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Lessons from Lockdown What next for online carer support?



This paper has been researched and written to assist commissioners and providers of carer support services as they consider how to build capacity for reaching and meeting the needs of carers in the future. The paper has been funded through the Government’s modern industrial strategy by UK Research and Innovation.
Lessons from
What next for online carer support?
Full Report
July 2021
In partnership with
About Mobilise
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collective knowledge, wisdom and expertise of unpaid
carers and empowers those that care to thrive. We
provide a range of online support services, grounded
in research and tested with carers across the UK.
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About this Paper
This paper has been researched and writ ten to assist commissioners and providers
of carer support ser vices as they consider how to build capacity for reaching and
meeting the needs of carers in the future. The paper has been funded through the
Government’s modern industrial strategy by UK Research and Innovation.
Lydia Nicholas is a researcher, writer, and facilitator in technology and
innovation across health and social care. Formerly Programme Manager
of Dotever yone’s Better Care Systems, and senior researcher in Nesta’s
Futures team and Health Lab, she now works freelance for clients including
the Health Foundation, the Wellcome Trust & The Design Council.
Dr Warren Donnellan is a Psychologist and Lecturer based in the Department
of Psychology at the University of Liverpool. He is an internationally
recognised expert in resilience and caregiving across the life-course.
Dr Matthew Lariviere is a Lecturer in Social Policy based in the School for
Policy Studies at the University of Bristol. Matthew is a social anthropologist
whose research examines opportunities for digital technology and AI
within contemporary and future arrangements of ageing and care.
Michael Lewis is a Research Assistant at the University of
Liverpool based in the Department of Psychology.
Increasing reach & accessibility 13
Information as a Service 15
Crowdsourcing 16
Partnership across boundaries 17
Data 18
Skillsets for delivering online support 21
Poll of Carers - Dr Warren Donnellan 24
Commissioner/Provider Survey - Dr Warren Donnellan 30
Carers Lead and Provider Interview - Dr Matthew Lariviere 34
Executive Summary
Key Findings
Existing Evidence
New Evidence
Too many carers struggle in their caring role because they are not being
reached by support services. Experience over the COVID-19 pandemic
has shown that well-designed online services can open up support to
new groups of carers, helping them to thrive in their caring role.
This report summarises relevant existing evidence about providing online
support for carers - both from the social care sector and from a wider
‘digital transformation’ background - and introduces new evidence from the
experience of carers leads and support providers through the pandemic.
Where online tools have been used out of necessity during
lockdown to replicate ofine support of existing audiences,
behaviours will likely rever t to pre-pandemic norms.
However, the experience of many providers has been that the move to
online support has opened up support to signicant new audiences. Looking
ahead, these groups (younger, and more digitally engaged) are likely to
represent a larger proportion of carers over the next ve to ten years.
Commissioning and providing effective online
support for carers will likely depend on:
greater collaboration across local authority borders
reimagining the shape of support to meet the needs of a dif ferent
audience and the capabilities of online technology
developing new digital skill sets - either ‘in-
house’ or via commissioned providers
investing in light-touch, preventative tools that can be deployed at scale
Where online services are piloted and developed as part of a long-
term digital strategy and integrated with existing offers, they have
the potential to support signicantly more carers to thrive.
Executive Summary
1 Online services can
increase numbers
accessing support services
Experience throughout the ongoing COVID-19 pandemic has accelerated
demand for online carer support services. Online tools were seen by those
providing services as a cost-effective and accessible way to dramatically increase
the numbers of carers accessing support - par ticularly those from traditionally
underrepresented groups, and particularly as a preventative approach.
Six out of ten carers surveyed were already using online tools for day-
to-day communication and services. Those who had used online tools to
access support for their caring role were seeking to continue doing so in the
future - particularly because they valued the accessibility of support which
did not require them to leave home (either because of travel difculties or
because they did not want to leave the person they care for alone).
There are signicant dif ferences in online behaviours between different
groups of carers - particularly in relation to age and gender. Looking
to the next 5-10 years, a new generation of carers will increasingly
turn to online channels to reach support for their caring role.
However, online support should be viewed as an extension to existing
services rather than a replacement. Particular audiences will continue to
prefer to engage ofine, and certain support services require the intimacy of
an in-person connection. Two themes coming out of the evidence were the
importance of having support available for the person being cared for and
enabling the carer to receive support separately (i.e. in another room).
Key Findings
2 Service design can drive
increased engagement,
and lower long-term costs
The importance of thoughtful service design was a consistent theme through the
evidence. Although there is an ‘untapped demand’ for light-touch, preventative
support services, access to these could be frustrated by clunky technology or overly-
complex processes (particularly amongst older generations). Many of the challenges
of a ‘digital divide’ can be addressed through investing in intuitive user experience
design and imaginative use of simple technologies to meet the needs of carers.
Supporting carers to engage with complex technology can be labour intensive
for providers, and is likely unsustainable at any substantial scale. This makes
the importance of intuitive user experience even more compelling.
Key Findings
3 Successful online support
will rely on partnerships
and collaboration
Pressures on cost effectiveness and impact create a compelling case for
regional and national collaboration in the provision of online support.
Duplication of content
Many online services (e.g. virtual events, online guides and automated
tools) could be delivered efciently across local boundaries whilst freeing
up resources for in-person delivery. Along with other providers, Mobilise
has found an approach of ‘create once, use many times’ makes it possible to
reach signicantly more carers without a substantial increase in staf ng.
Shared investment of resources
The development of online tools can require signicant investment of capital and
time if they are to be effective, accessible and scalable. A regional and national
approach to commissioning services creates efciencies of spending and improves
the quality of the end product by accommodating a wider diversity of carers’ needs.
