Esta página se tradujo automáticamente y no se garantiza la precisión de la traducción. por favor refiérase a versión inglesa para un texto fuente.

Bullying in Youth With Muscular Dystrophy and Congenital Myopathies

4 de noviembre de 2022 actualizado por: Laura McAdam, Holland Bloorview Kids Rehabilitation Hospital

Assessing the Frequency and Experience of Bullying or Peer Victimization in Children With Muscular Dystrophy and Congenital Myopathies

Bullying is an epidemic in Canada, and rates may be underreported. Youth with a disability were more likely to be bullied that those without disabilities, specifically if the disability was visible. Research has been conducted on the prevalence and effects of bullying in youth with disabilities such as cerebral palsy, obesity, and chronic pain; however, there is a paucity of research involving youth with muscular dystrophy and congenital myopathies. The objectives of this study are to: (1) measure bullying frequency, (2) describe the types of bullying experiences; and (3) explore barriers and facilitators to dealing with bullying by youth with muscular dystrophy or congenital myopathies and their parents. The objectives will be met by an online survey and qualitative interviews of youth with muscular dystrophy and congenital myopathy and their parents.

Descripción general del estudio

Estado

Terminado

Condiciones

Descripción detallada

Bullying is an epidemic in Canada. At least one in three Canadian youth report having been bullied. Bullying is defined as intentional aggressive behaviour with the intention to harm the victim. It is characterized by an imbalance of power between the perpetrator and the victim, and is often repetitive although it does not need to be. Studies have shown that youth with chronic illness or disability were more likely to be bullied that those without disabilities, specifically if the disability was visible. Research has been conducted on the prevalence and effects of bullying in youth with disabilities such as cerebral palsy, obesity, and chronic pain; however, there is a paucity of research involving youth with muscular dystrophy and congenital myopathies. The objectives of this study are to: (1) measure bullying frequency, (2) describe the types of bullying experiences; and (3) explore barriers and facilitators to dealing with bullying by youth and their parents. The objectives will be met using a cross-sectional, multi-centre, mixed methods approach. A survey will be administered online at a single time-point to youth and their parents. Then, purposefully selected participants and their parents will complete a qualitative interview.

Tipo de estudio

De observación

Inscripción (Actual)

29

Contactos y Ubicaciones

Esta sección proporciona los datos de contacto de quienes realizan el estudio e información sobre dónde se lleva a cabo este estudio.

Ubicaciones de estudio

  • Canadá
    • Ontario
      • Ottawa, Ontario, Canadá, K1H 8L1
        • Children's Hospital of Eastern Ontario
      • Toronto, Ontario, Canadá, M4G 1R8
        • Holland Bloorview Kids Rehabilitation Hospital

Criterios de participación

Los investigadores buscan personas que se ajusten a una determinada descripción, denominada criterio de elegibilidad. Algunos ejemplos de estos criterios son el estado de salud general de una persona o tratamientos previos.

Criterio de elegibilidad

Edades elegibles para estudiar

10 años a 19 años (Niño, Adulto)

Acepta Voluntarios Saludables

N/A

Géneros elegibles para el estudio

Todos

Método de muestreo

Muestra no probabilística

Población de estudio

Youth with a muscular dystrophy or congenital myopathy diagnosis from the neuromuscular clinics at the study sites (Holland Bloorview and CHEO) will be invited to participate in the study. The youth's parents will also be invited to participate with their child.

Descripción

Inclusion Criteria:

  • Muscular dystrophy or congenital myopathy diagnosis
  • 10-19 years old
  • Speaks and reads English or French

Exclusion Criteria:

  • N/A

Plan de estudios

Esta sección proporciona detalles del plan de estudio, incluido cómo está diseñado el estudio y qué mide el estudio.

¿Cómo está diseñado el estudio?

Detalles de diseño

¿Qué mide el estudio?

