While arranging my grandmother’s flu jab, the doctor asked my mother if she, as her carer, wanted one too. My mother replied, "But I'm not her carer, I'm her daughter." The doctor gently corrected her, saying, "Well, as her daughter and carer, you might consider it." This simple exchange made my mother realise that she was indeed a carer, even if she hadn't thought of herself that way before.
This year’s Carers Week theme of ‘Putting carers on the map’ is an opportunity to step back and consider the critical – but often overlooked – point that not all those who provide support identify as carers, or can be easily identified. Some remain ‘hidden’, either not relating with the term, or otherwise not disclosing their caring.
This is the topic I have started exploring through my PhD. I have witnessed increased interest in the concept of hidden carers in recent years. They are increasingly mentioned in general discussions about caring. They are also brought up more often when statistics and trends are being explained or are hard to explain. Identifying carers is a critical first step in understanding who carers are, how they can best be supported. Thus, it is fitting that there is increased attention on making sure no one is lost.
Why explore hidden caring?
The importance of hidden caring first became clear to me several years ago, while analysing household survey data with colleagues. We observed marked differences in the number of people reporting receiving care from a spouse or one of their children compared to the number of spouses and children reporting providing care. This has several important implications.
Estimates of the total number of carers, for example 2021 census estimates of 5 million in England and Wales, are based on rates of self-reporting. If there are individuals who provide support but don’t identify themselves as carers, we will inevitably underestimate how many carers there are, both now and in the future. It is important that we have a good idea about how many such individuals there are so that services for carers (such as respite and carers’ allowance) can by properly planned and budgeted for.
Furthermore, carers not identifying themselves as such presents a barrier to matching the carer with support. Support often requires the individual to undergo a carers’ assessment, and those who don’t believe they are carers are unlikely to receive or accept this process. Over the past few years, particular emphasis has been placed on prevention, looking to provide people with support early so their needs won’t snowball as quickly over time. The fact that people vary in how long it takes them to identify as carers limits the extent to which we can match people with support early on in their caring journey. This issue has been widely acknowledged. A previous Department of Health and Social Care Carers Action Plan described carers as anyone who spent time looking after those with needs, regardless of whether they identified. Improving carer identification has also been explicitly mentioned in the People at the heart of care white paper.
What do we know about hidden carers?
Given how central hidden carers are to carer research and the recent interest in them, it is an unfortunate reality that there is a lack of evidence in the area. When I first started looking into hidden caring in late 2020, I was asked what the scale of hidden caring might be. The answer could help us understand: 1) the appropriate priority level of this research versus other carer topics; and 2) how much we are underestimating the number of carers, and therefore current and future demand for carer support. Owing to an almost complete lack of any quantitative analysis internationally at the time I was asked, I was unable to give even a broad estimate.
Subsequently, Sean Urwin, Yiu-Shing Lau, Gunn Grande and Matt Sutton have produced an incredibly useful paper analysing data from the Understanding Society household survey. They identified hidden carers by comparing responses about care provision and receipt among different household members. A hidden carer was someone for whom another member of the household reported receiving care from, but who did not indicate providing said care. The authors found that 62.5% of the reported care received came from individuals who did not indicate providing the care. This means that only approximately two in five co-resident carers are identified through current self-reporting methods, and there may in fact be more than double the amount of co-resident carers than we think. This could have extreme implications for our understanding of carers, and the budget and design of policy measures.
While quantitative evidence has been severely lacking beyond this study, carer identities have been explored more qualitatively. A number of factors play a role in determining whether an individual identified as a carer:
- Concepts of care: A key determinant is whether the individual believes the support they provide counts as care. In general, I have found little consensus (including amongst care researchers) about whether a particular act of providing support counts as caregiving. In most cases, people say that “it depends”.
- Gender: Given gender disparities in caring expectations, it might not be surprising that there are differences in willingness to identify as a carer.
- Ethnicity also appears to play a role in the degree that caregiving is assumed as part of wider familial responsibilities.
- Relationships: Research has also found some people are concerned that if they identify as a carer, the way they reference their connection to the care recipient will change, preferring to keep thinking of themselves as a wife, husband, daughter, or son, as opposed to a carer.
Existing literature suggests those who identify as carers often do so following discussion with others, underscoring the importance of General Practitioners and other health and social care professionals in the caregiver’s journey.
Advancing research in hidden caring
As mentioned, I am currently working on a study of hidden caring using mixed methods. Quantitatively, I am analysing household survey data to explore hidden caring over time, using the same method of identification as described earlier. In doing this, I aim to understand how the probability of becoming a hidden carer changes over time. I am also exploring what factors affect the probability that a hidden carer goes on to identify themselves as a carer in the future. I am furthermore exploring how the mental health, physical health, and wellbeing of hidden carers changes over time compared to those who openly identify as carers. Using qualitative methods, I am exploring what qualities come to mind when people think about carers. This includes looking into how people’s responses to whether they are a carer are affected by who is asking them or the identification method used (e.g. in-person discussion vs online form). In addition, the perceived incentives or disincentives to identifying will also be explored.
Like my mother, you may also have hidden carers in your life. Recognising the vital role they play and supporting them though their journey, including with self-identification, means that we can properly understand the number and profile of people who provide care, and ensure that adequate support is provided to all types of carers – this is how we are putting hidden carers on the map this Carers’ Week.