What you need to know:
Individuals who are diagnosed with both a developmental disability and a mental health condition (called a ‘dual diagnosis’), along with their caregivers, face unique information and service gaps. Researchers interviewed individuals living with a dual diagnosis and their caregivers about their experiences, strengths, and existing gaps. The need for capacity building and resource and strategy development were outlined by participants.
What is this research about?
People with a developmental disability are at risk for also having mental health challenges, but accessing resources for their range of needs is often challenging. Research suggests that, compared with the typically-abled population, people with developmental disabilities are at greater risk for challenges related to accessing health care and emotional support. Individuals (e.g., family members) living with an individual with a dual diagnosis also need support and services. Research questions addressed in this study were: What are the experiences and perceived care needs of adults with a dual diagnosis and their family caregivers? And, from the perspectives of adults with a dual diagnosis and their family caregivers, what is required to facilitate effective care?
What did the researchers do?
Fifteen participants were interviewed; these included adults with a dual diagnosis of a developmental disability and a mental health condition, and their family caregivers. Mental health issues included attention deficit disorder, bipolar disorder, obsessive compulsive disorder, schizophrenia, anxiety disorder, and depression. Developmental disabilities consisted of autism spectrum disorder, fetal alcohol spectrum disorder, intellectual disability, and global developmental delay. Participants lived in urban or rural communities in central and northern Alberta.
What did the researchers find?
For several families, the individual’s mental health issues were seen as the greatest concern because they regularly needed monitoring and care. Dually diagnosed individuals and their parents often felt misunderstood and did not receive enough support or sufficiently-focused care plans for intervention. For example, an individual with a dual diagnosis said that his support worker focused only on his developmental disability, while not addressing his mental illness. They further shared that due to frequent hospitalizations and health visits, they received a range of new diagnoses and were often left with confusion or uncertainty.
Participants identified a range of experiences including sometimes feeling frustrated, demeaned, misunderstood, and overall unwelcome in their community. They talked about many challenges relating to their care-related needs, with care usually provided by parents or other family members because there were insufficient services and resources such as help with transportation, housing, or employment access.
Capacity building was recommended for professional health and social care providers including developing a better understanding of firsthand experiences and needs of individuals and families, along with strategies to guide practice and programs. Also, training is needed for first responders, such as police, emergency personnel, and emergency room staff. It was noted that proportionately more services tend to be based in pediatrics, with less focused on adult-based challenges associated with developmental disability and mental health concerns. Greater focus is needed on how these diagnoses intersect and affect the individual and family across their life span.
Resources are needed such as community housing, vocational engagement, recreation options, transportation support, and health and mental health services. Greater publicly funded services are needed to ensure a more holistic and resourced system of care that addresses the range of needs of people with developmental disability and mental illness.
Specific strategies that parents identified as helpful to them in daily care were: scheduling and organization, developing hobbies (seeking balance), participating in education/support programs, building knowledge, learning how to navigate the care system, staying determined and keeping one’s ‘resolve’, and choosing to not focus on negative thoughts.
Despite the many negative experiences and challenges related to living with and navigating care related to a dual diagnosis, participants also identified positive and helpful elements of care. These included: a mental health/support worker who organized appointments and transportation, targeted support groups in the community, engaging activities at the hospital, and staff who reminded participants of upcoming appointments. These services conveyed care elements that are helpful, but often not available to those with a dual diagnosis or their families.
How can you use this research?
This research identifies current gaps for individuals and families with a dual diagnosis. Helpful services have been identified as have existing gaps that can be examined in future research, policy and practice in order to improve service provision for this population.
Nicholas, D.B., Calhoun, A., McLaughlin, A.M., Shankar, J., Kreitzer, L., & Uzande, M. (2017). Care experiences of adults with a dual diagnosis and their family caregivers.Global Qualitative Nursing Research, 4, 1-10. doi:10.1177/2333393617721646
This summary was written by Kala Rafuse, Research Assistant, in the Vocational Abilities Innovation Lab,Faculty of Social Work, University of Calgary.