Why is it difficult to identify people who are caring for loved ones with serious illness?

By Natalie Edelman
Brighton and Sussex Medical School, UK

This summary was highly commended by the judges for Access to Understanding 2015

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In the UK about 1 in every 10 people are providing care to a parent, spouse, other family member or friend. As people live longer it is anticipated that many of us will take on this kind of ‘carer’ role. Research shows that carers themselves often have poor physical and mental health. This is sometimes made worse by the caring role in which carers can feel overburdened and isolated. Sometimes poor health can eventually limit carers’ ability to perform their caring role. This can cause upset for both the carer and their loved one, particularly in cases where this prevents end-of-life care from being provided at home. Supporting carers to provide care at home can also significantly reduce the huge costs of institutional care anticipated as we all live longer into old age.

Identifying carers is the first vital step to providing them with healthcare and support. Unfortunately research suggests that many carers are not recognised by health and social care services as having a caring role, and so do not receive adequate support from them. In response this research study was carried out to understand:

  1. Why it is difficult to identify carers
  2. What strategies could improve their identification

The study focused on ‘primary care’ services like General Practices and pharmacies, which are based in the community and attended by most people. It looked at both end-of-life carer experiences and at general carer experiences. The study gathered information in three ways:

  1. By reviewing all the findings from relevant research that had already been carried out
  2. By consulting with researchers who had experience of researching carer roles
  3. By carrying out group interviews with healthcare professionals like General Practitioners (GPs) and community nurses, and with carers themselves.

The findings from these three activities were compared and then brought together. The findings concentrated mostly on why it is difficult to identify carers in General Practice. Three major areas of difficulty were found.

The first of these was that becoming a carer is often a gradual process. This means carers don’t always recognise when they are starting to take on that role. This also sometimes happens because they see their caring role as just part of being ‘daughter’ or ‘husband’ to their loved one or because the cared-for person struggles to recognise they are being cared for. This is important because it can be hard to offer suitable support to carers who don’t identify as such. In addition some carers do not want outside help or fear it would be an intrusion. This often changes after a crisis in the health of the cared-for person, after which support is offered and welcomed.

The second major area of difficulty is that carers are often left with very little time for themselves. This can make them feel isolated from others; particularly if they have to leave their job. Isolation and lack of time affected carers’ ability to recognise their own health and social care needs. Carers may also struggle to find the time to go to see their GP, particularly if they are afraid to leave their loved one alone.

The third major area of difficulty concerns how primary care approaches – and is perceived to approach – carer needs. Firstly GPs sometimes lack information about available services for carers, even though GPs and district nurses feel their role includes identifying carers and offering services and care. In addition carers themselves often don’t realise this is the role of GPs and nurses, and so do not approach them. GPs and nurses also find that identifying carers is harder when the carer and loved one are registered with different General Practices. It can also be difficult to find time alone to discuss with carers what their needs might be.

This study has uncovered why so many carers are not identified. This understanding then enabled the researchers to consider strategies to improve the identification of carers. The researchers recommend two key activities to ensure both carers and professionals take seriously their needs:

  1. Advertising available support more widely, so that carers realise they are in that role and feel confident requesting help if and when needed
  2. Encouraging professionals to be more proactive in asking patients about caring roles and providing them with information

These activities highlight the importance of good information about support services. The researchers point out that ‘carer champions’ are sometimes employed to provide this.

By understanding difficulties in identifying carers, these – and other – strategies can be developed to improve carers’ health and quality of life. This has positive implications for all of us; as carers, as loved ones and as members of our changing society.

This article describes the research published in:

Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources
Carduff, A. Finucane, M. Kendall, A. Jarvis, N. Harrison, J. Greenacre, S. A. Murray BMC Fam. Pract. (2014) 15, 48

This article was selected for inclusion in the competition by Marie Curie Cancer Care.



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