Sharing of data and insights
A major challenge around designing support services to meet carers’ needs
is the limited data available. Online services can generate key insights to
inform future planning. Where services are common across local authority
boundaries, datasets can be used to drive
national and regional benchmarking.
Key Findings
4 Online support
works differently to
in-person support
The shift to online support has worked best
when the service has been designed with a
clear purpose, and with the limitations and
opportunities of the platform in mind. Simply
trying to recreate an in-person experience in a
Zoom or Teams call often ends in frustration.
New technologies open up a range of different
possibilities for service design that have not
previously been possible. Crowd-driven,
peer-support platforms such as WeFarm
could provide helpful models to draw on.
Although online group video calls work well
for some groups of carers, other online approaches
can be very effective. Men for example, sometimes feel more comfortable using
automated tools rather than a person when addressing ‘embarrassing issues’.
Online approaches seem to be most impactful for early-stage, light touch
preventative support. Out-of-hours suppor t is key to this, with up to 70%
of carers coming to the Mobilise platform outside working hours.
5 Specic skill sets require
training and recruitment
Staff training has played a key role where online services have been deployed
successfully. This includes becoming familiar with how to use the technology itself,
but also developing a more sophisticated understanding of the ways different groups
may wish to use technology. Many teams have been surprised by the engagement
of older people groups with mobile and video technology, for example.
Where organisations are seeking to deliver online support themselves, this
requires developing additional skill sets such as human centred design and product
development. An alternative is to partner with specialist organisations.
Key Findings
This section draws together themes from existing evidence, which may help to inform
decision-making for commissioners and practitioners. The evidence was collected
by reviewing a range of publications published by carers’ charities and social care
bodies, as well as academic and industry-led research into digital transformation.
Existing Evidence
Lessons from Lockdown
Prior to the pandemic, support for carers faced profound challenges. Many of those
challenges were exacerbated by the pandemic, and a signicant proportion of
carers took on more hours of more intensive care tasks as services were shuttered
and family and community were unable to visit and help (Carers Week, 2020).
Many carer-supporting organisations worked extraordinarily hard to nd new
ways of providing support - not only online, but via telephone and in-person
socially distanced visits where needed and possible. The intensity of the pace and
need for innovation during the pandemic can offer valuable lessons for building
an ecosystem of support for carers that meets the needs of the future.
Digitisation trends hastened by COVID-19
Social care services, and carer suppor t in particular, should not be too easily
‘lumped in’ with healthcare services, but in the absence of enough social
care data we can observe trends in healthcare as a form of proxy.
Those healthcare services that were not directly affected by COVID-19 were both
forced and enabled by the circumstances of lockdowns to accelerate movement
towards a “‘digital-rst’ primary care offer by 2023/24”(Hutchings, 2020, p3)
that had already been laid out in The NHS Long Term Plan. GP practices triaged
patients remotely, and at the pandemic peak moved 71% of appointments to
remote, up from 30% the year before (Royal College of General Practitioners,
2020). Outpatient appointments delivered by video tripled compared to 2019, and
use of online platforms to book appointments and request prescriptions soared.
Despite the many stressors of the pandemic, we can see through studying local
authority websites that many carer support services managed to adapt; most
commonly by moving assessments, counselling and advice services from face-
to-face to online (Willis et al., 2021). While carers’ centres and day centres were
physically closed “peer support groups, training and social events” moved online.
Existing Evidence
Increasing reach &
Most carers are online
Most adults in the UK regularly use the internet. Although carers are more likely
than the general public to face barriers to getting online (on average they are older
and have lower incomes) the vast majority of carers used the internet to seek
information, and pre-pandemic 79% reported using technology as part of their
caring role (Carers UK, 2019). Data collected between January and March 2020
(i.e. largely before the impact of lockdown) indicated 54% of adults of 75 and
over were recent internet users - a rapid increase since 2013 (ONS, 2021).
Further Readingx-the-digital-divide/
Design Matters
39% of the total time spent online by adult internet users in the UK in September 2019
was spent on Google and Facebook-owned sites such as YouTube, Instagram, WhatsApp
and the Facebook app itself. These platforms invest heavily in designing easy-to-use
interfaces which guide the user about how to navigate. Given that carers are pressured
for time, intuitive and friction-free design is crucial for delivering online services.
When services face extreme budget pressures, and people seeking support report
desperation and the breakdown of physical and mental health, usability may feel
like a low priority. But even in high pressure, under-resourced situations, the NHS
has found that investing in improved information for patients not only improves
outcome, but improves staff wellbeing, efciency and cost effectiveness.
Existing Evidence
A design-led approach that kept patients feeling informed and in control
through long Accident and Emergency waits resulted in 75% of patients
saying the wait was less frustrating, a 50% reduction in ‘threatening body
language and aggressive behaviour’ from patients and a 21% drop in
complaints. Staff reported feeling more empowered and more understanding
of patients’ confusion and frustration. Overall, for every £1 spent on the
design solutions, £3 was generated in benets (Frontier Economics 2013).
Further Reading
The Government Digital Service service design handbook can accelerate any service going
online with standard, well researched patterns and a library of ready made code to build easy to
use services quickly and well:
Out-of-Hours Support is crucial
Mobilise has found that, depending on local variations, between
50% and 70% of carers are seeking support outside regular
working hours (i.e. 9am-5pm, Monday-Friday).
This has particular implications for working carers, who are likely to be
at work during the day. Although online support can never (and should
not aim to) fully replicate face-to-face support, digital technologies can
ensure that some form of support is available at 3am (when ofine services
are unlikely to provide very much). Carer usage data from the Mobilise
platform indicates there is substantial activity throughout the night.
