title: Research participation by older adults at end of life: barriers and solutions.
abstract: The purpose of this article is to elaborate on barriers to research participation by older adults at end of life. We focus on the hospice setting and classify barriers to research participation into six domains: societal attitudes toward death, research procedures, health care organizations, agency staff, patients' families and caregivers, and patient characteristics. We characterize particular participation issues, uncertainties in participation for individuals with advanced illness, and infringements on patient self-determination, as well as potential solutions to these research challenges. Our observation of the complex palliative context includes the realization that a singular change will not have large enough impact on participation. We conclude that, along with the responsibility to expand the research base addressing the needs of dying individuals, there is also a need to understand the challenges of implementing research projects with older adults at end of life.
authors.affiliation: John A. Hartford Center of Geriatric Nursing Excellence, The University of Iowa College of Nursing, Iowa City, IA 52242, USA. Melissa-lehan@uiowa.edu
authors.forename: Melissa Lehan
authors.initials: ML
authors.lastname: Mackin
authors.forename: Keela
authors.initials: K
authors.lastname: Herr
authors.forename: Kimberly
authors.initials: K
authors.lastname: Bergen-Jackson
authors.forename: Perry
authors.initials: P
authors.lastname: Fine
authors.forename: Chris
authors.initials: C
authors.lastname: Forcucci
authors.forename: Sara
authors.initials: S
authors.lastname: Sanders
mesh_terms: D000368:Aged / Q000523:psychology*; D001293:Attitude to Death; D028744:Ethics Committees, Research; D005190:Family / Q000523:psychology; D006699:Home Care Services / Q000458:organization & administration; D006738:Hospices / Q000458:organization & administration; D006805:Human Experimentation; D006801:Humans; D015146:Midwestern United States; D015337:Multicenter Studies as Topic / Q000379:methods; D015399:Nursing Research / Q000458:organization & administration*; D010146:Pain / Q000517:prevention & control; D018579:Patient Selection; D026684:Personal Autonomy; D016032:Randomized Controlled Trials as Topic / Q000379:methods; D012107:Research Design; D035842:Research Subjects / Q000523:psychology*; D012945:Social Values; D013727:Terminal Care / Q000458:organization & administration*