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Multicenter Study
. 2019 Aug 14;12(1):508.
doi: 10.1186/s13104-019-4543-2.

Research, recruitment and observational data collection in care homes: lessons from the PACE study

Danni Collingridge Moore  1 , Sheila Payne  2 , Lieve Van den Block  3 , Maud Ten Koppel  4 , Katarzyna Szczerbińska  5 , Katherine Froggatt  2 ; PACE (Palliative Care for Older People in care and nursing homes in Europe) Consortium
Collaborators, Affiliations
Multicenter Study

Research, recruitment and observational data collection in care homes: lessons from the PACE study

Danni Collingridge Moore et al. BMC Res Notes. .

Abstract

Objective: Care homes are a common place of death for older adults, especially those with complex health needs or dementia. Representative, internationally comparable data on care home facilities and their residents is needed to monitor health and wellbeing in this population. Identification and collection of data from care homes can be challenging and often underreported. This paper draws on the experiences of the PACE study, a cross sectional mortality follow back study conducted in six European countries.

Results: Multiple challenges were encountered in creating a sampling framework and contacting, recruiting and retaining care homes in the PACE study. Recruiting a randomly identified, representative cohort from a stratified sampling framework was problematic, as was engaging with care homes to ensure high response rates. Variation in the funding of care homes across the six countries involved in the study may explain the additional challenges encountered in England. Awareness of the challenges encountered in England in implementing an international study in care homes can inform the design and implementation of future studies within care homes. Further discussion is needed to determine the barriers and facilitators to conducting research in care homes, and how this is shaped by the focus of the study.

Keywords: Care home; Epidemiology; Long term care facility; Nursing home; Observational study; Palliative care.

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Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Recruitment and response rates, by country, in the PACE study
Fig. 2
Fig. 2
Care home providers by organizational status in each country involved in the PACE study [10]
Fig. 3
Fig. 3
Recruitment of care homes in England, in the PACE study
See this image and copyright information in PMC

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