Trust is the bedrock of all relationships and is a key ingredient to establishing effective relationships between different players, be it researchers, communities, countries, policymakers or scientists. In this blog Lynda Keeru shares a discussion between Prof Doris Schroeder, Lauren Paremoer and Ethan Greenwood in the Trust, Trustworthiness and the COVID-19 pandemic webinar, organized by the Global Health Network. The blog captures lessons, best practices and processes in build and maintaining trust in international research particularly in the face of epidemics.
Doris defined trust, trustworthiness and explained to the webinar participants on the difference between the two. Trust is given while trustworthiness needs to be earned. Public health authorities and governments need to earn trust of the population they serve and the population/citizens on the other hand should give trust.
Community engagement and various other exercises should be included in research processes to increase trust in international research. Doris noted that it is not often that the trustworthiness is examined and emphasized and that this should be done regularly. She reflected on the key things that should be done to strengthen trust and identified fairness, respect, care and honesty as key values. They are not only ethical values, but also personal characteristics. To this end, you can assess whether a person acts with fairness, respect, care and honesty; or whether they act out of the opposite which is self-interest, manipulation, hypocrisy and dishonesty. During the COVID-19 pandemic, significant distrust was observed among countries during the pandemic. Unfortunately, it requires a lot of courage to point out when leaders are operating from a point of self-interest. A closer relationship between ethicists and psychologists would help pinpoint particular topics and issues; like manipulation in social media that hampers COVID-19 efforts.
Doris shared best practices from a project she was involved in that aimed to build trust in international research despite significant resource differentials. She indicated that a majority of leaders were from low- and middle-income countries (LMICs) and the majority of team leaders were women. They had two communities from Kenya and South Africa involved from the start who gave input on exploitation risks. They documented 88 such risks. They then analyzed and mapped them out into ethical value. All of them zeroed into fairness, respect, care and honesty. This work has been translated into a practical framework for others to use.
Lauren’s presentation focused on social citizenship and the idea that states have an obligation to realize the welfare of citizens. This could mean their health but also their welfare in other dimensions including education. States are positioned differently in the global political economy in terms of ability to realize this obligation. Historically, LMICs have struggled to realize the social rights of their citizens and one of the key drivers of this has been the lack of access to public monies and resources in order to deliver on the promises of social inclusion.
A long view by political scientists locates this lack in historical dynamics, particularly colonial dynamics. The incorporation in the global political economy has led to developing states focusing more on extractivist modes of production, to prioritize their foreign obligations more that their social obligations towards citizens. For this reason, even with COVID-19, many citizens have felt abandoned by their states and having abandoned prioritization of their wellbeing in the service of growing the economy and serving needs of global capital. On a concrete level, this is reflected in disinvestment of systems, particularly public health systems and the increasing privatization of care. These are some of the structural issues that made it hard for citizens to access care during the pandemic; and this was experienced both in the global north and south.
In LMICs, problems with trust are not necessarily only with the state, but also with the global political economy. A concrete example of this is that in November 2021, South African scientists undertook excellent surveillance on COVID-19 mutations and they identified the Omicron variant and were transparent in their communication. They said that it was highly contagious and because of where South Africa is positioned in the global political economy, they received a lot of blows including border closures and stigmatization. Owing to this, when we think of trust, we should not think of it only in terms of government versus citizens.
Ethan shared a presentation with a focus in the context of the pandemic. Just when the pandemic had begun and lockdowns were in full swing, trust in scientists across the world increased in every region except for Sub-Saharan Africa, Russia and Central Asia. Trust generally increased in all types of institutions including doctors and governments. One explanation for this might be since all people were in this crisis, they had no choice but to trust what they were told. People interviewed stated that they trusted doctors and nurses the most, then health organizations, closely followed by governments. Despite the high trust in scientists, only a quarter of people felt that their governments valued scientific advice.
Trust in what science creates in terms of trust in vaccines is very much linked to trust in scientists but it is not a black and white issue and it varies. In France for instance, trust in scientists is high and distrust in vaccines is also quite low. The correlation generally does stand. In LMIC’s, trust tends to be high and whether or not there was trust for vaccines, it did not make a difference.
In order to increase trust, scientists must and should listen and understand the needs of the public. Trust among the public really does vary within countries. In about 80% of countries where people said that they were living comfortably, they were more likely to trust scientists than those who said that they did not were just getting by or struggling. It is important for governments and other partners to be perceived as competent and reliable. Consistent communication is also crucial.
This blog by Lynda Keeru and Kate Hawkins (Pamoja Communications) reports back on the recent webinar – ‘Empowering urban adolescent mothers using digital tools’ – which was organized by the USAID Urban Health Community of Practice. The webinar on urban adolescents showcased implementation research to ensure rapid knowledge and learning from evidence. It featured speakers from theKiboresha Afya Mitaani Project and LVCT Health, both based in Kenya.
The scale of the issue
Teenage pregnancies continue to be a pervasive phenomenon in Kenya – over 50% of all maternal deaths from unsafe abortions in Nairobi are young women aged between 15 and 24 years of age. Forty-one percent of adolescent pregnancies in Kenya’s informal settlements are unintended – either mistimed or unwanted.
Dr. Lilian Otiso, Director of LVCT reiterated that teenage pregnancies are a key concern, so much so that during the recently celebrated World AIDS Day, part of Kenya’s priority areas and focus were the link between teenage pregnancies and HIV. This came from the recognition that the highest number of new HIV infections are among the population. The President of Kenya restated the need to find strategies to solve these issues together because they undermine socio-economic growth and negate the progress made to end AIDS.
Addressing mother’s needs and challenges
‘Kuboresha Afya Mitaani’, a USAID-supported implementation research project, came to life with an aim of contributing to better maternal, newborn and child health (MNCH) outcomes for 60,000 of Nairobi’s most vulnerable women and children. They focus on improving understanding of the drivers of poor health and testing innovative solutions that catalyze political interest and produce replicable models for other urban contexts.
This involves getting a better understanding of the unique and contextual needs of the individuals and communities in order to develop context-specific human-centered solutions that put at the core the voices of mothers and their support systems. The process also includes generating evidence to catalyze government interest in the adoption, implementation and scale up of the interventions. They use implementation research to establish a participatory forum of multiple stakeholders to own these interventions and ensure future sustainability.
