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Your Voice Matters: The Value of Participation in Research Studies

Beth Hess - Tuesday, November 21, 2017
Frequently, we share announcements about research studies that are seeking families with particular behavioral health experiences. Past examples include a study for parents of youth aged 18-25 who are using drugs or alcohol, and a study for young people aged 7-17 affected by major depressive episodes. A nominal stipend may be offered for participation in these studies, but the real benefit is the knowledge gained.

A few years ago, a research team, led by Gloria Reeves, MD, (Child and Adolescent Psychiatry Division, Department of Psychiatry, School of Medicine, University of Maryland), examined the impact of a family navigator model of helping families in the Family VOICE (Value of Information, Community Support and Experience) Study. The results of the study were published in the Journal of Nervous and Mental Disease, Volume 23, Number 12, December 2015.  

Researchers trained family members with lived experience caring for a child with mental health needs as family navigators.  Consumer stakeholders helped design the navigator model used in the study.  In the study:
  • The family navigator would initiate contact with a family
  • All contact would be by phone
  • Contact would be time-limited to 90 days
The target population would be families of Medicaid-insured youth on antipsychotic medications.

The study found three key things about family navigation:
  • The flexibility of navigators was important to helping families – the navigators’ availability included early morning, evening and week-end hours
  • Families of Medicaid-insured youth with mental health needs often had significant other needs, such as help with housing and food
  • Families were willing to disclose sensitive information to navigators who had shared lived experience, even though contact was only via telephone
The findings are extremely useful to support the premise that there is value in providing family navigation services to families caring for a child with mental health problems, and that the help required by families might be in a number of life domains. Findings like these provide policy-makers with knowledge to make better decisions.

If you or your child fit the profile of a research study recruitment effort, please consider participating. There may be great benefit to other children and families.

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