Research and analysis

Executive summary

Published 7 October 2024

This report presents findings from qualitative research with working people who were making, or had made, decisions about work and care. This project explored:

• their experiences
• the decisions people faced and their information needs
• the extent to which these needs were met by information available online

Research design

Two strands of primary research were conducted.

The first strand consisted of 15 depth interviews and 10 follow-up interviews with working people who had learnt within the past year that a family member would need support, or increased levels of support.

In the second strand, 4 focus groups were conducted with people who had been providing care for a family member for one year or more. All were in work when they first started to provide care. Participants were recruited via four local carers centres, through which they were receiving support or information at the time of the focus groups.

Together, these 2 strands provided a combination of real-time and retrospective views and experiences. This report presents findings from both strands.

Experiences of providing care

While each participant’s experience of providing care was unique, a pattern or journey involving a number of common stages emerged:

The caring journey

The experience within each stage:

1. Identification of need – Learning that a family member would need support.

2. Initiation of care – A focus on the present and meeting immediate needs as opposed to planning for the long term. Providing care was reported to be mentally and physically tiring, leading participants to focus on getting through each day or week.

3. Managing – Combining work and care and feeling that this was sustainable.

4. Stress – Feeling pressure as a result of combining work and care. This was either because of an increase in intensity of care requirements or the length of time over which they had been providing support. Participants described that providing care over a longer period of time became more tiring and hard to manage.

5. Crisis – Feeling unable to combine work and care sustainably.

6. Receiving support – Gaining access to support for themselves. This tended to be a reactive measure following the preceding stages, rather than a proactive step. Support could help them to overcome feelings of isolation and social exclusion and encouraged them to consider their own wellbeing, including the role of work in their wellbeing and the potential for returning to the labour market.

Initiation of caring activities

Participants did not actively decide to initiate caring activities. Instead they instinctively reacted to learning that their family member needed support.  

At this point, participants’ primary concern was meeting the needs of the care recipient. Secondary consideration was sometimes given to how to combine work and care, the financial implications of the person’s care needs or options for external support. Participants rarely considered their own wellbeing or the longer term implications of their actions at this point. When care needs emerged or increased rapidly, participants had to make decisions about care, work, finances and use of external support quickly. In these circumstances, participants reported that family members recognised that help was needed and offered support. In contrast, when care needs increased more progressively, decisions were made more slowly and this seemed to act as a barrier to receiving support from both external information sources and family members.

Regardless, their actions did have long term consequences which were not always anticipated or considered. This provides some support for the hypothesis that improved access to and use of information may improve decisions in the early stages of providing care and improve peoples’ long-term outcomes.

Although starting to provide care was not seen as an active decision, participants did discuss a number of themes that influenced whether they took up the role, and in what way. These included:

• Family circumstances – for example, whether the recipient of care was a parent or partner, and whether or not participants had siblings who were able to provide care.
• Proximity - family members who lived nearer to the care recipient reported they took on day to day caring activities, rather than those who lived further away as this seemed a more practical decision at the time.

“I feel frustrated. Because she lives close to me, I’m the default carer, seven days a week. There wasn’t a proper discussion about sharing the load.”

Male, 52, Nottingham

• Perceived duty – participants often felt it was their role as a family member to provide support.
• Focusing on the present – a focus on care recipients’ current needs rather than considering what their care needs may be in a few years’ time and what this might mean for the individual providing care.

“I’ve just been putting out each fire as it lights up. I haven’t had time to think that far into the future about help.”

Female, 54, Nottingham

• Perceptions of external or ‘formal’ care – lack of awareness of or willingness to use professional care services affected whether or not participants took on care activities themselves.

