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Open Access Research article

A comparison of strategies to recruit older patients and carers to end-of-life research in primary care

Barbara Hanratty1*, Elizabeth Lowson2, Louise Holmes3, Julia Addington-Hall2, Antony Arthur4, Gunn Grande5, Sheila Payne6 and Jane Seymour4

Author affiliations

1 Hull York Medical School, Department of Health Sciences, University of York, York, UK

2 Faculty of Health Sciences, University of Southampton, Southampton, UK

3 Department of Public Health and Policy, University of Liverpool, Liverpool, UK

4 School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Nottingham, UK

5 School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK

6 Division of Health Research, Lancaster University, Lancaster, UK

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Citation and License

BMC Health Services Research 2012, 12:342  doi:10.1186/1472-6963-12-342

Published: 27 September 2012

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.

Conclusion

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.

Keywords:
Patient selection; Primary health care; Caregivers; Palliative care; Aged; Recruitment to research; End-of-life care research; Research in primary care