Patients’ and carers’ experiences of, and engagement with, COVID-19 remote home monitoring services

Overview

This chapter draws on a manuscript by Walton et al.165 published in Health Expectations (2022): https://doi.org/10.1111/hex.13548. This is an open access article under the term of the Creative Commons Attribution 4.0 International License (CC BY 4.0), which permits use, distribution and reproduction in any medium, provided the original work is properly cited (see https://creativecommons.org/licenses/by/4.0).

What was already known

• Remote home monitoring services for patients with COVID-19 have been implemented throughout England.
• These services may place more responsibility on to patients/families.
• It is not known how patients and carers experience these services, or how they found engaging with the activities.

What this chapter adds

• Patients and carers found the human contact with staff reassuring.
• Patients with COVID-19 (an acute condition) can engage with remote monitoring services but may require support from staff and family/friends to do so.
• Engagement is conditional on a range of factors including patient factors, support and resources, and service characteristics.
• Burden of treatment may be experienced by patients and families with acute conditions.

Introduction

The shift in health-care delivery from traditional face-to-face care models52 towards remote home monitoring models22,169 is consistent with recent moves towards self-management and patient activation within health care, whereby accountability for care has changed.170–173 Patients are becoming more involved in self-management, for example, learning how to detect and manage their symptoms, and treatments, and escalation of care associated with their condition,51,174–178 and health-care tasks (e.g. managing medication, organising care appointments, taking measurements).179 While some patients may welcome this move,180 there have been concerns that self-management and models such as remote home monitoring shift burden (including responsibility, commitment and workload) on to patients and families, rather than facilitating shared care.171,180 This may not be suitable for everyone,181 as some people may be unable to meet expectations and may experience negative impacts from treatment burden171 – for example, health consequences faced by patients due to not adhering to treatment and professional, social, emotional and financial consequences.179 Different individuals may tolerate different levels of treatment burden, and needs should be assessed regularly as tolerance changes over time.171,182 As many situational, personal, and structural factors can worsen treatment burden,179 formal and informal support networks are needed to support patients.50,51

Treatment burden may negatively impact on patient experience and levels of engagement. This is problematic given that patient engagement with remote home monitoring is crucial. Patient engagement has been defined as patients understanding the information they are given (‘receipt’) and being able to perform the required activities (‘enactment’).57,58 For this service, engagement refers to the behaviours that patients must undertake as part of the service – for example, reading/listening to and understanding the information given to them by the service, using the oximeter to take readings, recording and submitting readings and self-escalating care as required. If patients do not engage with these services, they may be at risk of negative outcomes, such as silent hypoxia (very low oxygen saturations, often without breathlessness)13 and/or delayed admission to hospital.15,16 Additionally, limited engagement makes it difficult to evaluate whether or not these services influence key outcome measures such as any changes in mortality or hospital use.

While previous research indicates factors which may influence patient engagement with treatment models more generally,50,51,171,179 there is a lack of research on patient experience and engagement with COVID-19 remote home monitoring services (see Chapter 3 or Vindrola-Padros et al.32 and Vindrola-Padros et al.36). This chapter addresses this gap by evaluating patient experience of, and engagement with COVID-19 remote home monitoring services.

This study aimed to explore what formal and informal support patients received as part of COVID-19 remote home monitoring services, and patient experience of, and engagement with these services. This chapter addressed the following questions:

1. What types of formal and informal support did patients receive as part of COVID-19 remote home monitoring services? What was the burden of treatment on patients and carers in informal support roles?
2. What were patients’ and carers’ experiences of engaging with COVID-19 remote home monitoring services?
3. What were the factors influencing burden of treatment and ability to engage with COVID-19 remote home monitoring services?

Methods

A summary of the methods is provided below; further details can be found in Chapter 2 (or Walton et al.165).

Design

This chapter draws on data from workstream 3 (patient and carer survey data) and workstream 4 (patient and carer interviews). Data collection took place between February and June 2021 (patient surveys retrospectively included January).

Sample

Patients and carers who had received COVID-19 remote home monitoring services (see Chapter 2 and Chapter 4 for site and patient sample details).

Measures

We developed the survey and semistructured topic guides specifically for this study (see Chapter 2, Project website documentation – Study instruments).

Data collection

We conducted a survey with patients and carers from 25 sites and interviews with patients and carers from 17 sites (see Chapter 2 for details).

Analysis

Survey data were analysed using descriptive statistics (using SPSS, version 25). All cases were analysed (whether carer, patient or unknown). Where data were missing for specific questions, cases were excluded from the analysis and the denominator reported. Open text responses for three questions (434 responses for anything else to say about the service, 61 responses for how carers supported friend/family member while they had COVID-19 and 200 responses for recommendations to improve service).

Inductive thematic analysis was used to analyse interview data inputted into RAP sheets.70 We then developed a framework based on these themes and subthemes and one researcher used this framework to extract quotes from all original transcripts.

Survey and interview findings were triangulated.

