Table 5 Advice and recommendations taken from included articles for modifying barriers and facilitators
Issues | Proposed solutions |
|---|---|
Research Design | Work with stakeholder organisations when designing studies e.g., Care Quality Commission (CQC), local authorities – consider the perspectives of each individual shareholder but also take into account the relationships and hierarchy both within a care home and between it and other organisations and health professionals Embed Public Involvement (PPI) throughout and consider how to support their involvement through taking account of residents’ needs due to cognitive impairment and physical frailty Allow care home staff to play a key role in identifying eligible residents, share information and introduce researchers to residents Consider how the consent arrangements will impact on the study – for example ensuring that residents who lack capacity to consent can participate through the involvement of a consultee or legal representative For each step in recruitment, make extensive plans that build in time, including time to be flexible in the face of unexpected hurdles. Adapt measures or questions to potential participants. Understand that recruitment is a resource intensive process and that it requires a lot of preparatory work. There are many layers of permissions needed to support the recruitment process in care homes Provide training so that staff can better understand how to support decisions about capacity and communication approaches, and ensure person-centred inclusion research processes Understand that the staffing pressure and the unique environment of care homes may impact on research – be patient, flexible, supportive and understand the complexities involved, and minimise additional workload for care home staff and any costs associated with taking part Identify realistic targets with the manager at the start. Take the time to learn about shift patterns and mealtimes – understand that care always comes first, research is not the top priority for staff Researchers should develop their skills in order to support residents with dementia to participate in research Be open, responsive, and sensitive – talk to, and work WITH, care home staff Provide accessible, tailored communication tools in order to have the best chance of supporting residents to understand the research and provide informed consent |
Communication | Recognise that staff have an invaluable role in supporting residents to understand information about a study and maximise their ability to provide consent if they want to participate. Staff can act as a bridge for communication and advise researchers on any communication aids, best times to approach etc. Ensure that staff have genuine understanding of the research study, so they share correct information, as well as developing a good relationship with them so that they are happy to help. Consider making them research partners so they feel more included and part of the team Communicate well with the care home so that staff know when researcher is coming so they can plan ahead – provide opportunities for meetings and be transparent Identify realistic targets with the manager at the start. Take the time to learn about shift patterns and mealtimes – understand that care always comes first, research is not a top priority for staff Provide accessible, tailored communication tools in order to have the best chance of getting residents to be fully informed and understand the research – e.g., use of pictorial or print text cards |
Relationships | Care home managers can support with recruitment when explaining studies to residents, the early involvement of residents’ families, data collection that takes account of residents’ needs, tailored information and support for care home staff Understand the differences in each care home’s culture. The influence of the culture within a care home may impact on how care home staff engage with the research, define dementia, and interpret their roles as mediators, protectors and gatekeepers Develop good and trusting relationships with staff and demonstrate willingness to work with staff – be a respectful researcher and support staff, be guided by managers and staff, try to allay concerns faces by any of the stakeholders, provide active appreciation through feedback |
Eligibility criteria | Avoid intentional and unintentional exclusion of potential participants because of age, multi-morbidity or frailty, or impaired capacity to consent |
Preference-based decisions | Utilise legal arrangements that can be put in place if residents want to participate but have no family to act as a consultee/legal representative e.g., ensuring care home staff can act as a consultee/legal representative Provide accessible, tailored communication tools in order to have the best chance of getting residents to be fully informed and understand the research |
Care homes | Allow care home staff to play a key role in identifying eligible residents, share information and introduce researchers to residents Staff can act as a bridge for communication Recognise that staff have an invaluable role in supporting residents to understand information about a study and maximise their ability to provide consent if they want to participate Staff can advise researchers on any communication aids, best times to approach etc. Care home managers can support with recruitment when explaining studies to residents, the early involvement of residents’ families, data collection that takes account of residents’ needs, tailored information and support for care home staff Provide training so that staff can better understand how to support decisions about capacity and communication approaches, and person-centred inclusion research processes Become a ‘research ready’ care home |