Marginalized communities are those excluded from mainstream social, economic, educational,
and/or cultural life. Examples of marginalized populations include, but are not limited
to, groups excluded due to race, gender identity, sexual orientation, age, physical
ability, language, and/or immigration status. Marginalization occurs due to unequal
power relationships between social groups .
Conducting research in partnership with marginalized groups has inherent challenges.
Traditional academic research can reenact and reinforce stigma and power imbalances,
even if inadvertently, and marginalization itself can limit the ability of certain
groups to participate meaningfully in research [2, 3]. The recent outbreak of SARS-CoV-2,
the virus that causes COVID-19, has caused massive disruptions in the lives of people
all over the globe, and has brought research focused on addressing health inequities,
such as HIV, largely to a halt.
Further, the pandemic and the related shutdown of many systems, including community-based
clinics, resources, and support services, is further exacerbating the experience of
marginalization for many communities . In transgender and gender diverse communities
within which our team works, we are seeing this play out in our reduced ability to
sustain connection with our research participants and maintain continuity of our research
Technological Challenges to Conducting Research Online with Marginalized Communities
Due to longstanding political, economic, educational, and employment marginalization,
many in our communities do not have access to the technology and/or technological
skills needed to be able to participate in online research . It has previously
been documented that online research and eHealth approaches are less likely to reach
more marginalized populations, such as people of color, homeless people, and LGBTQ
youth [6, 7].
Due to economic marginalization, many in our communities do not have consistent access
to smartphones or computers . They may have their phone service or internet access
repeatedly interrupted due to inability to pay bills. Reaching marginalized people
via the internet, email, or social media is often intermittent at best, impossible
Even among those who may have access to the internet and a smartphone or computer,
due to educational marginalization, many in our communities do not have the technological
skills needed to navigate online studies, sign electronic documents, or read and respond
to self-administered surveys . As we attempt to reconvene our peer-delivered intervention
groups and individual sessions, we are finding that our participants have very little,
if any, familiarity with applications such as Zoom, and require extensive technical
assistance to install, set up, register for, and use these programs. Video conferencing
applications they may be familiar with, such as Facebook Messenger, have only recently
been made allowable platforms for telehealth purposes due to security issues .
Challenges to Reimbursing Participants from Economically Marginalized Communities
The immediate financial support that research incentives provide are often extremely
helpful for people in our communities. Due to employment marginalization, many of
our participants are not eligible for programs such as unemployment insurance benefits
or the new Pandemic Unemployment Assistance program. Competing priorities, such as
food insecurity, that have always been a barrier to conducting research with marginalized
populations, are magnified by the current disruption to usual support services .
Even if we are able to reach participants and complete research activities with them
online, reimbursing them for their participation is a serious barrier. Institutional
barriers prevent us from paying our participants via Venmo or PayPal. Further, many
participants in our studies do not have bank accounts, and thus cannot set up accounts
with PayPal or Venmo for receiving funds. Further, using these apps requires someone
from the research team to transfer personal funds in order to work around institutional
barriers to using these solutions. While applications like CashApp do not require
the recipient to have a bank account, the lack of technological skills can prevent
people from registering.
Electronic gift cards, which have become popularized in online research due to their
convenience for researchers , are often not useful to our participants. Electronic
gift cards do not permit our participants to access the resources they may need most,
such as food or more immediate survival needs from vendors that require cash. Many
people do not have a safe place to receive packages from online vendors, such as Amazon.
Our community members, many of whom live in shelters, single resident occupancy hotels
(SROs), and other congregate living situations , commonly experience theft of
their mail and belongings.
Challenges to Safety
Marginalized communities are more susceptible to COVID-19 for multiple reasons .
Many of our participants are living in conditions where they are unable to follow
COVID-19 public health and safety recommendations during this pandemic. Community
members who live in shelters and SROs report living in unclean facilities, not having
access to cleaning supplies, and not being able to properly physically distance from
their neighbors. Many SROs have shared bathrooms, with multiple doors to touch between
one’s own room and the bathroom, and some personal rooms do not have sinks for handwashing.
In addition to jeopardizing their physical health, these shared living situations
often make participating in research nearly impossible, since there is limited privacy
in which to respond to sensitive research questions .
Those in our communities who engage in survival sex work are continuing to do so out
of necessity, even as the inherent dangers in this work are increasing . Many
people in our communities report that sex work is currently a booming business, as
clients experiencing stress and social isolation seek out services. Still, there have
been reports of sex work clients who are desperate for money physically attacking
and robbing sex workers.