Further Reading
Digital public services: How to achieve fast transformation at scale
Existing Evidence
Information as a Service
Legislation sets out the provision of ‘information and advice’ for carers as a
central part of local authorities’ duties. Research published in 2015 conrmed
that carers used the internet as a key source of information relating to specic
health conditions and carers rights, to access emotional support and keep in
touch with one another (Tinder Foundation, 2015). A majority of carers were
using the internet to seek information relating to caring leading up to the
pandemic (Carers UK, 2019) and use of technology to stay informed and stay
in touch increased over the coronavirus lockdowns (Carers UK, 2020).
In a context of constrained budgets, many Local Authorities have placed
a “greater emphasis on information and advice as the preferred means of
support for carers (as opposed to the provision of ongoing replacement
care or of Direct Payments)” (Fernandez et al.,2021). The initial point of
contact and hub for this information is often council websites.
But analysis has repeatedly shown that local authorities are not using websites
effectively to support carers, and setting carers, staff, and commissioned ser vice
providers up for frustration, wasted time and resources. Lloyd and Jessiman’s study
of local authority websites in 2016 found “conicting information” (Lloyd & Jessiman,
2017). A repeat of the study in 2019 found similar issues alongside confusing
information like making “reference to secondary NHS services rather than primary
care – without noting referral criteria.” (Fernandez et al.,2021, p. 22). Analysis during
the 2020 pandemic found that despite efforts across services to shift to digital
provision critical information was still missing from many sites. Some “do not appear
to have any services for carers according to their websites”, others “were hard to
navigate” where “long series of links led to a dead end.”(Willis et al., 2021).
This is not simply an issue of convenience, or momentary frustration. Such “poorly
signposted” (Pursch & Isden, 2018) information sets up carers and Local Authorities
for a difcult relationship, where “Everything is a ght” (Carers UK, 2014) or a
“battle” (Carers Trust, n.d.). Carers who are not nding out about their rights and the
services available to them might lessen their use of services in the short term, but
ultimately will undermine their capacity to care, to remain mentally and physically
well, and to stay connected to the community and engaged in the workforce.
Further Reading
Carers UK Guides, tools and resources
Reimagining help: the right information at the right time - a resource for health services
setting out processes for learning how to provide information in the most useful and impactful
way. As yet no such resources are developed for social care or carers specically but many
lessons can be learned
Existing Evidence
By shifting from a static website model with potentially out of date content
to a crowdsourced model, local authorities and providers can unlock for
their carers the benets of a more dynamic and responsive approach.
Facebook groups, social media and even machine learning techniques make available
to an individual carer the amassed wisdom, knowledge and expertise of millions of
others carers who may well have experienced similar problems in the recent past.
One key advantage of this approach is that in addition to accessing
practical information/advice, the carer is simultaneously able to build
their network of ‘similar’ carers providing emotional support and advice
into the future. Donnellan et. al. have agged that these networks are
a key driver of improving carer resilience (Donnellan, 2018).
This is particularly important when creating services that meet the needs of black,
asian and minority ethnic carers. Some cultural groups nd accessing support from
a peer group more acceptable than seeking help from a statutory institution.
Further Reading
WeFarm is a plat form where 2.4 million small-scale farmers are able to share
detailed practical advice with each other to increase produc tivity
in_Kenya_ A_research_note_on_%27Wefarm%27_platform
Existing Evidence
Partnership across
Avoiding the reinvention trap
Those involved in commissioning, providing and receiving social care frequently
complain that local authorities “re-invent every wheel” with a frustrating mixture
of duplication and disconnection found between departments and between
Local Authorities themselves”(Surrey Care Association, 2020). For carer support
services, researchers have found this to be especially true (Willis et al., 2021).
Coming out of the pandemic it may be tempting for each local authority and commissioned
provider to develop their own online support solution. Given the likely similarities between
each solution, it may be much more efcient for regional networks (such as via ADASS
Carers Leads groups) to commission a shared solution covering a number of areas.
Effective sharing
The rapid shift to digital provision during repeated lockdowns has sparked further interest
in sharing resources and ideas. The “freedom to innovate” (Hussain, 2020) brought
about by the pandemic has permitted experimentation and collaboration, which in turn
has led people to speculate about how services could be structured more effectively.
Some of these changes are simple yet profound. Like other providers, Mobilise has been
able to share the cost of providing content across different authorities by delivering
online events on a national basis. This has greatly expanded the range, frequency and
attendance at events without creating unsustainable demand on local resources.
These experiences can lead to shifts in perception about how carer support services can
or should be structured. Researchers early in lockdown noted that carers engaging with
Mobilise support were able to create connections with other carers across the country -
enhancing and diversifying the level of suppor t available (Donnellan & Lariviere, 2020)
Existing Evidence
Moving forwards
While drawing on what has come before is an important aim, reviews
have repeatedly found a “paucity of apps and websites specically
developed for informal carers” (Papa et al., 2020). It must be admitted that
there are relatively few examples and hubs of expertise to draw on.
But recognising that the space is relatively open leaves
room to build connections and collaborations.
Effective digital collaboration which can make the most of resources, while avoiding
disconnection or duplication, requires a culture of openness, alongside structure and
intention. Rather than spending tens of thousands of pounds developing dozens
of in-house apps, repeated assessments of generic tools, writing the same copy
regarding carers rights and advice about technology, this work can be shared.
Further Reading
Explore the positive examples described in the joint ADASS TSA Commission report on technology in
adult social care; many of these creative uses of technology were led by or impacted unpaid carers
Existing Evidence
Improving data collection and analysis capacity can lead to more effective decision-
making, and ensure the needs of a broader range of carers can be understood and
met. What is termed ‘data’ can include but is not limited to personal information
(names, email addresses etc). A broad range of data, such as user behaviours
(when different users access particular services, for example) can provide hugely
valuable insights for commissioning and providing more effective services.
