JIA
Conditions
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.
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
Sponsors
The Hospital for Sick Children
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
TREATMENT
Masking
SINGLE (Investigator)
Eligibility
Sex/Gender
ALL
Age
18 Years to 100 Years
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
* 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.)
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| 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
| Measure | Time frame | Description |
|---|---|---|
| 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. |
Countries
Canada
Outcome results
None listed