ALS Association Survey Focuses on Caregiver Needs and Well-being

ALS Focus has opened a new survey looking specifically at the needs and challenges of caregiving for people with amyotrophic lateral sclerosis (ALS).

Survey responses are expected to influence ALS programs and policy decisions. Register here to participate if you are an adult caregiver and live in the United States. Former caregivers may also take part.

ALS Focus is a program run by the ALS Association that uses surveys (about four each year) to learn more about the needs and burdens of patients and their caregivers. A better understanding of individual experiences throughout the disease journey is expected to benefit the entire ALS community.

In a recent episode of Connecting ALS, a weekly association podcast, Sarah Parvanta, PhD, and director of ALS Focus, spoke about this third survey project. Her comments appeared in an ALS Association blog post.

“I was really excited about … designing questions for caregivers specifically because of how important they are in the fight against ALS. Thus far we’ve had two Focus surveys that have been for people with ALS and their caregivers, but a lot of those questions have asked about the experiences of the person with ALS directly,” Parvanta said.

“This time we wanted to give voice to caregivers: what their needs are, what kinds of programs would help them most, and what their concerns are for themselves and their quality of life. And so being able to highlight how important their role is and how much they mean to this community, and for them to know that others are really looking out for their wellbeing as well,” she added.

Previous recent surveys focused on the insurance needs and financial burden of ALS, and learning what matters most to patients and caregivers. The matters most survey is ongoing.

Parvanta said the caregiver survey lists a wide range of ALS Association caregiver programs, and asks participants which ones they use, and of those, which ones are most helpful.

“Those kinds of questions are really designed to tell our care services teams and those care services programs that the ALS Association provides: what direction do we need to go in now? These are the types of trainings our caregivers are saying that they need,” she added. “Let’s fill those gaps. Let’s make sure those services are available, or let’s enhance them and make them more accessible to the community.”

Other questions address the psychological, emotional, and mental health side of caregiving, and a caregiver’s overall quality of life.

“We want to know how we can care for our caregivers and make sure they’re okay too, because they have a role that’s so important. And they’re putting a lot of time and energy into that. And they’re doing it in a very selfless way, in many cases,” Parvanta said.

Go here to listen to the full podcast.

The association intends to use survey data to also press for needed changes in the U.S. healthcare system. All survey information, stripped of any identifying or personal information, will be made available to scientists, pharmaceutical companies, and others stakeholders globally.

Survey responses are kept anonymous, and are estimated to take about 15 to 20 minutes to complete. Survey results will be disclosed in the association’s blog, and be the basis of various presentations and publications in peer-reviewed journals.

Anyone with questions regarding registration or the survey can email [email protected].