Recruitment and retention in a longitudinal palliative care study

Sherman, Deborah Witt; McSherry, Christina Beyers; Parkas, Valerie; Ye, Xiang Y.; Calabrese, Miriam; Gatto, Maria

doi:10.1016/j.apnr.2005.04.003

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Volume 18, Issue 3 , Pages 167-177, August 2005

Recruitment and retention in a longitudinal palliative care study☆

Deborah Witt Sherman, PhD, APRN, ANP, PCM, BC, FAAN
- College of Nursing, New York University, New York, NY 10003, USA
Christina Beyers McSherry, RN, MA
- New York University, Fair Haven, NJ 07704, USA
- Tel.: +1 212 998 5316.
Valerie Parkas, MD
- Mount Sinai Medical Center, One Gustave Levy Place, New York, NY, USA
- Tel.: +1 212 241 0701.
Xiang Y. Ye, MS
- Department of Biostatistics, New York University Medical Center, First Avenue and 38th Street, New York, NY, USA
- Tel.: +1 212 263 6933.
Miriam Calabrese, RN, MA, APRN, BC-PCM
- Bayport, NY 11705, USA
- Corresponding author. Tel.: +1 212 998 5316, (home): +1 845 294 6974; fax: +1 845 294 8446.
- Tel.: +1 631 363 0980.
Maria Gatto, RN, MA, APRN, BC-PCM
- Hawthorne, NJ 07506, USA
- Tel.: +1 973 304 058.

Received 4 August 2004; received in revised form 5 January 2005; accepted 24 April 2005.

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.