we’re in the church than outside.”

– Bishop Michael (50s, KE)

– FGD mothers (Kitui, KE)

– Father Ernest (40s, KE)

– Pastor Daniel (40s, KE) Multiple participants have mentioned how the catholic church made an already weak national introduction of the HPV vaccine worse by discouraging uptake and fueling the fires of fertility-related mistrust. Even among protestants the catholic church is trusted in matters of vaccines and can lead to parents refusing.

While Father Michael recognizes his limitations in medical matters, he does encourage congregants to take up health interventions by justifying them in religious terms.

Same as during C19, we’ve heard of religious leaders directly encouraging both cervical cancer screening and HPV vaccination, which can have a big impact among parents who might not hear of it elsewhere.

A common strategy for religious leaders is to give a platform to HCPs and congregants with some medical expertise, thereby lending authority to their message. This also takes place for adolescents during school break and in ‘women only’ sessions. 87

K E N YA

I N T E R M E D I A R I E S

I N F L U E N C E R S

Youth mentors have a potential role to play in HPV vaccination because of their involvement in adolescents’ health and reach among out-of-school girls Coach Guardiola // Using the sports club as a platform for strengthening girls’ health literacy

PROFILE Coach Guardiola trains teams of boys, girls, and gender noncomforming players every afternoon. He sees it as an opportunity to not only come together around soccer, but also for youth to get direction and tackle important topics in a friendly space, including SRH. Because of the trust they have in him, parents are comfortable – and even relieved – that he takes up these topics. Coach Guardiola also facilitates talks with female mentors, brings nurses to host sessions before matches, and one time they had an HPV information even in the CBO he’s part of.

Mentor Miriam // Referring (out-of-school) girls to HPV vaccination, but parents remain a barrier

PROFILE

“We mentor girls on health and reproductive topics. They get to be aware of their menstrual timings, the essence of being safe, and how they can interact with the community… We call people like Grace and Phoebe, who talk to them woman to woman. Sometimes they engage a qualified nurse, who addresses their health issues when they are at tournaments. The parents take it as an advantage that someone is talking to their girls about things they find difficult. When they come to watch matches, during the award ceremony they see sanitary kits being awarded to every girl.”

Alongside being a CHV, Miriam is a DREAMS mentor for 60 girls in an informal settlement. In addition to the programmatic goals of reducing teen pregnancies and HIV infections, they provide a safe space for the girls and opportunities for those not in school, e.g., through support in applying for school money, skill-building classes, and small business grants. This means that they’re a key touchpoint for hundreds of adolescent girls in the community and can direct them to the HPV vaccine, but it’s limited what they can do with parents, which Miriam sees as a systematic gap.

“We refer the girls who are part of the program for HPV vaccination, and we’re proud to say that most of the girls have been vaccinated. They get it in school, but for those who don’t we talk about it and refer them… But the information is only given to girls and not parents, which is an issue because they have to give consent. There are some we don’t reach, either because the parents are against it or because the girls are too difficult to reach.”

Youth mentor isn’t a protected title – we saw people from different professions come into the role and become trusted by adolescents and parents alike, often driven by a wish to give back to the community. This creates a further overlap of systems and roles as, e.g., CHVs, religious leaders, and teachers can double as mentors, who facilitate safe spaces for girls and become involved in their health whether when guiding them to HCPs, giving products, or encouraging HPV vaccination. 88

K E N YA

I N T E R M E D I A R I E S

I N F L U E N C E R S

Teachers are trusted to guide adolescents in health, their trust doesn’t extend into purely medical matters – risking their trust and successful vaccine delivery Teachers are trusted as health advisors in issues thought to be related to children’s behavior such as SRH …

… but in purely medical matters such as vaccines, teachers are often thought to over-step their mandate

Teachers’ trust is jeopardized when they overstep their mandate in health matters – undermining successful vaccine delivery

“We have different options for talking about matters of health, sexuality, and drugs & alcohol. For example, we have sessions about guidance and counseling… We also have a pastoral education program after school, where we discuss topics of adolescence.”

Parents trust teachers as health advisors in matters where teachers are believed to play a role in influecing children to keep them healthy e.g. for teachers to teach adolescents about safe sex and family planning.

