iParent2Parent Program for Parents of Children With Juvenile Idiopathic Arthritis

JIA Clinical Trial

— iPa2PaJIA  

Official title:

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

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT04168034
• Other study ID #: 1000061063
• Status: Completed
• Phase: N/A
• Start date: August 15, 2019
• Est. completion date: March 16, 2020

Study information

• Verified date: April 2021
• Source: The Hospital for Sick Children
• Contact: n/a
• Is FDA regulated: No
• Study type: Interventional

Clinical Trial 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).

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.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 6
• Est. completion date: March 16, 2020
• Est. primary completion date: March 16, 2020
• Accepts healthy volunteers: No
• Gender: All
• Age group: 18 Years to 100 Years

Eligibility

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.)

Related Conditions & MeSH terms

• Arthritis, Juvenile
• JIA

Intervention

Behavioral:
• iParent2Parent 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.
• Waitlist Control
The control group will receive standard care but without the iParent2Parent program

Locations

Country	Name	City	State
Canada	The IWK Health Centre	Halifax	Nova Scotia
Canada	The Hospital for Sick Children	Toronto	Ontario

Sponsors (1)

Lead Sponsor	Collaborator
The Hospital for Sick Children

Country where clinical trial is conducted

Canada, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	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.	At study completion; an average of 2 years
Secondary	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	baseline; up to 12 weeks after baseline, 6 months post program
Secondary	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)	baseline; up to 12 weeks after baseline, 6 months post program
Secondary	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.	baseline; up to 12 weeks after baseline, 6 months post program
Secondary	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.	baseline; up to 12 weeks after baseline, 6 months post program