Catherine Mcgeehin Heilferty*, Holy Family University, Philadelphia, United States Track: Research Presentation Topic: Blogs, Microblogs, Twitter Presentation Type: Rapid-Fire Presentation Submission Type: Single Presentation Building: Joseph B. Martin Conference Center at Harvard Medical School Room: B-Bray Room Date: 2012-09-16 11:45 AM – 12:30 PM Last modified: 2012-09-12

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An Internet family: Parent blog use during childhood cancer treatment
Background: Family life is changed fundamentally and permanently when a child is diagnosed with cancer. Treatment for childhood cancer has evolved into a mixed-blessing labyrinth of treatment options and unstable wellness states. In everyday decisions, reflection, and activities, parents come to live in hope and despair at once. Remissions and exacerbations become the frame of the roller coaster that has been used to describe life with childhood cancer. Healthcare providers are attempting to ease the psychosocial burdens associated with cancer diagnosis by examining family Internet use during illness. To date, no research has been published on this new phenomenon of online writing and publishing stories about the experience of parenting a child through cancer diagnosis and treatment.
Objective: The narrative analysis of illness blogs created by parents during a child’s treatment for acute lymphocytic leukemia or neuroblastoma aimed (1) to synthesize data from parent blogs into one life story of childhood leukemia and one life story of neuroblastoma; (2) to identify themes about the experience expressed in blogs created by parents of children with cancer; and (3) to identify themes related to the social interaction present in blogs created by parents of children with cancer.
Method: Daily blog entries were analyzed as individual units of illness experience narrative and in relation to one another to identify thematic and linguistic similarities. Narratives were organized into categories of themes. Parents of nine children with neuroblastoma and five children with acute lymphoblastic leukemia (ALL) consented to participate in the research.
Results: Thematic categories in blogs created by parents of children with ALL and neuroblastoma shared a sense of parents’ attempts to balance the following elements: uncertainty and uncertainty management; stress and stress management; change and constants; burdens and gifts; and public life and private life. They accomplished this through reporting, expressing, reflecting, advocating, archiving and explaining. In turn, parents received psychosocial ballast from readers in the form of an orientation toward the future, affirmation, shared information, solidarity and support.
Conclusions: Illness blogs are the online textual narrative of illness experiences. They have become virtual support groups for parents and other family members living with childhood cancer. In these online narratives of the illness experience, parents express in rich detail what it is that adds to their success in surviving the experience. For the first time, in real time, these individuals are describing family life during treatment for cancer as they live it. In addition, they receive responses from and maintain relationships with what several authors named “an Internet family.” Study findings suggest that attention to parent blog content can enhance understanding of the day-to-day experiences of parents with children with cancer. Further research on illness blogs and other forms of online communication during illness is needed to incorporate family illness narratives into the plan for care and position the family firmly at the center of care.