ACEs Deep Dives
Children’s Mental Health: Building Community for Parents and Caregivers
Children’s Mental Health
The challenges of the mental health care system
The systemic barriers to mental health support for children and youth are significant. Iowa faces both access and workforce challenges: many communities have few to no providers, and the current workforce cannot keep pace with demand. More than 1.8 million Iowans live in a community without sufficient mental health providers. These workforce challenges lead to reduced access and ultimately unmet needs. [1] Nationally, more than 20% of adolescents ages 12-17 report having an unmet mental health care need in the last 12 months. [2]
Parents and caregivers with children who have mental health concerns know all too well the challenges in Iowa’s mental health system. They are their child’s greatest advocates, persisting despite the slow pace of change. However, the perspectives of parents and caregivers within their peer groups and communities are often left out of discussions about children’s mental health.
While we continue to push for advancement of the children’s mental health systems, we also need to ensure our communities are supporting parents and caregivers of children with mental health concerns.
Iowans must ask what we can do right now, in our own communities.
The Experience of Parents and Caregivers
Parents and caregivers of children with complex medical needs or significant mental health needs have higher rates of anxiety, depression, and emotional distress than the general population.[3,4] Families also face stigma and social isolation.
Led by a parent advocate, parents and caregivers of youth under the age of 18 with mental health concerns were invited to participate in a roundtable discussion about their experience in communities. Many parents expressed it was a challenge to participate in person, so virtual opportunities and an open-ended survey were made available. While the number of participants was limited, consistent themes emerged across their responses.
Key Themes
The stigma surrounding mental health concerns is ever-present.
Parents and caregivers often internalize stigma and feel judged by their community—even blamed by providers— despite working hard to support and advocate for their child.
When families experience this stigma and judgement in their community, they are less likely to engage in community events or activities which can lead to reduced social connection and increased isolation. While experiences varied, parents and caregivers reflect that some friends and family do not remain connected.
The navigation of the mental health system and different types of services can be improved with peer support.
Parents and caregivers must frequently navigate complex and confusing systems with little support. Even when services exist, identifying the right type or level of care remains a challenge.
Parents would benefit from opportunities for peer support or navigation with other caregivers who have walked similar paths. This would also help build natural social connections and reduce isolation.
What You Can Do
Reduce Judgement, Increase Empathy
Addressing mental health stigma is the responsibility of all of us as individuals and as community members. Be supportive by providing a non-judgmental listening ear, offering validation, and resisting the urge to “fix” or problem solve. The next time a parent shares about their child’s struggles, respond with phrases such as “It sounds like this has been a very difficult experience. I’m here to support you.“
Increase Peer Support for Families
Establish formal or informal opportunities for peer support among parents and caregivers who are navigating the challenges of their child’s mental health care. This could include support groups led by trained parent peers, mentorship programs, or dedicated spaces (in clinics, schools, or nonprofits) where families can exchange resources and encouragement.
Build Community for ALL Families
Whether you are organizing a community event, leading a faith community, or planning youth or family activities, ensure all families feel welcome and understood. This includes adapting space and activities for families with varying needs in social settings.
References
1] NAMI-Iowa, Retrieved July 2025.
2] National Center for Health Statistics. Percentage of teens aged 12-17 years who had any unmet mental health care needs in the past 12 months, United States, July 2021-December 2023. National Health Interview Survey— Teen.
3] McLachlan, L & Yu, J. Family Caregivers of Children with Medical Complexity Report Elevated Levels of Emotional Distress (GP734), Journal of Pain and Symptom Management, Volume 63, Issue 6, 2022.
4] Farmer, E. M. Z., Burns, B. J., Angold, A., & Costello, E. J. (1997). Impact of Children’s Mental Health Problems on Families: Relationships with Service Use. Journal of Emotional and Behavioral Disorders, 5(4), 230-238. (Original work published 1997)
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