Finally, the mental health impact of this pandemic and its effects are likely to disproportionately
affect marginalized communities . Among our transgender and gender diverse staff
and participants, delays in gender-affirming treatment, such as hormone injections
and surgeries, due to the shutdown of clinics and delays in “elective” surgeries,
can cause serious mental health issues, including depression, anxiety, and suicidality
. Further, social isolation due to physical distancing mandates can make it even
more difficult to cope . Many people in our communities rely on regular in-person
support groups to cope with ongoing mental health issues and are unable to access
online resources for the reasons outlined above.
Possible Ways Forward
While we at the Center of Excellence for Transgender Health are still experimenting
with ways of reaching, engaging, and supporting marginalized research participants,
we have been exploring possible ways forward.
Collaborations with Community-Based Agencies Providing Emergency Services
Some agencies and advocacy groups are distributing food and other emergency supplies
safely within the community. By collaborating with these agencies and groups, we may
be able to reconnect with our participants, or get reimbursements for participation
to people we would not otherwise be able to connect with in-person. These collaborations
rely upon existing relationships with our community partners and can be time intensive
. This also requires our team to consistently identify and track resources and
determine how to communicate emergent information efficiently and effectively to participants.
Interviewer Administered Surveys via Phone Calls
For participants who cannot take surveys online due to lack of access to a computer
or the internet, or due to literacy issues, staff may call participants and administer
the survey over the phone. This takes a great deal of staff time, which can be difficult
in terms of staff energy and emotional resources . In addition, staff themselves
are often not experts with the technology and can similarly struggle with online surveys.
It also takes additional time to train staff to administer surveys to participants,
as this is a specific skill that takes time to develop.
Telehealth Delivery of Interventions
Interruptions to the delivery of interventions in the context of a clinical trial
can be especially difficult. While adapting the intervention to an online version
is critical to maintaining continuity of the research, doing so without time to undertake
proper adaptation and training procedures can create unexpected risks and burdens
. Using a secure online platform like Zoom often requires technical assistance,
as previously stated, and questions about privacy often arise when participants live
in shared spaces .
Community Capacity Building to Use Technology
We have successfully conducted some peer-led groups online with our participants via
Zoom. In some cases, this has required extensive capacity building, even within our
own team, to use the technology effectively. Supplemental funding to research projects
could assist with conducting more extensive capacity building within our communities,
which would also allow marginalized people to access other resources, such as informational
webinars, that they may not have previously had the skills to access.
Resource Mapping, Dissemination, and Referrals
As communities and local governments mobilize to create resources for vulnerable communities,
the need for assistance to successfully connect people to these resources has become
apparent. In our transgender and gender diverse communities, we have identified the
need to collect and map these resources, gather them into an accessible and updatable
format, and disseminate them among our participants as well as provide direct and
tailored referrals. To this end, the UCSF Center of Excellence for Transgender Health,
the UCSF Center for Sexual and Gender Minority Health, and the UCSF LGBT Resource
Center teamed up to present a Grand Rounds webinar on COVID-19 information and resources
specific to our communities.
Trauma-Informed Peer Support
Our front-line staff are interacting directly with people who are in crisis due to
exacerbated marginalization as a result of the pandemic. As a result, we have identified
the need for additional and ongoing trainings on the provision of trauma-informed
peer support for our communities, especially front-line staff .
Our front-line and supervisory staff are hyper aware of the immense needs in our communities
and are making every effort to help meet those needs. To that end, we are helping
to coordinate food bank pickups, no-contact grocery drop-off to participants without
transportation, delivering condoms and lube to participant residences, coordinating
with our collaborative partners to help support the many needs of our communities
and assisting our participants with applications to relevant funding sources. We are
also raising funds to directly provide monetary support to trans community members
who are struggling to pay their bills, prioritizing our monolingual Spanish-speaking,
undocumented and/or sex-working community members. Further, optimizing our ability
to continue our research activities can help to supplement income for our communities
In summary, there are new and intensified barriers to maintaining research continuity
with marginalized populations due to the global COVID-19 pandemic. It is critical
that research teams not only get creative about ways of reaching, engaging, and reimbursing
our participants during this crisis, but also find ways to come together with communities
to create, identify, and disseminate resources to those most in need. In order to
do this, we must receive robust support from our institutions and funders to meet
the needs of our participants, especially those from marginalized communities.