title: A comparison of strategies to recruit older patients and carers to end-of-life research in primary care.
abstract: BACKGROUND
  Older adults receive most of their end-of-life care in the community, but there are few published data to guide researchers on recruitment to studies in primary care. The aim of this study was to compare recruitment of patients and bereaved carers from general practices in areas with different research network support, and identify challenges in obtaining samples representative of those in need of end-of-life care.
  
  
  METHODS
  Comparative analysis of recruitment from general practices to two face-to-face interview studies concerned with 1) carers' perceptions of transitions between settings for decedents aged over 75 years and 2) the experiences of older patients living with cancer at the end-of-life.
  
  
  RESULTS
  33 (15% of invitees) patients and 118 (25%) carers were interviewed. Carers from disadvantaged areas were under-represented. Recruitment was higher when researchers, rather than research network staff, were in direct contact with general practices. Most practices recruited no more than one carer, despite a seven fold difference in the number of registered patients. The proportion identified as eligible for patient interviews varied by a factor of 38 between practices. Forty-four Primary Care Trusts granted approval to interview carers; two refused. One gave no reason; a second did not believe that general practitioners would be able to identify carers.
  
  
  CONCLUSIONS
  Obtaining a representative sample of patients or carers in end-of-life research is a resource intensive challenge. Review of the regulatory and organisational barriers to end-of-life researchers in primary care is required. Research support networks provide invaluable assistance, but researchers should ensure that they are alert to the ways in which they may influence study recruitment.
authors.affiliation: Hull York Medical School, Department of Health Sciences, University of York, York, UK. Barbara.hanratty@york.ac.uk
authors.forename: Barbara
authors.initials: B
authors.lastname: Hanratty
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Lowson
authors.forename: Louise
authors.initials: L
authors.lastname: Holmes
authors.forename: Julia
authors.initials: J
authors.lastname: Addington-Hall
authors.forename: Antony
authors.initials: A
authors.lastname: Arthur
authors.forename: Gunn
authors.initials: G
authors.lastname: Grande
authors.forename: Sheila
authors.initials: S
authors.lastname: Payne
authors.forename: Jane
authors.initials: J
authors.lastname: Seymour
mesh_terms: D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology; D003266:Continuity of Patient Care; D005194:Family Practice / Q000458:organization & administration*; D006302:Health Services Research / Q000379:methods*; D006299:Health Services for the Aged; D006801:Humans; D007407:Interviews as Topic; D009369:Neoplasms / Q000523:psychology; D010166:Palliative Care; D010358:Patient Participation; D018579:Patient Selection; D012108:Research Personnel; D013727:Terminal Care