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.
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
