This study assesses the social, economic, emotional and relational impact of the COVID-19 pandemic on unpaid carers, and considers how such carers can be better supported throughout pandemic conditions and into the future in Wales

Overview

Unpaid carers, people who provide support and care for ill or disabled family members or friends, are often referred to as a ‘hidden army’ of care staff essential to the functioning of public services. With the nature of their financial resource and support highly dependent on personal and Local Authority circumstances, unpaid carers often experience significant financial and social disadvantage under normal conditions, placing a strain on their mental and physical health. They are often highly reliant on local support and temporary care provision to enable them to focus on their own wellbeing alongside that of the person or people they care for. As such, this group have experienced additional negative impact from the COVID-19 pandemic, with the withdrawal or heavy restriction of much of this support provision, alongside the limitations of potential activities to attend and, occasionally, additional financial impact from furlough or redundancy. This study is conducting in-depth qualitative semi-structured interviews with forty unpaid carers in Wales from a variety of backgrounds, circumstances, and localities to understand their individual narratives and experiences both before and during the pandemic. Our findings form part of a range of studies that will inform the strategy for unpaid carer support in Wales, currently under development.

Activities and Methods

Qualitative semi-structured interviews

Findings

This study set out to examine the nature of unpaid carers’ experiences before the pandemic, the impact of COVID-19 on their experiences of caring and the effects of these experiences on their well-being. Our findings indicate that unpaid carers were already experiencing a range of challenges and that their difficulties have often been exacerbated by the pandemic.

What were carers’ lives like before the pandemic began?

Becoming a carer can be a complex and gradual process, which means that many carers do not recognise their identity as a carer until they reach a crisis and seek help from health or social care services. Most carers are driven by a sense of love or duty, yet there can also be powerful feelings of being ‘trapped’, having a lack of choice, and frustration with the person cared-for. Entering into a caring role has profound implications for the relationship between the carer and the person cared-for, which can complicate family dynamics; for example, when the parent/child roles are reversed. It is important that the carer and the person cared-for share times of mutual enjoyment and pleasure, since these can enhance their relationship and make the caring arrangement more sustainable. Many carers in our study reflected on the importance of their caring relationship and some noted a sense of achievement and self-efficacy derived from their caring role. 

Despite their commitment to the person cared-for, and some positive experiences, most carers reported that they suffer from stress because of their caring role, and that their mental health suffers as a result. For many, social isolation and loneliness were long-standing problems before the COVID-19 pandemic began, with a few wryly noting that they had been experiencing lockdown as a normal feature of life as a carer for some considerable time. Importantly, those with weaker social networks tended to report poorer mental health. 

The impacts on carers’ well-being were made worse in some cases by living and caring conditions that might be understood in other situations as breaches of human rights – for example, the number of hours spent caring each week, or exposure to the risk of physical harm due to lifting or being assaulted (in the case of loved ones with illnesses/disabilities that impact on their behaviour). Furthermore, most carers live with a constant level of fear and uncertainty, for example related to the progression of their loved one’s condition and the possibility of their greater suffering in the future. 

Many unpaid carers value engaging in paid work outside their caring responsibilities. This can enhance carers’ well-being by offering a break from caring, boosting self-esteem, and providing an opportunity to socialise independently. The experiences our interviewees reported with regards to support from employers for managing their caring responsibilities alongside their work were mixed. Many carers shared examples of flexibility and understanding from employers and colleagues, for which they were grateful, yet others indicated that their needs were not understood and that very few allowances were made to accommodate their caring responsibilities. Several acknowledged that being a carer has impacted on their career plans, since they are restricted both in the hours they can work and how far from home they can travel or live. This was particularly a concern for younger carers. 

Just as responses of employers to unpaid carers were mixed, carers’ experiences of education varied greatly. Many younger carers reported that they were not identified as young carers by their schools, despite recalling events that could have provided an opportunity for schools to discuss the support they might have needed and to refer them onto other agencies for support. Where carers in education did receive some flexibility, for example through university policies, they valued the flexibility and time allowances that were made for them, however such policies did not always bear out in practice for our participants.

