During the COVID-19 pandemic, social distancing policies limiting physical contact transformed how people were able to access health and care services and sped up digital transformation in many sectors. In the United Kingdom, traditional hospital services rapidly moved from face-to-face to digital services, from simple websites to web-based platforms, to reduce the chance of infection transmission [1]. In primary care, general practitioners (GPs) also adopted a digital first approach for consultations [2]. However, how those organizations that are contracted to support unpaid caregivers adapted their services is not known [3]. Such organizations are not part of the National Health Service (NHS) but are instead contracted by local government [4]. Before the pandemic, expenditure on the services these organizations provided was reduced by 11% over the 6-year period from 2015 to 2021 [5], while 36,000 more carers were directed to their services [5]. It is recognized that unpaid carers play a crucial role in providing essential care worldwide [6]. Bearing these facts in mind, the absence of research on how these organizations moved to web-based delivery, what impact this had on service delivery, their ability to do this without affecting service quality, and the response of client caregivers are noteworthy.

Before the pandemic, an NHS report on the Widening Digital Participation Programme identified that organizations supporting the well-being of carers had largely been forgotten [7]. Currently, many countries are introducing policies of active aging, supporting older people to live independently in the community rather than entering expensive long-term residential care [8,9]. As a result, while the number of staff employed by care homes has remained unchanged from 2012 to 2022 in England, there has been a 27% increase in domiciliary care workers who support people in their own homes [10]. The pressures on unpaid carers have inevitably increased. Currently, the care provided by unpaid carers in England is estimated to be equivalent to that provided by 3.2 million full-time paid care workers [11,12], nearly 6 times the size of the paid workforce of 510,000 domiciliary care workers [13]. In addition, the continuity of care provided by family carers is becoming increasingly important in the context of a high annual turnover of domiciliary care staff (31.5% in England) [13].

Across the world, countries are developing integrated long-term care strategies to support their aging populations as recommended by the World Health Organization [14]. England has established 42 new integrated care systems (ICSs) to underpin integration between health and care services in these geographic areas [15]. Proposals for joining up care include the idea of wrap-around services for care recipients plus their caregivers, but there is no mention of organizations that provide support for unpaid caregivers. Although the national ICS strategy incorporated a digital plan, this currently excludes mention of organizations that support informal carers [16]. Such services are typically provided by charities or not-for-profit organizations that themselves may have limited expertise in digital transformation [17]. In this context, it is important to better understand the experiences of such carer support organizations during the pandemic and the response of the caregivers they support.

This study aims to provide evidence to address this important research gap. The research has 3 main objectives: to analyze changes in service use patterns (including services accessed and the uptake of digital options); to assess any impact on organizational performance, service efficiency, and key quality indicators; and to identify user clients’ preference for future digital services.

We analyzed data collected by an organization providing support for 20,237 caregivers, covering city and rural geographic areas. Data were downloaded and fully anonymized. The uptake of digital and traditional services was examined over a 30-month period from January 2019 (before the pandemic) to June 2021 (after COVID-19–related restrictions were lifted). Service-level performance and proxy quality indicators were constructed and compared for the prepandemic financial year (2019-2020) and through the following initial lockdowns (2020-2021). The analysis of a user feedback survey undertaken at the end of this period (September 2021) explored barriers and facilitators to digital service uptake, the computer proficiency of caregivers, and views on future digital service provision. The organization’s digital preparedness before the pandemic was assessed.

This retrospective study using fully anonymized existing data received ethics approval from the Coventry University Ethics service (P163079).

The study was undertaken at the Carers Trust Heart of England (CTHE). The organization operates in the complex UK sector that provides support for unpaid carers [4]. The CTHE is contracted to provide carer assessments and caregiver well-being services in 2 separate geographic areas: city area (Coventry) and rural area (Warwickshire, including towns and villages). The 2 areas have a total population of 0.98 million, and they are covered by a single ICS. Services provided include an assessment of a caregiver’s needs, information on health and care services, benefit entitlement, assistive technologies, and peer support. Before the pandemic, the CTHE had made a number of changes to its IT systems, moving everything to a single cloud platform so that databases could be accessed from anywhere. Laptop computers and mobile phones had been provided to all frontline staff, all of which greatly facilitated home working. Job descriptions were also adapted to mention hybrid working. Throughout the observation period, the number of CTHE staff providing direct support to adult carers remained relatively constant at 14 well-being advisers, 3 administrators, 3 specialist roles (ethnic minority support worker, mental health worker, and carer trainer), and a manager for each area. A separate team provided support for young carers; this activity was excluded from our study. The CTHE is a member of a network of 124 Carers Trust partners across England, Scotland, and Wales. Members work within a national framework of policies, procedures, and internal quality assurance programs.

