Mobilizing support in home and community care with Tyze Personal Networks Client: Young boy with complex physical care needs Challenge: Coordination of multiple care providers Goal: Connect family, friends and health care providers to support care Outcome: Enhanced informational and emotional support A recent innovative partnership with Tyze Personal Networks builds on the agency’s strength in pioneering health practices and delivering high-quality and compassionate care. This partnership represented a natural fit with Saint Elizabeth’s belief in the strength of people and their communities, and its drive to implement new and innovative approaches in client care. Saint Elizabeth partnered with Tyze Personal Networks to explore the feasibility of connecting their home care clients, family caregivers and health care providers in an online environment. Over the course of a two-year research study, 50 participants were engaged in focus groups, interviews and pilot networks to better understand the types of outcomes that can be achieved through the use of Tyze. Tyze is an online tool that makes it easy for people to help one another, especially when times are tough. Tyze networks are private. They are often created by a family caregiver who then sends invitations to family members, friends and neighbours to join the network. These “network members” can come together to share the care for an individual (or a caregiver) on Tyze. It allows people to make appointments, share documents, store important information, send messages and create tasks, as well as post stories and photos. In this way, Tyze mobilizes informational, instrumental and emotional support for home care clients and their family caregivers. This article highlights the experience of a family caregiver who used Tyze to organize and coordinate a complex care situation at home. Client Peter* was a young boy receiving home care from Saint Elizabeth. He had multiple serious medical conditions that required many hours of intensive care and therapy services from multiple providers in a variety of settings, including his home. Peter’s grandmother, Angela, was his primary caregiver, and she balanced her role in providing care with many other day-to-day priorities, including a part-time job and the maintenance of social and family relationships. Peter required constant supervision and could not be left alone. Aside from a few respite care hours each week, Angela was overseeing every aspect of his care. Challenge As Peter’s health deteriorated and he required more frequent and complex care, it became increasingly difficult for Angela to coordinate all of the necessary service providers, equipment and supplies. She was also having a hard time updating friends and family about changes in his condition and important care decisions. She was spending many long and stressful hours each day on the telephone, often repeating the same information many times to different people. Goal Suzanne, a Saint Elizabeth rehabilitation staff member who worked with Peter on a weekly basis, identified the opportunity for Angela to participate in the pilot study, where she would create a Tyze network to assist her with organizing Peter’s care. With help from Suzanne and her research team, Angela created a Tyze network with this goal statement: “This network is for Peter’s family, friends and health care providers to come together to coordinate and communicate about his care.” Angela invited more than 20 people to participate, including family, friends and several Saint Elizabeth home care staff. Outcome Over the course of the final three months of Peter’s life, the network was bustling with activity. Angela used it to share stories and photos of fun activities she did with Peter and to celebrate every advance he made in his treatment or therapy. She used the network’s calendar feature to coordinate care visits from various home care professionals, keep track of upcoming appointments, and schedule visits with family and friends. She also used the network to post information about new equipment, and to coordinate training sessions for family and friends so they could learn how to use the equipment in her home. During this time there were also several medical crisis situations, where Peter was taken immediately to the emergency department and admitted to hospital. In these stressful situations, Angela was able to use her Tyze to send an urgent message to all network members, notifying them of the situation. In one quick step she was able to update everyone, eliminating the need to make multiple individual phone calls to friends and family, or contact the health care providers one at a time to reschedule upcoming appointments. While Angela originally set out to use her Tyze network to share information and coordinate care visits, she was pleasantly surprised by the encouragement and support provided by the people in the network. In a follow-up interview about her experiences using Tyze, she reported, “It was informationally supportive for me, and also emotionally supportive, especially on the last message I sent [about the memorial service], because I discovered that people were there for me.” Angela was very keen to share her story, and hoped others would have the opportunity to use Tyze and benefit from it in the same way as she was. “I think it’s an absolute must if you’re a caretaker; it’s an absolute must … I found it just a godsend. You’re so caught up in looking after the child or your family member. And it just took a lot of the ‘Why didn’t you call me?’ stress off, you know?” Angela and Peter’s case reinforces the benefits of Tyze networks to disseminate information to friends, families and professionals and to increase their knowledge about how to pitch in and support the client and caregiver. The Saint Elizabeth Tyze network also demonstrates the power of a network model of care. References available upon request. Justine Toscan, Msc (Health Studies and Gerontology), studied at the University of Waterloo and brings knowledge and experience in family caregiver education and support to her role of Research Associate at Saint Elizabeth. * Editor’s note: Client and staff names have been changed to maintain confidentiality.