This PhD project aims to explore the utility of telehealth technologies to provide caregiver administered procedures of assessment and interventions to individuals with rare genetic syndrom.
In addition, the project will investigate possible ways to assess and monitor participants’ continuous consent to procedures.
Participants will be recruited among the target group of the Swedish National Center for Rett syndrome, and the clinical studies will be executed within single case experimental designs.
Primary measures will be target behaviors and in addition, data on participant consent, social validity and procedure fidelity will be collected.
Individuals with rare genetic syndromes characterized by multiple disabilities need access to specialized health care services throughout their lives. Limited behavioral repertoires and problematic behaviors are common.
Besides handling medical and physiological issues, the health care system should provide services to enhance the individuals’ adaptive competences and capabilities.
However, there is an obvious lack of behavior analytic competence within the Swedish health care system that, together with the limited behavior analytic research in the field of rare genetic syndromes composes the context for the current PhD project.
- Main supervisor: Svein Eikeseth
- Additional supervisors: Sigmund Eldevik and Börge Strömgren
More about the project
The Swedish National Center for Rett syndrome and related disorders is a habilitation center that provides specialized services to individuals that are affected by one of a selection of rare genetic syndromes.
Severe to profound intellectual disability is a significant feature of these syndromes, as is significant challenges with communication. Physical and motor problems are common, as well as malfunctioning autonomic functions.
Besides difficulties more or less directly linked to the genetic disorder, problem behaviors such as self-injury and physical aggression are common.
Effective interventions to reduce problematic behaviors by expanding a more adaptive behavioral repertoire most commonly stem from the field of applied behavior analysis.
Interventions are typically preceded by thorough assessments.
In the recent years, several studies in the field of autism have shown that telehealth supervision of varegiver administered procedures of assessment and behavioral interventions can be highly effective at reducing problematic behaviors.
Although there is a substantial body of research supporting a range of behavior analytic procedures of assessment and intervention, there is limited research on the assessment and treatment of problematic behavior within the field of rare genetic disorders.
Magnus Starbrink, tlf: 00 46(0)76-818 59 32