The story of a teacher being chased demonstrates how teachers are not trust in all health matters. When issues become highly medical many parents question teachers authority.

When the trust of the teachers – the key messenger – is compromised the HPV message is lost and the intervention at risk of failing. This not only hinders succesful HPV vaccination but also jepoardizes trust in the schools more generally.

– Melany, senior teacher (40s, KE)

– Kabibi (33, KE)

K E N YA

I N T E R M E D I A R I E S

I N F L U E N C E R S

Community leaders – from chiefs to elders – also play a key role in adolescent health in the community – from creating awareness to lending their personal trust “My children were vaccinated in schools with yellow fever and COVID-19 vaccines. As a community leader, my children need to be an example to others … in my family we all received COVID-19 vaccines. We were told to lead by examples so that the community can follow… ” – Robert, community leader (50s, KE)

Community leaders are key for passing information…

…because they are trusted source in the community…

They know what is needed to impact parents vaccine attitude

…however, they don’t feel they have been sufficiently involved

“Do not skip the village elder. When interventions do this, mistrust is likely to ensue, as people are used to receiving info passed through their selected elder.”

“We usually have chief’s barazas in this community every week. Whatever is discussed in the baraza, e.g., hygiene… people have trust in this information.”

“When parents do not have adequate information on reproductive health i.e. HPV Vaccine they cannot make informed decisions, thus would deny HPV consent to their daughters”. – Jacob, Chief, (KE)

Robert, as the area manager of his ward, felt left out of the HPV intervention having not heard of the HPV vaccine or been informed in the county of Isiolo despite being willing to do so

– Angel, CHV (KE)

– FGD mothers (Kisumu, KE)

PA K I S TA N

I N T E R M E D I A R I E S

I N F L U E N C E R S

In PK, intermediaries also play a role in shaping perceptions based on other vaccinations – but can risk jeopardising their trust due to the sensitivity attached to the HPV vaccine

Religious leaders

Teachers

Community leaders

Religious leaders in Pakistan play a role in addressing matters of women’s health, seeing it as part of their role – yet they don’t consider themselves well-suited to drive vaccine acceptance and often stay out of engaging with people who are hesitant to get vaccinate. Teachers are trusted in matters of health by parents and influence vaccine uptake, but HPV comes with a heightened risk of jeopardizing their trust because of how sensitive of a subject the HPV vaccine is and its association with reproductive health.

Community leaders are key in spreading information and sensitising their communities but are aware of the sensitivity linked to a health intervention. All this, while they have to balance delicately being attentive to the needs of their communities and introducing new interventions.

TRUST

IMPACT

We foresee that intermediaries in PK also play a key role in driving vaccine acceptability but can simultaneously face backlash from their communities due to the sensitivity of the the HPV vaccine and the disease area.

PA K I S TA N

I N T E R M E D I A R I E S

I N F L U E N C E R S

Religious leaders address matters of women’s health, seeing it as part of their role – yet they don’t consider themselves well-suited to drive vaccine acceptance Religious leaders expressed concern with women’s health, and saw it as part of a larger narrative on the protection of girls and women

Though they see themselves as mediators in vaccines matters, they do not think they are able to drive uptake and tackle hesitancy

“We care a lot about our daughters, our sisters, and our mothers. Their health is a concern for the whole of the family. Some people have this misconception that maybe Islam does not allow you to talk about female health, or that it is only appropriate for a woman to talk about their personal health to close female family members. Islam does not say that.”

“The vaccinator calls me to complain about a certain household for refusing vaccines. I have tried many times to convince them, but they don't seem to change their mind. They say their family does not get children vaccinated and it's been like this for generations.” – Muhammad Ali, Religious leader (67, PK)

– Noshad Lala, Religious leader (48, PK)

Noshad Lala is a well-known religious figure in his community in Lyari, and has adolescent girls himself. He believes firmly it’s part of his Islamic duty speak on women’s health without restriction, and believes more should be done to prioritise the health of women. He sees prioritisation of women’s health as part of caring of women and girls in his community.

