OBJECTIVE: Huntington's disease (HD) is an inherited disorder, characterized by a progressive degeneration of the brain. Due to the nature of the symptoms, the genetic element of the disease, and the fact that there is no cure, HD patients and those in their support network often experience considerable stress and anxiety. With an expansion in Internet access, individuals affected by HD have new opportunities for information retrieval and social support. The aim of this study is to examine the provision of social support in messages posted to a HD online support group bulletin board. METHODS: In total, 1313 messages were content analyzed using a modified version of the social support behavior code developed by [Cutrona CE, Suhr J. Controllability of stressful events and satisfaction with spouse support behaviors. Commun Res 1992;19:154-74]. RESULTS: The analysis indicates that group members most frequently offered informational (56.2%) and emotional support (51.9%) followed by network support (48.4%) with esteem support (21.7%), and tangible assistance (9.8%) least frequently offered. CONCLUSION: This study suggests that exchanging informational and emotional support represents a key function of this online group. PRACTICE IMPLICATIONS: Online support groups provide a unique opportunity for health professionals to learn about the experiences and views of individuals affected by HD and explore where and why gaps may exist between evidence-based medicine and consumer behavior and expectations.
OBJECTIVE:Huntington's disease (HD) is an inherited disorder, characterized by a progressive degeneration of the brain. Due to the nature of the symptoms, the genetic element of the disease, and the fact that there is no cure, HDpatients and those in their support network often experience considerable stress and anxiety. With an expansion in Internet access, individuals affected by HD have new opportunities for information retrieval and social support. The aim of this study is to examine the provision of social support in messages posted to a HD online support group bulletin board. METHODS: In total, 1313 messages were content analyzed using a modified version of the social support behavior code developed by [Cutrona CE, Suhr J. Controllability of stressful events and satisfaction with spouse support behaviors. Commun Res 1992;19:154-74]. RESULTS: The analysis indicates that group members most frequently offered informational (56.2%) and emotional support (51.9%) followed by network support (48.4%) with esteem support (21.7%), and tangible assistance (9.8%) least frequently offered. CONCLUSION: This study suggests that exchanging informational and emotional support represents a key function of this online group. PRACTICE IMPLICATIONS: Online support groups provide a unique opportunity for health professionals to learn about the experiences and views of individuals affected by HD and explore where and why gaps may exist between evidence-based medicine and consumer behavior and expectations.
Authors: Rebecca E Ready; Nicholas R Boileau; Stacey K Barton; Jin-Shei Lai; Michael K McCormack; David Cella; Nora E Fritz; Jane S Paulsen; Noelle E Carlozzi Journal: J Huntingtons Dis Date: 2019
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Authors: Siobhan Case; Valarie Jernigan; Audra Gardner; Philip Ritter; Catherine A Heaney; Kate R Lorig Journal: J Med Internet Res Date: 2009-06-24 Impact factor: 5.428
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