Involving care home residents in Public and Community Involvement and Engagement (PCIE) activities - The SPHERE study
Dr Khalid Ali is Senior Lecturer in Geriatrics at Brighton and Sussex Medical School and NIHR Clinical Research Network Kent Surrey and Sussex Specialty Lead for Ageing. From March to June 2020 Dr Ali consulted care home residents on the development of a new study that aims to help care home residents be more physically and mentally active during and after the COVID-19 pandemic.
Dr Ali said: “We recognised that older people in care homes would be shielding and would not be as physically active due to the pandemic restrictions. Because of this, we developed the SPHERE Study- Supporting PHysical and mental well-being of oldER people affected by COVID-19 in CarE homes study.
“Reduced physical activity leads to muscle deconditioning as well as a lower immune response. In addition, social isolation can cause anxiety and low mood. Maintaining physical activity has been shown to improve immune responses in older people and enhance their general well-being. By providing older adults shielding in care homes with an opportunity to be physically active and socially engaged, we hope to mitigate some of the negative consequences of shielding.
“The study hypothesis is that a virtual exercise and mindfulness program delivered by a research physiotherapist in real-time will improve physical activity, reduce loneliness, and enhance the well-being of older people who are shielding or have limited outdoor mobility for one reason or the other.”
Dr Ali consulted several NIHR partners within the region for help and advice. Dr Ali continues: "I approached Katherine Sykes, Implementation Lead for Living Well with Dementia at ARC KSS for help and she connected me with various people and organisations. We also consulted the Research Design Service South East team. Statistician Anna-Marie Jones and Gary Hickey, PPI Strategic Lead, suggested doing the Public and Community Involvement and Engagement (PCIE) component of the study with local care homes by holding online focus groups using the Kraydel Konnect device we plan to use in the actual study.
“I then approached the CRN KSS ENRICH lead who introduced me to three local care homes - Barford Court in Hove, Maycroft Manor Care Home in Brighton, and Prideaux Lodge in Bexhill-on-sea.
“Kraydel company team delivered the Konnect device to the three care homes. At the care homes, we only needed a TV in a communal room and a secure wi-fi connection to enable us to communicate with the care home residents and staff using the Konnect device.
“I am very grateful for the help I received from the care home activity coordinators who each gathered a group of five or six residents, who were either in their 80s or 90s. One of the residents said she was delighted that she was invited to take part in and contribute to research. I held three virtual meetings, lasting an hour each where I described the study. I received constructive input from the residents and care home activity coordinators. We talked about the best time of the week to do the activity and how to do it.
“The residents suggested that the first two initial sessions should be delivered one-to-one so they can become familiar with the trial physiotherapist and that subsequent sessions could be done as a group. It was acknowledged that not everyone will be able to attend each session and it was suggested to record the session so other participants can watch it later, either one to one or in a group. Other feedback from the residents included that they preferred to be all seated for the exercises, to have background music, and for the sessions to happen twice a week. We talked about compensation and whether they would like to receive vouchers for taking part in the study but they were happy to do it voluntarily.
“The meeting participants recommended that the study should be accessible by all; some people may have some cognitive impairment and they will need support from activity coordinators and friends and family to read the study information leaflets or complete the study questionnaires.
“All three care homes were sent a summary of the study before my session and they fed back that some of the terms were not very lay friendly. I changed the wording to make it more easily understood.
“I appreciate that what we propose in the study might not be novel as care homes already provide a range of physical activities for their residents, such as dancing. As a researcher, you come up with an idea that you perceive as a ground-breaking intervention. However, it is only when researchers talk to people that they realise that their ideas are not feasible unless they discuss them with the target groups.
“I could not have done this engagement exercise without the activity coordinators in the three care homes; they ensured that the residents were available at the virtual session time and were ready to explain to residents what was happening during the virtual focus groups.
“During the focus groups, some of the participants had sensory implications and could not hear me properly; the activity coordinators on-site were repeating what I said. They facilitated discussions ensuring that everyone had a chance to speak and be involved. The three care homes have already signed up to take part in the full study once we have funding.
“Overall I had a very positive experience of engaging with care home residents and staff. I was impressed with their collective appetite for research. The residents felt valued by being asked to participate in research especially in these challenging times. Everyone involved in the virtual sessions said that they would like to sign up to the study if we receive funding.
Deidre Johnson, Home Manager at Barford Court in Hove explains how the residents found the experience of taking part in the sessions. “Research is something we try to get involved in where possible and we sign up to studies which would be beneficial to the home. However, this is the first time that our residents have been engaged with research themselves. The residents enjoyed someone wanting to know their opinion and being asked to take part in the sessions.
“We are interested in taking part in the full study if funding is secured. What is being proposed for the study is what we are already doing in the home, we do many mindfulness sessions with our residents and other activities such as giving them string musical instruments to play. Keeping people mentally and physically well and engaged is close to our hearts and we welcome anyone else who can help our residents be active.
“It is important that our residents are involved in research. I have worked all my working life with people living with dementia. We must do anything that can help older people and people living with dementia. It is important that people in care homes have a voice and should be heard at any opportunity and someone looking into research that could benefit residents is only a good thing - the more people interested in what is happening in care homes the better.”
Dr Ali continues: “Previously I have done engagement activities by visiting people at home or in community centres, but this is not possible during the pandemic so it was great that I could still engage with people virtually. The next stage for the study is to secure funding.”
The study: Supporting PHysical and mental well-being of oldER people affected by COVID-19 in CarE homes study.
At baseline, study participants will be asked to self-report their physical activity using validated questionnaires.
At six weeks, the research nurse will ask participants again about their physical activity, and quality of life using the same questionnaires. A set of open-ended questions will also be used to establish how participants felt about the virtual sessions.
Following each physical exercise session, the study participants will be encouraged to undertake a mindfulness session also delivered virtually by the study physiotherapist. The mindfulness sessions are available freely online on YouTube from the University of the Third Age.
The study package has been designed in collaboration with Brighton and Hove branches of the University of the Third Age (U3A), Brighton Healthy Lifestyle group, and the NHS Retirement Fellowship organisation. Potential study participants from care homes will be approached through the ENRICH program, an NIHR platform supporting research in care homes.