Sowerby, Elley and Collingridge Moore, Danielle and Froggatt, Katherine and Payne, Sheila and Van den Block, Lieve (2016) Engaging nursing homes (NHs) in the PACE study : comparing recruitment in observational and intervention research designs. In: 8th World Research Congress of the EAPC., 2016-06-09 - 2016-06-11.
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Abstract
Background: NH residents are often excluded from epidemiological studies, demonstrating a need for representative, internationally comparable research in this area. Data on palliative care provided by NHs is reported to the Care Quality Commission in England, but the quality of care is often locally determined. Aims: To review the challenges encountered in engaging and recruiting NHs across England to the European Commission funded PACE research project; a two part study comprising of a retrospective, cross sectional survey of deaths and a cluster randomised controlled trial (RCT) of the ‘PACE Steps to Success’ end of life training intervention. Methods: Study 1 collected quantitative data from NH staff, general practitioners and relatives of 200 deceased NH residents in 50 NHs. Study 2 aimed to recruit twelve NHs, six in each arm of the RCT. The research team encountered challenges throughout the research process, including developing a representative sampling framework, obtaining ethical approvals, advertising the study and recruiting NHs. Results: Study 1 has recruited 44 NHs resulting in data on 92 deceased residents from 32 research visits made so far. Identifying NHs through random sampling resulted in fewer NHs recruited compared to advertising through the ENRICH NHs research networks. Average death rates per NH were lower than expected (3.1 per three months). Study 2 is in the process of recruiting twelve NHs with the support of local ENRICH teams by January 2016. Lack of time and resources, concerns regarding data protection and fear of opening up to potential criticism were identified as barriers to participation. Conclusions: Observational and RCT research designs in NHs require distinct recruitment processes. Whilst representativeness was attained in study 1, ensuring a rigorous random sample was not possible. In both studies, the engagement with NH research networks and informal contacts improved the rate and extent of research involvement.