How participants felt about combining work and care in the early stages of providing care

A range of themes were reported as affecting how participants felt about combining work and care. These are shown below:

Themes which affected how participants felt about combining work and care

Themes included:

• Information – Participants who had left work could feel that they had no choice but to do so. Participants could then also reflect on whether they might have stayed in employment with more information about financial support, practical support such as the availability of professional care, and the potential long term consequences of leaving work. Early information about employment rights such as flexible working was reported as being key to helping people to combine work and care.
• Relationship to care recipient – the type of relationship the participant had with the person needing care (that is whether they were a parent, child or spouse of that person) affected how they felt about meeting their care needs, now and in the future.
• Nature of work – whether participants’ jobs were full or part-time; whether they were self-employed or an employee; access to flexible working; how supportive their workplace was and job satisfaction all affected views on the feasibility of combining work and care. Lack of flexibility limited participants’ ability to accommodate short notice care needs or crises. Self-employment was said to bring advantages and disadvantages as it often allowed more flexible working but sole responsibility for generating income also added greater pressure.
• Financial circumstances – participants with savings or a higher income were more able to reduce their working hours if needed. However, financial security was also found to act as a barrier to seeking support which could result in people ending up in a worse financial situation than they might otherwise have been.
• Own health – participants who had, or whilst caring developed, mental and/or physical health conditions found being able to combine work and care more challenging.
• Level of care and other caring responsibilities – the nature, intensity and unpredictability of care activities all influenced the extent to which participants felt able to combine them with work. Providing care for multiple people or living closer to the recipient of care were associated with spending more time providing care overall and so reducing participants’ capability to continue working.
• Other family relationships – participants felt they were ‘spreading themselves too thinly’ by trying to combine work and care, they described feeling stressed and anxious about not having enough time for other family members (such us partners or children) as a result.

Experiences of people who had been providing care for a year or more

Participants who had been providing care for longer than a year had either:

• continued with the same working pattern including number of hours;
• changed their working patterns by either reducing their hours, becoming part-time or moving to more flexible shift work,
• changed their employment; or
• left employment to provide care full-time.

Flexibility at work, employer attitudes and the intensity of caring activities were felt to have strongly influenced which of these options participants took. Those who continued to work the same number of hours said that they did so in part because they could not afford not to, or that sharing of activities among their family or someone else better enabled them to combine work and care.   

Those who had left the labour market demonstrated enthusiasm to return and wanted to find a way of combining work with their caring activities. They recognised the positive effect that work could have on their wellbeing.

“You don’t realise how important work is [until you leave]. If you’re at work, even for just a few hours, it can boost your self-esteem….and it’s part of who you are.”

Female, North West Focus Group

Experiences of accessing information and support

Initial information seeking was focussed on the health condition of the care recipient and finding support available to them. Participants rarely searched for information about support for themselves, or how best to combine work and care, unless pointed towards online sources by other people.

Offline information sources were discussed as being most helpful early on, as participants’ questions at this point were broad. Offline sources that participants wanted to use in the early stages of their caring journey included health professionals, family and friends, local charities and support groups. They thought these offline sources could be used to direct them to online information.

“I can remember so many of the conversations [with the GP] were about my mother’s condition. Looking back, there wasn’t nearly enough focus on who was going to be providing the care for her.”

Female, 50, Nottingham

Online information searches were used to look for answers to specific questions. Sources which were cited as being particularly helpful included condition-specific charity sites, financial advice sites and social media sites. Participants wanted online sources to be trustworthy, easy to navigate, concise and up-to-date, with a warm tone.

“You get a bit overwhelmed sometimes looking [online]. It’s a wall of black text and your brain is tired after work. You want it to be short and snappy, not reading a novel.”

Male, 51, London

Recognising themselves as a ‘carer’ had a strong influence on how participants looked for and used information. Until participants saw that the role they were carrying out was experienced by others and recognised by society they could feel isolated and were unaware of the support available. This is because they were unaware of what it was to be a ‘carer’ and that there was support available to this group. Recognition that the term ‘carer’ applied to them helped them look for information for themselves, led them to websites targeted at people providing care, networks of other carers providing support and it helped them identify what types of financial support they were entitled to. There was evidence of this recognition taking a number of years to happen and participants in this position said they would have wanted to understand that the term ‘carer’ applied to them earlier because of the support it unlocked. This raises the question of how information should be positioned to be accessed sooner, regardless of whether people identify as a carer or not.  

