When a child’s medical needs are complex and dependent on technologies like mechanical ventilators or gastrostomy tubes, the transition from hospital to home can be a scary and overwhelming process. Accessing specialized home care that safely supports a child with medical complexity is challenging because advances in technologies and paediatric practice move rapidly and not all home care clinicians have this specific training. These challenges can leave children and families feeling unsupported, distressed and frustrated with a general lack of confidence in the health care system.

Each year The Hospital for Sick Children (SickKids) discharges over 3,000 children with medical complexity and technology dependence that require specialized home care support to communities all across the province. As these numbers have been steadily increasing with improvements to paediatric medical technology, SickKids received funding from the Ontario Ministry of Health and Long-Term Care—through the Toronto Central Local Health Integration Network (LHIN) now known as Home and Community Care Support Services—to develop an integrated service called Connected Care. This program was launched in 2017 to address these longstanding concerns and to improve the child, caregiver and family experience for this population, with the COVID-19 pandemic only further amplifying the need for specialized care at home.

“The Connected Care initiative has enhanced the journey from hospital to home for children with medical complexity by delivering education for family caregivers prior to discharge, bridging transitions between care teams and care settings, offering virtual outreach for home and community care providers and partnering with organizations like VHA Home HealthCare to create system-wide change,” said Dr. Krista Keilty, Nurse Practitioner and Associate Chief Interprofessional Practice, Connected Care & System Integration at SickKids.

“By supporting safe, high-quality, evidence-informed and standardized paediatric home care for children with medical complexity, we can significantly reduce stress levels for family caregivers, build the confidence and competence of everyone involved in their care and reduce hospital readmission rates,” said Dr. Keilty.

Connected Care’s specialized paediatric education programs for home care nurses and family caregivers are guided and developed by SickKids educators, expert clinicians, family advisors and home and community care partners including VHA. These programs involve one-on-one training for family caregivers preparing to go home and virtual support after a child is discharged. This includes Connected Care on the Go!, a proof-of-concept innovation project with VHA practice and research leads funded by the Registered Nurses’ Foundation of Ontario. The study is currently piloting a mobile service that delivers specialized and customizable paediatric training supplies like teaching dolls and other aids to help home care nurses and primary caregivers practice skills or for families to extend their circle of care, while being coached virtually by a SickKids Connected Care Resource Nurse.

A Connected Care on the Go! box is packed with paediatric training supplies like teaching dolls and other aids

“By ensuring that families and the home care team receive the same quality of education—in a consistent way—both groups can feel confident that there is a shared standard of care from the hospital to home, inevitably creating better health outcomes for our patients,” said Stephanie Chu, Registered Nurse & Education and Quality Lead for Connected Care. “Although not initially motivated by the COVID-19 pandemic, this past year has highlighted the immense value of virtual education and the opportunity to extend SickKids’ expertise across the province and directly into people’s homes,” Stephanie said.

This training is further complemented and supported by Connected Care Live, a 24/7 real time, service that links home care providers with an expert SickKids Connected Care Resource Nurse to support and reinforce the skills needed to take care of a child with medical complexity and technology dependence. Some common consultations include troubleshooting paediatric medical equipment, understanding medical orders or medications and practicing specialized skills. Registered users also have access to Quick Hits, or regularly updated answers to the most commonly asked questions that arise from these virtual consults.

“This level of coordination, support, education and capacity building just isn’t something that has been seen in paediatric hospital-to-home transitions before—at least to our knowledge,” said Dr. Keilty. “Since the start of Connected Care, VHA leaders have been members of our steering committee and held positions on senior governance tables to help guide the overall strategy of the program and also assisted the piloting of our live support service, speaking to the initiative’s relevancy to the home care setting. VHA’s research team will also support the testing of Connected Care on the Go! to inform the procurement of equipment, curriculum development and a sustainable operational model for service delivery,” she said.

“This partnership is a fantastic opportunity to adapt the way we have always provided education for our paediatric nursing team—especially in the context of the pandemic—allowing us to be even more responsive to our families with children who are medically complex through individualized and distance educational opportunities,” said Dr. Sandra McKay, Director of Research at VHA Home HealthCare.

“Connected Care on the Go! ensures that the benefits and positive impacts to nursing practice and education can be realized by any nurse, regardless of their employer or geographic location, supporting safe transitions for a high risk and complex population. We are certainly proud of the consultative role VHA has played in the development of this initiative, the strong clinical relationship we have built with the Connected Care team at SickKids and the clear impact these efforts are having across the continuum of care,” Dr. McKay said.