The primary goal of this Web site resource was to enable all members of the family to have confidential access to social support from parallel members of other families going through a similar pediatric cancer experience. In addition, the Web site provided access to a library of information on the management of emotional distress, access to electronic communication with the research team, and information on issues related to childhood cancer. Although findings from studies that examine families confronting other chronic diseases suggest that computer-based interventions may provide a viable means of supporting families (Balas et al., 1996
; Brennan et al., 1995
; Gustafson et al., 1993
), data from our pilot project are equivocal and utilization was less than what others have reported among a similar population (DeMaso et al., 2000
; Farnham et al., 2002
). In fact, only 9 of the 21 participating families had at least one member access the Web site at least one time; this represented 11 individuals.
Because utilization of the site was considerably less than anticipated, it is important to consider what might enhance utilization in subsequent trials. Based on our findings, we suggest the following possibilities. First, utilization may have been affected by the timing of the provision of this type of support. In the current study, families were recruited within 6 weeks of the diagnosis of cancer (mean = 17 days) and had access to the Web site for the following 6 months. This is a time of extremely high stress for most families, when caregivers confront the multiple implications of having a child diagnosed with a life threatening disease and of handling the complex treatment regimen. Our recruitment of families at this difficult time was intentional, as our greater goal was to provide families with different ways of accessing support as they navigate this difficult period. However, the current findings suggest that this may not be the best time for families to access Web-based support. Indeed, qualitative feedback about barriers to accessing the Web site included a lack of interest in “more input of any kind,” and observations that they were “too tired” and “too overwhelmed” when at home to focus on anything beyond pressing home responsibilities. It is possible that there would have been greater interest in and use of Web-based support if it were offered after the acute phase of treatment, as families turn their attention to the chronic nature of childhood cancer and its treatment and the prolonged nature of the associated family disruption.
Second, the current results suggest that the method by which families are introduced to the Web site may influence their future use of the site. All families that received hands-on training went on to access the site, whereas only five families (24%) that received verbal instruction accessed the site. These findings are consistent with unpublished findings (Armando Rotondi, personal communication, January 10, 2008). In addition, qualitative feedback from parents in the current study revealed that 24% disliked or were unfamiliar with computers; thus, it is possible that providing hands-on training may decrease avoidance related to a perceived lack of confidence or competence. The percentage of participants reporting less comfort with computers in this small study also is higher than that reported in other Web site studies, which may also contribute to lower utilization among this sample.
Third, of the multiple components of the Web site, the discussion groups were accessed most frequently, suggesting that family members have an interest in connecting with others going through similar experiences. Unfortunately, the availability of others to join a discussion and post comments was limited to the approximately six families who had access to the site at any single point in time. Comments that were posted most often related to a desire to share the experience with someone going through a similar event. However, most participants’ attempts to access others were unsuccessful because there simply were not enough participants at any point in time. Interestingly, this did not deter a number of individuals from entering the discussion groups multiple times. For example, the two adolescent siblings logged on to the discussion group 73 times. Indeed, 13- to 17-years-olds were more likely to access the Web site than 8- to12-year-olds. These observations suggest that if more families had access to the site, there may have been greater use, particularly by caregivers and adolescents.
Finally, studies of support offered by means of the Internet (DeMaso et al., 2000
, 2006; Farnham et al., 2002
) have focused on adult caregivers or those over the age of 18 years. Although several Web sites provide Internet support for parents of children with health problems (Nolan, Camfield, & Camfield, 2008
), we were unable to identify any studies employing a Web site to address support needs of the ill child and his/her family members. Thus, it may be that the scope of such an inclusive Web site (i.e., children, adolescents, and caregiving adults) was a deterrent and in an effort to reach all, we actually decreased the desirability. Future research may include targeting specific groups within families (e.g., siblings) and customizing the Web site based on their unique developmental and experiential needs.
In summary, further investigation of the viability of a Web-based resource to enhance social support and coping among families facing childhood cancer is warranted. In order to maximize the effectiveness of this emerging modality and to provide targeted information and support, it will be important in future work to carefully consider the timing of Web-based social support opportunities, to employ hands-on training with potential users, and to assure an adequate number of users to enable conversation and support. We hope that our work stimulates further research in this area.