Three Pilot Studies Advance Community Health
By Jill Pope, Senior Technical Writer & Editor
Three CHR investigators received community benefit funding from Kaiser Permanente Northwest last year to conduct pilot research projects. Here’s a wrap-up of what these studies did and what they found.
1. Improving Health Systems’ Response to Youth in Foster Care
Frances Lynch, PhD
Principal Investigator: Frances Lynch, PhD
Background: Children in foster care have significantly more physical and mental health care needs than children who are not in foster care, yet these needs are often unidentified and untreated. Using electronic health records (EHRs), we documented unmet needs for children in foster care. Using interviews, we identified factors that contribute to unmet needs for youth in foster care and explored ways to better monitor and address them.
What We Did: Lynch partnered with the Oregon Social Learning Center and with the OCHIN network of community health clinics to conduct a study of 2,223 Oregon foster children who receive health care in Oregon clinics, comparing them to similar children who were not in foster care. We also interviewed health care providers, young adults who experienced foster care as children, and current or recent foster parents to explore ways to improve care.
What We Found: Children in foster care had more co-occurring illnesses and more chronic conditions than children who were not in foster care. Specifically:
- 65% of children in foster care were diagnosed with at least one mental health condition.
- For both groups of children, rates of treatment for mental health diagnoses were very low: 39% for children in foster care and 26% for the comparison group. Many children with mental health needs went without care.
Providers reported that they lacked information about children’s situations and history, and often do not know children are in foster care. They also expressed a lack of continuity of care and not enough time for visits with these patients. Youth reported feeling that they didn’t have a voice in their care, that they had to tell their story over and over, and that they were not given choices about their care. Foster parents reported that they often did not know children’s health history, and that they lacked support and training to deal with children’s mental health needs. They also reported a lack of specialty mental health services, and long waits to see providers.
Takeaways: Our findings pointed to the need to improve identification of youth in foster care in health system records, increase continuity of care for these youth, and to test new approaches to health care management, such as medical homes specifically designed to treat youth in foster care.
2. PAUSE: Maternal Stress, Social Outcomes, and Mindfulness in Mothers of Children with Fragile X Syndrome and Autism Spectrum Disorders
Jessica Hunter, PhD
Principal Investigator: Jessica Ezzell Hunter, PhD
Background: Fragile X syndrome is a rare genetic condition that causes intellectual and developmental disability and behavior and learning challenges. Autism spectrum disorders (ASD), which are much more common developmental disabilities, can significantly impair a child's ability to communicate and interact with others. Mothers of children with these conditions experience higher maternal stress than mothers of children without these conditions and may have greater social anxiety, which can prevent them from reaching out for social support. Research shows that mindfulness interventions can alleviate distress among mother with high levels of stress. However, in-person group sessions may not be possible due to some mothers’ social anxiety and due to how rare these conditions are. We tested a mindfulness training app among mothers of children with these conditions who were experiencing elevated maternal stress.
What We Did: Hunter partnered with Emory University’s National Fragile X Research Center and the Autism Society of Oregon to recruit 20 mothers of children with FXS and 20 mothers of children with ASD. Participants completed questionnaires, tried a mindfulness app for 10 minutes a day, 10 days in a row, and took part in interviews with study staff that explored their thoughts on whether the app was helpful, their sources of stress, and sources of social support.
What We Found:
- 72% of FXS moms and 75% of ASD moms completed the Take 10 program.
- Among those who did not complete it, mothers had a hard time remembering to do it or finding time to do it.
- 77% of FXS moms and 88% of ASD moms found the program to be helpful.
A mindfulness training app is an accessible tool that mothers of children with intellectual and developmental disabilities can access immediately to help them deal with stress.
Takeaways: Parents of these children need support and resources. This study provides preliminary data for a larger project to study whether mindfulness techniques can relieve stress and lead to better outcomes for mothers and even their children with intellectual and developmental disabilities.
3. The Health of Gender Minorities: Results of a KPNW Community Health Pilot Project
Mark Schmidt, PhD
Principal Investigator: Mark Schmidt, PhD
Background: Gender identity refers to a person’s internal sense of being male, female, neither, or something else. People may identify as cisgender, transgender, or gender non-conforming. Most people identify as cisgender, which means their gender identity and expression match the sex they were assigned at birth.
Gender minorities—people who are transgender or gender non-conforming—are thought to experience significant health disparities compared to their cisgender counterparts. The estimated size of the U.S. gender minority population is 0.6%, or about 1.4 million people. However, large gaps in our understanding about this population remain.
What We Did: Schmidt partnered with the OCHIN network of safety net clinics to conduct this project, which set out to better describe the size and nature of the health disparities gender minorities face. We first identified a group of gender minority individuals from the KPNW health plan and from OCHIN clinics, using data from the electronic health record. We then compared gender minority patients with a group of cisgender patients on a broad range of health care measures. We collected data on race, ethnicity, age, insurance status, screenings, vaccinations, and a range of other measures. We looked specifically at conditions that are more common among gender minority individuals.
What We Found: Our study showed that gender minority patients have more interaction with the health care system and greater use of health care services. Specifically:
- We have seen increasing numbers of gender minorities seeking care, especially since 2015. The population is small, but these patients have complex needs.
- Mental health diagnoses, such as depression, anxiety disorders, and suicidal ideation were among the top health conditions identified among GM patients across the age spectrum and occurred at significantly higher rates than in cisgender patients.
- GM patients were also more likely to have certain physical chronic conditions than cisgender patients, such as asthma, cardiovascular disease, and HIV/AIDS.
Takeaways: The health disparities our study identified are consistent with but more extensive than those documented in previous research. Health care providers need to know that gender-affirming care involves more than gender transition procedures; gender-affirming care is needed across all clinical services.
About Kaiser Permanente Northwest Community Benefit
Kaiser Permanente Northwest is committed to supporting innovative solutions to our most difficult community health problems. Read more about Kaiser Permanente’s community health efforts throughout Oregon and southwest Washington.