Online Survey to Assess Stigma’s Impact in ALS Patients, Caregivers

Marta Figueiredo, PhD avatar

by Marta Figueiredo, PhD |

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An international team of researchers is asking adults with amyotrophic lateral sclerosis (ALS) and their family caregivers to complete an online survey about their experiences with stigma around the disease.

The results are expected to help researchers better understand negative attitudes and untrue beliefs about ALS faced by patients and their caregivers, as well as its impact on their mental health and quality of life.

This “feedback will help make recommendations for future programs targeting stigma in ALS,” according to a news release by the The ALS Association, which is supporting the study. Other supporters include the National Alliance for Caregiving and the International ALS/MND Alliance.

“People living with ALS and adult caregivers can help researchers learn more about stigma and quality of life in ALS,” the association’s release reads.

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The study, “Stigma Experienced by ALS Patients and Their Family Caregivers,” is being led by Melinda S. Kavanaugh, PhD, an associate professor of social work at the University of Wisconsin-Milwaukee, and Marion Sommers-Spijkerman, PhD, a postdoctoral fellow at University Medical Center Utrecht, the Netherlands.

Recent joint efforts from both researchers have focused on parental and children’s experiences and struggles, as well as support needs, in families living with ALS.

The online survey, available exclusively in English, includes questions about the type of experiences people with ALS and their caregivers have had. It takes about 20–30 minutes to complete.

The researchers hope to collect answers from about 300 adults with ALS and 300 adults caring for or assisting a family member with the disease. They may live anywhere in the world. If a patient wants to participate but is physically unable to, another adult may complete the survey for them, the association noted.

Participation is voluntary, and responses will remain anonymous and confidential. Responders may choose to not answer any of the questions or withdraw from the study at any time without penalty.

Collected data will be analyzed to improve understanding about the role of stigma in ALS and its potential associations with other aspects of health, including self-compassion, self-criticism, depression, anxiety, quality of life, and caregiver burden.

The information may help advance Sommers-Spijkerman’s goal to develop and validate a guided web-based self-compassion intervention aimed at reducing self-stigma in ALS patients and their main caregivers. This is the focus of a project that granted her a Milton Safenowitz Postdoctoral Fellowship grant in 2020 from the ALS Association.