The co-created, demand-driven data collected by the project revealed three areas of need for adolescent mothers:
Informational: Lack of information hinders care seeking, lack of knowledge about pregnancy itself
Emotional: Stressors on young mothers, isolation, stigma, violence and abuse and financial challenges
Care based: Disrespect in health care settings, lack of knowledge of entitlements, poor facility settings
Dr. Sathy Rajasekharan, Co-Executive Director, Jacaranda Health, explained how the project is using digital mechanisms, such as a free text messaging service to provide pregnancy information and field questions about pregnancy, birth and the post-partum period. They receive up to 3500 messages a day from across the country and includes a million mothers. It ensures that women with clinical questions are referred to health facilities.
The picture in informal settlements
Dr. Otiso explained how adolescent pregnancies are worse in informal urban settlements than in the rest of the country. The ARISE consortium focuses on accountability within informal urban settlements and the factors that affect the health and wellbeing of people in these spaces. Policy makers often have low levels of data from these settings and so the community’s needs are often invisible in policy and programming. Lilian explained that informal settlement dwellers are commonly left out of financing options and in programs like the rollout of UHC.
Solutions need to combine different elements of programming – community based interventions and digital technologies – to address the challenges of adolescent pregnancies and the need to care for girls in informal settlement settings and other hard to reach places. Communities must be empowered to use accountability mechanism to get redress from facilities or the state. These systems need to acknowledge that some groups within informal settlements – such as young people – are more marginalized than others.
She argued that it is sensible to combine some social accountability mechanisms like community scorecards, participatory action research cycles, and work improvement teams at community level with data that is being generated through the digital platforms to feedback to the community as well as health workers and planners.
Future directions
It is crucial to form partnerships to implement these projects and to scale up. There is a host of diverse research on informal settlements that can be brought to bear in our mutual challenge to produce and share knowledge that is critical for policy and for scale up. It is also important to strengthen policy at national and county level to support adolescent mothers and their newborns and children. The webinar also highlighted that embedded implementation research is demonstrating its ability to uncover critical information to affect change in hard-to-reach populations (i.e. adolescent girls living in informal settlements). The findings have numerous potential implications for other urban areas in Kenya and across the region.
Moderator:
Dr Cudjoe Bennett, USAID
Contributors:
Dr Sathy Rajasekharan, Kiboresha Afya Mitaani Project Director, Jacaranda Health
This blog was written for World Cities Day, 31 October 2020. The theme this year is Valuing Our Communities and Cities. People in informal urban settlements deserve our support and solidarity. In the blog we explore how they are experiencing some of the secondary effects of COVID-19 and mechanisms that could strengthen the ways that they are involved in the pandemic response.
Current upheavals highlight longstanding socioeconomic inequities that continue to raise difficult policy and accountability questions. Some forms of vulnerability are more discernible than others. Nearly one billion people live and work in informal, under-serviced, and precarious urban conditions. Before COVID-19, these communities occupied a peripheral and precarious space, both physically and in the imaginations of those in power. Such spaces are often rendered invisible and excluded from city-wide processes of development, at other times hyper-visible as sites of chaos or calamity.
Non-COVID-19 related health care
Our colleagues in Sierra Leone have argued that people living in informal urban settlements are more pre-disposed the chronic conditions which affect COVID-19 but that this is under-explored.
“The ‘slow violence’ of informal settlements includes everyday exposure to poorly managed waste, dust, smoke, fires, floods, disease vectors, long journeys across cities on overcrowded shared transport which can spread infections, occupational hazards, crime, but also insecurity, stress, lack of accountability, discrimination, abuse, invisibility, exclusion from economic and political power, and an inability to claim and maintain basic rights or services.”
In all contexts we work in lockdown has led to mental health strains and greater stress and anxiety are reported as precarious existences deepen with continued containment. Lockdown itself is troubling but also the loss of income that comes with it. In Sierra Leone we have documented detrimental psychosocial effects on health care workers as well as interventions from the Ebola epidemic that may help alleviate some of this burden. In Kenya as in other settings, access to healthcare has been disrupted. This has impacted particularly on mothers and children, residents with chronic conditions and the elderly.
“Individuals with chronic illness suffer a lot as they need specific medical attention, yet …we lack timely and adequate information on treatment of chronic illness…. Sometimes when they access the information, we lack money to buy drugs during this outbreak as many people have lost jobs…”
In India the heightened cost of transport to facilities and of services is having a troubling effect. Fear of infection is leading some to rely more on private pharmacies.
Economy and food security
COVID-19 has pushed previously financially stable people across informal settlements into poverty. For example in Dhaka, Bangladesh, the pandemic led multinational companies to cancel orders to garment factories plunging this workforce, who mainly live in informal settlements, into precarity. There is risk of malnutrition and starvation as day labourers are prevented from earning an income. COVID-19 has disrupted traditional networks of support. People are resorting to loan sharks as rent and food are hard to buy on credit. They are relying on community/family members, collecting cash from friends. Local crime rates have also risen. How long can this go on for?
When people are in ‘obhab’ (scarcity), people tend to fight more, they tend to resort to stealing. There is a chance of increasing crime in this community. I am worried that theft and crime will increase in our community.
In India, as elsewhere the work of ‘waste pickers’ and other sanitation workers is vital to the cities they work in, particularly now when the need for a sanitary environment is at its greatest and there has been an increase in biomedical waste. Yet, they remain ‘invisible’. Despite their key role, the provisions put in place to ensure their safety in the pandemic are inadequate. For example, aid meant for vulnerable populations, is often based on certificates of citizenship which denies these communities eligibility for many forms of relief, leaving them no resort but philanthropy and luck.
“We are Indians! I have all the documents like you have, to prove that I am an Indian: voter ID, ration card, Aadhar card…But we do not get rations since the ration cards are based at our homes, which we moved from six years ago. I transferred my Aadhar card because we cannot get jobs here without an Aadhar card and PAN card.”
This has been exacerbated by brutality in policing of lockdowns, targeted as informal communities, a troubling pattern that has been seen in many countries including Kenya. A community member in India said:
When we tried to resume work after the lockdown, we were troubled by the police. They said we give rations and all that, then why do you need to get out? But rations are not much. If the NGO had not supported us then, we don’t know what we would have done. We would have died of starvation before corona hit us.
The health system alone cannot solve these issues which require multi-sectoral approaches to address the structural, economic, patriarchal and social inequalities poor people face.
In Bangladesh, as elsewhere, we have seen stigma and discrimination against households affected by COVID-19. The coronavirus is seen as contagious and fatal disease. As a result, there are fears of quarantine and isolation or being locked up and never seeing one’s family again. Red flags are placed in homes of infected people and the media pictures of death, and bodies being thrown in separate burial grounds stokes fears that people will be buried without the appropriate religious ceremony. Fears of getting the virus have resulted in surveillance of others, under-reporting, harassment of family members with spouses returning from abroad, harassment of people with flu-like symptoms and suspicions about outsiders.