Registered adult carers were invited by the CTHE to complete a feedback questionnaire in September 2021 to review provision and help plan future services (Multimedia Appendix 2). Responses were fully anonymized before being provided to the research team, with a minimum target of 60 responses set for analysis. Closed questions requested information on the use of digital services, barriers and facilitators to access, and satisfaction with the services accessed, while open-text comment boxes enabled people to expand on their responses. Respondents were also invited to complete the Computer Proficiency Questionnaire, 12-item version (CPQ-12) to assess their computer proficiency [20]. As well as being made available on the web, feedback questionnaires were also mailed by the CTHE to carers. The characteristics of respondents were compared to those of adult carers on the register where possible. Open-text responses were analyzed for content using thematic analysis and cross-referenced to gain an understanding of the underlying reasoning behind the views expressed [21].

Activity levels demonstrated an increase of 88.8% over 2 years in the numbers of one-to-one contacts and an increase of 20.9% in individual carer assessments (Table 2). At the same time, there was a decrease of 70.6% in numbers attending group activities. Among the 5 proxy quality indicators routinely reported to the funder, those critical to well-being all showed an improvement (ie, feeling less alone, making it easier to cope with caring role, and helping improve physical health), as did the extra 3 indicators constructed (ie, reduced stress, increased control of personal life, and increased confidence). Improvements ranged from 13% for reduced stress (P=.001) to 1% for others (P>.05). The only measure to show a significant decrease was help dealing with health and social care professionals (P=.001). This may, in part, be due to pressures experienced by health and social care staff during the pandemic.

To our knowledge, this is the first large-scale study to analyze the impact of the COVID-19 pandemic on the provision of well-being services for unpaid caregivers. The longitudinal analysis of >20,000 rural and city carers identified, as expected, a move away from face-to-face to web-based service access. The shift observed mirrors those reported by researchers for other services during the pandemic, such as GP practices [2]. However, over the period from January 2019 to June 2021, the number of monthly contacts handled by the carer support organization more than tripled, with no significant changes in staffing levels. Before the pandemic, digital contacts were exclusively by email or SMS text messaging. During the pandemic, additional options were introduced, including Zoom, WhatsApp, and Microsoft Teams, with new web-based group sessions also offered to carers.

Within the context of a 37% increase in the number of carers registered, the organization managed to increase the number of one-to-one contacts by 88.8%. This increase was particularly evident in rural areas, with the ratio of such carers on the register rising from 1 in 10 carers to 1 in 4 carers by the end of the observation period. Rural carers demonstrated slightly different behaviors, showing much slower initial digital adoption rates. In terms of carers’ rating of the service received, 6 of the 8 quality indicators showed an improvement, and the other two showed only a minor, nonsignificant decrease. The largest improvement was observed in reduced stress, consistent with the findings of a systematic review of caregiver web-based interventions [23]. Our survey identified a high level of computer proficiency among carers, at or above that reported for other older populations [20,22]. Even so, respondents expressed a preference for the organization to continue to offer face-to-face services as well as web-based options to meet a carer’s preferences and the type of well-being support required.

Before the pandemic, researchers reported that the uptake of web-based services by older adults in the United Kingdom remained relatively low, despite their potential benefits [24]. A European examination of web-based services available to support informal carers also found a lack of reliability and usability [25]. A qualitative study of the views of caregivers on suitable technologies to assist their caregiving identified similar themes to this larger study, in particular that digital technology needs to be tailored to users’ needs in order to ensure adoption [26]. Although it is acknowledged that there may be a huge potential to use such tools to support unpaid carers, it is recognized that wholesale adoption may risk inadvertently exacerbating existing support through digital exclusion [27]; for example, the testing of digital tools in a real-world setting has identified a digital inverse care law, with those most in need of support least likely to engage with digital health platforms [28]. In addition, a review of eHealth interventions to support caregivers of older adults also highlights the importance of using appropriate language and text, as well as helping caregivers learn how to use the intervention [29].

