title: Recruitment and retention in a longitudinal palliative care study.
abstract: A longitudinal feasibility study regarding quality of life and interventions for patients with advanced cancer or AIDS and their family caregivers was conducted to determine issues related to their recruitment and retention and to obtain pilot data relevant to the development of a larger study. At the completion of the study, a focus group consisting of the members of the palliative care research team was convened to identify barriers to and facilitators of the research process based on their research experience. The purpose of this article is to (1) describe recruitment, mortality rates, attrition rates, and compliance with data collection of patients and family caregivers experiencing an advanced illness and to (2) examine the researchers' perspectives regarding barriers to and facilitators of the research process that relate to patients and family caregivers, institutions, the data collection process, and their personal experiences. Implications for palliative care research are discussed.
authors.affiliation: College of Nursing, New York University, New York, NY 10003, USA. das1@nyu.edu
authors.forename: Deborah Witt
authors.initials: DW
authors.lastname: Sherman
authors.forename: Christina Beyers
authors.initials: CB
authors.lastname: McSherry
authors.forename: Valerie
authors.initials: V
authors.lastname: Parkas
authors.forename: Xiang Y
authors.initials: XY
authors.lastname: Ye
authors.forename: Miriam
authors.initials: M
authors.lastname: Calabrese
authors.forename: Maria
authors.initials: M
authors.lastname: Gatto
mesh_terms: D000163:Acquired Immunodeficiency Syndrome / Q000628:therapy*; D000328:Adult; D017028:Caregivers; D015400:Clinical Nursing Research / Q000458:organization & administration*; D003625:Data Collection; D005240:Feasibility Studies; D005260:Female; D017144:Focus Groups; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000628:therapy*; D010166:Palliative Care; D010348:Patient Care Team; D010352:Patient Dropouts; D018579:Patient Selection