Treatment of women and children
In Kenya and elsewhere there have been increases in reports of Gender Based Violence (GBV) in informal settlements since COVID-19 began, and lockdowns and curfews were put in place.
Women are the hardest hit by COVID-19, they are primary caregivers of individuals who are ill during COVID-19 pandemic… Women are not the decision makers in most families and as such, the money they make in a day to day activity ends up in the hands of men in the family.
In Kenya, people with disabilities make up 10 percent of the population, an average of 4.4 million people. 66 percent of these people live in rural areas while 44 percent are in urban settlements, mostly for work purposes. Due to the rise of sexual harassment and domestic violence, disabled people have been majorly affected and abused by a spouses, parents or caregivers. The frustrations of lack and mental stress makes them among the more vulnerable victims. This causes unwanted pregnancies and contracting sexually transmitted diseases.
Conclusion
We need to address the situation of the urban poor through context-specific policies and action in the COVID-19 response. We should not think of the urban poor as a homogenous group, so data must be disaggregated (by gender, age, occupation, ethnicity and other axes of inequity). Longitudinal qualitative research is critical to capture impact now and post-pandemic. We must also reframe health beyond a biomedical (disease model) approach and put in place socially just models with the well-being of communities and people at the centre. Health decisions and policies must be balanced with social and economic interventions.
Communities have the potential to mobilise and take action to address life-threatening experiences. For example in Sierra Leone, FEDURP members’ action in Thompson Bay supported quarantined homes with drinking water while government support was delayed. In Funkia FEDURP members used the fund generated from the public toilet they manage to give out revolving loans to their members to revitalise their livelihood sources.
There is an urgent need to bridge the gap between formality and informality through recognition and inclusive participation so that the needs and aspirations of informal settlements can be addressed. There is a growing need to recognise and draw on community knowledge, creativity and capacities, which is the basis of first responses during pandemic. Governments should place communities at the centre of development aspirations and actions and work with them to develop appropriate support.
This blog draws on the work of Kate Hawkins, Sabina Rashid, Joseph Etyang, Janice Cooper, Bintu Mansaray, Rosie Steege, Caroline Kabaria, Sally Theobald, Blessing Mberu, Laura Dean, Haja Wurie, JK Lakshmi, Joseph Macarthy, Hayley Macgregor, Karsor Kollie, Joanna Raven, Lilian Otiso, Rachel Tolhurst, Annie Wilkinson, Abu Conteh, Beate Ringwald and Francis Anthony Reffell.
In this blog Lynda Keeru reports back on the launch of the WHO Handbook on Social Participation in Universal Health Coverage. The webinar focused on educating participants about why social participation matters and presenting real life experiences of implementation. During the webinar, the tensions at play in the implementation processes also surfaced.
Dr Tedros opened by saying that the COVID-19 pandemic had demonstrated that societies are only as protected as their most vulnerable, and that equally engaged and empowered communities are the best defence against health threats.
Dheepa Rajan gave a brief overview of what the handbook is about and ran the participants through the key messages in the chapters. She indicated that the handbook’s main target audience are member states and governments; with its engagement modalities directly engaging with populations through communities and civil society. The overall goal of social participation is to achieve Universal Health Coverage (UHC). The handbook acknowledges that civil society plays a key role in strengthening social participation in policy and decision-making.
For social participation for UHC to be achieved, an enabling environment for participation needs to be created by evening out the playing field with the aim of empowering those who are weaker and less powerful. A participatory space is a powerful tool as it minimizes power asymmetries when designed in a manner that counters formal and informal barriers for equal participation. Social participation challenges societal conventions of whose voice should be heard, who should have agency over their own health and who should be empowered to meaningfully contribute to policy making.
The format and design of participatory processes influences the ability to effectively take on representation roles. Selection strategies should be balanced and transparent and formats should ensure that they lend legitimacy to participants. Some of the ways to make this happen include: having neutral facilitators, forming homogenous focus groups, having participants decide on meeting locations and trusting them with preparing the material that will be used.
In order to increase the capacities for meaningful government engagement with other stakeholders there is need to recalibrate the balance of power which is rooted in expertise, knowledge and speaking skills. Quality of exchange between these stakeholders is determined by the competency and capacity of the participants. A level playing field for all stakeholders gives everyone an equal footing and gives way for more honest and fruitful discussions that influence policy.
Recognition is the most fundamental dimension of capacities for equal interaction but the most difficult to build.
It is important to note that policy uptake is not always the priority in participatory governance processes. Value driven arguments and participation itself add value.
Fran Baum reiterated that real value must be accorded to the knowledge and experience of community members because they bring something that most public servants, international bureaucrats, technical people can’t bring. They know their community best – they live it, and they breathe it. The only way to make health services work, is by listening to the people whom it’s meant for and shaping the interventions around these needs, particularly those that are marginalized such as women, indigenous people, migrants and people living with disabilities.
WHO hopes to start working with a number of countries to implement the recommendations from the handbook. They will tie their efforts to UHC 2030 and CSO engagement mechanisms.
The handbook must be promoted widely to ensure that it influences change and especially ensure that it gets into the hands of governments as a practical tool for sustainable social participation. We are happy to be part of this promotion.
Event was organized by WHO, UHC2030, Health System Governance Collaborative, UHC-Partnership and PMNCH
Webinar speakers:
Dheepa Rajan – Health Systems Adviser, WHO
Stephanie Seydoux – French Ambassador for Global Health
Ravi Ram – People’s Health Movement and Special Advisor, COPASAH
Joy Phumaphi – Executive Secretary, African Leaders Malaria Alliance
By ReLAB-HS Consortium (Johns Hopkins Bloomberg School of Public Health’s International Injury Research Unit (JH-IIRU), Nossal Institute for Global Health at the University of Melbourne, Humanity and Inclusion, MiracleFeet, PhysioPedia, and UCP Wheels for Humanity)
We live in a time of rapid demographic and epidemiological change. Improvements in health care mean people live longer -the proportion of the population over 60 years of age will double in the next 30 years and they will live with the concurrent illnesses and disability that are part of the ageing process. Additionally, approximately 150 million children and adolescents experience disabilities. And COVID-19 – a disease that appears to manifest as long-term chronic ill-health in many – has demonstrated that we now live in a world where both communicable and non-communicable disease must be tackled simultaneously.
