Eating Disorders
Conditions
Keywords
eating disorder, parent support group, COVID-19
Brief summary
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.
Interventions
BEHAVIORALSupport Group for Caregivers
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.
Sponsors
McMaster University
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
12 Years to 100 Years
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Parent, youth, clinician, and administrator perspectives on and experiences with the COVID-19 pandemic and children, youth, and families with eating disorders | Baseline to 6 months later | 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. |
| 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 | Baseline to 6 months later | Perspectives qualitatively measured by semi-structured individual interviews with participants with lived experience or expertise in pediatric eating disorders during the COVID-19 pandemic. |
| Parent, youth, clinician, and administrator perspectives on factors important for implementing and sustaining virtual parent-led peer support groups | Baseline to 6 months later | Perspectives qualitatively measured by semi-structured individual interviews with participants with lived experience or expertise in pediatric eating disorders during the COVID-19 pandemic. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Change in number of parents who remain in the support group (Retention Rate) | Baseline and 3 months later | 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. |
| Number of support groups each parent attends (Attendance Rate) | 3 months after baseline | The investigators will take note of how many support groups (out of 6) each parent attends in a 3 month period. |
| Change in self-reported parental burden | Baseline and 3 months later | 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). |
| Change in self-reported needs as a parent of a child with an eating disorder | Baseline and 3 months later | 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. |
| Change in self-reported parental self efficacy and collaboration | Baseline and 3 months later | 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. |
| Parent Peer Support Providers' Change in Readiness | Baseline and 6 months later | 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. |
| Parent Peer Support Providers' Change in Attitudes about Evidence Based Practice | Baseline and 6 months later | 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. |
| Parent Peer Support Providers' Change in Confidence related to the Intervention | Baseline and 6 months later | 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. |
| Parent Peer Support Providers' Self-Reported Fidelity to Peer Support | Baseline and 6 months later | 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. |
Countries
Canada
Contacts
PRINCIPAL_INVESTIGATORJennifer Couturier, MD MSc
McMaster University
Outcome results
None listed