This exploratory study uses a multi-disciplinary team (nursing, medicine, social work) to understand clinical decision-making models employed by patients choosing to undergo hematopoetic stem cell transplant (HSGT) in a Phase II protocol at the Fred Hutchinson Cancer Research Center (FHCRC). The broad, long-term goal of this project is to add to scientific knowledge about clinical decision-making and to assist clinical researchers in providing greater support for those making such decisions. To achieve this goal, data will be collected via consent conference observations, document reviews, and in-depth interviews with individual patients, their family caregivers, as well as with members of the clinical team. Information gleaned from this study is expected to generate hypotheses that result in improved decision making processes for patients and families seeking treatment at quaternary cancer research centers.
The specific aims of this exploratory project are: 1) To describe how individuals treated at a quaternary cancer research center make decisions about participating in research. 2) To describe family caregivers' perspectives about clinical decision-making processes relative to participating in research at a quaternary cancer research center. 3) To describe clinical research professionals' understanding of the decision-making processes used by research participants' at a quaternary cancer research center. The study uses a descriptive design with qualitative methods. Data will be collected through consent conference observation, document review, and in-depth interviews. The sample consists of patients (n=35), family caregivers (n=25), attending physicians (n=10), primary nurses (n=20) and social workers (n=4). Ethnographic methods will be used for data collection. Documents provided to patients to assist with the decision-making process, as well as notations made by research staff in patients' medical records with respect to decisions will be reviewed. Consenting conferences of 10 of the 35 patients will be observed. Individual interviews will be conducted with the remaining 25 patients, and with a family caregiver identified by the interviewed patient. Surviving patients and their family caregivers will be interviewed again at day 80 post-HSCT and 1-year post-HSCT. Individual interviews also will be conducted with attending physicians who administer the consent conferences, as well as with primary nurses and social workers assigned to the interviewed patients. Follow-up focus groups with primary nurses will be conducted approximately 4 months post-initial interview. Participants will be asked semi-structured, open-ended questions about the decision-making process. Tape-recorded interviews will be transcribed and analyzed for themes, causes and explanation, relationships among people, and theoretical constructs. Findings could lead to potential changes to consent processes, forms, and care delivery to HSCT patients.

Agency
National Institute of Health (NIH)
Institute
National Institute of Nursing Research (NINR)
Type
Exploratory/Developmental Grants (R21)
Project #
5R21NR008947-02
Application #
6894693
Study Section
Special Emphasis Panel (ZRG1-NSCF (01))
Program Officer
Hare, Martha L
Project Start
2004-05-18
Project End
2006-12-31
Budget Start
2005-04-01
Budget End
2006-12-31
Support Year
2
Fiscal Year
2005
Total Cost
$200,788
Indirect Cost
Name
Fred Hutchinson Cancer Research Center
Department
Type
DUNS #
078200995
City
Seattle
State
WA
Country
United States
Zip Code
98109