Rapid urbanization and concurrent increases in car ownership and use leave people vulnerable to injuries. In addition, we live in a world that faces political, economic and environmental flux and shock. Conflict and environmental disasters are common.
Already stretched health systems in low- and middle-income countries (LMICs) face challenges including poor infrastructure, insufficient specialized care-providers and trained professionals, and inadequate financial resources.
Rehabilitation and assistive technology
Rehabilitation is integral to overall health and wellbeing. According to recent estimates, one in three people across the globe will require rehabilitation at some point in their lives.
Yet many people do not have access to much needed assistive technology (AT) or rehabilitation services, which exacerbates their condition and may lead to further complications and lifelong consequences. Lack of access to rehabilitation and AT impacts not only on people’s functioning, quality-of-life, and well-being, but has implications for their family and community. Lack of rehabilitative support can trap people in a whirlpool of poverty due to lack of educational and work opportunities, as well as social isolation due to stigma and discrimination.
Building better health systems
In many LMICs, rehabilitation and AT are often offered as stand-alone services. However, there is need to rethink organization of rehabilitation services as an integral part of health systems to achieve better health and well-being of the population.
Solutions need to be contextualized, demand-driven, and be informed by principles of systems and implementation science; there’s unlikely to be a one-size-fits-all solution. This calls for a better understanding of local needs, how rehabilitation services and health systems are currently organized and operate, and barriers to integration that need to be addressed.
Potential patients need to understand the services that they require and where they can get them from. People are the center of the health system.
Engagement with non-governmental organizations, civil society organizations, and the private sector is key to ensure successful implementation and uptake of interventions.
Building such health systems will require collaboration across the primary, secondary and tertiary levels and between different sectors within and outside government. The road ahead is not easy, but it is necessary if we are to meet the needs of citizens and communities facing acute and long-term challenges.
By Kim Ozano, Abu Conteh, Laura Dean and Kate Hawkins
ARISE will engage with communities in participatory method design, data collection and analysis to develop priorities and actions. To make this a reality we are debating the community based participatory approaches we will use. It’s a rich and challenging discussion! In this blog we outline some issues which are taxing us. How can we build on existing community strengths? How can we ensure that the most marginalised community members are included in our research? What safety challenges will we face in the research process? So, if you have experienced any of the same dilemmas, please comment below. It would be great to talk and share experiences!
How to build on existing community structures
ARISE wants to engage and work with existing community structures and processes. However, how to do this is not straightforward. We have had a lot of discussions about the best way to introduce the project and how to capitalise on the strong work that is already underway in relation to accountability and health.
Researchers and co-researchers (their community counterparts) recently met in Sierra Leone. There is a lot going on in the informal settlements of Freetown. Community members are actively collecting data contributing to local development and advocating for change. Because of this, co-researchers wanted to take advantage of these pre-existing structures in the ARISE research. They felt very strongly that setting up parallel ‘research specific’ systems was risky because they might not properly respond to the situation in informal settlements.
For example, representatives from the Federation for Urban and Rural Poor (FEDURP) believed members who are community mobilisers would be good at raising awareness and explaining the purpose of the research. However, communities didn’t always think these community mobilisers were ‘trustworthy’. As a result, other FEDURP members – who are passionate about accountability and health – might be better at data collection or facilitation. These passionate change makers need to be identified by community members as opposed to being handpicked by powerful community members. We discussed how incentives can compromise organic processes to identify change makers and should only be offered later in the research process. Therefore, the process of selecting co-researchers was systematic, trying to select the best from FEDURP, community representatives and community mobilizers. Selection was based on skills such as facilitation, mobilization, community activism and awareness raising skills, particularly on health.
Defining researchers, co-researchers and participants
FEDURP felt part of the ARISE research consortium, particularly as they had been part of the original consortium planning process. They were confused about whether this made them co-researchers or researchers. FEDURP is a representative organisation for people living in informal settlements. Does this immediately make all its members co-researchers? If FEDURP is a core-part of the ARISE family, should all co-researchers in Sierra Leone be members of FEDURP? Members of FEDURP, who also live in informal settlements, became further confused when they considered that they could also be ‘participants’ in the research process.
As we moved through our conversations it became clear that co-researchers should not be considered a uniform group with a ‘one-size fits all’ definition for their engagement, roles and responsibilities. Community members and organisations might move through different positions/spaces of participation in a fluid way. Co-researchers and researchers must develop trust with each other, the process cannot be forced or pre-designed, rather organically developed alongside the research.
How to facilitate the engagement of marginalised groups
Pre-existing community platforms for engaging co-researchers are unquestionably valuable to a new research project like ARISE. However, we want to ensure that marginalised or vulnerable community members are equitable participants in the process. These people may be less able to participate in pre-existing community development and advocacy. So, we will need to look for new ways of engaging to make the process inclusive.
We have been grappling with the dilemma of what to do when marginalised groups are disempowered and as a result unable to participate as co-researchers. Co-researchers – who have local knowledge on what is feasible and acceptable – could adapt participatory methods to better engage marginalised groups. Getting a better understanding of how marginalised groups like to communicate (e.g. through storytelling, drama, drawing pictures) and working with them to create outputs may help them feel more empowered. Informal discussions and ethnographic observation – interacting with marginalised groups in their own settings – might spark ideas. We also considered using ‘gatekeepers’ (or powerful people or institutions who provide an entry point to marginalised communities). For example, disabled persons organisations will usually know how to communicate with their constituency and support their participation.
Working with children and young people
Children and adolescents in urban informal spaces are often vulnerable to ill-health and have difficulty accessing accountability. However, we are concerned about how to ensure that we have a clear process of consent for their engagement in the research. Often children do not have a parent or guardian that can agree to their participation. We must strike a balance between the democratic principles of participation and empowerment and the ethical challenges of appropriate management, support and protection. Collaborative projects with young people are key to understanding their experiences of health and well being. But young people are often excluded from, or left out of, research projects.
Other marginalised groups
People with cognitive or intellectual disabilities may not be able to provide consent through conventional processes and we will need to account for this in the way we work. Sex workers and LGBT people may not want to be involved because they don’t want to be identified. These groups might be reached through community agents who have connections with them. We will continue to explore this ongoing dilemma during our research.
How to minimise risk and harm
We want to ensure our work is ethical and that people are safe. Community members and co-researchers might be put at risk if: tensions arise about the choice of co-researchers; communities are hostile to data collectors; or the findings of the research cause ructions.
