title: Issues and dilemmas in conducting research with vulnerable home hospice participants.
abstract: OBJECTIVE
  To describe issues and dilemmas related to nonparticipation, attrition, and needs for assistance in research with vulnerable home hospice participants.
  
  
  METHODS
  Retrospective analysis, with descriptive statistics of the frequency of issues and dilemmas that occurred in a research study with a vulnerable population.
  
  
  RESULTS
  From a group of 113 potential participants, 16 (14.1%) people who gave initial consent were unable to participate or were lost to the study (subset I) for the following reasons: unable to give informed consent, cognitive disturbance, and physical distress. Of the 97 participants who completed testing, 28 (28.8%) required assistance (subset II) because of poor vision, physical weakness, and other physical impairments.
  
  
  CONCLUSIONS
  Loss of potential participants limited this study and hampered effect size. Research with home hospice patients required careful assessment for symptoms that precluded informed consent. Issues with cognition indicated need for a tool to assess mental acuity. Although several participants required assistance, those who completed testing expressed gratitude at being able to contribute information that they believed would benefit others.
authors.affiliation: University of Washington Tacoma, 1900 Commerce Street, Box 358421, Tacoma, WA 98402, USA. mdobratz@u.washington.edu
authors.forename: Marjorie C
authors.initials: MC
authors.lastname: Dobratz
mesh_terms: D000163:Acquired Immunodeficiency Syndrome / Q000523:psychology; D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology; D001294:Attitude to Health; D003220:Conflict, Psychological; D003430:Cross-Sectional Studies; D015577:Geriatric Assessment; D006699:Home Care Services / Q000941:ethics*; D017051:Hospice Care / Q000941:ethics* / Q000523:psychology*; D006805:Human Experimentation / Q000941:ethics*; D006801:Humans; D007258:Informed Consent; D016743:Mental Competency; D008875:Middle Aged; D020380:Needs Assessment; D009369:Neoplasms / Q000523:psychology; D009730:Nursing Assessment; D015404:Nursing Methodology Research; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D035862:Vulnerable Populations / Q000523:psychology*