Family Support Research
Below we summarize the results of studies of family caregivers of people with dual diagnosis. Topics include family experiences with seeking services for their relative, dealing with a relative’s worsening mental health during the pandemic, and educational approaches designed to help family caregivers support their relative’s mental health. Links to study descriptions and the articles themselves are provided, where available.
Family Caregiver Experiences Referring Relatives for Mental Health Services
In this study of family caregiver experiences referring their relative to a national crisis intervention program for IDD and mental health issues, low levels of satisfaction were found. Under half of families were satisfied with mental treatment their relative received. They reported gaps in the following areas: crisis; night and weekend services; choice of services and providers; communication and coordination between providers; and specialized provider training. Caregiving fathers were less satisfied than mothers.
Family Caregiver Observations of Relative’s Worsening Mental Health During the Pandemic
This was an international survey of 12 countries that examined family and non-family caregivers’ experiences with the mental health of people with IDD whom they supported during the pandemic. Family caregivers observed increases in depression/anxiety, stereotyped behaviors, and aggression towards others in the people they supported. Families reported reducing or ceasing employment and absorbing additional costs when supporting their family member. Significant predictors of low family caregiver wellbeing included: 1) observing negative changes in the mood of the person they supported; 2) residing with the person in the family home; 3) restrictions in visits to and from other family and friends; and 4) dissatisfaction with the level of support provided to their family member.
Family Caregiver Satisfaction with a Virtual Course on Supporting their Relative’s Mental Health
This study evaluates the impact on family caregivers of a 6-week virtual course designed to help them support the mental health and well-being of their relative with IDD. Family caregivers who participated in the course reported improved self-efficacy and sense of well-being after completing it, and these gains were maintained at follow-up. In particular, they reported significant improvement in their ability to support and manage the mental health of their family member. They also expressed high levels of satisfaction with the course, especially opportunities to share strategies with other families, the ease with which course content was understandable, and a high level of interest in the course material.
Correlates of Caregiver Experiences Among Parents of Adults with Autism
This study looked at the factors that impacted caregiving burden, satisfaction, and efficacy among parents of adults with autism in Illinois through a survey. The results found that greater planning for the future related to higher caregiving satisfaction. Additionally, greater community involvement related to higher caregiving self-efficacy. Lower choicemaking of the individual with autism was associated with greater caregiving satisfaction and self-efficacy. Greater caregiving burden was related to greater maladaptive behaviors and poor health of the individual with autism.
Resources
The Arc of Illinois Family Support Network
The Family Support Network works to uncover the resources, funding, and services needed to help people with developmental disabilities live fulfilling lives in their own homes. By focusing on the needs of both family members and individuals, they help break down barriers to clear the way for long-term success.
This 20-minute video training was developed by the Illinois NTI to support family caregivers of people with dual diagnosis of intellectual and developmental disabilities (IDD) and mental health conditions in creating trauma-informed environments for their family members.
Illinois’ Division of Specialized Care for Children (DSCC)
Parents and caregivers of children with special healthcare needs should have a strong support system. The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is here to coordinate that support. DSCC is a statewide program that partners with Illinois families and communities to help children with special healthcare needs connect to the services and resources necessary to reach their full potential. Each state receives federal funds to improve the health of children and youth with special healthcare needs. DSCC has been the designated program for Illinois since 1937. DSCC guides families through their child’s journey with a medical condition. We also work with doctors, schools and community groups to create a seamless support system. Our team partners with families to develop a plan of care that addresses a child’s medical, social, behavioral, educational and financial needs. This process is called care coordination. It is free for all children with eligible medical conditions, regardless of their family’s income level.
Supporting Illinois Brothers and Sisters (SIBS)
SIBS works to support siblings of people with disabilities in Illinois by connecting them with information, networking opportunities, and resources to improve the quality of life for the entire family. SIBS provides siblings, parents, and professionals with information and resources on topics of special interest, such as future planning needs, navigating the Illinois service system, and understanding the unique needs of siblings. SIBS connects siblings to peer supports through social gatherings, online chat groups, and education events. SIBS equips siblings with tools to advocate for their siblings with disabilities.
BETA Illinois Dual Diagnosis Training Initiative 