Identifying what data will be helpful
In the year prior to the pandemic calls for improved data in Adult Social Care
had become increasingly urgent, bolstered by the publication of the Ofce
for Statistics Regulation’s review. They conrmed that of data in the elds
of “economics, employment, health” it is “social care that stands out by far
for its low quality or even absent data” (Ofce for Statistics Regulation,
2020). Attempts by researchers in the eld have been hampered by “a
frustrating lack of high-quality, comparable data” (Schlepper, 2020).
High quality data is crucial for commissioners and practitioners as well as
researchers, because understanding supports decision-making. Reliance
on fragmented, biased information and anecdotal evidence “means that
policymakers, commissioners and providers are not able to make robust
decisions to improve the lives of people who receive care” (Nicholas,
2019). For these purposes ‘high quality’ data does not have to mean
intrusive surveys of every user - counting clicks and pageview times can
also be extremely informative about what carers are nding helpful.
The carer population is increasingly diverse, with different needs, interests and
experiences, different drivers to seek support and barriers to accessing services.
Older carers, sandwich carers, carers from ethnic and cultural minorities, carers
with different levels of income, education, digital skills and health literacy.
Data is critical to working out what works for this complex population.
Data helps understand challenges, identify opportunities, choose and assess
solutions. Services which collect less data may nd it harder to build a business case
for investments, or to draw attention to challenges or unmet needs; “We need parity
of measurement to have parity of policy”(Ofce for Statistics Regulation, 2020).
Existing Evidence
Data-driven decision making
When investing time, effort and attention in improving the availability and use of
data in services for unpaid carers it is critical to set out what that data is for, what the
intention is behind collecting and using it, and how it will be analysed. Trying to rapidly
ll the information void without careful consideration not only wastes resources and
time, but can actively cause harm, as errors and biases distract us, distort decisions
and leave those working in the service and using the service confused and frustrated.
Work on improving the technical side of data collection must be accompanied
by attention to organisational culture. With little information available, the few
numbers that are collected often become targets - in practice, even if not ofcially.
Targets can help us focus attention and resources, provide transparency and hold
us accountable. But targets which are not carefully balanced, frequently reviewed,
and “informed by a nuanced understanding about how data reects complex lived
realities”(Nicholas et al., 2020) risk creating target culture that ‘hits the target but
misses the point’ (Deakin 2015), with perverse incentives and distractions.
Further Reading
Health Foundation: Strengthening Social Care Analytics
Existing Evidence
New Evidence
Skillsets for delivering
online support
The Open University’s survey of 500 leaders and managers in adult social care
in England found that despite difcult working conditions over the pandemic, in
general staf ng levels were manageable - only 6% reported understafng - but
44% of respondents said they had “only the bare minimum of skills to operate,
or lacked vital skills”. They cited key areas of concern as digital (36%), leadership
(33%), and technical (31%) skills with almost half (46%) looking for recruits “capable
of adapting to future challenges in the wake of COVID-19”. (Turner, 2021).
Commissioning, delivering and assessing digital support offers for carers requires
skills and knowledge that may be in high demand, and therefore expensive and
challenging to access. But making key decisions without these skills can lead
to expensive mistakes, missed opportunities, and poor outcomes for carers.
Overcoming this skills shortage whilst also managing a budget shortage
requires a careful balance - prioritising digital skills (or interest in
learning) when possible in hiring, building in-house skills and condence,
drawing on outside expertise; and sharing costs, resources and
learnings with other carers support services or local authorities.
Accepting that digital transformation is ongoing; there will always be
new products and services becoming available, price changes to making
new technologies accessible and security and privacy issues to consider.
Adapting requires not just one-off training sessions, but a transition to
a learning culture, which supports experiments, shares ideas, is willing
to build-on and adapt tools and learnings developed by others.
The result will be an evolving mix, that draws on changing lessons
about how to learn from data, improve information services, x
disconnection and duplication, and meet carers where they are.
Further Reading
Bath & Nor th East Somerset:nding-our-user-experience-
Digital Transformation Is About Talent, Not Technology:
New Evidence
This section, written by Dr Warren Donnellan (University of
Liverpool) and Dr Matthew Lariviere (University of Bristol),
summarises primary evidence gathered in 2021.
The primary evidence draws on a poll of over 1,000 unpaid carers, and a survey
and interviews with local authority carers leads and providers of carer support.
Lessons from Lockdown
New Evidence
Poll of Carers
Dr Warren Donnellan
A survey of 1000 unpaid carers between 22nd and 28th April 2021 was
conducted on behalf of Mobilise by 3GEM, a market research agency.
It is important to note that the survey asked respondents if they look
after or give any help or support to anyone with long-term physical or
mental health conditions or illnesses. Whilst we use the term ‘carer’
throughout this section, not all respondents may identify in this way.
It is also important to note that whilst we do have the data to be able to
conduct a vast array of analyses stratied by different demographic variables,
this goes beyond the scope of this report. Here we aim to outline some
general demographic trends seen in unpaid carers living in the UK.
Who were the carers surveyed?
The survey sample comprises a diverse and generally well-balanced group
of unpaid carers living across the whole of the UK. However there are some
interesting trends to be aware of. For example, the carers are almost entirely
under the age of 65 with the most prominent group being aged between 25
- 34 years old. Carers of white ethnicity make up the majority of the group to
complete the survey, although people of mixed, Asian, black and other ethnicities
are also represented. Finally, it is worth noting that a signicant majority of
carers completing the survey are from the higher social grade categories.
Most of the carers in the sample have been supporting their loved ones for between
one and ve years, although some for much longer. Interestingly, almost 20%
of the carers have picked up caregiving responsibilities since the rst COVID-19
lockdown was announced in March 2020. Most carers are spending up to 34 hours
per week providing care, with a small proportion providing over 50 hours of care
per week. The majority of carers are looking after a partner/spouse, parent/step
parent/parent-in-law or a child under the age of 16 and a decent propor tion of carers
spend time looking after other relatives. See Table 1 for full descriptive statistics.