Our discussions have thrown up a number of strategies to mitigate risk. We will involve communities in selection of co-researchers. That way they have ownership over the process and are more likely to support the research. We will try and be open and transparent in our working practices – communicating our intentions and the process. Research teams will keep an open dialogue going to keep abreast of emerging risks. It is important that ethics and safety are central to researcher training on participatory methods. They will be are aware of the boundaries of their role as researchers and put the safety and wellbeing of communities first.
Concluding reflections on participatory research
As ARISE is rolled out, we are thinking critically about power and participation. What does this mean in practice and in terms of generating equitable research partnerships? We are particularly keen to disrupt the balance of power between ‘researchers’ and the ‘researched’. Working through ethical dilemmas together and documenting this process will help us to learn and share with the wider research community.
There is no single blueprint for participatory research. It is a process rather than a set of uniform steps with predictable outcomes. Because we all come from different starting points, we have created an internal community of practice to exchange ideas.
We welcome, through the comments below this blog, insights from others who have experienced similar dilemmas.
Communities are the most tested by the
coronavirus pandemic (COVID-19). Those that are most feeling the consequences
are the poorer communities where its implications will be massive and may unfortunately
undo many of the strides and gains made especially in public health and health
systems. Governments, health practitioners, NGOS/CSOs are hell bent on ensuring
that development gains are not reversed.
In a webinar organized by Community of Practitioners for Accountability and Social Action in Health (COPASAH) stakeholders from different fields highlighted the challenges they are facing in responding to this pandemic and the effects it has had on communities. Five speakers from Uganda, Liberia, India and Macedonia meant there was representation of nearly all the continents. This blog highlights some of the challenges and some of the different ways stakeholders are working around the pandemic to provide essential health services to their communities and hold governments accountable.
Some challenges cut across the board while others
are specific to individual countries. A common challenge is the fact that health
workers don’t have permits to move around which restrains them from providing
the very much needed services especially in the wake of lockdowns/curfews in
most countries. Many countries are concerned with ensuring that governments do
not forget their roles and obligations in ensuring that women do not die
unnecessarily, especially during childbirth.
Maternal mortality and reproductive
health
In Uganda for example, there has been a
rise in maternal mortality because pregnant women are having to walk long
distances when heavily pregnant to get permission to get to a facility. This
has meant that women are dying by the roadside, delivering by the roadside and
even being pronounced dead on arrival at the facilities.
Advocacy efforts are already underway with
letters written to the President to report the rising cases of maternal
mortality cases and the challenges being experienced by the women like the lack
of public transport. The letter suggested solutions like the government
allowing a few ‘bodabodas’ to be in
operation in order to ferry these women to the health facilities.
Through concerted advocacy efforts,
antenatal visits have now been restored in Uganda and the same for access to
family planning which is essential.
Lack of COVID-19 preparedness
One of the issues that seemed to affect
most of the countries was the fact that a lot of attention is being accorded to
COVID-19 in health facilities which leads to sidelining of the rest of the
services. This causes delays which again puts the women and all other patients
at high risk of contracting the disease. The preparedness for handling of COVID-19
in many countries and health facilities is low. Facilities may not have separate
wings/rooms to handle COVID-19 patients.
Human rights
In Uganda, efforts have been put in place to counter human rights violations
and harassment especially from the police. Legal experts have been engaged to provide
legal aid counsel which ensures that people especially at the community level have
access to legal services. The advocacy efforts have been around the engagement
of the police and government by lawyers to urge them to respect and uphold the
rights of the people. The presenter also highlighted that there were reported
cases of mothers being restricted from accessing cancer services, Maternal Newborn
and Child Health (MNCH) as well as cases of young people experiencing
challenges accessing family planning (FP).
The presenter from Uganda drew special attention
to the fact that their President was active on social media and responds to
issues raised on the various social media platforms resulting to social media
becoming a key tool for advocacy. The lawyers and other legal practitioners in
Uganda also got together and wrote to the World Bank (which like in many other
countries has given money to Uganda to tackle the pandemic) to request that the
World Bank helps them hold their government accountable by asking the Ugandan
government to reveal to them how they plan to use this money.
Macedonia is also experienced challenges
regarding police harassment toward the marginalised Roma community. However,
this is being countered by the effort NGOs are making to ensure that the Roma
community are exercising their right to health and also right to services.
In Mumbai people are being denied health
care services until they test negative for COVID-19 yet according to the
guidelines, health care providers should not deny people care. However, due to
the lack of COVID 19 test kits, hospitals continue to do this. Some patients
with chronic diseases are really suffering as they are being denied care from
fear that they may have COVID-19. Private health care facilities in India
account for the highest number of spread of the COVID-19 among health care
workers and this has been due to the fact that infection control protocols have
not been implemented properly and PPE is not distributed according to the
protocols. Harassment of patients and their
support systems has also been witnessed like in the case of a wife who was told
that she would be subjected to daily testing of COVID-19 if she were to be
allowed to visit her husband who was admitted for a different illness.
Civil society and private sector involvement
Unlike many other countries around the world, Liberia has managed to have the civil society represented on the national committee for COVID-19 response which is an important measure as they are key players in this pandemic and many other fields and their voice at the table cannot and should not be overlooked. Their representation at the national committee helps to push the various advocacy agendas and countries represented on the webinar were urged to borrow this from Liberia to help them enhance their advocacy efforts.
Medical support groups have played a central role in India. This is very commendable as it supports health workers especially nurses to be at the table as their voices are often not represented most of the time. In India, a diverse private sector plays a role as opinion leaders and give direction on how they think the response should be handled. However, the general challenge observed in these private institutions is that they are trying to still make profits even in the wake of this crisis and make up for the losses they have made which leads to issues like them overcharging PPE and a general inflation of costs. They also put their patients at high risk of contracting the virus as one PPE kit is often used across different patients in wards much as each patient is paying for a kit.
While there seem to be insurmountable
challenges in the response to COVID-19 and the effects it will have on health
systems and the reversal of health gains made over many years, the collective
efforts being put in by health and legal professionals across the world serves
as a beacon of hope. It’s expected that the world will be very different
post-COVID-19 but the hope is that the effort jointly being put in in different
areas like innovation, creativity and capital will keep drawing people together
and people will keep having a continuous need for a community and each other.
Acknowledgements:
Many thanks to the speakers in the COPASAH webinar:
Noor Nakibuuka Musisi-CEHURD,
Uganda
Zoran Bikoviski-NGO KHAM,
Delcevo, Macedonia
Inayat Singh Kakar-Medical
Support Group (Delhi) & PHM, India
Joyce L. Kilikpo-Public Health
Initiative, Liberia
Dr. Amina Magashi Garba-
COPASAH Co-Convener, AHNBN, Nigeria
Power dynamics within international development and global health are often hidden. This is particularly true in partnerships between organisations in high- middle- and low-income countries. Uncovering and analysing these relations is at the heart of much of our ethics work. In research, relationships between universities and communities face similar challenges.