Results

Participant characteristics

Surveys were received from patients (n = 936) and carers (n = 48), and 62 interviews were conducted with patients (n = 59) and carers (n = 3). See Chapter 4 and Report Supplementary Material 2 for demographics.

Most patients were referred to services via community methods (Table 17). Patients and carers used a range of methods to record and report their readings to the service, including analogue (paper and phone) and tech-enabled methods (Table 17).

What type of formal and informal support did patients receive as part of COVID-19 remote home monitoring services?

Formal support from staff

The ‘care’ on offer differed across sites and patients, with variation in the type and frequency of monitoring offered by services (see Chapter 4).

The frequency with which patients had contact with a member of staff ranged from several times a day to not at all. Most patients and carers had contact either once a day, or several times a week. A few patients and carers reported not speaking to staff at all (Table 18). Findings indicate that patients were supported by staff throughout different stages of the service, including providing information, monitoring, escalating care, signposting and comfort and reassurance.

Burden of treatment on patients and carers in informal support roles

Survey findings indicated that almost all patients used an oximeter to record readings when receiving the service. Many patients reported completing a diary and providing readings over the phone or using technology-enabled methods. Escalation-related behaviours (seeking further help, checking readings) were reported less frequently by patients (Table 19).

Many patients were supported by family and friends to engage with the service. One-quarter of survey respondents needed help to use equipment (25%, range 11–50% across sites), and more than half of the interview participants were supported by family members.

Most patients and carers reported having informal support to help them use the oximeter and support with taking and recording readings (Table 20). Qualitative findings highlighted that family and friends provided support with many activities, including support submitting readings, monitoring and collecting the oximeter. However, not all patients had support with using the oximeter (16%) or taking/recording readings (18%). Some patients did not have support due to their family members having COVID-19.

What are patients’ and carers’ experiences of engaging with COVID-19 remote home monitoring services?

Patients mostly had positive views of the services; 93% (n = 970/1045) of survey respondents rated services as excellent or good, 90% (n = 923/1028) of respondents found the services helpful and 91% (n = 944/1037) would recommend the services to their family and friends.

Findings indicated that most patients and carers found the services reassuring and supportive (91% (n = 946/1040) of survey respondents). Qualitative findings indicated that patients and carers valued the human contact with staff and found it reassuring due to having someone watching over them, particularly for those who were living alone, had no support nearby or had existing conditions.

Because it’s obviously keeping an eye on you, isn’t it really? And I was getting the phone calls every day. How are you feeling? [. . .]. But someone who was on their own, who had no- who was living on their own, you know, it’s a bit of a lifesaver isn’t it?

A minority of patients and carers felt that there were gaps in the service, and it was not holistic. Some felt that services were narrowly focused on managing known symptoms of COVID-19 which did not always suit those with other symptoms, health conditions or who required wider support. A few patients reported feeling that services were isolating and unsupportive (e.g. they only received a call about the oximeter drop-off/return, but not for monitoring).

Most patients and carers felt the care provided was appropriate and preferred to be at home instead of being in hospital (given the pandemic context). Reasons for preferring home over hospital included freeing up space for others in need, fears of going to hospital during a pandemic, and communication barriers. However, some patients and carers spoke about preferring to be in the hospital rather than at home, to feel more secure, feeling scared and wanting to be seen face-to-face.

And I didn’t feel too embarrassed that I was using up valuable resources because I thought, Well I’m sitting here at home, there’s no reason for me to go in Hospital, bother anyone and waste people’s time.

A minority of patients and carers spoke about how these services were the only available care and that they would have liked to have received care from other health-care professionals such as their GP in parallel. Many patients and carers were not aware of these services prior to referral.

Some patients and carers also spoke about how these services helped them to monitor their own improvement and that it potentially improved their outcomes.

Patients and carers reported very positive views of the workforce and that they were helpful and put patients at ease and were professional and potentially even life saving. Continuity of staff was thought to be important.

A few patients had negative experiences with individual staff members (e.g. that they were dismissive, did not recognise that they needed help, were not interested or lacked clinical expertise to support patients or answer their queries).

What are the factors influencing burden of treatment and ability to engage with COVID-19 remote home monitoring services?

Findings indicated that patients and carers generally found it easy or very easy to engage with these services and the resulting activities, including understanding information, monitoring using the oximeter, recording readings and providing readings and escalating care (Table 21). Most survey respondents indicated that they did not experience problems with services (72%, n = 771/1069) and did not report barriers to engagement with services (80%, n = 858/1069).

Engagement with service activities was not without challenges, with some patients and carers reporting issues with the information provided or needing further information. Some patients found monitoring difficult due to other health conditions, or that monitoring made them feel worried. Some patients and carers wanted more support or found recording burdensome. Finally, some issues related to escalating care were identified in the interviews. The uncertainty of COVID-19, perceptions of hospital as a frightening place and uncertainty around interpretation of readings and thresholds, meant that some patients and carers were hesitant to self-escalate their care, waited for a member of staff to advise them to escalate their care or reported not wanting to go to hospital or seek further support, even when advised to by staff members.

really I should have probably rung when the readings were that bad but I didn’t. [. . .]And when I did send them through they said, ‘No, get to the doctors now’.

