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Completed

NCT Number: NCT04168034

iParent2Parent Program for Parents of Children With Juvenile Idiopathic Arthritis

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).

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Key information

Conditions

JIA

Age range

18 year–100 year

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

The IWK Health Centre, Halifax, Nova Scotia, Canada

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About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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.)

Treatment and study plan

iParent2Parent Program

Behavioral

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.

Waitlist Control

Behavioral

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

Primary outcomes

  1. Trial feasibility of iParent2Parent program

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

    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.

Secondary outcomes

  1. PROMIS Adult Profile 25

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

    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

  2. Short form version of the PROMIS

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

    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)

  3. Coping Health Inventory for Parents

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

    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.

  4. Parental Stress Scale

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

    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.

Sponsors and collaborators

Lead sponsor

The Hospital for Sick Children

Other

Registry information

Official study title

The iParent2Parent Program: Peer Mentoring for Parents of Children With Juvenile Idiopathic Arthritis

Acronym: iPa2PaJIA

Important dates

Study start
2019
Primary completion
2020
Study completion
2020
First posted
Nov 19, 2019
Registry last updated
Apr 6, 2021

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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