Medical Care Team

There were 20 parents who were recruited as participants from January 2015 to April 2015. Three individuals who were approached did not participate due to inconvenience and lack of time. Participants were recruited until no new additional goals were provided, and data saturation was reached. Data saturation was continuously assessed by the student research assistant who recorded field notes of the frequency and types of goals that were raised by parents. Data saturation was identified to be reached based on a discussion with the research team, and sufficient information was acquired to demonstrate common goals that were frequently identified by parents in the clinic.
The characteristics of subjects (i.e. children and adolescents) are presented in Table 1. Sixty nine percent of subjects classified as levels IV or V according to the Communication Function Classification System (CFCS). In addition, 70% of subjects were classified as levels IV or V according to the Manual Ability Classification System (MACS). Cognitive impairments were assessed informally by the healthcare professional team. Children and adolescents were identified to have cognitive impairments based on their level of understanding during discussions in clinical appointments, such as their processing level of information, responsiveness to questions, and communication with healthcare professionals. All subjects were identified to have cognitive impairments, which may affect their ability to understand and set goals in a discussion with their parents and healthcare professional team.Table 1

Subject characteristics

Characteristics	Subjects, N = 20
Age (in years
mean ± SD	11.2 ± 4.3
Age range	5 -17
Gender, n (%)
Male	13 (65)
Female	7 (35)
GMFCS, n (%)
level IV	10 (50)
level V	10 (50)
MACS, n (%)
level I	1 (5)
level II	2 (10)
level III	3 (15)
level IV	5 (25)
level V	9 (45)
aCFCS, n = 19, n (%)
level I	3 (16)
level II	2 (10)
level III	1 (5)
level IV	6 (32)
level V	7 (37)
Cognitive impairments	20 (100%)

^aData unavailable for one participant

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.

Mental health service multidisciplinary teams across both health care areas will be informed of the study and made aware of the inclusion and exclusion criteria. Team members will be asked to identify patients who are eligible to participate and for whom a safety plan is clinically indicated. Mental health service professionals will inform potential participants about the study and invite them to meet the researcher. If the patient agrees, the researcher will approach the patient, provide them with a participant information sheet, and answer any questions they may have. If the patient agrees, informed consent will be obtained by the researcher. In consenting to participate, participants will also agree to the researcher accessing their medical file notes. Information on the semistructured interviews and fidelity assessment will also be provided, and consent to future contact for this purpose will be sought. Clinicians across both community health organizations will be invited to participate in semistructured interviews to discuss their experiences of delivering the intervention.
Previously established clinician champions at each site will promote recruitment within their own teams and at weekly team meetings. Doctorate in clinical psychology students, in fulfillment of their clinical research experience and under the supervision of the principal investigator, will also support data collection across sites.
Baseline assessment measures will be administered to eligible participants who have consented to participate. Following the baseline assessment, participants will be randomized (1:1) to either the SafePlan or control condition.
An overview of the study procedures is provided in Figure 1.