The COVID-19 pandemic brought loss and grief to many families. To provide some relief to them, Luz Garcini, interim director of Community and Public Health at the Kinder Institute for Urban Research and assistant professor in the Department of Psychological Sciences, developed the Paths [Senderos] resources in collaboration with community partners across south Texas.
Paths [Senderos] uses evidence-based information for building coping strategies to promote resilience in the face of loss. In June 2023, Garcini’s research team at the Kinder Institute was awarded a five-year grant from the Texas Council for Developmental Disabilities to adapt the Paths
[Senderos] resources to adults with intellectual and developmental disabilities.
Well-intentioned family members and caregivers of people with IDD often make efforts to protect those with IDD from the harsh realities of the world. Research shows that people with IDD are often left out of conversations surrounding loss and death, and they are rarely included in the planning
of communal grieving rituals.
These exclusions are often based on assumptions that people with IDD do not understand grief and loss or concerns that exposure to loss will lead to significant distress. These misconceptions may lead to disenfranchised grief, unacknowledged or unvalidated grief based on what is considered socially acceptable, which may have detrimental physical and mental health effects.
Additionally, when people with IDD lose a primary caretaker, they may encounter secondary losses, such as changes in routine, living arrangements, financial circumstances, social supports or medical care. The combination of grief from their loss and the resulting changes to their lifestyle has the potential to trigger anxiety about their future. Should these feelings go unaddressed, the person can experience significant emotional, behavioral and physical challenges.
Information and resources about loss and grief for adults with IDD are limited. Garcini’s team aims to fill the gap by adapting the Paths [Senderos] resources to create a series of short psychoeducational videos to be distributed online and via a mobile app to the IDD community. This project is undertaken in collaboration with a robust network of community organizations across Houston and surrounding areas that advocate and serve the needs of adults with IDD.
The collaborating partners bring crucial expertise and knowledge to ensure that the resources created are contextually and culturally appropriate. The partners’ feedback and ideas are not only shaping the direction of the project, but are planting seeds to build a collaborative network that will continue to work together to create opportunities to support access, equity and inclusion for IDD communities.
For more information, visit https://reach.uthscsa.edu/research/paths-senderos-building-strength-in-the-face-of-loss/
Kathryn Gonzalez
Project Manager, Department of Psychological Sciences
Luz Garcini
Assistant Professor of Psychological Sciences
Intirim Director of Community and Public Health, Kinder Institute for Urban Research