Highlighting and challenging abuses in power can be uncomfortable and sometimes dangerous work.
Luckily many in the sector are working for change. Analysis and action aimed at decolonising development are increasingly popular. This aims to disrupt and destroy systemic and institutional relations of power that keep some people perpetually down and safeguard the security and stability of others. Also, tackling inequity in the wider world and within our own organisations and networks is the mainstay of feminist approaches to development. There’s a long history of participatory tools to act on asymmetries in relationships of knowledge generation and the creation of evidence.
Many of the projects that Pamoja supports are use research and communications to understand and act on injustice and inequity. For example, RinGs has done ground-breaking thinking and training on how gender pervades health systems. ARISE uses participatory methods to improve accountability mechanisms in informal urban areas.
The Power Awareness Tool
A few weeks ago I had the pleasure of doing some editing work for Partos – the Dutch membership body for organisations working in international development.
They have produced a new tool for looking at power in partnerships. Here’s their rationale:
There is widespread consensus that in partnerships for development, donors, and international NGOs have too much power, and local NGOs in the Global South too little. Despite this consensus, the power imbalances persist. Apparently, it is hard to put the principles into practice. Those with the most power, usually the donors, and to a lesser extent the INGOs, are not always the most knowledgeable about the local situation or about the change needed and how. While there is broad consensus on this, power imbalances persist. We believe this is partly because power is in many ways elusive. Therefore, the Lab decided to develop a tool to make power more visible, enabling partners to analyse and reflect on their power relations.
I think there are many people who will find this tool useful. Maybe you want to check the health of your partnerships but you’re not sure how. Are you entering into a new organisational relationship and you want to get off on the right foot? Or maybe you feel like your partnerships are not properly balanced but you can’t identify how. The tool is simple, easy to use and freely available. Why don’t you check it out?
ARISE will engage with communities in participatory method design, data collection and analysis to develop priorities and actions. To make this a reality we are debating the community based participatory approaches we will use. It’s a rich and challenging discussion! In this blog we outline some issues which are taxing us. How can we build on existing community strengths? How can we ensure that the most marginalised community members are included in our research? What safety challenges will we face in the research process? So, if you have experienced any of the same dilemmas, please comment below. It would be great to talk and share experiences!
How to build on existing community structures
ARISE wants to engage and work with existing community structures and processes. However, how to do this is not straightforward. We have had a lot of discussions about the best way to introduce the project and how to capitalise on the strong work that is already underway in relation to accountability and health.
Researchers and co-researchers (their community counterparts) recently met in Sierra Leone. There is a lot going on in the informal settlements of Freetown. Community members are actively collecting data contributing to local development and advocating for change. Because of this, co-researchers wanted to take advantage of these pre-existing structures in the ARISE research. They felt very strongly that setting up parallel ‘research specific’ systems was risky because they might not properly respond to the situation in informal settlements.
For example, representatives from the Federation for Urban and Rural Poor (FEDURP) believed members who are community mobilisers would be good at raising awareness and explaining the purpose of the research. However, communities didn’t always think these community mobilisers were ‘trustworthy’. As a result, other FEDURP members – who are passionate about accountability and health – might be better at data collection or facilitation. These passionate change makers need to be identified by community members as opposed to being handpicked by powerful community members. We discussed how incentives can compromise organic processes to identify change makers and should only be offered later in the research process. Therefore, the process of selecting co-researchers was systematic, trying to select the best from FEDURP, community representatives and community mobilizers. Selection was based on skills such as facilitation, mobilization, community activism and awareness raising skills, particularly on health.
Defining researchers, co-researchers and participants
FEDURP felt part of the ARISE research consortium, particularly as they had been part of the original consortium planning process. They were confused about whether this made them co-researchers or researchers. FEDURP is a representative organisation for people living in informal settlements. Does this immediately make all its members co-researchers? If FEDURP is a core-part of the ARISE family, should all co-researchers in Sierra Leone be members of FEDURP? Members of FEDURP, who also live in informal settlements, became further confused when they considered that they could also be ‘participants’ in the research process.
As we moved through our conversations it became clear that co-researchers should not be considered a uniform group with a ‘one-size fits all’ definition for their engagement, roles and responsibilities. Community members and organisations might move through different positions/spaces of participation in a fluid way. Co-researchers and researchers must develop trust with each other, the process cannot be forced or pre-designed, rather organically developed alongside the research.
How to facilitate the engagement of marginalised groups
Pre-existing community platforms for engaging co-researchers are unquestionably valuable to a new research project like ARISE. However, we want to ensure that marginalised or vulnerable community members are equitable participants in the process. These people may be less able to participate in pre-existing community development and advocacy. So, we will need to look for new ways of engaging to make the process inclusive.
We have been grappling with the dilemma of what to do when marginalised groups are disempowered and as a result unable to participate as co-researchers. Co-researchers – who have local knowledge on what is feasible and acceptable – could adapt participatory methods to better engage marginalised groups. Getting a better understanding of how marginalised groups like to communicate (e.g. through storytelling, drama, drawing pictures) and working with them to create outputs may help them feel more empowered. Informal discussions and ethnographic observation – interacting with marginalised groups in their own settings – might spark ideas. We also considered using ‘gatekeepers’ (or powerful people or institutions who provide an entry point to marginalised communities). For example, disabled persons organisations will usually know how to communicate with their constituency and support their participation.
Working with children and young people
Children and adolescents in urban informal spaces are often vulnerable to ill-health and have difficulty accessing accountability. However, we are concerned about how to ensure that we have a clear process of consent for their engagement in the research. Often children do not have a parent or guardian that can agree to their participation. We must strike a balance between the democratic principles of participation and empowerment and the ethical challenges of appropriate management, support and protection. Collaborative projects with young people are key to understanding their experiences of health and well being. But young people are often excluded from, or left out of, research projects.
Other marginalised groups
People with cognitive or intellectual disabilities may not be able to provide consent through conventional processes and we will need to account for this in the way we work. Sex workers and LGBT people may not want to be involved because they don’t want to be identified. These groups might be reached through community agents who have connections with them. We will continue to explore this ongoing dilemma during our research.
How to minimise risk and harm
We want to ensure our work is ethical and that people are safe. Community members and co-researchers might be put at risk if: tensions arise about the choice of co-researchers; communities are hostile to data collectors; or the findings of the research cause ructions.
