Conducting Family-Friendly Research – Tip Sheets and Resources

mom holding young child at research visit with EEG lab

Communicating with families

Use people-first language by referring to the person before referring to the disability or diagnosis; for example, “student with autism” instead of “autistic student.”
Use family-supportive language to acknowledge the different forms that family constellations can take.
Eliminate jargon by using familiar and understandable language; if you must use acronyms, be sure to explain what they mean.
When communicating with people with limited English proficiency, ensure that anything you would ask or tell an English-speaking family also is communicated; an interpreter may be required to communicate effectively. Good communication with these families is important because language differences may accompany significant cultural differences.

Make driving and parking directions available to families.
Communicate transportation options, perhaps offering bus/cab fare so that costs do not exclude families of lower socioeconomic status.
Offer flexible scheduling options to allow parents to work around their child’s nap and school schedules, or offer to come in the evenings or on weekends.

Consider how compensation motivates families differentially (race or socioeconomic status)
Communicate the compensation for research participation clearly. Tell families who will be compensated (the
child, the parent, or both?), when they will be compensated (immediately, or delayed?), and how they will be compensated (money, services, other?)
Offer monetary compensation that is the most beneficial for participating families. For some, cash is preferable to receiving a check.
Ensure that compensation is accessible and meaningful to participating families. For example, when using gift cards, make sure they are for stores that are geographically convenient and relevant for participating families.
If services are offered as compensation, clearly communicate what families will receive (e.g., advice, a formal consultation), and for how long.

Obtain permission to follow-up with families; although many will be open to further contact, their research participation does not obligate them further.
Ask families if they prefer to be contacted by phone, e-mail, or postal mail.
Answer the family’s questions following research participation; rather than setting the agenda for follow-up meetings, researchers should let the needs of families dictate the content of these meetings.
Connect families with resources and referrals for clinical assistance, support groups, and to other research projects.

Specify how a family will receive results before they participate in the research project. Communicate what they will receive (e.g. results of tests), and how they will receive this (in person or in writing).
Explain that the research team is not qualified to give diagnoses, and encourage families to meet with their primary care physicians or school counselors, as appropriate, to determine next steps.
Address privacy issues by asking for families’ consent before sharing any results; take care to disguise case studies to protect privacy.
Disseminate study findings to the community through newsletters and other media outlets, so that anonymous participants may access results.

Tip sheet content prepared by Megan Griffin, M.A.

[October 2010]