Many carers in our study reported that they had suffered financially as a result of their responsibilities and role. Several were experiencing financial crisis or unsustainable economic detriment before the pandemic. A handful of more affluent carers reported that they spend considerable amounts from their own personal resources to meet the needs of the person cared-for, while those with moderate amounts of money had stories of finding that their resources were quickly used up upon becoming a carer. Some carers reported that they were obliged to work fewer hours or even give up work to be able to care and that they had suffered financially as a result. Several expressed resentment at the low value of Carers Allowance and its narrow eligibility criteria.

It was disheartening to hear from many carers that their experiences of being assessed for support from local authority social services were poor. They generally reported that they feel unrecognised and undervalued by professionals, and struggle to secure any meaningful support. By contrast, many spoke highly of voluntary sector services aimed at supporting carers, especially when carer centres were available in their locality. 

How has COVID-19 impacted on the lived experiences of carers and the roles they undertake?

Unpaid carers have felt overlooked during the pandemic, since politicians and the media have focused on the contributions made by paid health and social care workers. This sense of injustice is unfortunate in the context of the extraordinary level of sacrifice many unpaid carers have made, since they have increased the amount of care they have been providing while decreasing the time spent pursuing their own well-being and interests.

Social distancing measures have meant that many carers have been cut off from their usual avenues of support – for example, relatives have been unable to visit and children have been unable to go to school. This has meant that carers have had less time to themselves and have had more responsibilities for performing caring tasks daily. An aspect of the pandemic control measures that has had a particular impact on carers has been the advice for the most vulnerable to ‘shield’. For carers, the need to shield their vulnerable loved one has often meant that their own fundamental freedoms have been curtailed even further than was the case before the pandemic. A particular source of frustration during January and February was that unpaid carers were not prioritised for vaccination as early as paid workers or their vulnerable loved ones.

Many unpaid carers who work welcomed increased opportunities to work from home, since this provides more flexibility for fitting in their caring responsibilities. Some, however, reported missing the workplace as a space away from caring and said that they found it difficult to work at home while also providing care. This was also the case for younger carers in education, many of whom regretted that they were unable to escape distractions when attempting to follow lessons or lectures at home. Those experiencing financial precarity (around a fifth of our sample) indicated that the pandemic has brought about additional challenges, since household running costs have increased with everybody at home most of the time.

Unpaid carers have found that health and social care services have been harder to access during the pandemic, though some have seen benefits from accessing health care remotely. Third sector organisations have continued to provide vital support and have shown impressive adaptability by switching to remote forms of communication. While this has been appreciated by carers, however, there was a general sense that meeting in person is preferable and, therefore, that having services based in the local area is essential.

What has the impact of COVID-19 been on carers’ well-being?

Some carers reported that the COVID-19 pandemic, and the control measures imposed in response, had prompted them to spend more time relaxing with the person cared-for, which had been beneficial for their relationships and had reminded them of the importance of times of shared enjoyment. For others, however, the loss of time away from the person cared-for, personal space and activities to enhance their own well-being (e.g. the closure of gyms) had led to increased feelings of tension and frustration that may have a long-term impact on the sustainability of their caring role. 

The increase in carers’ responsibilities and the loss of avenues of support or respite have meant that carers have experienced additional levels of stress and loneliness as a result of the pandemic, leading in turn to further detriment to their mental health. The fear of their vulnerable loved one becoming infected with COVID-19 has been a further source of anxiety for many, as have increased financial pressures. Meanwhile, the decreased visibility and availability of statutory services has left many carers feeling invisible and abandoned. 

In the short term, carers have responded to the emergency conditions of the pandemic with fortitude and stoicism, but this has been undertaken at great personal cost. The longer carers are expected to cope without enhanced support, the more likely it is that their living and caring conditions will come to feel unsustainable, resulting in crisis or their withdrawal from caring. As was noted above, unpaid carers were already experiencing considerable challenges to their well-being before the pandemic began. The combination of additional caring tasks and responsibilities, increased stress, loneliness and anxiety should be seen as an early warning marker to policy makers, services and professionals. As a matter of priority, carers must receive improved recognition and support in Wales, beginning with a comprehensive post-pandemic improvement plan to address the detriment to their interests and well-being that they have suffered.

