Evaluation of Online Spinal Muscular Atrophy (SMA) Support Groups

Location

CSU Ballroom

Start Date

11-4-2017 2:00 PM

End Date

11-4-2017 3:30 PM

Student's Major

Health Science

Student's College

Allied Health and Nursing

Mentor's Name

Joseph Visker

Mentor's Department

Health Science

Mentor's College

Allied Health and Nursing

Description

Spinal Muscular Atrophy (SMA) is a rare neuromuscular genetic condition that takes away the ability to perform daily tasks such as walking, eating, sleeping, and breathing. Diagnoses of diseases can often leave individuals and families feeling isolated and scared. Because of the rarity in certain types of diagnoses, it may be difficult to find support and understanding from those without the same condition. Online support groups have been used by SMA patients and those impacted by SMA diagnoses as a way to obtain information and seek support. Unfortunately, no data exists on the true impact these SMA-specific support group have on participants. Therefore the purpose of this study was to assess the extent to which participants felt empowered by the use of online Facebook© SMA support groups. Surveys were distributed to individuals on three SMA Facebook© support groups, yielding 25 responses. The survey was comprised of modified Likert type items used to measure empowerment as well as various demographic items. Approximately, 67% of individuals felt a greater sense of self worth when being involved in support groups. Further, 91.66% felt that they made new social contacts and 83.34% of participants agreed or completely agreed that they felt less lonely. Additionally, 82.34% of participants said they regularly or often felt a sense of “not being the only one”. These results indicate that online support groups have the potential to serve as an easily accessible and effective method for improving empowerment among those impacted by SMA.

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Apr 11th, 2:00 PM Apr 11th, 3:30 PM

Evaluation of Online Spinal Muscular Atrophy (SMA) Support Groups

CSU Ballroom

Spinal Muscular Atrophy (SMA) is a rare neuromuscular genetic condition that takes away the ability to perform daily tasks such as walking, eating, sleeping, and breathing. Diagnoses of diseases can often leave individuals and families feeling isolated and scared. Because of the rarity in certain types of diagnoses, it may be difficult to find support and understanding from those without the same condition. Online support groups have been used by SMA patients and those impacted by SMA diagnoses as a way to obtain information and seek support. Unfortunately, no data exists on the true impact these SMA-specific support group have on participants. Therefore the purpose of this study was to assess the extent to which participants felt empowered by the use of online Facebook© SMA support groups. Surveys were distributed to individuals on three SMA Facebook© support groups, yielding 25 responses. The survey was comprised of modified Likert type items used to measure empowerment as well as various demographic items. Approximately, 67% of individuals felt a greater sense of self worth when being involved in support groups. Further, 91.66% felt that they made new social contacts and 83.34% of participants agreed or completely agreed that they felt less lonely. Additionally, 82.34% of participants said they regularly or often felt a sense of “not being the only one”. These results indicate that online support groups have the potential to serve as an easily accessible and effective method for improving empowerment among those impacted by SMA.

Recommended Citation

Dolezal, Chelsea; Courtney Simonette; and Sydney Orr. "Evaluation of Online Spinal Muscular Atrophy (SMA) Support Groups." Undergraduate Research Symposium, Mankato, MN, April 11, 2017.
https://cornerstone.lib.mnsu.edu/urs/2017/poster-session-B/13