title: Recruiting older people into a large, community-based study of heart failure.
abstract: This paper highlights some of the challenges encountered when recruiting older people with heart failure into longitudinal, community-based research. It draws on the experience gained in a study to provide insights into the palliative care needs of older people with heart failure and the timing and need for service interventions. Five hundred and forty-two people with heart failure (New York Heart Association (NYHA) stages II-IV) and 213 of their informal carers were recruited from primary care practices in four areas of the UK. Ethical issues arising around gate-keeping, terminology and participant burden are discussed along with challenges faced during the recruitment process. Strategies to increase general practitioner and patient recruitment are provided. The paper concludes that prospective longitudinal studies are of particular relevance to chronic illness, and the complexity of setting up such research must be acknowledged and appropriately resourced.
authors.affiliation: Sheffield Institute for Studies on Ageing, University of Sheffield, Elmfield, Northumberland Road, Sheffield, S10 2TU, UK. s.barnes@sheffield.ac.uk
authors.forename: Sarah
authors.initials: S
authors.lastname: Barnes
authors.forename: Merryn
authors.initials: M
authors.lastname: Gott
authors.forename: Sheila
authors.initials: S
authors.lastname: Payne
authors.forename: Chris
authors.initials: C
authors.lastname: Parker
authors.forename: David
authors.initials: D
authors.lastname: Seamark
authors.forename: Salah
authors.initials: S
authors.lastname: Gariballa
authors.forename: Neil
authors.initials: N
authors.lastname: Small
mesh_terms: D017028:Caregivers; D017281:Cost of Illness; D018450:Disease Progression; D020793:Gatekeeping; D006302:Health Services Research / Q000941:ethics*; D006333:Heart Failure / Q000523:psychology / Q000628:therapy; D006801:Humans; D008137:Longitudinal Studies; D010166:Palliative Care / Q000941:ethics*; D018579:Patient Selection