Respondent characteristics % of sample
16-24 21.6
25-34 30.9
35-44 23.6
45-54 14
55-64 6.8
65+ 3.1
Male 46.5
Female 52.8
Other 0.7
North (including Scotland and N. Ireland) 35.2
Midlands 24.3
London and South East 27. 6
Wales and South West 12.9
White 80.8
Mixed 7.7
Asian 8.3
Black 4.7
Other 0.8
Social grade
Higher and intermediate managerial, administrative, professional occupations 40.8
Supervisory, clerical and junior managerial, administrative, professional occupations 22.9
Skilled manual occupations 13
Semi-skilled and unskilled occupations, unemployed and lowest grade occupations 22
New Evidence
These ndings paint an interesting demographic picture of unpaid carers living
in the UK, but some level of caution should be taken when interpreting the
results as it is always possible that trends may in part result from online survey
bias rather than a representative pattern. For example, it is possible that we
overestimate the use of online tools because the poll was administered online.
Table 1. Respondent demographic characteristics
New Evidence
Care duration
Less than a year (since March 2020) 19.3
1-2 years 23.7
2-5 years 27. 4
5-10 y ear s 13.6
10-20 years 7.4
20+ years 2.5
Don’t know 6.1
Hours per week spent caregiving
Less than 9 hours 26.5
10-19 hours 22.1
20-34 hours 23
35-49 hours 11.7
50+ hours 6
Don’t know 10.7
Care recipient
Partner/spouse 33.6
Parent/step parent/parent-in-law 28.4
Child under 16 27. 2
Child over 16 10
Other 21.8
Live with care recipient
Yes 64.8
No 35.2
Are carers using online
tools generally and do
current approaches
meet carers’ needs?
The current support offer (largely ofine)
is not meeting carers’ needs.
Existing support for carers was perceived as inaccessible or inadequate by
carers, particularly those in the middle-aged 45 - 64 age group who had been
caregiving for longer periods. For example, 20% of carers felt inadequately
supported in their caregiving role, 14% felt that support was inaccessible to
them, and 18% felt that support was provided in an unattractive way.
Older carers (over 65s) reported having more trouble understanding support
whereas middle-aged carers reported having more trouble accessing
support. Middle-aged carers wanted access to individual, accessible support
and self-care more than the older group. This suggests there are age
differences in what support carers want and how they wish to access it.
Lockdown has seen a signicant increase
in carers using online services, and many
are hoping to continue using them.
Six in ten carers were already using everyday online tools to do things like manage
their nances, order takeaway and shop online before the COVID-19 pandemic, and
the same proportion intended to do so af terwards. Most carers use online social
media to connect with family and friends and about one third use it to connect
with caregiving communities. There is clearly a desire among carers to seek out
advice, support and information about caregiving from existing online channels.
New Evidence
About one third of carers were accessing health and social care services, seeking
advice from other people with caring responsibilities and booking health and social
care services online prior to COVID-19 and this increased during the course of
the pandemic. Carers accessing these services indicated a willingness to carry on
doing so in the post-COVID-19 period, which suggests that they are satised with
the services they are accessing. Additionally, about a quarter of carers indicated
an appetite for online support services that they were not currently accessing
that may have been unavailable prior to the pandemic; for example, whilst 17% of
carers had used caregiving apps previously and wanted to continue using them,
21% had not used them but wanted to, and 23% had not yet heard of them.
Despite the signicant jump in people using health and care services
online during the COVID-19 pandemic, it is still not at the levels of people
using the everyday online tools described above. There is an untapped
demand and a need to promote online services to carers so that they can
make more informed decisions about whether or not to use them.
Zoom/Microsoft Teams sessions are one
effective method, but there is scope for
a much more diverse online offer.
Prior to the COVID-19 pandemic, only 37% of carers had used video conferencing
software such as Zoom and Microsoft Teams. Interestingly, 68% of carers
reported using these platforms during the pandemic but only 57% planned to
continue using them in the post-pandemic period. For many support services,
one-to-one online services were perceived as positively as one-to-one face-
to-face services. Furthermore, 77% of carers felt that speaking to a human
when accessing support is important. This suggests that it is supportive
human interaction rather than the mode of delivery that matters to carers.
Video calls are not the only way of providing carers with supportive human
interaction. One-to-one support can be provided either synchronously,
using telephone and chat exchanges using online discussion forums, or
asynchronously, using blogs and videos. A ‘suite’ of services via different
remote platforms and channels providing accessible, user-friendly human
interaction is likely to have the most positive impact for carers.
New Evidence
There are barriers to digital inclusion, but
these may not be insurmountable.
Age may be the most fundamental barrier to digital inclusion in carers. Whereas
younger carers (under 35s) are most concerned about nding the time and private
space, 35 - 64 year olds are most worried about data privacy and time. Older
carers (over 65s) are less condent about using technology in general; they see
online tools more for socialising and staying in touch with family and friends
rather than accessing health and social care services. Therefore, extra effort may
need to be taken to engage older carers in online support options; it may be that
reframing the online support offer is necessary before attitudes can change.
Another impor tant barrier is hardware compatibility. For example, 89% of carers
report accessing the internet on a smart phone compared to just 33% who
access it on a desktop computer. This means that online tools and suppor ts
need to be mobile compatible and easy to use on a smart phone. Devices also
need to be internet enabled, whether that be through WiFi or data allowance.
New Evidence
Carers Lead &
Provider Survey
Dr Warren Donnellan
Who took part in the survey?
19 people working as carers leads or providers of services across England
and Scotland responded to a mixed method online survey between 5th April
and 17th May 2021. Respondents worked across a mix of levels, from front
line support workers and carer campaigners to higher level managers of care
provider organisations and chief executives based within local authorities.
