Social support in cyberspace: A content analysis of communication within a Huntington's disease online support group
Patient Education and CounselingPublished 13 July 2007
Neil Coulson, Heather Buchanan, Aimée Aubeeluck
Citations402
SJR quartileQ1
SJR score1.24
SNIP1.37
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TL;DR
This study suggests that exchanging informational and emotional support represents a key function of this online group, and provides a unique opportunity for health professionals to learn about the experiences and views of individuals affected by HD.
Abstract
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.
Keywords
MedicineNeuroscience
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Communication ResearchControllability of Stressful Events and Satisfaction With Spouse Support Behaviors
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AJN American Journal of NursingHuntington's Disease
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CIN Computers Informatics NursingOnline Cancer Support Groups
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American Journal of Medical GeneticsPsychological costs and benefits of predictive testing for Huntington's disease
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The Diabetes EducatorOnline Forum Messages Posted by Adolescents With Type 1 Diabetes
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American Journal of Medical GeneticsForgotten person in the huntington disease family
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The Journal of Nervous and Mental DiseaseHuntingtonʼs Chorea
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American Journal of OrthopsychiatryPsychiatric implications of presymptomatic testing for Huntington's disease.
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PubMedInternet cancer support groups: legal and ethical issues for nurse researchers.
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ICSGs are an early prototype of patient groups empowered to seek health through the use of information technology and nurses are ideally suited to advance this new area of healthcare technology.
DementiaCapturing the Huntington's disease spousal carer experience
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The purpose of this exploratory study was to capture and describe the experiences of family carers of Huntington's disease patients, specifically in relation to their Quality of Life (QoL), suggesting that QoL is negatively affected for these spousal carers.
Journal of Biosocial ScienceFamily Break-Down and Stress in Huntington's Chorea
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It is concluded that family support is an essential factor in any programme aimed at the long-term alleviation and prevention of Huntington's chorea.
Psychology Health & MedicineAdaptation to being at-risk for Huntington's Disease and the availability of genetic testing: application of a stress and coping model
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Results supported the hypothesis that within each group poorer adjustment would be related to higher genetic testing concerns, contact with HD, threat appraisals, passive avoidant coping and external locus of control, and lower levels of positive experiences with HD.
Australian Journal on AgeingTHE EFFECTS OF CAREGIVING FOR THE DEMENTED ELDERLY
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Journal of Public HealthHuntington's Disease—community care? A carer's tale
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University of Derby Online Research Archive. (University of Derby)The development and validation of a scale to measure the impact of Huntington's Disease on the quality of life of spousal carers.
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