We are conducting a study to understand the role of problem-solving in challenging behaviors for children with Down syndrome so that we can better understand the development of and treat these behaviors. If you agree to participate, this study will involve questionnaires, some of which may be completed at home. You would also attend an in-person visit that involves measuring your child’s naturally-occurring brain activity with EEG as well as cognitive assessments. We would schedule your visit around your schedule to the best of our ability and we can schedule this visit in a location that is convenient for you (UW, home visits, etc.). Participants will receive an $80 gift card to thank them for their time.
Patient Population: Caregivers/Providers
Enhancing Suicide Care Monitoring and Intervention in Primary Care
This project outlines a comprehensive two-year initiative aimed at enhancing suicide care services in primary care settings. The project addresses a critical gap in the continuum of care by providing interim crisis support for at-risk patients who are waiting to be connected to specialty mental health. The main objectives of this project are to develop two innovative interventions intended to be delivered in a primary care setting: an adapted caring contacts protocol and a system to provide short-term, centralized remote monitoring of patient’s suicide risk. In designing these interventions, we intend to leverage technology such as digital/online platforms and remote monitoring systems that will support asynchronous patient check-ins. Finding innovative ways to offer support to patients in primary care settings where there is limited clinician time and typically an even more limited behavioral health workforce is imperative to creating a sustainable program. Therefore, our proposal intends to maximize the use of technology and focuses on self-guided and/or automated approaches.
This project uses a co-design approach to develop these interventions, where we will elicit input directly from patients and caregivers on the acceptability, feasibility, and appropriateness of these interventions. We hope this project will improve the timely support and management of suicide risk among primary care patients, ultimately enhancing services in outpatient settings while supporting the Least Restrictive Environment Framework, to enhance patient outcomes, reduce unnecessary referrals to overburdened emergency departments, and promote the overall well-being of patients and their families.
Adaptation and co-design of a digital intervention for suicide prevention in primary care
Suicide is a leading cause of death among 10-to-24-year-olds. Primary Care (PC) often serves as a trusted resource for adolescents and young adults (AYA) and their families; and routine wellness visits provide important opportunities for early detection of suicide risk. Importantly, nearly half of those who die by suicide contact their PC clinic within one month prior to suicide. Unfortunately, suicide prevention resources for PC are limited, with a particular gap in short-term risk management and intervention services for lower risk patients and patients with STB who are waiting to be connected to specialty mental health care. Furthermore, parents/caregivers (hereafter referred to as parents) represent a key protective factor for suicidal AYA. Yet, few interventions have been developed to leverage parent support and increase parental self-efficacy to prevent AYA suicide. The current project partners with a digital mental health app, iKinnect, to adapt it for use in PC. iKinnect is designed to improve parent and AYA communication and parental selfefficacy to prevent risk behaviors, including suicide behaviors. The tool uses a parent and AYA paired interface and was originally designed for implementation with high-risk youth involved in the juvenile justice system. Intervention components include parent and AYA content including safety planning, skills for emotion management, parent coaching on lethal means restriction, expectation and goal setting, earning/providing rewards and praise, and modeling videos for parents. While promising, the program has yet to be tested with AYA presenting with suicide risk in PC.
Exploring the implementation determinants of paraprofessional task-shared mental roles in integrated behavioral care settings in Washington State
The gap between the number of people needing and accessing mental health care has led to the development of new types of mental health providers to help expand access to care. These providers, referred to as paraprofessionals, have typically at most a bachelor’s degree and treat mild and moderate depression and anxiety. However, because the novelty of these roles in the Unites States, little is known about organizational and employee barriers to uptake and implementation. Further, little is known about US patient perspectives on having a paraprofessional mental health provider. The proposed research explores behavioral health employer, behavioral health employee, and patient perspectives on two new paraprofessional roles being deployed in Washington State – the mental health Community Health Worker and the Behavioral Health Support Specialist – to help identify key barriers and facilitators to implementation of these roles.
School-Based Paraeducator Education for Engagement at Recess (SPEER)
The purpose of this study is to compare two implementation strategies for a social engagement intervention that supports autistic children and their non-autistic peers during recess. Remaking Recess has been shown to improve peer engagement for autistic students when implemented by paraeducators during recess. However, without supports, paraeducators face barriers to implementing the intervention well. This study compares paraeducators’ use of Remaking Recess when they receive coaching alone and when they receive coaching along with consultation from school-based teams.
Testing the efficacy of the Helping Educational Leaders Mobilize Evidence (HELM) implementation strategy
This study will examine the efficacy of the Helping Educational Leaders Mobilize Evidence (HELM) implementation strategy for promoting building-level implementation leadership, implementation climate, and high-fidelity delivery of evidence-based practices. This study tests whether HELM improves outcomes when used in conjunction with Positive Behavioral Interventions and Supports (PBIS), an evidence-based practice. The researchers will compare the effects of PBIS implemented with usual supports and PBIS implemented with HELM. They will also explore what for whom, under what conditions, how equitably, and through which processes HELM works to improve student academic outcomes, as well as its cost-effectiveness.
