The Data Collection, Management and Qualitative Analysis Core (""""""""Data Core"""""""") will perform two key functions to support the Center for Self-Management in Life-Limiting Illness. First, it will provide sophisticated and rigorous resources for collecting, coordinating and analyzing all aspects of data arising from the three Center Projects. Second, it will conduct two targeted qualitative research studies that help generate hypotheses about the role of self-management in life-limiting illness, and explain findings and address synergistic themes across the Projects. The interviewers and nurse interventionists for all three primary studies will reside in the core and be crosstrained to work on the different Projects as a shared resource. They will promote consistency across protocols, use common data collection tools, and administer unified patient tracking systems. The core will house a state-of-the-art data management platform to gather, clean, and store the data from all three Projects. We will apply a detailed quality control process to safeguard the completeness, accuracy and timeliness of accumulated data. Data Core staff will extract data to be made available for reports, and will conduct statistical analyses as directed by study investigators. By creating and maintaining a central database containing all enrolled patients for the various projects, the Data Core will promote synergy across the different projects. In addition, the Data Core will conduct two qualitative research studies. The first will interview a cohort of bereaved caregivers from our NINR funded Pathways study and ask them to look back retrospectively to the course of their loved one's illness, aided by trajectory data collected during that time. The goal will be exploratory, to learn more about their medical, emotional and role needs, and to identify when in the course of their loved one's illness self-management interventions would have been welcome. The second study will consist of open-ended semi-structured qualitative interviews with subjects from each of the three projects to learn about the patients'and caregivers'reactions to the self-management interventions, to identify what they found useful or intrusive, and to guide the development of future interventions.
| Bailey Jr, Donald E; Hendrix, Cristina C; Steinhauser, Karen E et al. (2017) Randomized trial of an uncertainty self-management telephone intervention for patients awaiting liver transplant. Patient Educ Couns 100:509-517 |
| Hendrix, Cristina C; Bailey Jr, Donald E; Steinhauser, Karen E et al. (2016) Effects of enhanced caregiver training program on cancer caregiver's self-efficacy, preparedness, and psychological well-being. Support Care Cancer 24:327-36 |
| Bailey Jr, Donald E; Steinhauser, Karen; Hendrix, Cristina et al. (2011) Pairing Self-Management with Palliative Care: Intervening in Life-Limiting Illness. J Nurs Healthc Chronic Illn 3:1-3 |