Our research shows that, during a crisis such as the COVID-19 pandemic, an organization providing support for the well-being of caregivers was able to successfully implement remote service provision using a mix of traditional and digital tools without a detrimental impact on the reported quality of individual contacts and in the context of an increased workload. Systematic reviews of internet-based interventions to support caregivers have to date reported mixed results and called for more high-quality studies [30,31]. A recent review of factors influencing the implementation of eHealth to support informal care found a gap in knowledge regarding success factors and limited focus on the well-being of the unpaid carer, with the focus being principally on the person receiving care [32]. Similarly, studies of telecare that focus on conditions such as dementia usually do not differentiate the caregivers’ needs, instead usually considering the caregiver and the older person or care recipient as a dyad [33-35]. Early in the pandemic, there were some calls to move “carers from the back of the queue” when considering digital services [36]. However, a recent research study of digital interventions for carers of people with dementia still considers need in terms of the dyad, with caregivers in a secondary role [37]. In the United Kingdom, the 2019 report for government on preparing the health care workforce for the digital future recommended that the NHS should work with carer organizations to prioritize the education of patients and caregivers alongside the health care workforce [38].

It is important to consider the indicator that showed a significant deterioration in our study. This was associated with support in accessing health care and social care services, both presumably disrupted by the COVID-19 pandemic. A review of carer support has identified that the ability to coordinate access to such services is particularly valuable, with the integration of home care and community care able to improve outcomes for older people [39,40]. This seems to be particularly important for carers of people with a mental health condition [41]. In Australia, the integration of digital care and clinical care is being assessed to coordinate mental health teams, caregivers, and service users as active partners [42]. The potential for appropriate digital technology to provide support and reassurance is recognized as a benefit for both the caregiver and the person for whom they care [43]. In some parts of the world, volunteers are also being integrated into care to help caregivers use custom-built apps [44].

Investment in innovation to provide optimum support services for informal caregivers could be highly cost-effective. The workforce of unpaid carers represents approximately 6% of the UK population and, together with the 1.3 million registered carers who receive a small carer’s allowance, informal caregivers are widely acknowledged as a crucial component in care delivery [12,45]. Furthermore, since the start of the pandemic, the value of unpaid care provided in England is estimated to be £111 billion (US$ 152.7 billion) [46] and in the United States >US $450 billion annually [47]. The UK government has recently set out a range of policies aimed at empowering unpaid carers, with a dedicated, although small, £25 million (US $26.72 million) budget for this purpose [46]. The danger is that the initiatives will once again focus on caregivers rather the sector that supports them. Thus, the opportunity to integrate organizations such as the one in this study into the wider community-based care system will be missed. This study also questions the stereotype of low digital capability among older carers, with CPQ-12 scores demonstrating high computer proficiency. Even so, survey responses indicate that large-scale naïve digital transformation is unlikely to be effective. Instead of a “one-size-fits-all” approach, there is a need for person-centered support (face-to-face as well as web-based options) as part of the service, together with training for those who need it. Meanwhile, there are emerging indications of a move toward providing solely web-based support, with some suppliers looking ahead to younger and more digitally engaged carers who are assumed not to require face-to-face services [48]. The lower cost of web-based support services may make this seem an attractive option for commissioners in the United Kingdom. A similar situation has occurred in primary care with disruptive innovators entering the NHS market to provide web-based GP services, with the evaluation reporting mixed findings and providers withdrawing from some NHS contracts [49]. For any caregiver support service evaluation, as well as delivery costs, there will need to be a careful consideration of utility (ie, quality and effectiveness from the user perspective) [50]. Although this study was set in England, the findings will be relevant for other countries where digital services to support the well-being of informal caregivers are in use or are being developed.

There are a number of limitations to this study that need to be acknowledged. First, it is unclear how representative, in terms of its digital readiness, the organization studied is of the whole sector. There are no national audits of such carer support organizations, although it is known that >60% of care homes still use internet connections that will not support full digital transformation [16]. Second, the cohort excluded young carers, which inevitably limits generalizability to the wider population of carers [51]. In addition, an important subgroup (working caregivers) could not be identified due to limitations in the data. A quarter of older workers in England currently have caring responsibilities, and this percentage is expected to increase as the population ages [52]. Third and last, although we identified a high level of computer proficiency in survey respondents, this may not be fully representative because most of the respondents (136/152, 89.5%) completed the survey on the web. Further research is needed to provide evidence on these subgroups before drawing any final conclusions about web-based support services.

Looking to the future, the integration of health care and care services to meet the complex care needs of a country’s aging population is recognized as a global challenge [53]. Considering the importance of unpaid carers, more attention needs to be given in all national strategies to organizations that support this important free workforce. Our study highlights a number of issues worthy of further consideration and study that have implications for the design of future cost-effective digital initiatives. These include the lack of any audits of the digital readiness of organizations that provide support for caregivers; the need for a better understanding of rural carers; evidence of the cost-effectiveness as well as the use of different forms of support for caregivers; and the potential for collaboration among different partners within ICSs to better support unpaid caregivers, enhancing their access to, and engagement with, support services after the COVID-19 pandemic.