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Here are two Q&As with authors about their timely articles, published in the Covid-19 Collection on HRB Open Research, a partner platform with F1000, looking at the experiences of vulnerable populations and the changes that need to be made to healthcare to help these groups during the crisis and after.

The first interview is with Katie Robinson and Aoife O’Neill, University of Limerick, about their qualitative study to explore how older people and family carers are experiencing the pandemic.

The second interview is with Professor Eamon O’Shea, National University of Ireland, Galway about his Open Letter highlighting how the health system, and broader society, may help people living with dementia during this crisis.

‘Exploring the beliefs and experiences of older Irish adults and family carers’ – The Study Protocol by Dr Katie Robinson & Dr Aoife O’Neill.

When and why did you decide to explore the experiences of older people and family carers?

Researchers in the Ageing Research Centre (ARC) at the University of Limerick developed the idea for this study in mid-March as the first wave of government restrictions in response to COVID-19 began. Initially we were keen to explore how older people and family carers were experiencing the pandemic.

We decided that telephone interviews would be a practical and safe way to learn about older adults’ experiences. Because rapport is a little more difficult on the ‘phone and because restrictions are subject to change we decided to do two telephone interviews, a month apart, with everybody who takes part in the study.

Why did you choose to write a Study Protocol?

We have worked with a stakeholder panel of older adults and family carers over the past few months and this group will be invited to take part in the study and to contribute to analysis and dissemination. Research is not usually a very speedy process. We wanted to capture older people’s experiences at the early stage of this pandemic while still taking enough time to plan the study properly.

Ideally, we would have designed the study with our stakeholder group of older adults and family carers but in this case we decided to involve stakeholders at a later stage in the analysis of data and disseminating the findings rather than study design to expediate data collection. 

One unusual aspect of this study is that the research team are all sharing aspects of this experience with the study participants– although restrictions are more severe for those over 70 years of age. This shared experience is something we have discussed and will consider throughout the study.

How do hope to change health policies and discourse?

Older adults have been subject to more severe restrictions during the COVID-19 pandemic than younger people. In Ireland at the moment people over 70 years of age are required to minimise interactions with others by not leaving their homes. These restrictions limit the range of activities that older people may engage in, may limit their opportunities for social interaction and may affect their access to healthcare with potential consequences for health and well-being. It is important that the views of older people on these restrictions are collated and disseminated to policy makers and healthcare providers.  

Over the past few weeks ageist discourse and stereotyping of older people has featured in news media and social media reporting on the pandemic. In response to this, in Ireland, a group of over 150 healthcare practitioners and academics have expressed concern about ageist language in COVID-19 media reporting.

What impact do you hope your study will have?

Our study aims to challenge ageism and stereotypes of older adults by representing the diversity of community dwelling Irish older adult and family carers experiences and views. Older adults who take part in this study will be invited to take part in analysis of the study data and in preparing press releases and other outputs with the aim of facilitating older adults to shape public discourse on COVID-19.

Why did you choose to publish on an open research and open peer review platform?

Firstly, as this is a global pandemic, with academics, scientists, policy makers, and many others, contributing their expertise to find novel ways of minimizing the impact of attempts to stop transmission of the virus, the researchers at ARC believe it is important that this study protocol is freely available quickly and not hidden behind a paywall. 

Secondly, because HRB Open Research is indexed in the PubMed database this protocol will be easy to find which can support research collaboration and avoid duplication of research. Since this protocol was published ARC researchers have been contacted by researchers from Sweden and the United Kingdom who are completing similar studies with plans to share emerging findings.

‘Remembering people with dementia during the COVID-19 crisis’ – Open Letter by Professor Eamon O’Shea, National University of Ireland, Galway.

Why did you write this open letter?  

The letter highlights the need for citizens, policy-makers and the relevant research community to remember people with dementia during the COVID-19 pandemic and to continue to value their personhood and citizenship at this time. The letter also calls for resource allocation to be determined by need rather than by age or condition, even when resources are scarce. Although public policy is rightly focused on care within nursing homes, given case numbers and mortality, the majority of people with dementia are likely to live at home in the community.

Therefore, we also need to protect the human rights, citizenship and connectedness of people with dementia living at home, including those of their family carers. Social distancing should not lead to the social isolation of an already vulnerable group. The human condition is as complex at the COVID-19 virus itself and that observation also needs to be reflected within public policy decision-making.

What do you recommend should be done to help those living with dementia during this crisis?

The protection of people with dementia is a societal responsibility. Stopping the spread of the disease is the first priority, something that governments and communities across the world have been attempting to do, some with more success than others. Increased levels of support and resource allocation for nursing homes and care homes is clearly very important. But so too is care for, and communication with, people with dementia living at home in the community.

Social distancing must be accompanied by inclusivity measures, such as the provision of clear and concise information on COVID-19 and its implications for people with dementia. Good communication is especially important for people with dementia, making sure we find ways to inform people what is going on, how they can protect themselves and providing reassurance and consistency within formal care relationships.

Finding ways to support informal carers during the crisis is also vital – allowing them to continue caring at home in a way that supports the personhood of the person with dementia. Making sure that family carers know that they have the support of the public and the government at this time is very important and deserves greater attention.

Why did you choose to publish your open letter on an open research and open peer review platform?

I wanted to engage directly with peer dementia researchers on the ongoing importance of including people with dementia and family carers in their research programmes. The research community in this area is relatively small and it is important to stimulate debate on their role and potential in generating more information on the human and social  needs of people with dementia during the crisis.

It is also very important that funding organisations continue to recognize the value of social research on dementia and that policy-makers are reminded of psychosocial aspects of care during the crisis, including the protection of the human rights of people with dementia, in all its forms.