Muhammad Ali, a religious leader and general secretary of the mosque management committee trusts vaccines and advocates for them. He is often approached with regard to vaccine refusers on Polio, but believes based on his experience that it’s difficult to change their mind and has given up on this despite the sensitivity related to the polio vccine and the strict enforcement.

How is it different from Kenya?t different from KE? Even though religious leaders are open to provide guidance on women’s health, we foresee – compared to Kenya – a greater reluctance to encourage vaccine uptake

PA K I S TA N

I N T E R M E D I A R I E S

I N F L U E N C E R S

Teachers are trusted in matters of health by parents and influence vaccine uptake, but HPV comes with a heightened risk of jeopardizing their trust because of its sensitivity Teachers are powerful to sway opinions around COVID-19 and EPI* vaccination despite rumours around the vaccines…

… however, they have to approach conversations around SRH carefully to avoid losing parents’ trust

“We educated people must take the responsibility to spread awareness regarding vaccines. During COVID-19, vaccination teams used to visit my school. Some parents were resistant towards vaccines, but I convinced them.”

“It is very hard to earn people’s Trust, especially in the case of females – people never trust you easily. I have made several principles to ensure the parents that their girls are safe in this vicinity – female children separate from male children.”

Lubna takes it upon herself to learn about vaccines in order to spread awareness, and she sees it as part of her role as an educated person to not only take care of herself but also the health and betterment of the people in her community through sensitization.

For Sikander, SRH education is related to moral education, therefore he treads carefully to not risk compromising parents’ trust, e.g., gender segregating conversations about SRH and not teaching female students about these topics to avoid risking the trust he has built with parents.

– Lubna, teacher (28, PK)

– Sikander, teacher (26, PK)

* The Expanded Programme on Immunization (EPI) was launched in Pakistan in 1978 to protect children by immunizing them against childhood tuberculosis, poliomyelitis, diphtheria, pertussis, tetanus and measles

How is it different from Kenya? In Kenyan schools, SRH has been institutionalized and normalized to a greater extent – especially around HIV/AIDS awareness. However, this is not the case in PK, and despite teachers being influential beyond their formal roles, they might risk losing parents’ trust on the topic of HPV because of its sensitivity. The sensitivity and risk in optimizing uptake depends on how the vaccine is introduced in Pakistan i.e., whether it will be degendered or not.

PA K I S TA N

I N T E R M E D I A R I E S

I N F L U E N C E R S

Community leaders are also playing a key role creating awareness, but anticipate higher rates of hesitancy for the HPV vaccine and thus would need support to dispel myths Community leaders play a key role in a given health intervention, understanding the risks and sensitivities linked to them

In a HPV context, community leaders are more hesitant to advocate for a vaccine targeted at adolescent girls...

Shabir (40), a political leader, is himself trained prior to a roll-out and is also aware of the susceptivity of a health intervention

“The government will release some TORs according to which we have to spread awareness. We have streetwise teams who will be called in for meetings, and that is how I will convince people for this vaccine. But before that I will also complete my own research because it's a sensitive issue and people’s health cannot be compromised”

For Samad (40), a political leader finds the main obstacle for supporting a health intervention directed at girls is his fear of side effects, especially infertility. To address this issue and endorse the vaccine, he requires persuasion from a trusted authority within his political party or a religious figure who can dispel any misconceptions about vaccines.

...additionally, any roll-out comes with balancing pressing needs of their communities, especially the most vulnerable groups “It was challenging to persuade members of the community, who lacks basic necessities to take vaccines such as the polio vaccine. At first, 80% of the people in Hijrat Colony refused to take the vaccine.” – Samad, community leader, (40, PK) When done right, this has been proven to be successful. Shabir highlighted how he distributed ration bags during the pandemic, and provided mosquito repellent during a dengue outbreak. Thus, building trust in his community. 94

Information chain – A core learning from the Kenyan HPV roll-out: that the information chain is fragile 1. Information chain in Kenya 2. What it can mean for Pakistan

Picture: Observation of HPV vaccine training event for teachers in Kilifi, Kenya 95

I N F O R M AT I O N

C H A I N :

