PCs of children with medical complexity were recruited from Complex Care Programs at SickKids, RVH, and CVH. To be eligible for the Complex Care Program, children must meet at least 1 criterion from each of the following conditions: technology dependence and/or users of high-intensity care (eg, mechanical ventilator, constant medical/nursing supervision), fragility (eg, severe/life-threatening condition, an intercurrent illness causing immediate serious health risk), chronicity (condition expected to last at least 6 more months or life expectancy less than 6 months), and complexity (involvement of at least 5 health care practitioners/teams at 3 different locations or family circumstances that impede their ability to provide day-to-day care of decision-making for a child with medical complexity) [18 ]. Children with medical complexity were also between 0 and 18 years of age at the time of study initiation. Purposive sampling guided parental participant selection to ensure diversity in role, communication experience, age, ethnicity, and location [19 (link),20 (link)].
PCs were eligible to participate if they were English-speaking, had access to the internet and a computer, and were the primary caregiver of a child with medical complexity. CTMs were approached prior to recruitment to ensure it was an appropriate time to engage in research for the families (eg, hospitalization, end-of-life, or PC physical/mental health concerns).
In this study, “NPs” refers to the nurse practitioners of children with medical complexity in the Complex Care Program, and “HCPs” refers to other hospital and community–based health care providers. CTMs comprise both NPs and HCPs together.
Every PC had their assigned Complex Care Program NP on the platform. PCs were also able to invite other members of their child’s care team (eg, CTMs like social workers, patient information coordinators, pediatricians, etc) to use C2. CTMs that registered on C2 were presented with the terms of use of the platform and the study information letter. If interested, they were approached by the study research coordinator (RC) and presented with information about the research study and the opportunity to participate. CTMs that declined to participate in the research study were still able to use C2. PCs and NPs received training before registering on C2 (duration of 30 to 60 minutes), and the training presentation was later made available on C2. In addition, CTMs could set up a disclaimer on C2 if they were away or designate time slots in which they would respond to messages (eg, 8 AM to 4 PM) to aid in setting expectations with PCs.
All research study participants received remuneration for participating in the research study. PCs were given CAD $60 (US $44.59) in gift cards (CAD $20 at baseline and CAD $40 after completing the study), and HCPs that completed the end-of-study questionnaire were entered into a draw for a CAD $100 (US $74.32) gift card. Participants that completed the end-of-study semistructured interview received an additional gift card worth CAD $20 (US $14.86). C2 also had a built-in points system where PCs received a specified number of points when completing a platform activity (ie, accessing educational material). As a usage incentive, PCs received a gift card worth CAD $5 (US $3.72) when they reached predetermined point milestones. NPs also received a CAD $5 (US $3.72) gift card for every 50 messages that they sent through C2.
PCs were eligible to participate if they were English-speaking, had access to the internet and a computer, and were the primary caregiver of a child with medical complexity. CTMs were approached prior to recruitment to ensure it was an appropriate time to engage in research for the families (eg, hospitalization, end-of-life, or PC physical/mental health concerns).
In this study, “NPs” refers to the nurse practitioners of children with medical complexity in the Complex Care Program, and “HCPs” refers to other hospital and community–based health care providers. CTMs comprise both NPs and HCPs together.
Every PC had their assigned Complex Care Program NP on the platform. PCs were also able to invite other members of their child’s care team (eg, CTMs like social workers, patient information coordinators, pediatricians, etc) to use C2. CTMs that registered on C2 were presented with the terms of use of the platform and the study information letter. If interested, they were approached by the study research coordinator (RC) and presented with information about the research study and the opportunity to participate. CTMs that declined to participate in the research study were still able to use C2. PCs and NPs received training before registering on C2 (duration of 30 to 60 minutes), and the training presentation was later made available on C2. In addition, CTMs could set up a disclaimer on C2 if they were away or designate time slots in which they would respond to messages (eg, 8 AM to 4 PM) to aid in setting expectations with PCs.
All research study participants received remuneration for participating in the research study. PCs were given CAD $60 (US $44.59) in gift cards (CAD $20 at baseline and CAD $40 after completing the study), and HCPs that completed the end-of-study questionnaire were entered into a draw for a CAD $100 (US $74.32) gift card. Participants that completed the end-of-study semistructured interview received an additional gift card worth CAD $20 (US $14.86). C2 also had a built-in points system where PCs received a specified number of points when completing a platform activity (ie, accessing educational material). As a usage incentive, PCs received a gift card worth CAD $5 (US $3.72) when they reached predetermined point milestones. NPs also received a CAD $5 (US $3.72) gift card for every 50 messages that they sent through C2.
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