Family & Caregiver Engagement Checklist & Resources
*Please Note: The information on this page is still being developed. To submit comments, resources, or to join the working group, please contact us!
*Please Note: The information on this page is still being developed. To submit comments, resources, or to join the working group, please contact us!
We are proud to introduce a new module in the STARR Site Certification program focused on caregiver engagement, developed in collaboration with the National Federation of Families (NFF). This module helps equip staff with the understanding and tools to help involve families and caregivers effectively in mental health research.
We recognize the vital role that families and caregivers play in mental health research and treatment. This resource page is designed to encourage and support clinicians and research site staff in engaging families and caregivers effectively, helping to improve communication and collaboration.
The active involvement of families and caregivers can have an enormous impact on mental health clinical research. Caregivers are not only integral to the daily lives of participants but can also significantly influence the success of clinical studies. Here’s why their engagement is indispensable:
Mental health conditions often impact an individual’s ability to fully comprehend or adhere to complex study protocols. Families and caregivers serve as an essential support system, helping participants remember appointments, adhere to medication schedules, and follow study guidelines. Their involvement reduces the risk of dropout and ensures higher data integrity by promoting consistency in participation.
Families and caregivers offer unique perspectives on participants’ behaviors, challenges, and progress that researchers may not observe during study visits. Their observations can provide context to clinical data, helping researchers better understand the real-world implications of mental health interventions. This holistic view ensures that studies capture not only clinical outcomes but also the day-to-day realities of living with mental health conditions.
Engaging families and caregivers fosters open communication and builds trust between researchers and the communities they serve. Mental health conditions are often accompanied by stigma, making participants and their families wary of research. By involving caregivers, researchers can address concerns, clarify misconceptions, and demonstrate their commitment to the well-being of participants, thus enhancing overall trust in the research process.
When caregivers are actively involved in research, they become part of a broader network of support. This can reduce feelings of isolation and stigma that often accompany caregiving roles. Moreover, it emphasizes the societal value of their role, empowering families to advocate for better mental health care and research outcomes.
The ultimate goal of mental health research is to improve treatment options. By engaging families and caregivers, researchers can better understand how interventions affect not just the individual but their entire support system. This long-term perspective ensures that research translates into practical, sustainable improvements in mental health care.
Involving families and caregivers aligns with ethical principles of research, emphasizing respect for participants and their communities. It ensures that participants’ support systems are acknowledged and valued, and that the research process considers the broader context of participants’ lives.
We have created a tool to assess your SOPs and help identify any gaps for involving families and caregivers. There are two versions of the checklist: a short version for a quick assessment and a long version for a more comprehensive evaluation. See the sidebar for links to the Checklists.
If you have any questions or need assistance in any way, please contact us. We would be happy to work with you to include the Family & Caregiver Engagement exercise into your training program or curriculum.
Email: action@thestarr.org
Use this checklist to identify gaps and assess your strategies for involving families and caregivers. Choose between the short version for a quick assessment or the long version for a more comprehensive evaluation.
Long Checklist is coming soon! We are working on a comprehensive version of the checklist for those who want a deeper dive into family and caregiver engagement best practices.
Additional Resources:
Additional Notes:
Workgroup:
Dana LaBranche, NFF (Co-Chair)
Mallory Witham, Pillar
Rachel Barber, CenExel GA
Tamara Nelson, NTXCT
Erica Moore, The STARR Coalition