Procedure

All interviews will take place over the phone or using the Zoom video conferencing system. Family interviews are anticipated to last 45 to 60 minutes. Demographic and socioeconomic information will be collected on families at the beginning of the interview process. This will include number of individuals in the family unit, child’s health conditions, type of medical device/technology, urban/suburban/rural community, child’s gender (as identified by the child), participant’s gender, child’s age, participant’s age, participant’s race/ethnicity, employment status of the caregivers, and access to transportation services. Families will be asked to identify all of the individuals or specialty clinics involved in the care of their child. An additional data source for the development of the case studies will include asking families to track their health resource use over a 3-week period. This time frame was chosen through consultations with clinicians and researchers, and while we recognize that health resource use can vary greatly among individuals with complex chronic conditions, we did not want study procedures to place unnecessary burdens on families. Families will be provided a health resource journal with a draft template to follow. Within this diary, families will be encouraged to track encounters with services and supports needed to provide care for and support the health of their child. This includes but is not limited to ambulatory care clinic visits, inpatient stays, acupuncture, physiotherapy visits, home care visits, emergency department visits, respite care, and dental visits. Families will also be prompted to track the care coordination activities they undertake (ie, calling different clinics to arrange appointments on the same day). Additionally, we will ask study participants if they believe their 3-week time frame was representative of their average health resource use. A CAD $50 (US $40) gift certificate to either Superstore, Amazon, or Irving Gas will be provided to families in appreciation for their time.

Health care provider semistructured interviews will be composed of 3 to 4 questions developed based upon the respective family interview to reflect specifically on local context and the participating families. Interviews are anticipated to last 10 to 15 minutes over the phone or Zoom video conferencing system. This data will be used to supplement the family-reported experience, providing more context to the identified case. A CAD $10 (US $8) Tim Hortons gift card will be provided to participating care team members.