Isolated but not alone
Kennedy, Elizabeth T.
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On-line support groups have become an accepted place for families to seek support concerning their children with special needs. Recently, an increased survival rate of the premature infant has been associated with stresses and disruptions in the lifestyles of families. Research evidence is almost non-existent with regards to studying the characteristics of online support groups for parents of children with chronic health problems and for understanding the families' point of view with regards to prematurity. The purpose of this qualitative study, using an ethnographic design, was to describe and understand the lived experiences of families who participate in the Preemie-L Internet support group for families with premature children. The theoretical framework for analysis used a symbolic interactionist theoretical perspective. The presented findings provide evidence that these virtual communities produce global, intercultural commonalties that cannot be neatly separated into offline and online realties. The stories that the family members told, as observed through computer-mediated communication, confirmed that there are long-term implications that effect the well-being of the families as related to on-going health problems, forced relationships with professionals, and an overlay of on-going psychological stress. Positive resources gained from the online support group were informational and social support. Themes that arose from the data show that meaningful interaction on the listserv provided opportunities to problem solve from collective experience that influenced the development of self-efficacy and control over their individual situation. Educational implications stress the importance of professionals understanding the families' perspective and to understand the benefits of online support groups as a positive coping resource. Outcomes provide evidence to assist with the development of public, educational, and health policy to support the families in a life-span approach. The need to follow these children and families into the later school years and young adulthood was implicated.
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