Implementing Virtual Parent Support Groups for Eating Disorders Across Canada (vPLPSG)
Understanding and Mitigating the Impact of the COVID-19 Pandemic on Children, Youth, and Families Living With an Eating Disorder: A National Implementation Study of a Virtual Parent-Led Peer Support Intervention
Study Overview
Status
Status
Conditions
Conditions
Intervention / Treatment
Intervention / Treatment
Study Type
Study Type
Enrollment (Actual)
Enrollment
Phase
Phase
- Not Applicable
Contacts and Locations
Study Contact
Study Contact
- Name: Danielle Pellegrini, BSc, MPH
- Phone Number: 289-880-4149
- Email: pellegdm@mcmaster.ca
Study Locations
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Alberta
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Calgary, Alberta, Canada
- University of Calgary
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Nova Scotia
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Halifax, Nova Scotia, Canada
- IWK Health Centre
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Ontario
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Hamilton, Ontario, Canada
- McMaster University
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Participation Criteria
Eligibility Criteria
Eligibility Criteria
Ages Eligible for Study
Accepts Healthy Volunteers
Description
Inclusion Criteria:
- Have the capacity to write, speak and understand English
- Have access to a computer and internet
- Among parents enrolled in the virtual parent-led peer support groups, they must have a child or adolescent (<18 years of age) diagnosed with an eating disorder
- Among youth and parents of youth with an eating disorder in the qualitative interviews component of the study, they/their child must either be on a waiting list for eating disorder treatment, actively in treatment, or post-treatment; the youth must be <18 years of age and the parent must have a child <18 years of age
- Among clinician/administrators in the qualitative interviews component of the study, they must work within pediatric eating disorder programs or lifespan eating disorder programs.
Exclusion Criteria:
- No lived or professional experience in the field of eating disorders
- Don't have the capacity to write, speak and understand English
- Don't have access to the internet/computer
Study Plan
How is the study designed?
Design Details
- Primary Purpose: Health Services Research
- Allocation: N/A
- Interventional Model: Single Group Assignment
- Masking: None (Open Label)
Number of Arms
Arms and Interventions
Participant Group / ArmParticipant Group / Arm |
Intervention / TreatmentIntervention / Treatment |
|---|---|
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Experimental: Stakeholder Perspectives and Virtual Parent-Led Peer Support Group
Qualitative interviews regarding the impact of COVID-19 will be conducted with youth who have an eating disorder (ED), parents of youth who have an ED, ED clinicians and ED program administrators, as well as get their perspectives on parent-led peer support groups.
Three parent-led peer support groups will be started, including psychoeducation in a virtual group setting for parents who have a child or adolescent with an eating disorder.
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Engage parents in the community via this support group, so they can be supported by other parents who "know the system", can advise them on how to proceed, and empower them to help their children.
Parents will learn psychoeducation about eating disorders and how to support their children.
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What is the study measuring?
Primary Outcome Measures
Primary Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
|---|---|---|
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Parent, youth, clinician, and administrator perspectives on and experiences with the COVID-19 pandemic and children, youth, and families with eating disorders
Time Frame: Baseline to 6 months later
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Perspectives and experiences qualitatively measured by semi-structured individual interviews with participants with lived experience or expertise in pediatric eating disorders during the COVID-19 pandemic.
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Baseline to 6 months later
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Parent, youth, clinician, and administrator perspectives on virtual parent-led peer support groups to help mitigate the negative effects of COVID-19 on children, youth, and families with eating disorders across Canada
Time Frame: Baseline to 6 months later
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Perspectives qualitatively measured by semi-structured individual interviews with participants with lived experience or expertise in pediatric eating disorders during the COVID-19 pandemic.
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Baseline to 6 months later
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Parent, youth, clinician, and administrator perspectives on factors important for implementing and sustaining virtual parent-led peer support groups
Time Frame: Baseline to 6 months later
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Perspectives qualitatively measured by semi-structured individual interviews with participants with lived experience or expertise in pediatric eating disorders during the COVID-19 pandemic.
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Baseline to 6 months later
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Secondary Outcome Measures
Secondary Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
|---|---|---|
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Change in number of parents who remain in the support group (Retention Rate)
Time Frame: Baseline and 3 months later
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The investigators will compare the number of parents who consent to participate in the support group and study to the number of parents who have completed the support group and study, 3 months later.
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Baseline and 3 months later
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Number of support groups each parent attends (Attendance Rate)
Time Frame: 3 months after baseline
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The investigators will take note of how many support groups (out of 6) each parent attends in a 3 month period.
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3 months after baseline
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Change in self-reported parental burden
Time Frame: Baseline and 3 months later
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Parental burden will be assessed using the Eating Disorders Symptom Impact Scale (EDSIS) - a 24 item measure examining the impact of symptoms on parents' lives.
Minimum score is 0, maximum score is 96.
