August 17, 2020

MyVoice study identifies barriers young people face in accessing adequate and respectful health care

A recent national survey of adolescents describes challenges and possible solutions to youth accessing primary care and identifies the need to create more patient-centered care that aligns with young people’s values and experiences.

image of melissa dejonckheere, Ph.D.
Melissa DeJonckheere, Ph.D., lead author

At an age when health care behaviors are established that could last a lifetime, many American adolescents and young adults say they feel disrespected by their primary care doctor. 

Researchers within the Department of Family Medicine and Community Health Services at Michigan Medicine conducted a national text message-based survey of more than 700 youth, ages 14 to 24. The study, in-press in the Journal of Adolescent Health, asked them to describe their experiences related to receiving primary care.

Led by Melissa DeJonckheere, Ph.D., assistant professor, the study found that this age population values having an established primary care provider but identified various barriers to receiving adequate and satisfying care, including:

  • Not being listened to or taken seriously by their primary care doctor.
  • Having difficulty finding a new provider and navigating care independently as they transitioned from pediatric to adult care.
  • Inconvenience when it came to making appointments. Youth desired a broad range of appointment times and the ability to schedule appointments online.
  • Long wait times during their scheduled appointments.
  • Limited appointments that work with their schedules, including weekend, online or telehealth appointments.

“All of these experiences are interlinked,” DeJonckheere said. “Youth described not being listened to. The physician wasn’t adequately hearing their concerns and they felt ignored or not taken seriously. When coupled with long wait times before seeing the physician or inconvenient hours, youth felt further disrespected and that their needs were not being met.”

The study was conducted as a part of MyVoice, an ongoing, open-ended text messaging survey of youth, which gathers perspectives from 14- to 24-year-olds on a variety of health and policy issues. A goal of the study is to elevate youth perspectives on health, health care care services, public policy, and current events. The MyVoice project is led by Tammy Chang, M.D., M.P.H., M.S., assistant professor.

More than a third of youth surveyed shared previous negative experiences in the health care system, such as perceived medical error or inappropriate care, misdiagnoses, painful procedures, and having to return for multiple visits. Those with negative experiences were more likely to be female, transgender or nonbinary. 

Participants also reported that primary care doctors sometimes ignored their symptoms, used stigmatizing or judgmental language, and were not equipped to provide the care that youth needed.

The study had the assistance of co-author Ellen Wagner, MPH, MS, director of the Adolescent Health Initiative (AHI) at Michigan Medicine. AHI’s goal is to change the health care landscape for adolescents and young adults and to train health care professionals to work with this patient population to best meet their health care needs.

Wagner said AHI considers adolescents a vulnerable population who are at greater risk for adverse health outcomes. Young people are at greater risk for contracting sexually transmitted infections like HPV. They also experience high rates of depression and anxiety. Adolescents also live with the potential risk of gun violence, as evidenced by numerous and fatal school shootings.

Young people who have other marginalized identities are at even greater risk for poor health outcomes, Wagner added. She mentioned that youth who are a part of the LGBTQ+ community or youth who experience racism are likely to experience additional obstacles to accessing health services.

“Adolescence is an important time to learn about accessing primary care,” she said. “It’s a pivotal moment in your life. It is therefore paramount that health professionals are placing particular emphasis on how to meet the needs of the most vulnerable adolescents.” 

AHI has supported various youth-serving health care organizations in over 40 states – from hospitals to school-based health care services – and has taught medical staff to be sensitive to the unique needs of adolescents. Youth require screening for various health conditions; want to learn about their options for contraception; are curious about what services they can access without parental knowledge or permission; and have questions about accessing mental health services.

Wagner said it’s critical for health care professionals, whether they are physicians, nurses, medical assistants, or those at the front desk, to ensure that adolescents have a positive health care experience. The study authors cited previous research that linked unmet health care needs in youth to worsening health outcomes in adulthood, such as functional impairment, decreased self-reported general health, depression and thoughts of suicide.

AHI works with health centers across the country through their evidence-based Adolescent Champion Model and Adolescent-Centered Environment Assessment Process. Additionally, AHI has created a suite of free resources health centers can use including several 20-minute Spark ready-to-use mini trainings to educate teams on how to make their services more youth friendly. AHI also has a Teen Advisory Council that provides input on health care experiences and has produced materials that help young people navigate the path from pediatric to adult care. 

DeJonckheere echoes Wagner’s assertion that adolescence is a critical time to get young people ready for the transition to adult care. 

“Because younger youth are still accessing primary care, it’s an ideal time to intervene and teach them about how to access care and how to take ownership of their health,” she said.  “Attitudes toward health and health care can be established during adolescence, and primary care physicians who are up to the challenge have the opportunity to truly impact the young people of today and the adults of the future.”

The paper’s co-authors include Aisling Zhao, M.D., MPH, Jenni Lane, M.A., Melissa A. Plegue, M.A., Lauren Ranalli, MPH, and Margaret Riley, M.D., all from the University of Michigan. 

Article Citation: Dejonckheere M, Zhao A, Lane J, et al. Results of a National Text Message Poll of Youth: Perspectives on Primary Care. Journal of Adolescent Health. 2020. doi:10.1016/j.jadohealth.2020.04.017.

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