“You just feel like you’re a family member who is looking after someone, so at what point do you realise you’re a carer… if there was just a way of knowing that the support are there that bit earlier, to help give your life more balance”
Female, North West Focus Group

Key implications for the development of future information

The following implications for information providers emerged from the research:

Proactively supply information to support the needs of people providing unpaid care. Those in the early stages of providing care tended not to seek information to support their own wellbeing, or manage their new caring activities alongside work. To improve access to this information, it could be proactively given to people, to reduce the challenges experienced by those providing care, when navigating and accessing information independently.

Make use of offline sources to reach those providing care and signpost to further information online. Participants described more readily accessing offline sources in the early stages of providing care. Leaflets and signs in GP and hospital waiting areas were described as being particularly useful.

Target carers more explicitly through online sources in the care recipients’ journey. Participants reported accessing websites about the care recipients’ condition and needs, for example, those with a defined condition would look to condition specific charity websites or to GOV.UK for the support available for them. These websites could more explicitly reference the individual providing care and help signpost them to information about support for themselves. 

Design information for time-poor users and make it easier to process. As a result of being time-poor as well as mentally and physically tired, participants preferred information to be clear, concise and easy to navigate.

Make more use of the most trusted and well known information sources. Participants did not always know what online information to trust. Some websites participants accessed early on, however, were more immediately recognised as authoritative and trusted, for example the NHS website and GOV.UK.  Signposting from more well-recognised sites to other useful websites that new carers may be unfamiliar with may help them navigate and assess the legitimacy of online information more quickly.

Use a warm tone when providing information to make it more engaging. This signalled to participants that the author, or organisation, understood their experience. Participants reported they were likely to use and engage with sites which demonstrated greater understanding of their circumstances.

Emphasise the value of proactively considering their own long-term needs and options. Participants felt that they would have benefitted from being encouraged to consider their own needs as early in the journey as possible.

Note on interpretation of research findings

Findings in this report are based on research conducted in 2019. While contextual changes since 2019 may affect how people make choices about work and care and should be considered, many of the findings remain relevant to understanding the experiences of working people facing choices about work and care.

Acknowledgements

The authors would like to thank all of the people who gave their time to participate in this research, the Carer’s Trust and the four carers centres who facilitated and hosted the focus groups.

We would also like to thank Dr Carla Groom, Cate Fisher, Lucien Bush and William Downes in the Human-Centred Design Science team, Department for Work and Pensions for their input into the design and support throughout the process.

The Authors

This report was authored by researchers at the Ipsos MORI Social Research Institute. Their roles at the time of the study in 2019 were:

Joanna Crossfield, Associate Director, Ipsos MORI

Yasmin White, Senior Research Executive, Ipsos MORI

Darragh McHenry, Research Executive, Ipsos MORI

Glossary of terms

Attendance Allowance: a benefit for individuals who are over the age of 65 and have care needs due to an illness, disability or mental health condition.

Carer’s Allowance: a benefit payment for those who spend 35 hours or more a week caring for someone who is in receipt of certain disability benefits, and who earn £151 or less per week net of allowable deductions.

Carers centres: independent, local organisations providing a range support services – usually including but not limited to information and advice – to people in the local area who are caring for someone.

Caring activities: supporting someone who needs help with everyday activities due to illness, disability or old age. This included but was not limited to supporting them with grocery shopping, laundry, dressing, cleaning and helping them with their finances or managing professional care.

Professional care: paid-for care provided by professional carers, care homes and day centres.

External support: Where the term external support is used, this refers more broadly to information and help provided both to carers themselves and/or the care recipient.

Personal Independence Payments: a benefit for people aged between 16 and 64 who have an illness, disability or mental health condition to help with some of the extra costs of their condition.