Implementing Virtual Parent Support Groups for Eating Disorders Across Canada

Study Overview
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Brief Summary
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During the COVID-19 pandemic, Canada has experienced a surge in new pediatric eating disorder cases and hospitalizations and long treatment waitlists, with parents experiencing anxiety due to a lack of support. As it has not been rigorously studied, there is an urgent need to understand and mitigate the impact of the COVID-19 pandemic on children, youth, and families living with eating disorders across Canada. The investigator's proposed research has two goals. First, the investigators plan to understand the impact of the COVID-19 pandemic faced by this population throughout the country, as well as describe stakeholder views on virtual parent-led peer support groups. Given the increased burden faced by parents of children with eating disorders during the COVID-19 pandemic, the second goal is to study whether the national implementation of virtual parent-led peer support groups helps to mitigate the impact of the pandemic among affected parents. The investigators will use qualitative semi-structured interviews to gather an understanding of the impact of the pandemic on relevant stakeholders across the country. At the same time, the investigators will evaluate the feasibility and acceptability of the implementation of virtual parent-led peer support groups in several regions of Canada by examining parent and parent peer support provider experiences.

Official Title
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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

Conditions
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Eating Disorders

Intervention / Treatment
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* Behavioral: Support Group for Caregivers


Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 12 Years
Maximum Age: 100 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Health Services Research
Intervention Model: Single Group Assignment
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Stakeholder Perspectives and Virtual Parent-Led Peer Support Group<br>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. | Behavioral: Support Group for Caregivers<br>* 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.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Parent, youth, clinician, and administrator perspectives on and experiences with the COVID-19 pandemic and children, youth, and families with eating disorders | 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. | Baseline to 6 months later | 
| 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 | Perspectives qualitatively measured by semi-structured individual interviews with participants with lived experience or expertise in pediatric eating disorders during the COVID-19 pandemic. | Baseline to 6 months later | 
| Parent, youth, clinician, and administrator perspectives on factors important for implementing and sustaining virtual parent-led peer support groups | Perspectives qualitatively measured by semi-structured individual interviews with participants with lived experience or expertise in pediatric eating disorders during the COVID-19 pandemic. | Baseline to 6 months later | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change in number of parents who remain in the support group (Retention Rate) | 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. | Baseline and 3 months later | 
| Number of support groups each parent attends (Attendance Rate) | The investigators will take note of how many support groups (out of 6) each parent attends in a 3 month period. | 3 months after baseline | 
| Change in self-reported parental burden | 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). | Baseline and 3 months later | 
| Change in self-reported needs as a parent of a child with an eating disorder | 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. | Baseline and 3 months later | 
| Change in self-reported parental self efficacy and collaboration | 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. | Baseline and 3 months later | 
| Parent Peer Support Providers' Change in Readiness | 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. | Baseline and 6 months later | 
| Parent Peer Support Providers' Change in Attitudes about Evidence Based Practice | 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. | Baseline and 6 months later | 
| Parent Peer Support Providers' Change in Confidence related to the Intervention | 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. | Baseline and 6 months later | 
| Parent Peer Support Providers' Self-Reported Fidelity to Peer Support | 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. | Baseline and 6 months later | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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eating disorder, parent support group, COVID-19