​What Families Know: Reeve Summit Panel Charts Recovery of Children and Families Through Caregiver Interviews

Posted by Reeve Staff in Daily Dose on March 23, 2021 # Reeve Summit

What Families Know: Reeve Summit Panel Charts Recovery of Children and Families Through Caregiver Interviews

When the unthinkable happens and your child sustains a spinal injury, your world changes in a flash. What if you could talk to 30 families who've been through it? How might caregiving for a child with paralysis change if it was guided by the lived experience of people who have been there?

A workshop at the virtual Reeve Summit 2021 (April 27-29, 2021) explores these questions and more. A multidisciplinary team of researchers from the University of Louisville (UofL) will present the experiences of nearly 30 families with a child living with spinal cord injury, through the families' own words.

Qualitative Research Reveals Caregiving Insights to Aid Families in Navigating SCI Rehabilitation

"These families have navigated the unexpected journey of having a child with a sudden and devastating injury," says Andrea L. Behrman, a UofL physical therapist and researcher who studies activity-based therapies to promote recovery from neurologic injury. "They have faced the often unknown path ahead."

Behrman is leading an ongoing study of caregiver adaptation and its influence on family functioning during an intense, activity-based therapy program. The researchers' in-depth interviews with families have revealed insights not often heard from caregivers, she says. They provide a foundation to better aid families in navigating and succeeding on the rehabilitative path.

Surprisingly, little is known about how families adapt to having a child with spinal cord injury. Even less is understood about family functioning during intensive, restorative therapies. In studies of children with other chronic conditions, interventions that support the optimal functioning of the family and the child's physical functioning offer the best possible outcomes for the child. The UofL qualitative research aims to lay the groundwork for caregiver interventions that could be offered in parallel with physical restoration therapy to foster success and improve the child and family's quality of life.

Deepening the Understanding of How Families Adapt to Spinal Cord Injury and Intensive Therapy

Spinal cord injury in childhood abruptly disrupts the family's usual functioning. Parents suddenly shift their role from parenting to a caregiver. Family routines change. Resources such as time, money, and energy shift. Normal developmental milestones may be delayed or altogether absent. As one parent in the study noted: "I never thought that I would need to child-proof my home." The comment exemplifies an unexpected yet welcome event that occurred during the course of activity-based therapy.

"Just as children develop, parents typically develop in their parental role. But parents of children with spinal cord injury miss out on some of those 'parent milestones,'" says UofL pediatrician and ethicist Kyle Brothers, M.D., Ph.D. "Getting a child back on track developmentally means getting the parent back on track with their development as well.",

Brothers and other researchers directly involved in the UofL research will present case examples demonstrating key perspectives shared by families and caregivers during interviews. In addition to Behrman and Brothers, presenters include nurse and developmental researcher Deborah Davis, Ph.D., and developmental psychologist Margaret Calvery, Ph.D. All are based at the University of Louisville. The Leona M. and Harry B. Helmsley Charitable Trust supported the team's preliminary work, and the Craig H. Neilsen Foundation is funding the current study.

Second Annual Reeve Summit April 27-29 Features 40+ Virtual Sessions on Paralysis Topics

The second annual Reeve Summit: Where Care, Cure and Community Connect takes place April 27-29, 2021. The caregivers panel, titled "Recovery of Children with SCI through Interviews with Caregivers," (April 27, 6-7 p.m. EDT), is one of more than 40 virtual sessions. The Summit will explore topics relevant to the paralysis community, including advocacy, caregiving, employment, research, and health and wellness. Participants around the globe will have a chance to hear from experts, ask questions, and share their own experiences of living with paralysis.


The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.