Family and Caregiver Training and Support Program (FACTS) pilot
We know from decades of research that caregiver involvement, including family and non‐family members, in a patient’s mental health treatment can make a tremendous difference in the trajectory of their loved one’s life by supporting recovery, reducing relapse, and decreasing mental health crises. Family and caregiver involvement also decreases provider stress, improves caregiver well-being, and can lead to lower patient healthcare utilization and costs. But despite their importance, many family members and caregivers struggle to engage in the kind of support that can benefit the patient and themselves. They often lack access to education, resources, or skills to step into this critical role despite a desire to help. Our initiative intends to develop a pilot Family and Caregiver Training and Support Program (FACTS) program that aims to decrease barriers to caregiver involvement and improve caregiver support.
Our team will develop online training that will include an orientation to having a loved one who is psychiatrically hospitalized and will teach families and caregivers practical communication skills while their loved one is in our care. These topics would be relevant regardless of a patient’s diagnosis and will be adapted from existing evidence‐based models. The pilot will be tested with caregivers of patients hospitalized at the new Center for Behavioral Health and Learning and we will proactively integrate input and feedback from participants to inform program improvements along the way.
We will also build a public-facing website to host FACTS training materials as well as mental health information and resources that we will curate for accuracy and reliability. We expect the FACTS pilot content will serve as a foundation for additional offerings that will include diagnosis specific skills trainings as well opportunities for in-person sessions and Family Peer Support programming.
Pilot of an inpatient Family Bridger Model to support families with loved ones who experience psychosis
Despite treatment advances, psychotic disorders remain among the costliest and most disabling conditions worldwide. One of the best ways to help those experiencing psychosis is to involve their families in treatment. Empirical evidence suggests that family interventions for psychosis confer numerous benefits for both families and their loved ones who experience psychosis. However, behavioral health providers experience multiple barriers to engaging families in treatment, resulting in poor accessibility to family interventions for psychosis and worse outcomes for families and their loved ones alike. For example, families who receive no family interventions for psychosis experience higher rates of stress, burnout, depression, anxiety, caregiver burden, relationship strain, and inadequate social support. These outcomes are further compounded during their loved one’s hospitalization.
Family peer specialists are family members with lived experience who have received specialized training to assist other families with a loved one with mental illness. Such models have been found to improve both patient and family outcomes. One such promising model is a Family Bridger program. Modeled after the Peer Bridger program, we previously piloted a Family Bridger program that deployed family peer specialists to support families who have a loved one with psychosis by providing emotional support, education, advocacy, resource brokerage, and skill-building while their loved one was engaged in an early psychosis outpatient program. For this project, we propose to meet the following specific aims: (1) adapt the Family Bridger program for an inpatient setting, and (2) evaluate the feasibility, acceptability, appropriateness, and preliminary effectiveness of Family Bridgers in an inpatient setting.
Evaluation and dissemination of the TRANSforming Families: Embracing Change with Teens Therapy Group
Transgender and gender diverse (TGD) adolescents experience 4-18 times higher rates of anxiety, 4-23 times higher rates of depression, 11-54 times higher rates of suicidal ideation, and 2-5 times higher rates of suicide attempts compared to their cisgender peers. Importantly, parents/guardians (i.e., caregivers) can have a significant impact on TGD adolescent mental health, with recent research suggesting that caregiver support and acceptance are associated with a 30-40% reduction in these mental health concerns.
Community-based support groups are common practice with TGD adolescents and families. However, group intervention programs that work specifically with caregivers are rare, and existing programs have not been formally evaluated. Therefore, the goal of this project is to evaluate TRANSforming Families: Embracing Change with Teens, a virtual, multi-family program that was developed by mental health providers in the Seattle Children’s Gender Clinic (SCGC), to understand its impact on caregiver support and acceptance and adolescent mental health. This partnership between SCGC mental health providers and researchers will represent one of the first formal evaluations of a group intervention program for caregivers of TGD adolescents, the results of which can inform future implementation and evaluation of this program in pediatric gender clinics across the United States.
Development of an mHealth support specialist for early psychosis caregivers in Washington State
Early intervention can significantly improve the trajectory of a young adult at risk for psychosis. Specialized treatment programs for youth at risk are associated with reduced symptoms and relapse risk and increased functioning. Family caregivers play a critical role in facilitating treatment engagement and recovery, but too often they lack the support they need. Specialty psychosis services providing psychoeducation for family members are expanding but still difficult to access. Caregivers face many barriers to care: limited providers and session time availability, long travel times, or patient ambivalence about treatment. As a result, a minority of youth with early psychosis have caregivers that have accessed standard-of-care family interventions.
To address these gaps, our team developed Bolster, a mobile health (mHealth) app designed to provide psychoeducation, communication coaching, and self-care support to caregivers to youth at risk for psychosis. In preliminary work, Bolster was feasible to deliver, acceptable to caregivers, and showed promising efficacy. However, mHealth interventions that are supplemented by a human clinical support have higher engagement and effectiveness than those that are purely self-guided. To optimally implement mHealth for early psychosis caregivers, there is a need for development of this clinical workforce.
We propose to develop and pilot an emerging clinical role – the mHealth support specialist (mHSS) – equipped specifically to support caregivers to youth with early psychosis. Specifically, we will (1) develop a training and supervision framework supporting the mHSS for caregivers, (2) test this framework through training and supervising one mHSS, and (3) evaluate this approach as the mHSS provides support to caregivers to young adults with early psychosis throughout Washington State. Delivering this intervention has the potential to greatly expand population access to evidence-based strategies for psychosis. Developing the mHealth support specialist model would make Washington a national leader in scalable digital interventions for caregivers. This study takes a critical step toward realizing that vision.
