When you think about those at the forefront of managing mental health concerns – psychiatrists, psychologists, therapists, counselors, and other professionals may come to mind. However, former Surgeon General Dr. David Satcher released a mental health report in 2000 that declared “families are the primary source of care and support for the majority of adults and children with mental problems or disorders” (Satcher, D., 2000).
Prior to the COVID-19 pandemic, approximately 21% of Americans suffered from a mental illness (that number has since increased), and of those, only 40% sought mental health services. For youth and adults who seek services, the average amount of time that passes between the onset of initial symptoms and treatment is 11 years (NAMI).
Families play an integral role in an individual’s mental health journey, and family involvement has a significant impact on the ways in which someone thinks about their mental health, their willingness to seek services and their level of trust with mental health professionals.
Family involvement vs. family engagement: Family engagement is a term used to describe the active contribution of a family throughout treatment as an equal partner of the care team, while family involvement is less interactive and collaborative. Family engagement refers to ongoing, goal-directed relationships between families and providers that are mutually and culturally responsive. Family engagement plays a critical role in successful interventions and outcomes in behavioral health treatment.
Collaborating with families in culturally responsive ways is particularly important when considering the impact of mental health stigma on the utilization of, and engagement with, mental health interventions. Stigma is the external (public) and internal (self) negative perceptions one has about mental health challenges (www.mcleanhospital.org). While stigma is universal, it is even more prominent in historically marginalized cultures and communities. Often, culture-specific stigma is internalized by individuals and families, which impacts help-seeking behavior and contributes to mistrust of mental health professionals. Successful engagement with families, including extended family, has the potential to minimize stigma by helping providers better understand the specific historical and cultural perceptions a family holds regarding mental health issues and treatment, and allowing for the development of culturally responsive and sensitive approaches to rapport-building and interventions (Lindsey, Joe & Nebbitt, 2010).
In the field of mental and behavioral health treatment, the National Building Bridges Initiative and the 2018 Family First Prevention Services Act have set high standards for the implementation of increased family engagement across provider services, particularly in residential treatment settings or out-of-home care. These initiatives have led to shortened lengths of stay, improved behavioral health outcomes, increased community connections and natural supports, and sustained success post-discharge. These programs have also demonstrated the importance of frequent and continual contact with the family so they can contribute to the progress of their loved one. Opportunities for family participation include phone and video connections, active contributions in treatment team meetings and family therapy, and full engagement in home visits for community integration, as well as the individual’s eventual completion of the program. Without this kind of true family engagement, optimal outcomes can be minimized, prolonged, or even halted.
Devereux’s prioritization of family engagement: Devereux Advanced Behavioral Health practices a family engagement model that is grounded in the Building Bridges Initiative. Devereux understands there is no one definition for the term “family,” and “embracing families” means something different to everyone. Staff are required to participate in trainings that discuss the family perspective, and how to fully honor it while providing mental and behavioral health services for their loved ones.
“Meeting the family where they are, not where you expect them to be” is an important motto for Devereux’s family engagement and partnership work. This requires a thorough understanding of the family, their strengths, needs, life’s circumstances, priorities, barriers, and culture. Special attention to these factors is at the core of Devereux’s admissions process.
As a trauma-informed care (TIC) organization, Devereux keeps TIC principles, including historical, cultural and gender issues, at the forefront of its framework for all interventions, including family engagement. Staff are trained in topics related to diversity, equity, inclusion and belonging (DEIB), and begin addressing cultural factors and perception of treatment with families in initial stages of engagement, including outreach and admissions. This framework is utilized throughout treatment and during the discharge process.
Future considerations for family engagement: While research supports the need for family engagement, and the benefit of family engagement initiatives on outcomes, there is significant diversity in the behavioral health field regarding the systems and interventions utilized for family engagement. Innovation and continued integration of culturally responsive interventions, with a focus on de-stigmatization, are essential to an organization’s ability to support a wider population of families who are the primary supports for individuals with behavioral health needs.
Future considerations for best practice in family engagement across the mental and behavioral health industry should include:
A family peer support model (also known as a family navigator), where family members with previous or ongoing lived experiences of a similar behavioral health situation are offered as a resource to support the incoming family from the moment of referral through discharge and beyond. A family peer will guide the family through their journey, moving from guidance in a “doing for” to a “doing with” model. Note: Employing family navigators from varied cultural and ethnic backgrounds also is essential to helping decrease mistrust and stigma for families from marginalized backgrounds.
An online family portal, where families can electronically access their loved one’s information, including their daily schedule, medications, recreational activities, and direct care staff, at any point in time. Cultural sensitivity to internet and electronic access should be part of the assessment and interventions with families.
Translated documentation across multiple languages and communication means (e.g., website, letters, emails, family portal language), and access to interpreters for phone calls, team meetings or assistance with center interactions.
Prioritizing communication of their loved one’s strengths on an ongoing and regular basis, not just the challenges.
Discharge planning should begin at the time of admission; consider realistic and manageable options; and consider creating a family “transition preparation” training for transitions that is available to the whole family prior to their loved one ending services with the organization.
Crystal Taylor-Dietz, Psy.D., is National Director of Behavioral Health Services and Amy Kelly, MBA, MNM, National Director of Family Engagement, at Devereux Advanced Behavioral Health
About Devereux Advanced Behavioral Health: Devereux Advanced Behavioral Health is one of the nation’s largest nonprofit organizations providing services, insight, and leadership in the evolving field of behavioral healthcare. Founded in 1912 by special education pioneer Helena Devereux, the organization operates a comprehensive network of clinical, therapeutic, educational, and employment programs and services that positively impact the lives of tens of thousands of children, adults – and their families – every year. Focused on clinical advances emerging from a new understanding of the brain, its unique approach combines evidence-based interventions with compassionate family engagement.
Devereux is a recognized partner for families, schools, and communities, serving many of our country’s most vulnerable populations in the areas of autism, intellectual and developmental disabilities, specialty mental health, education and child welfare. For more than a century, Devereux Advanced Behavioral Health has been guided by a simple and enduring mission: To change lives by unlocking and nurturing human potential for people living with emotional, behavioral, or cognitive differences. Learn more: www.devereux.org.
Mental health: A report of the Surgeon General–Executive summary. Professional Psychology: Research and Practice, 31(1), 5–13. https://doi.org/10.1037/0735-7028.31.1.5
Mental Health By the Numbers | NAMI: National Alliance on Mental Illness
Lindsey, M. A., Joe, S., & Nebbitt, V. (2010). Family Matters: The Role of Mental Health Stigma and Social Support on Depressive Symptoms and Subsequent Help Seeking Among African American Boys. The Journal of black psychology, 36(4), 458–482. https://doi.org/10.1177/0095798409355796
The Impact of Stigma on Mental Health | McLean Hospital
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