Healing Families: Parental Involvement in the Treatment of Low-Income Teens Diagnosed with a Mood Disorder

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In 2016, Families for Depression Awareness (FFDA) was the recipient of the Tier I “Pipeline to Proposal” Award from the Patient-Centered Outcomes Research Institute (PCORI). This award supported our project, “Healing Families: Parental Involvement in the Treatment of Low-Income Teens Diagnosed with a Mood Disorder.” Our application to continue to Tier II of the Pipeline to Proposal process was accepted in summer 2017.

The Pipeline to Proposal Awards provide seed money to encourage patients, caregivers, and other stakeholders to actively help to shape the research priorities that most matter to them. Through our project, FFDA will work with Metro Boston teens, parents, and communities to identify the barriers to parental involvement when teens are diagnosed with a mood disorder. Our Tier I activities included forming an advisory council, holding community meetings, providing training on comparative-effectiveness research, and discussing preliminary CER questions.

Building upon the successful foundation that we established in Tier I, our Tier II efforts focus on gaining additional input from a broader swath of patients, parents, providers, and other stakeholders. Through expanded partnerships and significant engagement beyond our advisory council, we’ll gather input to determine, of two choices, which specific intervention works better to maximize parental involvement in the treatment of low-income teens diagnosed with a mood disorder.

More about PCORI

Pipeline to Proposal Awards enable individuals and groups that are not typically involved in clinical research to develop the means to develop community-led funding proposals focused on patient-centered comparative effectiveness research (CER). Established by the non-profit PCORI, the program funds three tiers of awards that help individuals or groups build community partnerships, develop research capacity, and hone a comparative effectiveness research question that could become the basis of a research funding proposal to submit to PCORI or other health research funders.

“The Pipeline to Proposal Awards program is a manifestation of PCORI’s commitment to the meaningful involvement of patients, caregivers, clinicians, and other stakeholders in all our research endeavors,” said Jean Slutsky, PA, MSPH, PCORI’s Chief Engagement and Dissemination Officer. “It provides support to those who may not otherwise have an opportunity to contribute to the field of comparative effectiveness research. We’re pleased to follow the awardees’ progress as they develop partnerships and begin to form research questions.”

PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.

More about comparative-effectiveness research

Comparative Effectiveness Research (CER)—The direct comparison of two or more existing healthcare interventions to determine which interventions work best for which patients and which interventions pose the greatest benefits and harms. The core question of CER is which treatment works best, for whom, and under what circumstances. Read more about PCORI and CER.”

Read our Tier II project abstract

Depression, the cause of more than two-thirds of reported suicides in the U.S., is an epidemic affecting millions of teenagers. According to the 2015 Health and Risk Behaviors of Massachusetts Youth, 27% of high school students experienced depression symptoms. While mental healthcare is generally difficult to access, teens from low-income families face additional challenges in receiving education, treatment, and support around mood disorders, such as fewer choices for local and/or culturally-appropriate care, limited school resources for student mental health, and stymied parental involvement. Depressed teens who communicate their feelings to and receive support from their parents are more likely to understand and accept treatment. Without parental support, teens with a mood disorder can remain undiagnosed, under- or poorly treated, and at higher risk for suicide.

Building upon the successful foundation that we established in Tier I, our Tier II efforts focus on gaining additional input from a broader swath of patients, parents, providers, and other stakeholders. Through expanded partnerships and significant engagement beyond our advisory council, we’ll gather input to determine the most appropriate CER question to get to the heart of the issue: which specific intervention works best to maximize parental involvement in the treatment of low-income teens diagnosed with a mood disorder.

Read our Tier I final report

Download our Tier I final report here.

IS THERE A TEEN WITH DEPRESSION OR BIPOLAR DISORDER IN YOUR FAMILY?

We’re talking with parents and teens – and people who work with parents and/or teens – to find out more about parent involvement in care for teens with depression or bipolar disorder.

Your experience can help our work to make treatment more accessible, affordable, and useful for families. If you are interested in participating in this project, email info@familyaware.org.

We’re looking for people whose income qualifies them for programs such as SNAP, WIC, MassHealth, Head Start, public housing, or tenant vouchers.

We value participation by people of color, people with disabilities, people who are LGBTQ, non-English speakers, single parents, and others with relevant experience.