A Virtual Parent-led Support Group for Parents of Children and Youth With Eating Disorders: A Mixed Methods Feasibility Study Examining Acceptability, Cost and Parent Outcomes

Study Overview
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Brief Summary
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There is a gap in the literature about the feasibility and implementation of parent-led support groups for parents who have children or adolescents with eating disorders. In this study, we will be observing the experiences of 40 parents in Ontario who will virtually participate in one of 3 parent-led support groups for parents of children and youth with eating disorders. Parents will be expected to attend the virtual sessions twice a month over the course of six months. We hope to evaluate the acceptability, cost, and parental outcomes of the parent-led support groups via surveys before, during, and after the study, as well as using a post-study interview.

Official Title
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A Virtual Parent-led Support Group for Parents of Children and Youth With Eating Disorders: A Mixed Methods Feasibility Study Examining Acceptability, Cost and Parent Outcomes

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, in order to participate in the sessions have access to the internet/computer to participate in the sessions must have a child or adolescent with an eating disorder. Exclusion Criteria: don't have the capacity to write, speak and understand English don't have access to the internet/computer don't have a child or adolescent with an eating disorder

Ages Eligible for Study
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Minimum Age: 18 Years
Maximum Age: 100 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Intervention Model: Single Group Assignment
Interventional Model Description: We studied the implementation of a virtual parent-led peer support group.
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Parent Support Group<br>Support and psychoeducation in a 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 |
| --- | --- | --- |
| Change in number of parents who remain in the support group | We will compare the number of parents who initially sign up for the support group to how many parents have stayed in the support group 6 months later. | Baseline and 6 months later | 
| Number of support groups each parent attends | We will take note of how many support groups the parent attends in a 6 month period. | 6 months after baseline | 
| Cost | To assess cost, we will collect data on the costs of the technology, software, and time (of parents and the facilitator). | 12 months after baseline | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change in 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, 3 months, 6 months | 
| Change in Carer Burden | Carer 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, 3 months, 6 months | 
| Change in Carer Needs | Carer 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, 3 months, 6 months | 

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