Preliminary Study of the Effects of a Dysphagia Support Group on Quality of Life.

Abstract

Dysphagia (swallowing difficulties) can greatly decrease quality of life for individuals with dysphagia and can lead to caregiver burden and third-party disability. Support groups have been shown to be effective in improving quality of life in a range of conditions, through allowing individuals to form connections with those with shared experiences and sharing and learning about relevant resources and coping skills. However, no research on the effects of dysphagia support groups on quality of life has been conducted. This preliminary study aimed to determine whether a virtual support group, facilitated by speech-language pathologists, could positively affect quality of life in similar ways for adults with dysphagia and their family caregivers. Pre- and postsupport group surveys were sent to participants to gain information about their dysphagia, demographics, and support group feedback (e.g., access to resources). Questions were mainly multiple choice, with three open-ended questions related to the support group. Eight individuals participated in the surveys, with four completing both pre- and postsession surveys. Seven of eight individuals reported that they felt a support group could improve their quality of life, with the eighth being unsure. Qualitative data found the support group offered both informational (e.g., resource access) and psychosocial support (e.g., knowledge that they were not alone, emotional support). These initial results suggest that a dysphagia support group could fill a gap in the health care system to offer more holistic support to individuals with dysphagia and their family caregivers.