"I Understand"

Every weekend, I work in a Pediatrician’s office. One patient, a seventeen-year-old girl, has a rare genetic disorder, cystic fibrosis (CF), that causes her to have life threatening chronic lung infections. She realizes that her life expectancy is only about 30 years without a lung transplant. She recently told my boss, I’m going to refer to her as Dr. H, of a helpful online support group. This seemed an ideal support group to evaluate their message board. When I mentioned this assignment to Dr. H, she expressed an interest in reading and evaluating these posts as well and agreed to work as my partner. This association worked well because I needed the medical terms defined and Dr. H said she learned more about how adults deal with the disease.

http://dailystrength.org/c/Cystic_Fibrosis/forum/

I specifically chose posts made within the last month by people who have cystic fibrosis (the youngest was 17), however, the responses to the posts, a.k.a. the messages that we analyzed, generated from individuals, who included not only fellow cystic fibrosis patients, but also relatives and spouses. I taught Dr. H the six categories of social support introduced in the Braithwaite article. Many messages offered information support in which specific advice about lung transplants and medicine recommendations was shared. Often the advice was based on personal experiences which were freely disclosed. Tangible assistance offers direct and indirect support in the form of providing resources and aid and some endorsed future contact. We also coded responses that have esteem support in the form of compliments, relieving the person of blame, and giving feelings of worth such as: “I went through something similar, it is difficult,” or “I completely understand, it was hard for me, too.” We analyzed responses that offered network support that recommended specific sites, doctors and insurance companies that the person should contact. Messages offered emotional support by way of sympathy, understanding, encouragement, and prayer such as offering luck, hugs and kisses. There were only two instances of humor, probably because the topics were often serious or technical. After coding, Dr. H and I agreed 89.27 percent of the time (inter-rater reliability). Moreover, our data showed the same pattern as the Braithwaite, Waldron, and Finn research. Because each message typically had more than one form of social support, our data showed 70 percent of the messages used emotional support, 60 percent used information, 50 percent used esteem support, 25 percent used network support, 20 percent used tangible assistance, and 10 percent used humor. I suspect this similarity in results has to do with the overall function of the two groups. The group tested in the Braithwaite study used a support group for people with disabilities. The group I studied, in spite of the fact that it contained family members and relatives, was mainly a support group for people with a chronic debilitating illness. As the Braithwaite article states on page 142, these results support the optimal matching model (Cutrona and Suhr, 1992) that reports, “Emotional support is more likely to be given when the recipient is experiencing distressful circumstances that are not subject to his or her control.” This model also states that information can be helpful when the recipient can control the situation and can put the information to use, which explains the prevalence of information support.

In the messages I read, the network spanned the globe incorporating comments that originated anywhere from New Zealand to the United States. The disorder is so rare that the participants appreciated the wealth of information that was available to them even at a large distance, which compared to Walther and Boyd results in which people had an appreciation of the “greater expertise available” from the larger online network that spans a large social distance. I feel that their relatively anonymous computer link increased the confidence of the teenagers to voice their opinions. The majority of the posts were not concentrated at any specific time allowing the messengers to post at their leisure. This is also consistent with Walther and Boyd results that users appreciate the ability to craft messages carefully and to read posts at their own convenience. This falls under the category of interaction management and access. This was an incredibly informative experience, as well as a heartwarming one. This forum is just a wonderful way for CF patients to exchange the newest and greatest advancements and share practical tips to ease their daily pain. Their willingness to help definitely contradicts Wallace’s Helping and Number Factors.

Because I became emotionally involved, I actually read many more than 20 messages. There appeared to be a central core of individuals who have been corresponding for two years, who are familiar with the details of the other’s lives because their screen name is hyperlinked to a personal diary. When they responded to a posting, they definitely interacted with each other and not just to the person who posted. For example, one seventeen year old accidentally posted her response three times and then wrote how she was embarrassed. Another member made a joke about it, made reference to a previous communication and never addressed the original posting. Moreover, their sense of community was evident in the way many members greeted new participants. “You’ll like us.” “We welcome you.” This social network community has strong bonding emotional (homophilic sp) ties stemming from their common goals and identity, with a wealth of social capital. They share skills (of new treatments), knowledge (by their experiences), resources (insurances and medical facilities), a common language of slang medical terms (for example Tobi means an inhaled antibiotic)and have a history of reciprocating emotional support through the trying times. They discussed unique outside information (such as a cousin using a new machine for distributing medication) and debated the usefulness of these weak ties. Their strong group attraction is consistent with Social Identity Deindividuation theory because they have such a strong social identity and anonymity. This group represents the quintessential caring online community.