title: Sampling challenges in end-of-life research: case-finding for family informants.
abstract: BACKGROUND
  Research on end-of-life care is hampered by challenges in accessing appropriate subjects for data collection. Although families of decedents are rich sources of research data, they are underutilized, most likely due to the access difficulties they present to investigators.
  
  
  OBJECTIVE
  To describe case-finding strategies that can achieve a large and representative sample of family informants for research studies about end-of-life care.
  
  
  METHODS
  Case-finding strategies were developed and honed over the course o fthree epidemiological studies on end-of-life care. Family location information was culled from death certificates and a combination of public and commercial sources.
  
  
  RESULTS
  The researchers generated large random samples of study-eligible decedents and, using the case-finding strategies described, recruited family members of decedents as informants. By the third study, two-thirds of family members were located and interviewed within the narrow time frame of 2-5 months following the death of their loved one.
  
  
  CONCLUSIONS
  Epidemiological studies on end-of-life, using large random samples of decedents and their family members, are feasible when armed with an array of effective case finding strategies.
authors.affiliation: School of Nursing, Center for Ethics in Health Care, Oregon Health & Science University, Portland 97210-3098, USA. tildenv@ohsu.edu
authors.forename: Virginia P
authors.initials: VP
authors.lastname: Tilden
authors.forename: Linda L
authors.initials: LL
authors.lastname: Drach
authors.forename: Susan W
authors.initials: SW
authors.lastname: Tolle
authors.forename: Anne G
authors.initials: AG
authors.lastname: Rosenfeld
authors.forename: Susan E
authors.initials: SE
authors.lastname: Hickman
mesh_terms: D003625:Data Collection / Q000379:methods*; D016208:Databases, Factual; D003644:Death Certificates; D006801:Humans; D009524:Newspapers as Topic; D015399:Nursing Research / Q000379:methods*; D009922:Oregon; D011996:Records; D013727:Terminal Care / Q000706:statistics & numerical data*