Identity Development in Youth With Neuromuscular Diseases
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|ClinicalTrials.gov Identifier: NCT03775135|
Recruitment Status : Withdrawn (Changed plans)
First Posted : December 13, 2018
Last Update Posted : December 13, 2018
Up to 20% of the adolescents worldwide are diagnosed with a chronic illness. Although it's known that these young people suffer from a wide range of physical discomfort, in real life they have to cope with much more challenges whether or not caused by their physical situation. Psychiatric disorders (e.g. ASS, ADHD or depression) are more often diagnosed in this population compared to their healthy peers. The causal mechanisms for this higher risk, however, are yet unknown.
This project examines three underlying intrapersonal processes possibly having an impact on the evolution of these secondary symptoms. Previous research confirmed the significant impact of having a chronic illness on the development of identity and the association with a higher prevalence of depressive symptoms. Identity formation is a crucial developmental task to transfer from a child to an independent, responsible adult. We believe this developmental task is more at risk for youngsters and young adults suffering from a physical disability, caused by a neuromuscular disease. In this longitudinal research project, we investigate the development of identity in youth with a neuromuscular disease, compared to healthy peers and compared to a group of peers with a non-visible chronical illness. We also evaluate the impact of the degree of physical functioning on those mechanisms. Second, we examine if parental behavior and parental functioning is linked with the formation of identity in a neuromuscular populations. Finally, the impact of identity formation on psychosocial outcomes (e.g. feelings of depression and anxiety, quality of life, …) is measured.
By addressing these research questions, this project will add substantially to our knowledge on identity in chronic illness and can inform future prevention and intervention efforts targeting illness adaptation and parental functioning in order to prevent negative psychosocial outcomes and to optimize quality of life.
|Condition or disease||Intervention/treatment|
|Neuromuscular Diseases||Other: Questionnaires|
|Study Type :||Observational|
|Actual Enrollment :||0 participants|
|Official Title:||Identity Development in Youth With Neuromuscular Diseases: A Clinically Relevant But Forgotten Issue in the Transition to Adulthood|
|Estimated Study Start Date :||January 1, 2019|
|Estimated Primary Completion Date :||February 1, 2020|
|Estimated Study Completion Date :||February 1, 2020|
Children with neuromuscular diseases
Questionnaires will be administered by children with neuromuscular disease between 12 and 25 years and their parents
Different questionnaires about identity development and psychosocial functioning will be administered
- Manifestation of identity in 120 patients with neuromuscular diseases [ Time Frame: up to year 1 ]Identity development will be measured with specific questionnaires
- Psychosocial functioning in 120 patients with neuromuscular diseases [ Time Frame: up to year 1 ]Psychosocial functioning will be measures with specific questionnaires
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03775135
|Principal Investigator:||Nathalie Goemans, MD, PhD||UZ Leuven|