Medidas de resultado primarias

Medida de resultado
Medida Descripción
Periodo de tiempo
Demographics Form
Periodo de tiempo: Through study completion, 1 year
This form was purposefully developed by the research team to capture characteristics such as age, gender, family demographics, schooling and academic success, muscular dystrophy or congenital myopathy diagnosis, comorbidities, physical function and mobility levels, and technology use. There is a participant version and a parent/guardian version.
Through study completion, 1 year
Bullying and Cyberbullying: Perpetrators, Victims and Witnesses Survey (B&C:PVWS)
Periodo de tiempo: Through study completion, 1 year
An amended version of the B&C:PVWS, developed by Mishna et al., to identify bullying and cyberbullying experiences of victims and perpetrators. The survey examines types of bullying experiences (e.g., physical, verbal, social, sexual), the context in which bullying occurs (e.g., race, sexual orientation, disability), and the participant's response to bullying and cyberbullying (e.g., sadness, actions taken, etc.). Perspectives on bullying and cyberbullying, as well as thoughts on potential interventions are sought. Questions measuring experiences of bully victimization and perpetration had good internal consistency with Cronbach alphas of .77 and .71, respectively.
Through study completion, 1 year
Bullying Perspectives
Periodo de tiempo: Through study completion, 1 year
A single question from The Bully Survey by Swearer et al. will be used to capture the youth participant's perspectives on bullying. They will be asked, "How much do you agree with each sentence?" on a 5-point scale (Totally false, somewhat false, both true and false, somewhat true, totally true).
Through study completion, 1 year
PedsQL(TM) 3.0 Neuromuscular Module
Periodo de tiempo: Through study completion, 1 year
The PedsQL(TM) 3.0 Neuromuscular Module assesses quality of life on three scales: 1) About my neuromuscular disease (17 items), 2) Communication (3 items), and 3) About our family resources (5 items). Participants are asked to indicate how much of a problem each of the statements has been for them on a 5-point Likert scale (0 = Never through 5 = Almost Always). Raw item scores are scaled linearly for a total score out of 100. As well, scale scores can be computed as an average of the total scale score. A higher score indicates better health-related quality of life (HRQoL). Two versions will be used in this study: Child Report (8-12 years old) and Teenager Report (13-18 years old), along with parent reports for each of these versions. All versions being used can be found in Appendix R. The child self-report has exemplary reliability (α = .85).
Through study completion, 1 year
KIDSCREEN-10 Index
Periodo de tiempo: Through study completion, 1 year
The KIDSCREEN-10 Index is a 10-item questionnaire developed to assess the HRQoL of children and young people 8-18 years old. Items in the questionnaire ask participants their thoughts on their health over the past week on a 5-point scale (Excellent, very good, good, fair, poor). Rasch analysis of raw scores provides a global unidimensional latent HRQoL score. Higher scores indicate better HRQoL. The KIDSCREEN-10 Index is reported to have good internal consistency (α = .82), and good test-retest reliability and stability (r = .73, ICC = .72).
Through study completion, 1 year
EPOCH Measure of Adolescent Well-being (EPOCH)
Periodo de tiempo: Through study completion, 1 year
The EPOCH assesses five positive psychological characteristics (i.e., engagement, perseverance, optimism, connectedness and happiness) that may facilitate the well-being, physical health and other positive outcomes in adulthood. Participants are instructed to indicate how much a statement describes them on a 5-point scale (Almost never, sometimes, often, very often, almost always). There are four items for each of the five domains. The EPOCH has exemplary overall reliability (α = .92).
Through study completion, 1 year
Qualitative Interview
Periodo de tiempo: Through study completion, 1 year
Participants will be purposefully selected to complete a semi-structured qualitative interview based on their survey results. Criteria for qualitative interview selection will be based on diversity of gender, school level, muscular dystrophy or congenital myopathy diagnosis, mobility, bullying and cyberbullying victimization, etc. Participants will be asked to describe specific bullying experiences, motivations, perspectives, and getting help.
Through study completion, 1 year

Colaboradores e Investigadores

Aquí es donde encontrará personas y organizaciones involucradas en este estudio.

Patrocinador

Holland Bloorview Kids Rehabilitation Hospital

Colaboradores

Children's Hospital of Eastern Ontario

Publicaciones y enlaces útiles

La persona responsable de ingresar información sobre el estudio proporciona voluntariamente estas publicaciones. Estos pueden ser sobre cualquier cosa relacionada con el estudio.

Publicaciones Generales

Enlaces Útiles

Fechas de registro del estudio

Estas fechas rastrean el progreso del registro del estudio y los envíos de resultados resumidos a ClinicalTrials.gov. Los registros del estudio y los resultados informados son revisados ​​por la Biblioteca Nacional de Medicina (NLM) para asegurarse de que cumplan con los estándares de control de calidad específicos antes de publicarlos en el sitio web público.

Fechas importantes del estudio

Inicio del estudio (Actual)

22 de enero de 2021

Finalización primaria (Actual)

1 de septiembre de 2022

Finalización del estudio (Actual)

1 de septiembre de 2022

Fechas de registro del estudio

Enviado por primera vez

22 de enero de 2021

Primero enviado que cumplió con los criterios de control de calidad

31 de enero de 2021

Publicado por primera vez (Actual)

2 de febrero de 2021

Actualizaciones de registros de estudio

Última actualización publicada (Actual)

7 de noviembre de 2022

Última actualización enviada que cumplió con los criterios de control de calidad

4 de noviembre de 2022

Última verificación

1 de noviembre de 2022

Más información

Términos relacionados con este estudio

Palabras clave

Términos MeSH relevantes adicionales

Otros números de identificación del estudio

  • McAdam_Bullying

Plan de datos de participantes individuales (IPD)

¿Planea compartir datos de participantes individuales (IPD)?

NO

Información sobre medicamentos y dispositivos, documentos del estudio

Estudia un producto farmacéutico regulado por la FDA de EE. UU.

No

Estudia un producto de dispositivo regulado por la FDA de EE. UU.

No

Esta información se obtuvo directamente del sitio web clinicaltrials.gov sin cambios. Si tiene alguna solicitud para cambiar, eliminar o actualizar los detalles de su estudio, comuníquese con register@clinicaltrials.gov. Tan pronto como se implemente un cambio en clinicaltrials.gov, también se actualizará automáticamente en nuestro sitio web. .

Ensayos clínicos sobre Distrofias Musculares

Buscar ensayos similares

Patrocinadores y Colaboradores

Condiciones médicas

Intervenciones de drogas

CROs by country

CROs in Oman

Condiciones

Enfermedades Raras

Intervenciones de drogas

Suplementos dietéticos

Patrocinador / Colaboradores

Localizaciones

Suscribir