Recommendations

  • Targeted promotion of carer identification at points of interaction between services and carers, especially General Practioners (GPs) and health services. This should be led by professionals to overcome the barriers to carers self-identifying. The Making Every Contact Count (MECC) approach could be used to guide this improvement.
  • Organisations with which carers may have contact should review all published service promotional materials to ensure that inclusive language is used, i.e., language that does not require a person to self-identify as a ‘carer’ to appreciate its relevance to them.
  • The impact of caring on relationships and support to sustain relational well-being should be attended to in carer assessments. Short-term therapeutic work may be useful to support the carer and person cared-for in understanding and managing the transition into a caring relationship. It may be necessary to develop a model of intervention by social services that could be offered as part of a care plan following a carer assessment, drawing upon on systems theory, solution-focused therapy and family therapy.
  • Post-pandemic carer assessments should attend particularly to how social distancing has impacted personal relationships as well as social and practical support networks, and identify where an elevated risk to carer well-being has occurred as a result of reduced social support during the pandemic, offering intervention where appropriate.
  • Gaps in social support groups should be identified by local authorities and health boards and targeted with new or expanded third sector or statutory services.
  • Young adult carer groups with dedicated support workers should be made available locally and promoted to all carers under the age of 25 in Wales.
  • Carer assessments should be used an opportunity to collaboratively consider whether the demands that caring places on a carer are reasonable in relation to their human rights, and what statutory or third sector services can do to mitigate potential harm where carers are willing to accept detriment to their rights.
  • Third sector services would be well-placed to offer specialised counselling for carers, free of charge, to address existing harms to carer mental health. This should be given high priority during recovery from the pandemic.
  • Gaps in social support groups should be identified by local authorities and health boards and targeted with new or expanded third sector or statutory services.
  • Young adult carer groups with dedicated support workers should be made available locally and promoted to all carers under the age of 25 in Wales.
  • Carer assessments should be used an opportunity to collaboratively consider whether the demands that caring places on a carer are reasonable in relation to their human rights, and what statutory or third sector services can do to mitigate potential harm where carers are willing to accept detriment to their rights.
  • Third sector services would be well-placed to offer specialised counselling for carers, free of charge, to address existing harms to carer mental health. This should be given high priority during recovery from the pandemic.
  • Local authorities and health boards need to ensure that they actively and proactively identify carers across all their areas of service. A national register of carers might be a useful tool in ensuring that carers are visible to services, so that interventions to promote their health and well-being can be more easily directed to them.     
  • Local authorities need to review how carers obtain information and guidance regarding the services they require for the person they care for, with the aim of simplifying processes and enhancing clarity of information.
  • Regional Unpaid Carers Teams should be established in each area of Wales – these should take a multi-agency approach with representatives from social care, health, and education. These should be available for direct unpaid carer enquiries.
  • A mapping of local support groups and other third sector services across Wales is needed to identify where gaps exist, and funding identified to ensure that all unpaid carers have equitable access regardless of location. This information should be gathered in an online hub alongside contacts and locations. This would ideally be provided through a national third sector organisation.
  • In the event of future crises similar to the COVID-19 pandemic, a governmental consultation group of diverse carers should be immediately established to consult on policy and practice in relation to their support. Additionally, an outreach programme should be planned and implemented where need arises to ensure that carers do not feel a sense of abandonment during any future lockdown conditions.
  • Regarding future vaccination schedules, unpaid carers should be equal in priority to the person cared-for.
  • Schools providing care for disabled children should be consulted regarding their provision during COVID-19 and their views obtained as to whether it would be reasonable to expand their available places to sustain disabled children’s education in the event of future pandemic conditions.

Lead Person

Principal InvestigatorDr Dan Burrows

Academic Staff

Research AssociateDr Jen Lyttleton-Smith
PHD Student Lucy Sheehan
Lecturer Dr Sion Jones

Related Information

Related SchoolsSchool of Social Sciences
Related partnersCarers Trust Wales
FundersPublic Health Wales