K E N YA

The chain of information tying the national origin of a campaign to a parent giving consent for a girl to be vaccinated shows high interdependencies and key vulnerabilities (SUB-)NATIONAL

INTERMEDIARIES

Ideal functioning

ADOLESCENTS

PARENTS

The current HPV vaccination process can be seen as a chain because each link depends on the former, and if one of them breaks, both vaccination and trust are jeopardized. Community-based intermediaries, who benefit from strong grassroots networks, reliably convey the information shared by authorities

National & sub-national authorities disseminate information to communitybased intermediaries

Adolescents receive credible and complete information from intermediaries, and move on to obtaining parental consent

Parents are fully informed by their daughters, and express consent to the HPV vaccination

Grounded functioning

Point of vulnerability 1 With perceived limited sensitization at the national level and through mass-media, the information and influence flow is channeled almost entirely through intermediaries whose trust is at stake.

2 When the HPV vaccination process relies on borrowed trust from intermediaries – who might already be strained – and the institutions they’re embedded in, it puts their trust at risk and fails to build trust in people’s regular HS and foster health-seeking behaviors.

3 Because of limited direct-to-parent information, it’s often entirely on an adolescent to inform and convince her parents at the last mile of the chain, making it highly fragile.

K E N YA

I N F O R M AT I O N

C H A I N :

K E N YA

While info on the HPV vaccine is shared through various channels – the onus falls on the adolescent to communicate to their parents – without being fully equipped to do so In the case of HPV, the onus is put on adolescents to get their parents’ consent and inform of the vaccine without being fully equipped with adequate information to 1) inform parents, risking their refusal to consent or 2) raise concerns during the vaccination process

TRUST

In context of HPV vaccination, the responsibility is on Farah to convince her parents of the HPV vaccine based on what she has been told in school. As such, it’s a very constrained process.

The chain of information ends with the parent’s consent or lack of such as there aren’t strong feedback or accountability loops in the process that can be used to ask questions and fill gaps in understanding.

“They came to my school and talked about the HPV vaccine last year. My mom just told us not to take it, that it isn’t safe.” – Farah (14, KE)

“We don’t know where to get this information or who to reach out to in case we have concerns regarding the vaccine.”

IMPACT

The HPV process as of now presents a lack of feedback loop for adolescent girls, and as such might risk hindering vaccine acceptability among caretakers. Notably, in instances where parents’ consent is circumvented it may not only lead to reduced trust in HPV vaccination but also in future school-based vaccinations

– FGD mixed (Kitui, KE)

PA K I S TA N

I N F O R M AT I O N

C H A I N :

PA K I S TA N

Challenges

In Pakistan, relying on schools as campaign sites yields greater uncertainty, and relying on girls as messengers at the last mile comes with greater risks Where

Who

At school or beyond the school?

Girls or adults?

Some parents choose to keep their adolescent daughters out of the formal education system “In our family, the girls are not allowed to visit schools after reaching puberty”

When they go to school, their attendance is not always continuous “Girls’ attendance is low at school due to rumors about kidnappings in the area” – Sikander (30s, PK)

Opportunities

– Zarina (38, PK)

Some girls attend madrasah instead “They are only allowed to continue their education in madrasah” – Zarina (38, PK)

Many will still sit in for exams – regardless of schooling status “My daughter doesn’t go to school, but she took private matriculation exams” – Ambreen (42, PK)

Girls as “messengers” for HPV may put pressure on them to have sensitive, if not risky conversations

Teachers only approach health & sensitive questions on an ad hoc basis…

Most parents thought conversations about SRH were too sensitive to broach directly with their children

“I take her [teacher’s] opinion regarding the matters of my son’s education”

Girls can be passive messengers (e.g., handing out informational flyers, but not consent forms)

… But teachers have strong direct communication channels with parents

“A mother called us when she suspected she had breast cancer – our number was on a flyer she received two years prior”

– Ayesha (27, PK)

“We have WhatsApp groups with parents, so they promptly share their concerns with us” – Palwasha (27, PK)

– Pink Ribbon Pakistan expert, PK

Beyond school, home is a safe environment where women already receive many health-related services

Female teachers and religious leaders are trusted by some to broach sensitive, SRH-related conversations 98