Our discussions have thrown up a number of strategies to mitigate risk. We will involve communities in selection of co-researchers. That way they have ownership over the process and are more likely to support the research. We will try and be open and transparent in our working practices – communicating our intentions and the process. Research teams will keep an open dialogue going to keep abreast of emerging risks. It is important that ethics and safety are central to researcher training on participatory methods. They will be are aware of the boundaries of their role as researchers and put the safety and wellbeing of communities first.
Concluding reflections on participatory research
As ARISE is rolled out, we are thinking critically about power and participation. What does this mean in practice and in terms of generating equitable research partnerships? We are particularly keen to disrupt the balance of power between ‘researchers’ and the ‘researched’. Working through ethical dilemmas together and documenting this process will help us to learn and share with the wider research community.
There is no single blueprint for participatory research. It is a process rather than a set of uniform steps with predictable outcomes. Because we all come from different starting points, we have created an internal community of practice to exchange ideas.
We welcome, through the comments below this blog, insights from others who have experienced similar dilemmas.
Credits
This post was written by Kim Ozano, Abu Conteh, Laura Dean and Kate Hawkins and first appeared on the ARISE website.
“We live in a rapidly changing world where it is difficult to keep up. Sexual and reproductive health needs, desires, expectations, and pressures are part of this.” –Sabina Faiz Rashid, Dean, BRAC JPGSPH
From the 30-31 January I was lucky to attend the BRAC James P Grant School of Public Health (JPGSPH) Gender and Sexual Reproductive Health Conference for Young Adults 2018. The first day had a focus on young people (and over 700 university students participated) and on the second day the dialogue was with practitioners. This was a fantastic opportunity to not only hear about cutting-edge research for Bangladesh but also engage in a dialogue with researchers and civil society leaders from the region. It is very rare that I get to hear the views of young people, unmediated by a scholar or a journalist and I very much appreciated their inputs, and their insights into the issues that matter most in sexual and reproductive health and rights (SRHR).
It is hard to do justice to a conference with such riches of ideas. Here are six of the conference themes that stood out for me.
1. We need to better acknowledge the agency and power of young people.
Maheen Sultan, who is leading the Centre for Gender and Social Transformation at BRAC Institute of Governance and Development (BIGD), pointed out that today’s adolescents increasingly see themselves as people with agency and a voice. It is beholden on public health practitioners to accept this and listen and learn from younger people in the organisation of services and interventions. As one speaker pointed out, young people talk about desire, emotion, sexual orientation, pornography, and drugs but we don’t engage with them on this. There is no space to talk about the issues that they find pertinent, there is just silence. Luckily the conference bucked this trend.
There was a fascinating insight into young people’s agency in the presentation by Seama Mowri, project coordinator at JPGSPH, on early and child marriage in Bangladesh and how it can be addressed. Early marriage is occurring in urban slums which are in a period of transition (with Dhaka on its way to becoming the sixth largest mega-city by 2030). Young people live with insecurity in the forms of the risk of eviction, fragmented families, and criminality. It is within this environment that they navigate narrow and difficult choices. Mowri’s interviews with 130 young people and other stakeholders found that the average age of marriage was 15-16 years and that love relationships were losing their taboo status. In a context where many young people had access to a mobile device, the older generation were increasingly concerned that this form of communication was leading to clandestine relationships and elopement. We heard that sometimes adolescents blackmailed other young people or their parents into agreeing to early marriage, threatening to run away or commit suicide if their desires weren’t fulfilled. Within marriages the majority of married girls wanted to delay pregnancy and took responsibility for contraception even if their husband did not (and sometimes kept it a secret from husband and in-laws). Furthermore, remaining single and entering the world of work was not necessarily considered empowering. Young working women talked of the need for protections against assault and harassment. This evidence was refreshing as it did not rely on stereotypes about young people’s lives. It demonstrated the agency of young women living in difficult situations. Interventions to halt or reduce early marriage are unlikely to succeed unless they take these women’s views and life experiences into account.
2. Intersectionality matters.
A strong message from the conference was that we need more discussions of intersectionality and we need to purposefully integrate this analysis into our research and programming. Commenting on a session on mainstreaming sexual and reproductive health education, disability rights activist Anita Ghai lamented the ways in which people with disabilities were excluded from the narrative and the interventions that follow from it. For example, when talking about menstruation how often do educators talk about the forced hysterectomies performed on disabled girls because their menstruation is too ‘difficult to manage’? Or their sterilisation because parents don’t want their daughters to get pregnant? Sabina Faiz Rashid suggested that ‘inclusion’ is often performed in a very tokenistic way, “We cut and paste and replicate, we borrow. If we get compliant and complacent and we don’t look at the heart level about who we are leaving out and what we are uncomfortable with we will lose out.” If sexuality education truly informs young people and empowers them to take control of their lives, as Chief of Health at UNFPA Bangladesh, Sathyanarayanan Doraiswamy argued, we need to ensure that it is sensitive and responsive to all young people not just some imagined norm.
Intersectionality analysis matters when it comes to tackling harmful conceptions of masculinity too. Speaking on masculinities as a social construct, Anand Pawar, Executive Director of SAMYAK, argued that it is not enough for men to simply learn the language of gender equality without embodying these principles. He asked, “What if a gender sensitive man is Islamophobic or racist? Is this enough, if they are not working on power more generally?” There was a strong theme within the conference which stressed the need for a holistic analysis of vulnerability and privilege in sexual and reproductive health education and the way that simultaneous structural power relations shape this.
3. Race and colourism should be part of the conversation.
“When I was I in ninth grade and relatives would visit they would ask if I was actually my parents daughter because my skin is not fair like my brothers and sisters.” –Audience member
“I am dark skinned, and I am obese and our society always wants to point it out and judge. But I have a supportive family and I am really happy how I am.” –Audience member
We heard a fascinating talk by Azra Mahmood, one of Bangladesh’s top models, who experienced discrimination on the grounds of her darker skin and overcame these notions of beauty to have a successful career and found her own modelling agency.
She encouraged us all to take personal action to end bullying and discrimination based on society’s beauty standards and to use social media to spread the message.
There sometimes appears to be a reluctance among public health practitioners to talk freely about race and its impact on health and wellbeing – despite the ever-broadening evidence base that racial discrimination leads to psychological and physical ill-health the results of which can pass through generations.
