Bullying in Youth With Muscular Dystrophy and Congenital Myopathies
2022年11月4日 更新者：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.
研究概览
详细说明
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.
研究类型
观察性的
注册 (实际的)
29
联系人和位置
本节提供了进行研究的人员的详细联系信息，以及有关进行该研究的地点的信息。
学习地点
-
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Ontario
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Ottawa、Ontario、加拿大、K1H 8L1
- Children's Hospital of Eastern Ontario
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Toronto、Ontario、加拿大、M4G 1R8
- Holland Bloorview Kids Rehabilitation Hospital
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参与标准
研究人员寻找符合特定描述的人，称为资格标准。这些标准的一些例子是一个人的一般健康状况或先前的治疗。
资格标准
适合学习的年龄
10年 至 19年 (孩子、成人)
接受健康志愿者
不适用
有资格学习的性别
全部
取样方法
非概率样本
研究人群
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.
描述
Inclusion Criteria:
- Muscular dystrophy or congenital myopathy diagnosis
- 10-19 years old
- Speaks and reads English or French
Exclusion Criteria:
- N/A
学习计划
本节提供研究计划的详细信息，包括研究的设计方式和研究的衡量标准。
研究是如何设计的？
设计细节
研究衡量的是什么？
主要结果指标
结果测量 |
措施说明 |
大体时间 |
|---|---|---|
|
Demographics Form
大体时间：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)
大体时间：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
大体时间：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
大体时间：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
大体时间：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)
大体时间：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
大体时间：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
|
合作者和调查者
在这里您可以找到参与这项研究的人员和组织。
出版物和有用的链接
负责输入研究信息的人员自愿提供这些出版物。这些可能与研究有关。
一般刊物
- Molcho M, Craig W, Due P, Pickett W, Harel-Fisch Y, Overpeck M; HBSC Bullying Writing Group. Cross-national time trends in bullying behaviour 1994-2006: findings from Europe and North America. Int J Public Health. 2009 Sep;54 Suppl 2:225-34. doi: 10.1007/s00038-009-5414-8.
- Pinquart M. Systematic Review: Bullying Involvement of Children With and Without Chronic Physical Illness and/or Physical/Sensory Disability-a Meta-Analytic Comparison With Healthy/Nondisabled Peers. J Pediatr Psychol. 2017 Apr 1;42(3):245-259. doi: 10.1093/jpepsy/jsw081.
- Whitney DG, Peterson MD, Warschausky SA. Mental health disorders, participation, and bullying in children with cerebral palsy. Dev Med Child Neurol. 2019 Aug;61(8):937-942. doi: 10.1111/dmcn.14175. Epub 2019 Feb 1.
- van Geel M, Vedder P, Tanilon J. Are overweight and obese youths more often bullied by their peers? A meta-analysis on the correlation between weight status and bullying. Int J Obes (Lond). 2014 Oct;38(10):1263-7. doi: 10.1038/ijo.2014.117. Epub 2014 Jul 8.
- Fales JL, Rice S, Aaron RV, Palermo TM. Traditional and cyber-victimization among adolescents with and without chronic pain. Health Psychol. 2018 Mar;37(3):291-300. doi: 10.1037/hea0000569. Epub 2017 Nov 20.
- Mishna F, McInroy LB, Lacombe-Duncan A, Bhole P, Van Wert M, Schwan K, Birze A, Daciuk J, Beran T, Craig W, Pepler DJ, Wiener J, Khoury-Kassabri M, Johnston D. Prevalence, Motivations, and Social, Mental Health and Health Consequences of Cyberbullying Among School-Aged Children and Youth: Protocol of a Longitudinal and Multi-Perspective Mixed Method Study. JMIR Res Protoc. 2016 May 24;5(2):e83. doi: 10.2196/resprot.5292.
- Swearer SM, Cary PT. Perceptions and Attitudes Toward Bullying in Middle School Youth: A Developmental Examination Across the Bully/Victim Continuum. Journal of Applied School Psychology. 2003 Dec 12;19(2):63-79.
- Ravens-Sieberer U, Herdman M, Devine J, Otto C, Bullinger M, Rose M, Klasen F. The European KIDSCREEN approach to measure quality of life and well-being in children: development, current application, and future advances. Qual Life Res. 2014 Apr;23(3):791-803. doi: 10.1007/s11136-013-0428-3. Epub 2013 May 18.
- Kern ML, Benson L, Steinberg EA, Steinberg L. The EPOCH Measure of Adolescent Well-Being. Psychol Assess. 2016 May;28(5):586-97. doi: 10.1037/pas0000201. Epub 2015 Aug 24.
- Iannaccone ST, Hynan LS, Morton A, Buchanan R, Limbers CA, Varni JW; AmSMART Group. The PedsQL in pediatric patients with Spinal Muscular Atrophy: feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Generic Core Scales and Neuromuscular Module. Neuromuscul Disord. 2009 Dec;19(12):805-12. doi: 10.1016/j.nmd.2009.09.009. Epub 2009 Oct 28.
研究记录日期
这些日期跟踪向 ClinicalTrials.gov 提交研究记录和摘要结果的进度。研究记录和报告的结果由国家医学图书馆 (NLM) 审查，以确保它们在发布到公共网站之前符合特定的质量控制标准。
研究主要日期
学习开始 (实际的)
2021年1月22日
初级完成 (实际的)
2022年9月1日
研究完成 (实际的)
2022年9月1日
研究注册日期
首次提交
2021年1月22日
首先提交符合 QC 标准的
2021年1月31日
首次发布 (实际的)
2021年2月2日
研究记录更新
最后更新发布 (实际的)
2022年11月7日
上次提交的符合 QC 标准的更新
2022年11月4日
最后验证
2022年11月1日
更多信息
此信息直接从 clinicaltrials.gov 网站检索，没有任何更改。如果您有任何更改、删除或更新研究详细信息的请求，请联系 register@clinicaltrials.gov. clinicaltrials.gov 上实施更改，我们的网站上也会自动更新.