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CompletedNCT04168034iPa2PaJIAUpdated Apr 6, 2021

iParent2Parent Program for Parents of Children With Juvenile Idiopathic Arthritis

An interventional study of iParent2Parent Program and Waitlist Control in JIA, sponsored by The Hospital for Sick Children. Completed at 2 sites in Canada. Open to participants aged 18 Years to 100 Years. Per ClinicalTrials.gov, last updated 2021-04-06.

Sponsored by The Hospital for Sick Children · Not applicable, Interventional, and Treatment

Phase
Not applicable
Study type
Interventional
Enrollment
6
Allocation
Randomized
Ages
18 Years to 100 Years
Sex
All
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Study 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).

Read the 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.

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Conditions studied

  • JIA

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In context

Arthritis, Juvenile

352 studies on the registry are indexed under Arthritis, Juvenile; 92 are open to participants now.

This study's enrollment of 6 is below the median of 50 across 225 interventional studies indexed under Arthritis, Juvenile.

Browse Arthritis, Juvenile studies →

Lead sponsor

The Hospital for Sick Children is the lead sponsor of 568 studies on the registry; 81 are open to participants now.

Of its 7 completed or terminated interventional studies of FDA-regulated products, 0 (0%) have results posted.

Counted across the registry records on this site, refreshed daily.

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Who can participate

Ages eligible
18 Years to 100 Years
Sexes eligible
All
Accepts healthy volunteers
No

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

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.)
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Study design

Phase
Not applicable
Primary purpose
Treatment
Allocation
Randomized
Intervention model
Parallel assignment
Masking
Single (Investigator)
Enrollment
6 participants (actual)

Study arms

  • Experimental
    Experimental: iParent2Parent Mentorship

    10 sessions of 20-30 minute Skype video calls conducted over 2 to 3 months

    Behavioral: iParent2Parent Program

  • Active comparator
    Waitlist Control Group

    The control group will receive standard care but without the iParent2Parent program

    Behavioral: Waitlist Control

Interventions

  • BehavioraliParent2Parent Program

    In addition to standard care, parents in the experimental group will receive the iParent2Parent program. The iParent2Parent program is a tailored peer mentorship program that provides modeling and reinforcement by peers (trained parents of children with JIA) to parents of children diagnosed with JIA.

  • BehavioralWaitlist Control

    The control group will receive standard care but without the iParent2Parent program

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What researchers measure

Primary outcomes

  1. Trial feasibility of iParent2Parent program

    Criteria for feasibility are based on studies previously conducted by our group and will be: accrual rate of \>70 percent, attrition rate of \<15percent, technical difficulties reported by \<10 percent of parents and mentors, adherence rate of \>80 percent, \<5 percent missed responses on outcome measures and high acceptability (based on qualitative analyses). Data related to the primary outcome will be recorded on investigator-developed forms.

    Time frame: At study completion; an average of 2 years

Secondary outcomes

  1. PROMIS Adult Profile 25

    29 item collection of short forms from 7 health domains: depression, anxiety, physical function, pain interference, fatigue, sleep disturbance and ability to participate in social roles and activities. The scale is scored from 1 to 5. The higher the score the worse the outcome

    Time frame: baseline; up to 12 weeks after baseline, 6 months post program

  2. Short form version of the PROMIS

    Short form version of the PROMIS battery for Social Isolation; Informational support; and Emotional support. The scale is scored from 1 to 5. The higher the score the better the outcome (emotional and informational support). The higher the score the worse the outcome for social isolation)

    Time frame: baseline; up to 12 weeks after baseline, 6 months post program

  3. Coping Health Inventory for Parents

    45-item measure of a parent's response to managing demands when a child has a serious or chronic medical condition. The lower the score, the worse the outcome. Minimum value 0 and maximum value 3.

    Time frame: baseline; up to 12 weeks after baseline, 6 months post program

  4. Parental Stress Scale

    Attempts to measure the levels of stress experienced by parents. The scale is scored from 1 to 5. The lower the score the lower the level of stress and the higher the score the higher the level of stress.

    Time frame: baseline; up to 12 weeks after baseline, 6 months post program

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Study locations

2 sites
  • The IWK Health Centre
    Halifax, Nova Scotia B3K 6R8, Canada
  • The Hospital for Sick Children
    Toronto, Ontario M5G 1X8, Canada
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References and documents

Study documents

  • Study protocol · Jan 31, 2019
  • Statistical analysis plan · Jan 31, 2019

Documents are hosted by the registry — open the source record to download them.

Individual participant data

Plan to share: No

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Updates

Tracking since Sep 25, 2026
No changes since tracking began. The registry record was last updated on Apr 6, 2021, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
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Registry details

Key details

Study ID
NCT04168034
Lead sponsor
The Hospital for Sick Children
Responsible party
Sara Ahola Kohut (Psychologist, The Hospital for Sick Children) — Principal investigator
First posted
Nov 19, 2019
Start date
Aug 15, 2019
Primary completion
Mar 16, 2020
Completion
Mar 16, 2020
Last update
Apr 6, 2021

Study contacts

Sara Ahola Kohut, PhD
principal investigator · The Hospital for Sick Children

Oversight

Data monitoring committee
Yes
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

Not currently enrolling

This study is completed, as verified in Apr 2021. You cannot join it, but the record below documents what was studied.

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