4. Re-writing the masculinity script.
There were a few sessions at the conference that addressed what it is to be a man and how we define masculinity. Adnan Hossain’s presentation was a good reminder that there are many forms of masculinity, but some are hegemonic and others subaltern and there is a tendency to make a hierarchy of them. In Bangladesh, as in all other settings, notions of masculinity are historically dependent underpinned by a governing logic which stems from framings formed in colonial times, the war of liberation and in recent years related to economic growth.
We heard how normative ideas of masculinity tends to begin by constructing men in relation to their biology and social rituals such as heterosexual marriage and being an economic provider. Deviating from these norms can come with health and other costs and vulnerabilities. These issues are compounded for people who are non-binary, gay, bisexual and transgender. Adherence to these norms can also be unhealthy leading to self-neglect, poor health care seeking and underpinning gender-based violence against women, children, weaker men and non-binary people.
Drawing on his research of risky sexual behaviour and masculinity in Dhaka slums, Arifur Rahman painted a picture of a community of young men who were mostly sexually active before the age of 18 and had easy access to various types of illegal drugs. While many were having sex with girlfriends and with sex workers about half said that they were not satisfied with their sexual life. For some it went against social and religious norms and was shameful. Others felt it was unsafe. While they understood that using a condom and other forms of contraception was desirable they didn’t like buying condoms from the local pharmacy for privacy reasons, felt uncomfortable using them or had a lack of knowledge about them. A lack of privacy to have sex was also cited as a source of discomfort and vulnerability in this crowded urban space. The research uncovered tensions around their masculinity with concerns about sexual function and performance, such as premature ejaculation, about their ability to live up to financial expectations. Despite having girlfriends, they had conservative ideas about women’s dress and a victim blaming attitude towards harassment and assault. The majority said that if a woman doesn’t obey her husband then she deserves a beating, others said we should talk, others said that if it is extreme they should file for divorce.
In terms of efforts to challenge harmful masculinities, Sharful Islam Khan provided a wonderful case study from his anthropological studies with icddr,b arguing that global norms around masculinity are tied to notions of money, power and politics and privilege physical strength and toughness. These norms are reinforced by popular messaging, such as in the media. Anand Pawar argued that we need to create intervention with politicians, religious leaders and other powerful people who are creating the notion of manhood rather than only focusing on poor men. And we need to talk about market constructed norms of masculinity and the influence that they have.
Wangda Dorji, the 88th person in Bhutan to be diagnosed HIV positive along with his wife.
5. Mental and physical health go hand-in-hand.
“When I had my diagnosis, I was more afraid people would know my HIV status than my fear of dying. At the weekend I would go into nature and close my eyes and contemplate that we all share the same universal consciousness. We all go through sadness, happiness… Now I only think about HIV when I take my medication at night. At other times, I don’t [care] about HIV.” –Wangda Dorji
“It is ok to hurt, and it is ok not to be ok.” –Onaiza Owais
Some sessions at the conference highlighted the importance of mental health to young people’s wellbeing more generally. Ms Onaiza Owais reflected on her own experiences of depression during university, seeking psychological assistance and medication and how finding a peer group who she could talk with in a safe space led her to use her experiences in assisting others facing similar challenges. Shila Rashid presented on eating disorders and how these are gendered and shaped by family, society, religion and our own perceptions. The way that mental and physical health are intertwined came through in their presentations, and that of Wangda Dorji, reminding delegates of the importance of seeing sexual and reproductive health in a complete way.
Azra Mahmood (Right) and Anita Ghai (Left), who shared a book published in collaboration with BRAC JPGSPH on sexuality and disability titled “Untold Desires” during her panel session.
6. A focus on disability
“In normative society there is a conspiracy of silence about the sexuality of people with disabilities. It is thought that you are either asexual or hypersexual and not prioritised even among advocates for disability rights.” –Anita Ghai
The conference had a strong focus on disability not just in terms of exclusion (how disabled people are infantilised and their needs, desires and inputs are considered unimportant) but also on disability as a knowledge systems which can provide vital insights for those working on sexual and reproductive health. We learned how disability is heterogenous – India has 21 different categories of disability – if we were to build our sexual and reproductive health education system around catering to all students regardless of (dis)ability it would provide a more imaginative starting point for our discussions of love, sex and romance.
What next?
At the conference we heard from a range of implementing organisations about how they were responding to some of the contemporary challenges raised above.
Debarati Halder gave an overview of the subject of cyber-bullying, a more common phenomenon as rates of internet use and connectivity are rising. This has implications for regulation of online spaces but also young people’s self-image and mental health. Others spoke of the rise in young people accessing information about sexual and reproductive health online in lieu of decent sex education. Pornography is readily available in Bangladesh and is one way that young people learn about their bodies and sexuality. In this there is a challenge in distinguishing accurate from inaccurate information. One young person explicitly asked how young people can navigate ‘fake news’ online.
To provide accurate information we heard that initiatives like Digital Sister for Urban Youth are creating platforms which seek to understand how urban youth access sexual and reproductive health information and develop communication tools to meet their needs. Interestingly, the Digital Sister project had feedback from young people that they should also spread messages through offline channels. Young people were concerned that their parents had insufficient access to information and inaccurate beliefs and that online sources would not meet their needs. This speaks to the need to integrate online and offline spaces in ways which are targeted to the needs of users.
Echoing Jeroen Steeghs’s speech at the conference, it is important that implementers take these issues on board and do not leave them to parents, many of whom are ill equipped and lack information, to deal with. Adolescents have sexual needs, fall in love and feel attraction, explore and develop their sexual identity. They often have to navigate incorrect and distorted sources of information in the process, including from censored or abstinence-based sexual and reproductive health education in schools. More guidance is becoming available on sexual and reproductive health programming and sexuality education such as the recent UNESCO publication on international best practices. However, despite overwhelming evidence that comprehensive sexuality education works there are barriers to its implementation such as the embarrassment of teachers and parents in taking this forward. Similarly, existing legal frameworks can simultaneously protect young people from abuse while constraining access to information and justice, and these need to be critically considered.
Comprehensive sexuality and sexual and reproductive health education prepares and empowers young people to take control and make informed decisions. It can be transformative – and help to build a fair and equitable society by overcoming issues like colourism, sexism, homophobia, ableism, sizeism, marriage normativity and other forms of discriminatory practice. It is the responsibility of those working on policy and interventions to take the concerns of young people seriously and ensure that they are at the forefront of shaping the response.
This blog was written by Kate Hawkins, Pamoja Communications Ltd/REACHOUT Consortium.
The Gender and SRH Conference for Young Adults 2018 was funded by NUFFIC and implemented through a partnership between BRAC JPGSPH, RHSTEP and NIPORT.
