We identified 33 current or recent studies, through the NIHR and Social Care Research Register portfolios and other sources, which were care home specific or recruited residents from care homes. This review generated a baseline that can be used as a measure of care home research activity. The number of studies was higher than we anticipated, which may reinforce the findings about the recent increase in RCTs in care homes . It also highlighted the scope for expansion of care home research activity and supported the need for the development of a care home research network to streamline the identification and recruitment of care homes.
Out of the 10 care home managers that were interviewed in phase 1, only half of them had participated in research previously, but overall the experience had been positive. Contrary to expectations, financial incentives were not a prerequisite for participation, but support and sensitivity to the needs of residents with dementia were. The potential for mutual benefit was a recurring theme in both phases of the evaluation,. Other perceived and reported benefits included the impact on staff education, improved care, positive feedback from CQC inspectors, increasing dementia research, and the opportunity for staff to voice their opinions, concerns and ideas for improving residents’ care.
Managers expressed a need to be able to control the level of participation and engagement in research. This finding reinforced the value and flexibility of the three different levels of participation on which they are currently enrolled into the care home research network. Time constraints were evident, even when the benefits of being involved in research were perceived by care home staff as far outweighing the negative aspects. It is a recurrent theme in care home research and other literature that they are often isolated from the communities in which they are based and the wider systems of health care . An unanticipated impact of ENRICH was its linkage role with other care homes providing a focus that did not pose a competitive threat.
Even with project management and the involvement of support staff, the establishment of the care home network took longer than anticipated. It took eight months to recruit 141 care homes to the ENRICH care home network. A number of recruitment strategies were used to recruit care homes to the networks, including a corporate membership process which was developed centrally by DeNDRoN through liaison with one corporate care home provider. Corporate level engagement provided a quick route for making contact with care homes but introduced a further bureaucratic layer of permissions that did not necessarily guarantee care home manager engagement and support. A full costing of the pilot set up process was not possible but based on the completed site the average cost of recruiting one care home appears to have been relatively inexpensive. The set up process demonstrated a need for multiple approaches that reflect the heterogeneity of the care home sector. Most care homes in England have less than 10 residents and do not have on-site nursing, although this situation is rapidly changing as economies of scale mean care homes are increasing in size and joining larger chains .
To our knowledge the ENRICH network is the first national network that is supported by an online resource for researchers and participants and is integrated with a national infrastructure of clinical research networks. It was initiated as part of a national strategy to improve the reach and quality of dementia research . Internationally, examples of other initiatives in the United States, the Netherlands, Norway and Australia have focused on collaborations and schemes to support teaching and innovation in care with nursing homes . These are however, localised and care homes can only join through the organising institution.
Following the completion of data collection, another five regions have established local Research-Ready care home networks, and have begun to recruit homes; the total number of care homes involved currently is 509 care homes recruited within the first 18 months of operation. This includes 86 individually recruited care homes, a further corporate provider with 73 care homes, and a care home network has also been set up in Scotland. Since its establishment, the ENRICH care home network has supported approximately 18 new studies to undertake research in care homes. In addition to resident recruitment this has also addressed care home staff engagement through their inclusion in study writing groups, trial steering committees and the review of study protocols. The network is expected to double in size within the next 12 months, and will support recruitment to new studies funded by the Economic and Social Research Council (ESRC) estimated at around £5 m.
All the care homes involved in ENRICH had above-average assessments for the quality of care by the regulator. The network was able to recruit a range of care homes across a wide geographical spread but could not claim that they were representative. Nevertheless, ENRICH provided a wider base for recruitment to studies than has previously been the case. If, as was suggested by one participant, involvement in research is seen as an indicator for good care and a willingness to be open to scrutiny, it is possible that over time the expectations of the regulator, residents and their relatives will normalise participation in the network.
A key challenge to the success and sustainability of the network is the availability of studies to maintain care home participation and membership of the network, as well as those that they recognise as relevant to their work. It is a limitation of the evaluation that its scope and resources did not enable us to evaluate the longer term impact of ENRICH on recruitment to studies.
Delays in setting up the care home networks across all four local research networks in the regions, and the protracted research governance process seeking permissions in order to conduct interviews with care home managers, meant that it was not possible to set up focus groups with residents and their families, as originally planned. This illustrated one of the barriers to recruiting care homes identified by researchers in phase 1.