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.
Illinois Dual Diagnosis Training Initiative 