Written by: Kristin Thorp
Depressive disorders are common among youth and young adults. In the United States, one in five youth will experience a mental health challenge. Unfortunately, many young people don’t have access to developmentally appropriate and culturally responsive care. At Youth MOVE National (YMN) we believe that young people should be actively involved in designing the systems and programs that serve them. As recipients of mental health services, youth are in the best position to identify what is working well, and what aspects of mental healthcare might need improving. There are many ways youth can be involved, including analyzing their community network, resources, services, and environment and providing feedback on what is helpful, and what is harmful.
In 2020, YMN partnered with the National Committee for Quality Assurance (NCQA) and New York University (NYU) to solicit input from young people with experience receiving treatment for depression during adolescence. To do this, we adapted the “What Helps, What Harms” framework to conduct a nationwide survey. What Helps, What Harms (WHWH) is a facilitated discussion framework for gathering feedback from young adults who have been involved in youth surveying systems. WHWH is based on two fundamental questions: 1) What is helpful, and 2) What is harmful? These simple questions are applicable across systems and produce concrete recommendations for positive change and systems improvement. For this project, the WHWH approach was adapted to a survey format to allow for broader reach and provide participants anonymity to share potentially sensitive information. There were two primary objectives of the survey: 1) To understand youth experiences receiving depression care, including their preferences and barriers to care; and 2) to identify strategies and approaches for improving youth engagement in behavioral healthcare.
The survey explored various aspects of depression care including:
- Who youth reach out to when they’re first feeling symptoms of depression;
- Who youth get professional help from;
- What kind of depression care or treatment youth receive;
- What types of support youth are offered once they are accessing treatment;
- What resources youth access outside of professional support to manage depression symptoms;
- What barriers youth experience in accessing care and;
- How the healthcare system can better support youth during COVID-19
Findings from the survey reinforce much of what we already know- young people want access to person-centered care that is individualized and doesn’t pathologize them. Youth want providers to see them as complex humans and not just a set of symptoms to be treated. Respondents also indicated that mental health literacy is critical in understanding depression and making treatment decisions. For example, several participants indicated that learning the skills to advocate and navigate the mental health system is needed in order for youth to play an active role in their care. Many respondents indicated that having a space to talk- whether with a therapist or youth peer support provider- was an important aspect of managing their depression. And while some felt medications are a beneficial aspect of treatment, many indicated that they felt overmedication is a problem. Unsurprisingly, barriers to care were a common theme, with 33% of respondents indicating that stigma or fear of getting treatment is an issue. Additionally, lack of information, logistical issues such as challenges with scheduling and transportation, and concerns around confidentiality, among others, were identified as reasons for not accessing depression treatment. In addition to identifying what works well and not so well in depression treatment, participants were also able to provide recommendations for improving mental health care. In general, increased access to care, including providers, youth peer support, and treatment approaches that increase self-efficacy, policy change, and improved outreach and education arose. As individuals directly impacted by youth-serving systems, young people have a right to participate in decisions that impact them and to create effective and inclusive policies, programs, and systems. For systems to achieve optimal performance and support of youth, they must actively engage youth in the design, implementation, and evaluation of programs. If you’d like to learn more about best practices for youth engagement, fill out a TA Request Form– Youth MOVE is here to help!