Mental Health in People with Intellectual Disabilities

The present project investigates mental health in people with intellectual disability (ID). People with ID have limitations in intellectual functioning (IQ < 70) and in adaptive behaviour, which include daily living skills (e.g. communication, self-care, understanding time). These limitations manifest before the age of 18 and can be caused by injury, infection or a genetic condition such as Down syndrome. However, the cause of ID is often not clear. People with ID can be mentally ill or mentally healthy just like any other person. There is a lot of research on how mental disorders present in people with ID and how they can be assessed and treated. There are also adapted diagnostic criteria for mental disorders in people with ID. However, research concerning positive mental health aspects for people with ID is scarce. Moreover, existing mental health definitions do not consider characteristics of people with ID and their pre-conditions. According to existing mental health definitions, people with ID can never be mentally healthy. This gap in theory represents a disadvantage for people with ID. Mental health services and activities promoting mental health have to be based on well-founded theories and up-to-date findings on how to regain, maintain, or improve mental health. To date, there is no reliable theory, model, or definition of mental health for people with ID, meaning that this population is excluded from high-quality mental health care that meets their needs. The primary aim of this project is to establish the first mental health definition inclusive of people with ID. We will use a multi-method approach and include people with and without ID equally throughout the research process to ensure that the opinions of those most affected significantly contribute to the study`s findings. In the first step, we will conduct a literature review, focus groups with people with ID, and expert interviews. The information collected in this initial phase will be used to design a Delphi study a reliable approach to reach consensus among experts. In our study, experts will include people with and without ID as equal respondents. The Delphi study will result in the first definition of mental health for people with ID. In the final step of the project, the findings will be disseminated to and evaluated by all parties that contributed to the research process, including people with ID, their caregivers, and mental health professionals. This will improve the visibility of the project findings and ensure their rapid transfer to practice.