iParent2Parent Program for Parents of Children With Juvenile Idiopathic Arthritis
- Conditions
- JIA
- Interventions
- Behavioral: iParent2Parent ProgramBehavioral: Waitlist Control
- Registration Number
- NCT04168034
- Lead Sponsor
- The Hospital for Sick Children
- 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.
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 6
- 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
- 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.)
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- PARALLEL
- Arm && Interventions
Group Intervention Description Experimental: iParent2Parent Mentorship iParent2Parent Program 10 sessions of 20-30 minute Skype video calls conducted over 2 to 3 months Waitlist Control Group Waitlist Control The control group will receive standard care but without the iParent2Parent program
- Primary Outcome Measures
Name Time Method Trial feasibility of iParent2Parent program 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 Outcome Measures
Name Time Method PROMIS Adult Profile 25 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
Short form version of the PROMIS 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)
Coping Health Inventory for Parents 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.
Parental Stress Scale 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.
Trial Locations
- Locations (2)
The Hospital for Sick Children
🇨🇦Toronto, Ontario, Canada
The IWK Health Centre
🇨🇦Halifax, Nova Scotia, Canada