Clinical trial NCT04168034: iParent2Parent Program for Parents of Children With Juvenile Idiopathic Arthritis
Official title: The iParent2Parent Program: Peer Mentoring for Parents of Children With Juvenile Idiopathic Arthritis
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: JIA
Lead sponsor: The Hospital for Sick Children
Sponsor class: OTHER
First posted: 2019-11-19
Enrollment: 6
Sex: ALL
Minimum age (years): 18
Maximum age (years): 100
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: RANDOMIZED
Intervention model: PARALLEL
Primary purpose: TREATMENT

Brief summary: The iParent2Parent program matches parents of children living with arthritis with a trained parent mentor who will provide parents of children newly diagnosed with arthritis: practical coping advice and social support through shared lived experiences. This study will compare two groups of parents: those who are in the iParent2Parent program and those in the control group (no mentor).

Detailed description: Parents/primary caregiver of children with JIA are an often overlooked but essential member of their child's health care team. They are responsible for managing their child's treatment program, and act as advocates for their child to support positive adaptation to JIA and to learn self-management skills for the disease. This is in the context of managing the financial, logistical, emotional, and social demands of parenting in general. Within pediatric tertiary care centres, peer-support programs for parents of children with JIA are often limited or difficult to access. The iParent2Parent Program aims to fill this gap in services by offering a program of trained parent peer mentors who can provide practical coping advice, foster adaptive problem solving, and provide social support via shared lived experience.

Eligibility criteria: Inclusion Criteria:

* English speaking caregiver of a child diagnosed with JIA according to ILAR criteria prior to their 18th birthday
* Access to computer capable of using free Skype software

Exclusion Criteria:

* Significant cognitive impairment or major co-morbid illness of parent that impeded ability to engage in program (e.g.; psychosis, active suicidal ideation, cognitive delays that would impact ability to participate and complete questionnaires.)

Primary outcomes:
measure: Trial feasibility of iParent2Parent program
timeFrame: At study completion; an average of 2 years
Secondary outcomes:
measure: PROMIS Adult Profile 25
timeFrame: baseline; up to 12 weeks after baseline, 6 months post program
measure: Short form version of the PROMIS
timeFrame: baseline; up to 12 weeks after baseline, 6 months post program
measure: Coping Health Inventory for Parents
timeFrame: baseline; up to 12 weeks after baseline, 6 months post program
measure: Parental Stress Scale
timeFrame: baseline; up to 12 weeks after baseline, 6 months post program
Other outcomes:
Locations:
city: Halifax
country: Canada
facility: The IWK Health Centre
state: Nova Scotia
city: Toronto
country: Canada
facility: The Hospital for Sick Children
state: Ontario
Study officials:
affiliation: The Hospital for Sick Children
name: Sara Ahola Kohut, PhD
role: PRINCIPAL_INVESTIGATOR
References: