Preparing research studies

It is important that researchers preparing research studies take time to properly understand the care home sector.

There is considerable variation between individual care homes in terms of organisational culture, management and delivery of care. Researchers are advised to spend time understanding the care home sector, how it works and the challenges it faces. This will ensure that appropriate consideration can be made when discussing support for studies.

Researchers should consider how these differences can be accommodated and how study delivery can be integrated into normal care and activities as well as how the setting and differences could influence research findings. The advice below will help researchers achieve this.

A major reason why research bids fail is the inability of applicants to show that their recruitment strategy is feasible. Ensure you identify the care homes you would like to work with as early as possible, and plan and test feasibility together.

Involvement of stakeholders at all stages of the design and implementation of a study is essential (Chapter 5, Hood et al (2014) Probiotics for Antibiotic-Associated Diarrhoea (PAAD): a prospective observational study of antibiotic-associated diarrhea in care homes)

In preparing studies, researchers should consider the following practical tips from those experienced in this field:

  • The research is being done in the residents’ home which is also other people’s workplace. As such there may not be staff rooms or many places where you can talk privately with residents or staff.
  • Consider the researcher’s experience and skills of working in a care setting.  Researchers need to be prepared for working in this environment as it can be mentally and emotionally draining and sometimes stressful when working with vulnerable people.
  • Involve care home staff in the study design and development. They will help you to identify any issues before carrying out the study.
  • Encourage the care home to identify a small number of key members of staff covering all shift patterns who can act as a point of contact between the staff and research team and can help disseminate information and updates about study procedures.
  • It is important that the researchers engage with care home staff at all levels, and not just with management. For studies to be successfully delivered it is important that all groups understand the aims and delivery mechanisms, and that all ‘buy-in’ to a study.
  • Care home residents may have the capacity to make their own decision regarding whether they wish to participate in a research study, or they may lack the capacity to decide. This may change over time with some individuals losing capacity as cognitive function declines, others may regain capacity and for some it may fluctuate. The decision whether to include both people with and without capacity will depend on the design of the study.
  • Take time to understand the sector, and the statistics. Did you know the average number of residents per care home is less than 30, and that 30% of care homes are not part of any group.
  • Despite the large number of homes, it can take a significant amount of time finding care homes that are willing and right for your study. Researchers are advised to start identifying partners at the earliest opportunity, ideally during study development. This will allow any variance and costs to be properly accommodated. This should include looking across all of the UK for recruitment and not only in one area.
  • Take time and be flexible in your approach to carrying out the research.  Allow additional time for recruitment, consent, data collection, and where relevant, conducting the intervention.
  • Staged recruitment processes are preferable to allow sufficient time to establish relationships with care home managers and workers, health and other professionals, as well as residents and relatives. You need to understand their priorities, concerns, goals of care and everyday routines. This can help to avoid delay to study start up.
  • Allow extra time for outbreaks of influenza, periods of being understaffed, care home inspections or contract renewal, changes of ownership and other factors that are likely to cause delays.
  • During the study it is likely that the care staff working in the care home may change (as is likely in many care services). Consideration should be given to how training and study communications can continue to be delivered as staff change, including to those staff for whom English is not their first language or who may not read and write English well.
  • Some staff may only work weekends or at night and they need to be involved as well as staff who are more ‘visible’ to researchers. Timing of training sessions will need to be planned to include those staff who work outside conventional working hours. Development of training packs and materials, which can be used for cascade training within care homes, are recommended.
  • If Good Clinical Practice (GCP) training is required for care home staff taking part in the research this should be included in the training plan/schedule. Bespoke on-site training may be available, or options such as access to online training modules may be available.
  • It is not uncommon for care workers to hold a nursing qualification in their home country that has not been recognised yet in the UK and so care is needed about terminology when considering data, for example, reference to someone as a nurse or matron may need to be clarified.
  • The research process needs to fit the environment and work culture of the care home.
  • For example:

     

    • Care homes are extremely busy places and staff workloads need to be considered.
    • Researchers may need to visit the home at night, early morning, or over weekends to fit in with the work schedules.
    • Not all care homes have a computer or internet available for staff use. Studies will need to consider this in their application if they propose a web-based intervention or intend to collect data this way.
  • Engagement with care home staff should not replace the engagement you would expect to have with residents, relatives and family carers. This issue is addressed in the ‘ LINK: Carrying out Research’ section. A number of research projects have been conducted on methods development for engaging people with dementia in research, and in the care homes setting. The Dementia Services Development Centre in Stirling has also published a number of Case Studies for researchers working with care homes - http://dementia.stir.ac.uk
  • The level of disruption that participation in research will cause needs to be estimated, and compensation made for it.  Above all, staff need to know what this might be. Researchers should not expect to use care home staff time without providing compensation. Without this, that staff time is unlikely to be replaced, and could have a negative effect on the care provided.
  • It is good practice to offer to pay lay people (including residents and carers) for their participation as members of advisory groups and similar activities. This is a requirement of many funders. Researchers should follow the guidance produced by INVOLVE on Public Participation Involvement and should also be aware of the potential effect on people's benefits if they are paid or are offered payment (this does not usually apply to older people in care homes but may apply to family members). Rules on reimbursements and payments for service user involvement can be found on the Social Care Institute for Excellence (SCIE) website.

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