Respondents were asked a range of questions about their attitude towards in
person and online carer support services. Respondents also had opportunities
throughout the survey to provide typed qualitative responses to contextualise
and enrich the quantitative data. It is important to be tentative in the conclusions
drawn from this data in part due to the small sample size but also due to missing
data across the survey. The ndings are outlined below under thematic headings.
What approach (in person or online) do
people working within carer commissioning
services think delivers the most value
and benet to unpaid carers?
Respondents were asked to reect on how existing carer support services
should be delivered, on a scale of entirely in person to entirely online, based on
existing human and nancial resources within their respective organisations.
Respondents invariably preferred a blended, hybrid approach in the delivery of
emotional/psychological support, information about resources available to carers
and carers’ rights, peer support, training in care skills and self-care, support with
exercise and eating healthily, and identifying and reaching more carers, whereby
services are delivered using an equal mix of in person and online modes of delivery.
New Evidence
While respondents felt that online support should not replace face-to-face
support which will always be necessary for some people due to digital
exclusion and deprivation, they felt that online support is more convenient and
gives options/exibility to carers who live busy lives and cannot always leave
the house to attend in person appointments. Respondents also recognised
that online support is often less time consuming which means that support
workers can reach more carers more frequently, some of whom may not have
been accessed previously due to infrastructural or accessibility challenges,
e.g. so called ‘hidden’, hard-to-reach carers living in rural locations.
How condent and equipped are people
working within carer commissioning services
about digital technology support for carers?
Respondents were asked how condent, equipped and resourced they
felt to make decisions about digital technology suppor t and to implement
and maintain this support for carers they were supporting. The vast
majority of respondents felt condent and had the skills and expertise
necessary to make good decisions about digital technology support and
to implement and maintain this support for the carers they supported.
Funding and resourcing was generally perceived as a barrier but interestingly a
greater proportion of respondents felt that this was a barrier to the implementation
and maintenance of support than making good decisions about digital technology
support. Perhaps this is unsurprising as implementation and maintenance of services
carries a more direct cost than condence in the capacity of an organisation.
New Evidence
What are the challenges facing unpaid
carers of using digital technology support
offered by carer commissioning services?
Next, respondents were asked to consider the challenges facing unpaid
carers of using digital technology support in terms of how likely it is to
prevent carers from accessing services and how costly it is to overcome.
All respondents felt that there were challenges facing unpaid carers in
using digital technology support. Proportionately more respondents felt
that carers’ ability to afford necessary devices and data, carers’ physical
disabilities and/or access needs, and carers’ concerns over privacy and
security were slightly challenging in terms of preventing some people
from accessing support or incurring some costs to overcome.
However, proportionately more respondents felt that carers’ lack of
digital skills and digital literacy, carers’ lack of time and carers’ lack of
interest were seriously challenging in terms of preventing most people
from accessing support or incurring very high costs to overcome.
What experience do people working within carer
commissioning services have of piloting new
digital technology support during COVID-19 and
do they plan to continue using it post pandemic?
Respondents were asked about their experience of piloting new digital
approaches during the COVID-19 pandemic and whether they planned
to continue using these supports in the post-pandemic period.
All of the respondents had tried online peer support and online training
and learning during the pandemic. The majority of respondents had tried
online emotional and psychological support, online assessment services
and online information about resources and rights for carers.
Interestingly, even for those respondents who had not tried these new digital
technology supports, all were keen to try to implement them in some way. Indeed,
more than half of respondents said that they intended to continue offering the
same or a higher level of digital technology support for unpaid carers that they
rst piloted during the pandemic. In line with the rst subsection above, the
respondents explained that digital technology support offers a ‘lifeline’ to carers
and greater exibility and reach to new, previously unsupported carers than before.
New Evidence
This clearly demonstrates a willingness to try new approaches and an openness
for new ways of working in the post-pandemic world. However it is important
to note that a proportion of respondents did not know whether they would
continue offering these services and some did not intend to at all. When
asked to consider their reasons for these views, the respondents explained
that maintaining the same level of service would depend on sufcient human
and nancial resources being made available post-pandemic which may result
in digital support being offered at a slightly lower level than currently.
What do carer commissioning services need in
order to sustain digital technology support for
unpaid carers after the COVID-19 pandemic?
Finally, respondents were asked to rank a number of factors that they believed
to inuence sustainable digital technology support in order of importance from
least important to most important. In line with the subsections above, the
most important factor was funding, followed by: training and support for staff
development; information about options available on the market; support and
communication between services; support and guidance from leadership; and,
nally, support and guidance from regulators at the least important factor.
Overall, the analysis suggests that there is ‘no one-size-ts all’ solution to
support for unpaid carers. Indeed, there is a clear appetite among people working
in carer commissioning services for a blended, hybrid approach as we move
into a post-pandemic future. However, there a number of important lessons
from piloting during the COVID-19 period as well as a number of tangible
barriers, the main one being funding and resourcing, which would rst need to
be overcome in order to achieve the plans and ambitions described above.
New Evidence
Carers Lead &
Provider Interviews
Dr Matthew Lariviere
To contextualise our ndings of the commissioned services survey, the
team carried out semi-structured interviews with 20 people involved in the
commissioning and delivery of carer support services. This sample included
commissioners, care leads, carer support workers, and technology providers
from England and Scotland. By carrying out interviews, we hoped to elicit the
views of stakeholders responsible for supporting carers within an increasingly
digitised care ecosystem. Interviews were recorded and transcribed verbatim,
then analysed thematically to identify shared and divergent patterns about
participants’ beliefs in how digital technology can work to support carers.
Here we present the major thematic ndings from this aspect of the study.
Why has digital support not worked?
