Cure SMA has awarded a $30,000 clinical care grant to Deborah Boroughs, RN, MSN, for her project focusing on caregiver training.

Individuals with SMA have complex and unique medical needs. However, parents and other in-home caregivers often don’t receive the information and training they need, especially when the individual is discharged from the hospital. This project will provide caregiver training, and evaluate the effectiveness of this training in improving care for individuals with SMA.

Research Profile

Principal Investigator: Deborah S. Boroughs, RN, MSN
Institution: BAYADA Home Health Care
Project Title: Bridging a care delivery gap for family caregivers of children with SMA type I and type II


An educational gap currently exists, where, when, and how new knowledge is delivered to family caregivers of children with complex health needs at home. Family caregivers of children with SMA types I and types II often discover that few, if any, formal continuing education opportunities exist in the community. We propose to bridge a learning gap for family caregivers that may develop after the child is discharged from the hospital. Skill enhancement and practice opportunities are expected to increase caregiver confidence and skill level and to decrease the number of emergency room visits, re-hospitalizations, and accidental deaths at home.

Research Strategy

BAYADA Pediatrics has developed a community-based family caregiver training to provide on-going training and preparation for proper emergency response by family caregivers of children with SMA living at home. Outcomes of this proposed pilot program will be analyzed using the Framework Method. Important qualitative data gleaned from the project will be published in a white paper that can be used to develop a nationwide program to extend the training family caregivers receive in the hospital to accessible and convenient education at home in the community.

Significance of the Project

To our knowledge, nowhere in the United States is there a program for continuing education in the community for family caregivers of children with SMA. The hypothesis, aims, methods, measurements and predictions for this project are innovative, unique, and designed to yield beneficial effects. We anticipate that on-going and convenient family caregiver training will empower the caregivers of children with SMA with greater confidence and skill mastery and will lead to improved clinical outcomes that enhance and extend the lives of children with SMA across the nation.

Clinical Care Funding

This grant to Ms. Boroughs is part of $225,000 in clinical care funding that we’ll be announcing over the next few weeks. We fund clinical care research to understand the issues that affect daily life for people with SMA, from breathing to nutrition, and to improve their quality of life today. We’ll profile each of the researchers who’ve received a grant, and share how their work can benefit those affected by SMA.

Past Announcements

Dr. Nilesh Mehta
Dr. Walter Truong