Bullying in Youth With Muscular Dystrophy and Congenital Myopathies
4. november 2022 oppdatert av: 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.
Studieoversikt
Status
Fullført
Forhold
Detaljert beskrivelse
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.
Studietype
Observasjonsmessig
Registrering (Faktiske)
29
Kontakter og plasseringer
Denne delen inneholder kontaktinformasjon for de som utfører studien, og informasjon om hvor denne studien blir utført.
Studiesteder
-
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Ontario
-
Ottawa, Ontario, Canada, K1H 8L1
- Children's Hospital of Eastern Ontario
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Toronto, Ontario, Canada, M4G 1R8
- Holland Bloorview Kids Rehabilitation Hospital
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Deltakelseskriterier
Forskere ser etter personer som passer til en bestemt beskrivelse, kalt kvalifikasjonskriterier. Noen eksempler på disse kriteriene er en persons generelle helsetilstand eller tidligere behandlinger.
Kvalifikasjonskriterier
Alder som er kvalifisert for studier
10 år til 19 år (Barn, Voksen)
Tar imot friske frivillige
N/A
Kjønn som er kvalifisert for studier
Alle
Prøvetakingsmetode
Ikke-sannsynlighetsprøve
Studiepopulasjon
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.
Beskrivelse
Inclusion Criteria:
- Muscular dystrophy or congenital myopathy diagnosis
- 10-19 years old
- Speaks and reads English or French
Exclusion Criteria:
- N/A
Studieplan
Denne delen gir detaljer om studieplanen, inkludert hvordan studien er utformet og hva studien måler.
Hvordan er studiet utformet?
Designdetaljer
Hva måler studien?
Primære resultatmål
Resultatmål |
Tiltaksbeskrivelse |
Tidsramme |
|---|---|---|
|
Demographics Form
Tidsramme: 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)
Tidsramme: 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
Tidsramme: 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
Tidsramme: 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
Tidsramme: 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)
Tidsramme: 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
Tidsramme: 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
|
Samarbeidspartnere og etterforskere
Det er her du vil finne personer og organisasjoner som er involvert i denne studien.
Samarbeidspartnere
Publikasjoner og nyttige lenker
Den som er ansvarlig for å legge inn informasjon om studien leverer frivillig disse publikasjonene. Disse kan handle om alt relatert til studiet.
Generelle publikasjoner
- 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.
Studierekorddatoer
Disse datoene sporer fremdriften for innsending av studieposter og sammendragsresultater til ClinicalTrials.gov. Studieposter og rapporterte resultater gjennomgås av National Library of Medicine (NLM) for å sikre at de oppfyller spesifikke kvalitetskontrollstandarder før de legges ut på det offentlige nettstedet.
Studer hoveddatoer
Studiestart (Faktiske)
22. januar 2021
Primær fullføring (Faktiske)
1. september 2022
Studiet fullført (Faktiske)
1. september 2022
Datoer for studieregistrering
Først innsendt
22. januar 2021
Først innsendt som oppfylte QC-kriteriene
31. januar 2021
Først lagt ut (Faktiske)
2. februar 2021
Oppdateringer av studieposter
Sist oppdatering lagt ut (Faktiske)
7. november 2022
Siste oppdatering sendt inn som oppfylte QC-kriteriene
4. november 2022
Sist bekreftet
1. november 2022
Mer informasjon
Begreper knyttet til denne studien
Nøkkelord
Ytterligere relevante MeSH-vilkår
Andre studie-ID-numre
- McAdam_Bullying
Plan for individuelle deltakerdata (IPD)
Planlegger du å dele individuelle deltakerdata (IPD)?
NEI
Legemiddel- og utstyrsinformasjon, studiedokumenter
Studerer et amerikansk FDA-regulert medikamentprodukt
Nei
Studerer et amerikansk FDA-regulert enhetsprodukt
Nei
Denne informasjonen ble hentet direkte fra nettstedet clinicaltrials.gov uten noen endringer. Hvis du har noen forespørsler om å endre, fjerne eller oppdatere studiedetaljene dine, vennligst kontakt register@clinicaltrials.gov. Så snart en endring er implementert på clinicaltrials.gov, vil denne også bli oppdatert automatisk på nettstedet vårt. .