Grant R21CA129890

Online Narrative Interventions and Family Support for Advanced Cancer Patients

DESCRIPTION (provided by applicant) Advanced cancer engenders significant distress and existential pain for midlife patients who are confronting the possibility of an early death. Narrative (or life review) interventions designed to enhance personal dignity, meaning and purpose in life, and social connection have improved patients'well-being, but they are not widely accessible. The primary aim of this R21 is to evaluate My Living Story (MLS), a narrative and web-based social networking intervention designed to reduce psychological distress and promote existential well-being among middle aged patients with life-threatening cancer. A dignity-enhancing life story is elicited during an expert- guided telephone interview and an edited life manuscript is posted to the patient's private personalized website. The web-based format provides instructional resources to enhance the story, links to quality cancer websites and locally available resources for patients and family, and a social networking platform allowing patients to share their story. The initial life story becomes a "living" story as it is dynamically transformed by the patient and his/her invited social support network. A second aim is to determine whether outcomes are mediated by changes in generativity and/or changes in the quality of the patient's relationships with friends and family. We will also conduct descriptive analyses to explore the learning and communication processes associated with the MLS components and to document feasibility and implementation issues to guide further research with a more ethnically diverse population and greater integration of the patient's social network. One hundred patients (age 30-60) with Stage III or IV cancer will be recruited from the University of Wisconsin's Paul Carbone Comprehensive Cancer Center. A computer, home Internet access, and training will be provided, as needed. Participants will be randomly assigned to the MLS or a control group, called My Own Resources (MOR) for a 2-month intervention. MOR will receive a semi-structured phone interview to assess needs and resources and access to a website with personalized links to quality cancer websites, based on the patient's needs assessment results, and an interactive peer discussion group. All participants will complete surveys at 0, 2 and 4 months. The proposed intervention holds promise for improving the lives of advanced cancer patients and their close others in a cost-effective manner. PUBLIC HEALTH RELEVANCE: The purpose of this study is evaluate the effects of a narrative intervention that provides middle- aged advanced cancer patients with a telephone interview to elicit a dignity-enhancing life story, a well-honed life story manuscript, and a project-specific personalized website with life review educational resources embedded within a social networking platform. We hypothesize that the My Living Story (MLS} intervention will enhance existential well-being and reduce psychological distress. Exploratory analyses of possible mediators, learning processes and feasibility of implementing this intervention will also be conducted for this R21 research study. We will recruit 100 advanced cancer patients who will be randomized to MLS intervention or to a control group, called My Own Resources (MOR). MOR participants receive a needs assessment telephone interview, a summary of their results with recommended resources, and a personalized website with links to salient information and a peer discussion blog. Both interventions are 2 months. We will survey at 0, 2 and 4 months.