Some participants believed that a signicant minority of the carers
they support would never engage productively online. Some of this
perception came from direct feedback from carers, some was informed
by changes observed in engagement, and some came from pre-existing
perceptions, like a carer’s age, as illustrated with the quote below:
“There’s a lot of people that are in the older sort of age
range, and they’re very old fashioned. They don’t know
what they’re doing.” (Carers Support Worker)
A few participants noted that digital simply did not work for some carers. These
were generally carers who both lacked digital condence and lacked the resources
to develop that condence- generally due to the demands of caring combined
with their own physical and mental health issues. While this group did include
more older carers, it was not exclusively older carers. Younger carers (carers aged
under 65 years) could also lack both condence and the resources to develop their
condence. People in this situation needed face-to-face intervention, support made
more difcult to access during COVID-19 related restrictions and lockdowns.
New Evidence
“There’s denitely a demand and need for some, some of the
face-to-face side of it and some things that haven’t been as
effective in terms of in-person from that perspective. So, for
example, being able to give carers a proper break from their
caring role is much harder. If it’s just over a Zoom screen
from [compared to] actual in-person.” (Carers Lead)
Several participants identied challenges with building relationships
through digital platforms and telephones. These individuals highlighted the
particular value they inscribed to body language, eye contact and sharing
physical space to build ‘bonds’ or ‘trust’ to develop social relationships.
“They could be speaking to somebody different every time. They
feel every bit of effort to see that person to sort of gauge what
their body language. Things that are missing when you’re
talking on the phone. There’s a lady recently having a terrible
time with the anti-social behaviour team at the council. She
feels that it would be better for her to physically go down
to the ofce to see them.” (Carers Support Worker)
There was no consensus about how best to support carers. Some participants
prioritised face-to-face support for carers. They noted how many carers had
strongly supported face-to-face interactions, like described in the previous
quote. Conversely, other participants reported how ‘sceptical’ staff had
been proven wrong when carers participated in online engagements. This
may link to what other interviewees noted: it was staff who were more
hesitant about moving online, motivated by their own dislike of change and
dislike of technology, rather than any belief strongly held by carers.
“My team manager who manages the [carer hub] for me. She was
quite sceptical about what the uptake would be [of the digital
support]. Whereas actually we’re seeing a constant increase in
the number of carers taking part in the hub.” (Carers Lead)
This cultural preference for face-to-face interactions within care organisations
may introduce biases against assessments for digital solutions. However, for staff
interested in digital options, COVID-19 granted the organisational permission and
resources to accelerate plans for digital solutions they already had in development.
New Evidence
How has digital support worked?
Some participants suggested online tools could increase accessibility
of services for carers. Online tools can be accessed outside of working
hours and eliminate the need to travel. This presented an opportunity for
services. Carers who had previously been hidden from services because
of the difculty carers faced with travelling were now being engaged.
“[We have run] yoga, mindfulness sessions, and the feedback
from our carers is that they helped. What made these better
for carers was the fact that they didn’t have to travel to link
into things.” (Carers Services Development Ofcer)
Digital tools seemed popular for drop-in information sessions and
virtual ‘cafes’. It also enabled targeted work to reach underrepresented
groups, for example, one participant discussed the development
of a closed Facebook carers group for South Asian women.
“We’ve used [online tools] as a way of reaching out to communities
who are quite often underrepresented. We’ve set up a closed
Facebook group, specically for female carers from the South
Asian community, because they weren’t accessing support. It’s
very early days, we literally set it up a couple of weeks ago, but
we’ve got nearly forty women from the South Asian community to
sign up to that as a way of getting information.” (Carers Lead)
These factors provided benets from lower effort engagement, which gave
several participants hope that it would prevent carers spiralling into crisis
and requiring more intense face-to-face support. Instead, carers could
access small amounts of support in ways that were relatively convenient.
“It’s really reaching more carers, which is brilliant, by providing
a sort of preventative early intervention support for them
through peer support and training information that’s all really
useful. […] I see digital is very much a sort of preventative, early
intervention.” (Older People’s Services Commissioner)
New Evidence
What does it take for digital support to work?
Digital transformation has not evolved out of nowhere. Organisations that
have met any measure of success with digital tools for carers have required
resources and labour to achieve their goals. Participants noted several
potential obstacles with implementing digital tools to support carers.
One such challenge is the affordability of devices, software/app licences, and data.
“We have been quite fortunate with the carers service having
received money from [a devolved administration]. We’ve identied
that that has been an issue on the whole, but we’ve been able
to manage it.” (Carers Services Development Ofcer)
The process of helping people access online support involved substantial
labour. Even when an organisation had funding to purchase devices and
data for carers, dedicated staff were required to help carers through
extensive technical struggles, especially if carers had relatively low
digital literacy skills. This required organisations to allocate staff-hours
to pre-existing staff or hire new staff with this new responsibility.
“We’ve spent three hours with the same person trying to tell them
where the Zoom icon is. People didn’t known that you can click
on a link to take you to the call.” (Carers Engagement Leader)
Participants also reected on the limitations of technology implementation. It
was not enough to make a ‘good’ product/service. Service leads needed to
develop the right solution to the right people at the right time in a manner with
which they were willing to engage. A facet of digital transformation that some
services struggled to achieve. To complicate matters, several participants
expressed confusion about why attendance was erratic, or why carers who
provided great feedback did not return for subsequent online meetings.
“It is still quite hard to understand. We surveyed parents. We
asked them what they wanted. We took things outside of the
normal ofce hours, because this is what people said they wanted.
The take-up was better, but it could not be described as good
by any stretch of the imagination.” (Carer Support Worker)
New Evidence
Participants appreciated the drive to match services to carers’ needs and their
care context. One participant used the concept of ‘empathy mapping’ to describe
this matching process to increase carers’ adoption and uptake of digital services.
