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Identity Development in Youth With Neuromuscular Diseases

NCT03775135 · Status: WITHDRAWN · Type: OBSERVATIONAL

Last updated 2018-12-13

No results posted yet for this study

Summary

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.

Conditions

Interventions

OTHER

Questionnaires

Different questionnaires about identity development and psychosocial functioning will be administered

Sponsors & Collaborators

  • Universitaire Ziekenhuizen KU Leuven

    lead OTHER

Principal Investigators

  • Nathalie Goemans, MD, PhD · UZ Leuven

Eligibility

Min Age
12 Years
Max Age
25 Years
Sex
ALL
Healthy Volunteers
Yes

Timeline & Regulatory

Start
2019-01-01
Primary Completion
2020-02-01
Completion
2020-02-01

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Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT03775135 on ClinicalTrials.gov