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.
調査の概要
詳細な説明
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.
研究の種類
観察的
入学 (実際)
29
連絡先と場所
このセクションには、調査を実施する担当者の連絡先の詳細と、この調査が実施されている場所に関する情報が記載されています。
研究場所
-
-
Ontario
-
Ottawa、Ontario、カナダ、K1H 8L1
- Children's Hospital of Eastern Ontario
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Toronto、Ontario、カナダ、M4G 1R8
- Holland Bloorview Kids Rehabilitation Hospital
-
-
参加基準
研究者は、適格基準と呼ばれる特定の説明に適合する人を探します。これらの基準のいくつかの例は、人の一般的な健康状態または以前の治療です。
適格基準
就学可能な年齢
10年～19年 (子、大人)
健康ボランティアの受け入れ
なし
受講資格のある性別
全て
サンプリング方法
非確率サンプル
調査対象母集団
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.
説明
Inclusion Criteria:
- Muscular dystrophy or congenital myopathy diagnosis
- 10-19 years old
- Speaks and reads English or French
Exclusion Criteria:
- N/A
研究計画
このセクションでは、研究がどのように設計され、研究が何を測定しているかなど、研究計画の詳細を提供します。
研究はどのように設計されていますか？
デザインの詳細
この研究は何を測定していますか？
主要な結果の測定
結果測定 |
メジャーの説明 |
時間枠 |
|---|---|---|
|
Demographics Form
時間枠：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)
時間枠：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
時間枠：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
時間枠：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
時間枠：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)
時間枠：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
時間枠：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
|
協力者と研究者
ここでは、この調査に関係する人々や組織を見つけることができます。
出版物と役立つリンク
研究に関する情報を入力する責任者は、自発的にこれらの出版物を提供します。これらは、研究に関連するあらゆるものに関するものである可能性があります。
一般刊行物
- 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.
研究記録日
これらの日付は、ClinicalTrials.gov への研究記録と要約結果の提出の進捗状況を追跡します。研究記録と報告された結果は、国立医学図書館 (NLM) によって審査され、公開 Web サイトに掲載される前に、特定の品質管理基準を満たしていることが確認されます。
主要日程の研究
研究開始 (実際)
2021年1月22日
一次修了 (実際)
2022年9月1日
研究の完了 (実際)
2022年9月1日
試験登録日
最初に提出
2021年1月22日
QC基準を満たした最初の提出物
2021年1月31日
最初の投稿 (実際)
2021年2月2日
学習記録の更新
投稿された最後の更新 (実際)
2022年11月7日
QC基準を満たした最後の更新が送信されました
2022年11月4日
最終確認日
2022年11月1日
詳しくは
この情報は、Web サイト clinicaltrials.gov から変更なしで直接取得したものです。研究の詳細を変更、削除、または更新するリクエストがある場合は、register@clinicaltrials.gov。 までご連絡ください。 clinicaltrials.gov に変更が加えられるとすぐに、ウェブサイトでも自動的に更新されます。