“Something quite common in the digital world is a user’s journey. [We
create] a user’s empathy map based on how a user’s feeling and
kind of linking [their user journey and feelings] together. Now we
understand more about how the carer is feeling when they join us,
and that they’re scared. We understand the language we need to use
in order to encourage them into services.” (Digital Carer Support Lead)
Sometimes creative solutions led to successful outcomes. One participant described
how they included the whole household in storytime and cooking to great effect.
“We streamed children’s stories. We bought in six online stories, like
The Tiger Who Went to Tea, then we brought cook-alongs. These
were healthy foods packaged and delivered that the children heard
about in the stories. They would go ahead and make the food with
their parent or carer – the mum, dad, whoever – after we streamed the
story. They were massively well attended. They provided children’s
entertainment and cooking together. It involved the full family. They
were so popular. Whereas the carer groups or parent carers had
just been about the adult, you know, parent-carer or the guardian
with no child involvement, because they would be at school. But
[the cook-along] was much more social.” (Carer Support Worker)
This case highlights the importance of adapting digital tools to meet the interests
of carers and cared for people. Successful digital support tools do not constrain
relationships and social connections, they attempt to reinforce and enhance them.
New Evidence
How did the transition to digital
carer support work?
The sudden transition to a sole or dominant digital support for carers
was experienced similarly by the participants. For most organisations,
COVID-19 simply accelerated their digital transformation plans.
“The majority of services that moved were what you might
call support and activities. We moved them online relatively
quickly, and relatively simply, we’ve been thinking about doing
this kind of thing already.” (CEO of Provider Organisation)
“[Digital support] was absolutely a priority [before the
pandemic]. I think in terms of ‘when’ timescales wise, [the
pandemic] just fast forwarded it signicantly. Over the next
one to three years using digital technology was a priority in
our organisational business plan, but we denitely had not
anticipated the speed at which it has happened.” (Carers Lead)
However, some participants expressed concern about the effect this
rapid digitisation may have on organisations and the care sector.
“Covid has severely drained a lot of local authority and national
resources. It’s unclear what [digital support] looks like in
the future, as far as what their budgets allow or whether
they have to prioritise basics.” (Carer Support Worker)
This highlights a potential future obstacle for local authority commissioners
and care providers as they plan their future service offerings. After
reallocating resources to accelerate digital transformation of their services,
how will they ensure sustainability of these services in the future? How
can they catalyse their investment in new technologies, support staff, and
training to best effect for their organisation, workforce, and clients?
New Evidence
What are the plans for the future?
As the United Kingdom’s four nations and other countries slowly experience
eased restrictions, the inevitable question remains, ‘how do services
plan to support carers in the future?’ Many participants suggested
a ‘blended’ offering of digital and face-to-face support options.
“Carers have said to us that what they’re very keen to see is a blended
service approach as we move back into wherever we’re going next.
They don’t want to lose the digital. We were talking about 75 to 80%
digital and 20% face-to-face.” (CEO of Care Provider Organisation)
“The expectation is that we would, to some degree, get out to
see some people, but I think some of the telephone support or
online support might continue for certain things. It might be a
mixture of both going forward.” (Carer Support Worker)
Some participants hoped carers hubs would take more of a ‘ strategic
champion’, ‘inuential role’ or ‘inuencer’ position in the ecosystem
of services, signposting carers to supportive communities, services,
employers, and businesses that were ‘carer-friendly’.
“I would like to see our carers hub taking much more of a strategic
role, so they will mostly be like a strategic champion placing
themselves in quite an inuential role across [the locality]. I imagine
the hub being the strategic champion. It will be a partnership
response with all sectors and different parts of [the locality] behind
it, but the hub will be leading it.” (Older People’s Commissioner)
Several interviewees expressed concern about managing a growing
number of carers. Digital is a key part of their plans to cope. We
have identied three key thematic areas for digital support:
Digital as preventative service. The aim for this approach is to keep people
feeling supported and connected through peer-to-peer connections
without needing to draw much (or at all) on face-to-face services.
Digital as extension to existing services. The aim here is to use less
resource intensive modes by continuing to offer affordable and accessible
online options, e.g., online drop-in sessions and information clinics.
Digital as connections to communities. Here the aim is for digital
technology to foster and sustain carers’ connection with services
and peer communities outside of their local area.
New Evidence
What long term shifts can we anticipate?
The forced adoption of technology has accelerated plans and legitimised
investment in the digital. It may change working practices, but the strong
preference expressed by some staff to return to face-to-face suggests
many want to return to the pre-pandemic status quo. Some digital
shifts may persist despite these entrenched cultural preferences.
The shift to online carer assessments and form lling support may remain
because it is more efcient for carer hubs. Staff may feel more comfortable
working from home. Carers who prefer text or video contact will not want
access to those services disrupted or discontinued. One crucial challenge
for local authorities will be to develop a strategy to sustain digital
transitions that have worked for their organisation, workforce, and carers
they support rather than easily reverting to pre-pandemic behaviours.
We cannot predict how support for carers will continue to adapt as the
pandemic subsides requiring new arrangements for carer support.
Digital technology has helped many people during this challenging
eighteen-month period where many carers were conned to their home.
This technology has served as a catalyst to extend the possibilities of
carer support services, potentially prevented further crises for carers, and
fostered new communities of carers across the UK and internationally.
New Evidence
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Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage. Objective: This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden). Methods: A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions. Results: From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer’s wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare. Conclusions: The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.
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Little is known about the training and support people with dementia and their carers need to use digital solutions. This paper shares learning from a bespoke programme that successfully trained people with dementia or mild cognitive impairment and their informal carers to use a social networking website. This work was undertaken as part of the European Horizon 2020 Caregiverspro-mmd trial (ISRCTN15654731). The training methods described offer an improved understanding of how best to deliver digital skills training that meets the needs of a diverse client group. The effectiveness of the programme is evidenced with qualitative and quantitative data.
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