Within Research Centre Innovations in Care, we define self-management in a broad sense. "Self-management refers to the individual's ability to manage the symptoms, treatment, physical and psychosocial consequences, and lifestyle changes inherent in living with a chronic condition." (Barlow et al, 2002).
Within this broad definition, self-management is not only treated as the capacity to deal with the condition and its treatment, but also the ability to be self-reliant in all areas of societal functioning (social participation). Within this research programme, we talk about self-management and (social) participation to emphasise this broad definition.
Active involvement in self-management is favourable to psychosocial adaptation to a chronic condition. Therefore, self-management is a core concept in the discourse concerning the innovation of Dutch chronic healthcare, and this demands that both patients and healthcare providers are better equipped. Many people are perfectly able to adequately apply self-management, but there are people who need extra support from healthcare providers, such as children and adolescents who grow up with a chronic condition. They have to gradually take charge of treatment and living with their condition from their parents. Vulnerable elderly people also require additional self-management support.
Being a part of society is important, both for individuals and for society as a whole. Everyone should be able to participate, but not everyone is equally equipped to do so. For example, a disability or chronic condition, judgment of others, and physical obstacles in the direct environment can impede or complicate optimal participation. For this reason, the research centre studies what participation means to people with chronic disabilities, what gets in the way, and how participation can be facilitated.
This research programme has four main themes:
- Young people with chronic conditions: transition to adulthood and transition in care
- Finding and maintaining employment
- Diversity in participation (Disability Studies)
- Support for Self-Management and Participation from healthcare providers.