Connecting care circles: co-development of a digital platform to improve communication between professional caregivers and family members of adults with profound autism in residential care

Effective collaboration between professional caregivers and families is fundamental to quality residential care for individuals on the autism spectrum requiring 24/7 care (i.e., “profound autism”). However, maintaining consistent communication and care coordination is a challenge. To address this, we designed a web-based platform and phone application to streamline communication and care coordination between professional caregiving teams and families (Pletly). Our main objective was to iteratively build on Pletly’s original family member-facing features and functionality to create a new professional-facing platform, and improve communication channels between professional caregivers and family members. Using a mixed-methods and community-partnered participatory design, we co-developed these new features with residential caregiving partners. Through 3 rapid prototyping cycles involving 9 professional caregivers and 9 family members, feedback was gathered on the technology’s usability, feasibility, acceptability, appropriateness and its potential impact in a residential care setting to optimize care communication between caregiving teams of adults with profound autism. Our secondary objective was to gather preliminary data on hypothesized secondary outcomes of this technological intervention, such as increasing family’s awareness of loved one’s experiences and family’s engagement and collaboration with professional care teams, and others. Participants rated the developing prototypes as highly acceptable, appropriate, feasible, and with excellent usability. Both family members and professionals saw Pletly’s greatest potential impact was in the realm of interpersonal connections – both in terms of family members’ connection to their loved ones and their daily activities, and in professionals’ connection to family members. This was followed by both groups agreeing they would be better informed, engaged and collaborative in caring for care recipients. This feedback was shared with the development team to ensure subsequent iterative improvements are maximally responsive to community’s needs. Results suggest that the communication technology developed in this study (Pletly) has potential to improve communication in care circles for autistic individuals living in residential care. Future research should experimentally evaluate its anticipated impact in residential care facilities and other sectors in which teaming between family members and professional caregivers is essential for high quality care, such as in aged care and special education.