Taking part in care home research – how to improve the experience for everyone involved

We spoke to Jae Wyld, an undergraduate student at Sheffield University. Jae is studying Health and Human Sciences, and received a vacation scholarship from the Wellcome Trust to carry out an eight-week research project, between the second and third year of his degree. He was supervised by Louise Newbould, a PhD student in the School of Health and Related Research.

The aim of Jae’s project was to explore the experiences of people who had taken part in care home research, and to draw out the implications for research practice. He chose this project because of his passion for caring for older people at the end of life. The first step involved looking for research already published on this topic, which made Jae realise that “Most studies ask the participants for their views on the intervention being tested, but rarely ask people about what they thought about taking part. The voices of residents, relative and staff are missing – but they play such a crucial role in making research successful. We really need to ask them what they thought and felt, and how their experience could be improved”.

Confident there was a need for this work, Jae carried out a small study talking to research participants from three different care homes. He interviewed a manager, a deputy manager, a nurse, a care assistant, and a family member. Although he had planned to interview a resident, that person later became too unwell to take part.

This was Jae’s first experience of research, so he was on a steep learning curve for much of the time. The people who were interviewed also taught him a lot, as he explained, “I realised there are barriers to participants’ voices being heard, that everyone involved can help overcome. I was interviewing a care assistant, who seemed to lack confidence and was a bit nervous, but these people are often working in an underpaid and undervalued role, so they may be made to feel that way. This person had valuable insights into the research process, but appeared to lack opportunities to voice these. More needs to be done to ensure the insights and knowledge of care home staff are not lost. For example, the home could encourage staff to become champions of research. Researchers and managers could also help to empower less confident members of staff”.

One of the key ways to break down these kinds of barriers is for researchers to develop good working relationships with everyone in the care home. Jae believes it essential to show respect and an understanding of the care home environment, “You need to work with the staff, residents and relatives as early as possible in the research process. Then you become a friendly face. Care homes are where older people live, and they desire and deserve to feel safe and comfortable. If there is mutual trust and respect, this will help make the project run smoothly. Adding the extra time to the researchers’ schedule to do this is of value to everybody”.

Researchers working in a care home will need to be prepared to be as flexible as possible, as it is highly likely that some unforeseen event, such as an outbreak of illness, or a shortage of care staff, will disrupt their plans. Good communication between the researcher and the care home will help everyone stay up-to-date and in-the-know. Because many care home residents experience dementia, it is important that researchers have some form of dementia training or become a Dementia Friend. This will increase their confidence in communicating with residents, and help to put everyone at ease.

At the end of a project, thanking people for their participation is a mark of respect as well as a way of acknowledging the value of their contributions. Jae believes researchers could be more creative about the incentives they provide, as he explained, “Whilst a thank you card is always appreciated, providing something useful could be better. While I was talking to the nurse, they were interested in using their research experience to inform their nursing revalidation process. Similarly, a care assistant might want to incorporate their learning into their progress review, showing how it helped to improve, for example, their communication. The care home manager said they wanted more information about the outcome and impact of research, but had found that communication with a researcher can end soon after a project is finished. And for residents, while flowers might be lovely, they might benefit more from something more practical, such as a gift of art supplies. Making the extra effort to find out what different participants would like, might encourage greater uptake and participation in future research projects”.

Jae also concluded that researchers, care home associations and research networks need to ensure they are making every effort to work with care homes that may be harder to engage. As he explained, “Care homes in rural locations or within certain kinds of business structures can get left behind, and as a result may not be offered the same kinds of opportunities to improve their practice. As researchers, we’re the ones who define who’s hard to reach, so it’s up to us to ensure these research opportunities are more open. We have a responsibility to ensure that the vulnerable people in those homes also have a chance to be included”.

For Jae, this experience has convinced him there is more work to be done and he plans to continue researching this area, as he said, “I’ve absolutely fallen in love with research. At the moment I’m deciding whether to do this as an academic, or by becoming a nurse. I can now see the value of research for practice, and the importance of sharing your findings with everyone who wants and needs to see them”.

Key messages for care home researchers

Some of the main recommendations include:

• Be sure to involve members of staff at all levels, not only the managers – they can all provide fresh perspectives on how to overcome challenges

• Ensure everyone in the care home knows about the research project, not only the people taking part

• Build time into your proposal to get to know the staff, the residents, and the care home’s culture and to find out what is important to them

• Be friendly and approachable at all times

• Keep in touch with care homes after the end of the project and explain how people’s contributions have helped

• For further details of these findings, read the plain English summary, or the final report.

October 2017

For further information, contact: Jae Wyld

Email: jwyld1@sheffield.ac.uk