A higher score indicates that the child's eating disorder symptoms are having a greater impact on their parent (more burdensome).
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Baseline and 3 months later
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Change in self-reported needs as a parent of a child with an eating disorder
Time Frame: Baseline and 3 months later
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Parental needs will be assessed using the Carers Needs Assessment Measure (CaNAM), a 47-item questionnaire examining information received about eating disorders, support received from other people and organizations, support for self, and areas where help is needed.
The minimum score is 0, the maximum score is 64.
A higher score indicates that the carer has received sufficient information and support for themselves and their child.
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Baseline and 3 months later
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Change in self-reported parental self efficacy and collaboration
Time Frame: Baseline and 3 months later
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Parental self-efficacy and collaboration will be assessed using the Patient and Carer Collaboration Scale -C (PACCS), a 33-item questionnaire examining constructs such as hope, self-care and compassion, externalization of the eating disorder, and boundaries.
Each question is evaluated on a scale of 0 to 100, where higher values indicate positive collaboration with their child and higher parental self efficacy.
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Baseline and 3 months later
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Parent Peer Support Providers' Change in Readiness
Time Frame: Baseline and 6 months later
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The Brief Individual Readiness to Change Scale will indicate how ready parent peer support providers feel they are to change.
Higher scores indicate greater readiness to use research-based direct service techniques.
Minimum score is 0, maximum score is 20.
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Baseline and 6 months later
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Parent Peer Support Providers' Change in Attitudes about Evidence Based Practice
Time Frame: Baseline and 6 months later
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Their attitudes about evidence-based practice will be assessed using the Evidence Based Practice Attitudes Scale (EBPAS).
The subscales include requirements, appeal, openness and divergence.
The score for each subscale is created by computing a mean score for the items that load on a given subscale.
Minimum score for each subscale is 0, maximum score for each subscale is 4.
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Baseline and 6 months later
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Parent Peer Support Providers' Change in Confidence related to the Intervention
Time Frame: Baseline and 6 months later
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Their confidence related to the intervention will be assessed by administering an adapted version of the Perceived Attributes of the Principles of Effectiveness Scale (MPAS).
Higher scores are indicative of more favorable perception for virtual parent led peer support group content.
The minimum score is 18, the maximum score is 90.
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Baseline and 6 months later
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Parent Peer Support Providers' Self-Reported Fidelity to Peer Support
Time Frame: Baseline and 6 months later
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Parent peer support providers leading the virtual parent-led peer support groups will complete a self-reported measure related to rating their fidelity to peer support, outlining their adherence to peer support principles.
The minimum score is 14, the maximum score is 70.
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Baseline and 6 months later
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Other Outcome Measures
Other Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
|---|---|---|
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Parent participant experiences
Time Frame: After 3 months in groups
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Virtual parent-led peer support group experiences of parents participants, qualitatively measured by semi-structured individual interviews with parents after 3 months in virtual parent-led peer support groups.
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After 3 months in groups
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Parent Peer Support Provider experiences
Time Frame: After 6 months leading groups
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Virtual parent-led peer support group experiences of parent peer support providers, qualitatively measured by semi-structured focus group with virtual parent-led peer support groups and a focus group with parent peer support providers after 6 months of leading groups.
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After 6 months leading groups
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Collaborators and Investigators
Sponsor
Sponsor
Investigators
Investigators
- Principal Investigator: Jennifer Couturier, MD MSc, McMaster University
Study record dates
Study Major Dates
Study Start (Actual)
Study Start
Primary Completion (Actual)
Primary Completion
Study Completion (Actual)
Study Completion
Study Registration Dates
First Submitted
First Submitted
First Submitted That Met QC Criteria
First Submitted That Met QC Criteria
First Posted (Actual)
First Posted
Study Record Updates
Last Update Posted (Actual)
Last Update Posted
Last Update Submitted That Met QC Criteria
Last Update Submitted That Met QC Criteria
Last Verified
Last Verified
More Information
Terms related to this study
Keywords
Additional Relevant MeSH Terms
- Mental Disorders
- Signs and Symptoms, Digestive
- Respiratory Tract Infections
- Infections
- RNA Virus Infections
- Virus Diseases
- Respiratory Tract Diseases
- Lung Diseases
- Pneumonia, Viral
- Pneumonia
- Coronavirus Infections
- Coronaviridae Infections
- Nidovirales Infections
- Pathological Conditions, Signs and Symptoms
- Signs and Symptoms
- COVID-19
- Feeding and Eating Disorders
- Health Care Facilities Workforce and Services
- Organizations
- Health Care Economics and Organizations
- Health Personnel
- Caregivers
- Self-Help Groups
Other Study ID Numbers
Other Study ID Numbers
- 14196
Plan for Individual participant data (IPD)
Plan to Share Individual Participant Data (IPD)?
Drug and device information, study documents
Studies a U.S. FDA-regulated drug product
Studies a U.S. FDA-regulated device product
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