1. Funding agencies |
a) Consider requiring research proposals to outline
plans (e.g., within the recruitment and retention section of NIH grant
applications) and associated estimated expenses for overcoming logistical
barriers, with budgets and strategies tailored to the needs of each study and
local circumstances; such plans can help ensure consistency and equitability of
supports across participants and study sites, and identification of
study-specific “logistical barriers” should be part of the study planning and
budgeting processes. |
b) Consider requiring involvement in research of
appropriate stakeholders as advisors and partners to increase the likelihood of
tailoring the research protocols to account for the needs of the study
population. |
2. Research institutions |
a) Have policies in place regarding research-related
transportation, childcare, lodging, and meals; such policies are critical for
safe, equitable research conduct and access. |
b) For research-related transportation, these policies
should outline personal injury and liability coverage details to ensure that
research personnel or approved volunteers do not (unknowingly) expose themselves
and the study to the risks of personal injury/liability-related costs, for
example, when driving research participants, especially when participant
transportation requires providing and/or installing car seats for children. |
c) Regarding childcare, these policies should specify
who can offer childcare support, and the way this support can be provided,
following appropriate laws/regulations; the liability coverage should be
clarified upfront for the study personnel or volunteers who assist with
childcare. Institutions can further support child safety by offering or
facilitating “certificate programsʼʼ specifically designed for individuals
interacting with children in research settings. |
d) Consider establishing institutional-level
arrangements / agreements with service providers (e.g., taxi, rideshare, car
rental companies, hotels, restaurants, childcare centers, or providers) to
reduce burden otherwise placed on individual research teams, and promote
participant/staff safety, and institutional-level regulatory compliance. |
e) Support a diverse menu of reimbursement options to
research participants (such as gift cards from different vendors, checks, cash,
or debit cards, e.g., ClinCard) and offering upfront (rather than retrospective)
reimbursements to reduce the risk of unintentional discrimination against and
deterrence of certain populations from research engagement; for example, the
need for providing a social security number or detailed personal information,
proficiency with/access to online transactions, or the need to pay first then be
reimbursed can negatively affect participation by groups historically
underrepresented in research. |
f) Consider providing research space tailored to
child, family, and community needs (e.g., child/family-friendly research room;
additional room appropriate for child play; private space for breastfeeding) in
order to promote equitable research engagement. |
3. Research teams |
a) Ensure the approach for addressing logistical
barriers is consistent with the institutional/local and funding agency policies
and regulations, and IRB-approved. |
b) Offer an upfront coverage (from the research funds)
of expenses related to logistical barriers, rather than requesting participants
to pay out-of-pocket first, before providing a retrospective reimbursement; not
all participants/families can afford upfront expenses. |
c) Offer assistance with transportation, childcare,
lodging, or snack/meal to all (prospective and current) participants, especially
during in-person study visits. Training of the research staff in
universally-offering these services and conveying related messages in a
non-judgmental way is vital; scripting of such communication and trauma-informed
training can be useful. This universal approach may increase the study cost in
the short term, but the benefit to the rigor of the scientific work merits this
investment; these expenses, covered from research funds, should be carefully
monitored and inform future research considerations. The universal assistance
approach can help “normalize” the use of support services, and reduce
stigmatization and stereotyping of certain groups of participants, helping
counter the negative perspective many community members from historically
underrepresented groups may have of researchers and research studies. In
addition, many individuals do not feel comfortable asking for help and would
rather miss a study visit than ask directly for assistance. |
d) When hiring research personnel, studies should
convey upfront if there is a need for staff’s availability during nontraditional
work hours in order to meet participant scheduling needs, and consider equitable
compensation for the variability and unpredictability of the study personnel
schedules that the study might require. |
e) Hiring a study navigator (e.g., recovery peer
support specialist or other support professional with lived experience relevant
to the study population) as a research team member could be beneficial for
addressing participant needs and increasing recruitment and retention as some
participants may be more open and comfortable with “peers” than the
“traditional” research staff. |
4. Transportation |
a) Researchers should consider transportation barriers
and strive to provide transportation or alternative methods of study
participation (e.g., virtual) to those unable to complete in-person visits. For
example, providing gas-vouchers (or other forms of financial support to offset
fuel cost) upfront, prior to the study visit, can promote visit attendance,
supporting participants from lower-resourced communities. |
b) Study protocols should describe permitted versus
unpermitted modes/types of transportation (e.g., taxi, rideshare services,
etc.), and the conditions under which research personnel or approved volunteers
can drive participants to/from the research site or drive to meet participants
at participant-preferred locations, following institutional policies and
IRB-approved plans. |
5. Childcare |
a) Researchers should consider potential
childcare-related barriers and their impact on participant research engagement
for both in-person and remote study visits, and make childcare accessible, so
that everyone can participate in research; this includes arrangements for
offering upfront financial support for at-home childcare. |
|
b) Individuals involved in childcare assistance should
complete child abuse-related training to reduce the risk of child abuse/neglect,
and ensure child safety and compliance with child abuse reporting mandates, and
receive “clearance” based on their criminal background check prior to being
involved in childcare activities. |
c) Childcare services delivered by providers hired or
contracted specifically for this task should be institutionally approved, with
proper agreements in place. If offering “ecological support” to the
parents/caregivers at the study site, the protocol should outline who (e.g.,
study personnel, volunteers), where (i.e., on site versus not) and how (e.g.,
what is allowed versus not, e.g., the need for at least two people to be always
present? who can change diapers?) will assist parents/caregivers with childcare,
and what training requirements these individuals need to satisfy. |
6. Overnight lodging |
a) Lodging should be offered to all study
participants, especially when research procedures are lengthy or conducted later
in the evening. |
b) Selection of overnight lodging options should be
aligned with the needs of participants and their accompanying families (e.g.,
proximity to research site; room(s) large enough to support a family unit) and
the institutional requirements regarding approved costs for lodging in the area;
although institutions may have preferred vendors who meet the approved cost
criteria, alternative lodging options should be considered if the “standard”
approved ones are less convenient for participants and/or their families.
Planning these arrangements in advance can reduce the burden of adding a new
vendor. |
7. Snacks/meals |
a) Snacks/meals to support research participants and
their families may be necessary, especially during longer visits. Cost of
snacks/meals may be regulated both by institutional and federal policies, and
should be considered when developing study-specific plans. |
b) A healthy snack should be offered during all
in-person visits; recording participant preferences and offering a “preferred
snack” may be particularly appreciated by participants and their families,
especially for those with dietary or allergy considerations. A full meal should
be considered for longer visits or visits during traditional meal times (e.g.,
breakfast, lunch, or dinner). |
c) Children and pregnant or lactating persons may
require more frequent or particular snacks/meals than other groups. Being
mindful of individual needs is especially important when research participants
receive vouchers to eat in nearby restaurants, which may not have appropriate
snacks/food; arranging for alternative snack/meal options/locations can help
meet participant needs and support research engagement. Engaging a nutritionist
or dietician to advise on appropriate healthy foods can be helpful. |