The overall goal of this project is to develop and test methods to increase the number of Latino children who are screened in primary care at an early age for autism and other developmental delays, using evidence-based measures. There is strong evidence of disparities in the rates of autism diagnosis and delays and in use of services among Latino versus non-Latino kids. Early diagnosis of Autism Spectrum Disorders and developmental delays leads to better and earlier interventions. The aim is to increase the number of children who are referred for evaluation and treatment in a timely manner, and to increase the number of children who receive services when they are needed.
Community Involvement in Autism Awareness and Outreach
It was very important to use appropriate outreach activities that are compatible with the community in order to increase the awareness of developmental milestones among Latino parents. It was also important to take steps to learn from the community about how best to provide information to them and obtain information from families.
Robin Harwood, PhD
Beyond outreach and raising awareness, one of the most important next steps is helping families navigate the system. It is critically important to have programs to help families get the right assessment and get to the right providers. Family navigators place a very important role in getting families to the right place. It is critical to engage bilingual and bicultural parents with lived experience to provide ongoing consultation and act as a resource for families. Family navigators can engage directly with parents to conduct parts of the screenings, follow up on critical questions, and provide support. This is an important service to provide to both families and providers.
It is critical to think about this right from the beginning of the grant. Some key considerations for sustainability include:
Establish good relationships with partners early on
Connect with well-established ongoing programs that are residing in the community (WIC, primary care sites).
Set up forums and logistics of events for partners (e.g., developmental fairs and small group chats or “Charlas”).
Engage with partners on various levels including working with community advisory boards and other community groups to spread the word about the program.
Transition from research project staff conducting primary activities to partner/host organization conducting activities (e.g., screenings done by primary care physicians and staff).
Facilitate connections between the primary care sites and local family organizations so that local organizations can take on a greater, sustained role overtime (e.g., provide navigation services).
No matter how strong the screening and referral system, it will not be effective unless you address community-specific implementation issues. For this community, it was literacy and ensuring that families understand the questions they are being asked. Engage families in the discussion of how they would feel most comfortable providing information and then adapt the screening process for use with people from different linguistic and cultural backgrounds. It is also important to conduct validity tests with the population so that protocols can be adjusted to obtain more valid responses.
Unique Contributions to field of Autism
This project has contributed to the development of common factors for inclusion in primary care screening programs that will result in identification and treatment of ASD, particularly for culturally diverse families. Although there are evidence-based screening tools that have been shown to facilitate, to increase the rates of ASD diagnoses, they are not often used in primary care. The field needs effective engagement strategies to increase the likelihood that families will feel comfortable talking with providers about developmental concerns. This project focuses on developing strategies targeting both the provider and family so that both sides connect and engage in discussion of these important issues in the primary care setting, and follow-up as needed to obtain services.
The mission of this study was to prevent the onset of perinatal depression and improve the mental health of low-income, predominantly Spanish-speaking Latinas. Latinas are the largest growing population with the highest birth rates and yet have less access to services including preventive mental health services. The Mothers and Babies Program focused on prevention—both mood regulating skills and cognitive behavioral strategies.
On partnering with community based organizations
Community partnerships are extremely important and take a lot of time to cultivate. There needs to be a lot of trust. It is also important for us to meet and directly engage with front line staff working with perinatal women. These staff are committed and yet are often overloaded working with this population. Engaging agency staff from the beginning was crucial to the success of the project.
Hae Young Park, M.P.H.
On the results of the study
Overall, the women in both the intervention and usual care groups had very low depression rates. And, in fact, those women receiving the intervention—8 regular sessions plus 3 booster sessions—did not have significantly lower depressive symptoms than those in the control group. It was perplexing. We conducted exit interviews to better understand the results and found that the women in the intervention group were able to apply the skills they learned to control their moods. Similarly, those in the control group were much more aware of their moods and their interactions with people simply because they were part of the study. They got to know and meet with us, the research staff, up to 5 times over 15 months which suggests that social support and developing relationships were very important for both groups of women.
On lessons learned
Bilingual, bicultural staff are key to establishing good relationships.
Researchers must understand the needs of the population with which they're working.
Adapt the intervention so it's culturally appropriate and evaluate whether the adaption works.
There is value in using mixed methods evaluation.
It's important to focus on prevention (rather than on just treatment) because it helps to decrease the impact of depression and the stigma associated with it.
On regional and National impact
Through this study, we were able to collect a rich database over a long period of time. This has resulted in 13 peer-reviewed publications as well as various presentations at regional, National, and international conferences. The Mothers and Babies course manual is available and easily accessible via the UCSF website in both English and Spanish and is now being adapted with new populations and in new settings.
Sustainability is a huge challenge especially with limited funding and in a treatment dominated field. Prevention works and has a more significant impact. We need to integrate a range of mental health services into primary care to better meet the needs of women and their families.
On becoming an MCH Researcher
Being an Asian-American female researcher conducting prevention research with a vulnerable, high-risk population in community-based settings is challenging but, at the same time, extremely rewarding. I was able and very fortunate to have great mentors during the different phases of my academic career. One of the things I really learned is that you cannot do this work alone—that it's so important to have these mentors, who I continually check in with periodically and still help me figure out what to do next—and also the importance of developing strong collaborations with other researchers, especially community partners. Based on all of these experiences, I really value the importance of giving back and hoping to mentor other students, especially minority students who may have had less exposure to research and to figure out how to provide them with more of these research opportunities over time.
On three wishes from young adults with developmental disabilities
Adolescents transitioning in to adulthood are most excited about their work and their relationships. The three most popular wishes are for friends, more money and more vacation. Girls of transition age tend to have higher rates of depressive symptoms and low self-esteem; the key is the lack of friendship.
On parental stress
The transition out of education is a really tricky one. Almost every family has said to us that they have not had enough time to plan for that transition. Transition out of school has had some major implications for many families because parents no longer had a set routine for their child.
Sue Lin, M.S.
On fathers as partners
Some fathers have talked about being the invisible partner. This feeling continues into the school system where mothers are more often the ones who are often spoken to about what is going on in school. Fathers have felt like they have not been paid enough attention to. I think that many service providers are now trying to correct that now.
On Early Intervention
Throughout the study, families continued to talk about early intervention as a wonderful experience even at the time of initial diagnosis. There were many struggles at that point in their life. However, they continued to feel that early intervention made such a difference in their lives in helping them get on a positive trajectory with their child and with advocating for their child with the service sector.
At age 10, the child with a developmental disability would say that their best friend was their sibling. We are finding some very positive relationships that exist especially in families with positive family climate and effective parenting. 60% of the siblings in our sample expect to be guardians of their brother or sister with a disability. So, that is a major undertaking for them and we are looking closely at predictors for positive or troubled relationships between the siblings.
On services coordination
Many parents felt that they have not had enough time for transition to plan. Schools seem to be a logical place to foster a holistic approach to the child's service needs. Families could greatly benefit from a central location such as the school to learn about and to access resources.