Bullying in Youth With Muscular Dystrophy and Congenital Myopathies
2022년 11월 4일 업데이트: 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.
연구 개요
상세 설명
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.
연구 유형
관찰
등록 (실제)
29
연락처 및 위치
이 섹션에서는 연구를 수행하는 사람들의 연락처 정보와 이 연구가 수행되는 장소에 대한 정보를 제공합니다.
연구 장소
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Ontario
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Ottawa, Ontario, 캐나다, K1H 8L1
- Children's Hospital of Eastern Ontario
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Toronto, Ontario, 캐나다, M4G 1R8
- Holland Bloorview Kids Rehabilitation Hospital
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참여기준
연구원은 적격성 기준이라는 특정 설명에 맞는 사람을 찾습니다. 이러한 기준의 몇 가지 예는 개인의 일반적인 건강 상태 또는 이전 치료입니다.
자격 기준
공부할 수 있는 나이
10년 (어린이, 성인)
건강한 자원 봉사자를 받아들입니다
해당 없음
연구 대상 성별
모두
샘플링 방법
비확률 샘플
연구 인구
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.
설명
Inclusion Criteria:
- Muscular dystrophy or congenital myopathy diagnosis
- 10-19 years old
- Speaks and reads English or French
Exclusion Criteria:
- N/A
공부 계획
이 섹션에서는 연구 설계 방법과 연구가 측정하는 내용을 포함하여 연구 계획에 대한 세부 정보를 제공합니다.
연구는 어떻게 설계됩니까?
디자인 세부사항
연구는 무엇을 측정합니까?
주요 결과 측정
결과 측정 |
측정값 설명 |
기간 |
|---|---|---|
|
Demographics Form
기간: 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)
기간: 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
기간: 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
기간: 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
기간: 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)
기간: 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
기간: 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
|
공동 작업자 및 조사자
여기에서 이 연구와 관련된 사람과 조직을 찾을 수 있습니다.
간행물 및 유용한 링크
연구에 대한 정보 입력을 담당하는 사람이 자발적으로 이러한 간행물을 제공합니다. 이것은 연구와 관련된 모든 것에 관한 것일 수 있습니다.
일반 간행물
- 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.
연구 기록 날짜
이 날짜는 ClinicalTrials.gov에 대한 연구 기록 및 요약 결과 제출의 진행 상황을 추적합니다. 연구 기록 및 보고된 결과는 공개 웹사이트에 게시되기 전에 특정 품질 관리 기준을 충족하는지 확인하기 위해 국립 의학 도서관(NLM)에서 검토합니다.
연구 주요 날짜
연구 시작 (실제)
2021년 1월 22일
기본 완료 (실제)
2022년 9월 1일
연구 완료 (실제)
2022년 9월 1일
연구 등록 날짜
최초 제출
2021년 1월 22일
QC 기준을 충족하는 최초 제출
2021년 1월 31일
처음 게시됨 (실제)
2021년 2월 2일
연구 기록 업데이트
마지막 업데이트 게시됨 (실제)
2022년 11월 7일
QC 기준을 충족하는 마지막 업데이트 제출
2022년 11월 4일
마지막으로 확인됨
2022년 11월 1일
추가 정보
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