The most frequent challenges reported within the survey were returning the oximeter, contacting health-care professionals when needed and seeking further help (Table 22). While many survey respondents discussed problems with the team (35%, n = 87/249) or had their problems resolved (33%, n = 76/232), over half of these participants said problems had not been resolved (54%, n = 126/232).

Findings from the surveys and interviews indicated three overarching themes that influenced burden of treatment and patient’s ability to engage, with COVID-19 remote home monitoring services: (1) patient factors; (2) wider support and resources; and (3) service factors (see Report Supplementary Material 8 for example quotes).

Patient factors

Knowledge, memory, physical health, attitudes towards services and having time to complete the required tasks influenced engagement (see Report Supplementary Material 8). Interview findings indicated that patients in poorer health (e.g. due to COVID-19, other health conditions) found it harder to engage with the service. Patients and carers who felt they had sufficient knowledge about what they needed to do found it easier to engage [e.g. 55% (n = 583/1069) of survey respondents felt that knowing what to do helped them to engage with the service]. On the other hand, a lack of knowledge on how to complete the activities limited engagement.

Wider support and resources

Support from staff/service, support from family members/friends, accessibility and availability of materials, equipment and technology influenced engagement (see Report Supplementary Material 8). For example, support from staff members (e.g. 46% (n = 488/1069) of survey respondents) and family/friends [e.g. 25% (n = 266/1069) of survey respondents] was crucial in helping many patients to use the service.

Service factors

Monitoring characteristics, service characteristics, scope of service and availability of treatment influenced engagement (see Report Supplementary Material 8). For example, some participants felt that the inconsistent timing of calls was a barrier, and some felt that calls were too frequent, whereas others felt they were not frequent enough. Additionally, some patients and carers felt that service scope was a barrier to engagement, in that it did not cover wider symptoms of COVID-19 and was not holistic.

Discussion

Key findings

Patients can engage with remote home monitoring services, even when experiencing acute illnesses (e.g. COVID-19). However, many patients required formal input from staff and informal support from family and friends to complete the necessary tasks. Patients and carers had positive experiences receiving remote home monitoring. The human contact from staff provided patients and carers with reassurance and patients reported services were mostly easy to engage with. However, patients’ ability to engage with services was conditional on a range of factors, including having support from family/friends and staff, being in good health and receiving clear instructions on what they needed to do and how to do it, and the level of commitment from patients while on the service.

How findings relate to previous research

Previous research highlighted that little was known regarding patient experiences of COVID-19 remote home monitoring services in the context of pressured health services and concerned patients (see Chapter 3 or Vindrola-Padros et al.)32,36 These findings extend earlier findings by highlighting patients’ and carers’ positive views of the service, challenges and concerns relating to engagement with remote home monitoring for acute conditions, and tangible recommendations on how to improve remote home monitoring services (see Appendix 3, Table 26), many of which support wider themes reported in patient experience literature (e.g. the importance of information provision).183,184

Previous research outlines concerns relating to remote care and telemedicine and the loss of interpersonal dimensions involved in caring relationships.170 Findings extend the evidence base by showing that care does not need to take place face-to-face for patients to feel reassured and supported. Patients largely felt that care provided at a distance was appropriate and that they were being monitored. This is consistent with previous research indicating that technology may support closer contact with professionals.170 However, findings may have been affected by the pandemic context in that data were collected during the height of wave 2 of the pandemic, so patients may have been more likely to accept remotely delivered services to help minimise risk to themselves, family members and staff. Patients and carers may feel differently about remote home monitoring and care delivered at a distance in non-pandemic contexts.

New models of health care such as COVID-19 remote home monitoring services sought to change the traditional model of in-person care. Instead, within these models, staff engage with patients to share the care burden while equipping patients and carers to self-monitor and manage care in the absence of staff members. Our findings demonstrate that concepts of treatment burden and difficulties engaging with health-care demands171,179,182 also apply to remote monitoring models for COVID-19. Some patients reported problems engaging with remote home monitoring services for a range of reasons, including feeling too poorly, not having enough knowledge on what to do, and lack of support from staff and/or family/friends. Others reported the necessity of support from their family/friends when engaging with the service. This extends knowledge by showing that social networks may undertake self-monitoring tasks on behalf of (potentially very poorly) patients in addition to helping patients cope with burden of treatment171 and self-management of conditions.51,185 Those who feel more poorly (either due to COVID-19 or existing conditions) may require more formal or informal support to manage care. Yet, this increases the caring burden for family/friends. This finding also raises concerns regarding appropriateness of care for those who do not have informal support networks in place.

This chapter builds on earlier research by providing a nuanced interpretation of the factors that influenced engagement with remote home monitoring services for acute conditions such as COVID-19. Our finding that many non-health related factors influence engagement is consistent with other studies in a range of other conditions and interventions.51,179,186–189 Our findings add to prior knowledge by demonstrating that many factors were exacerbated due to the acute nature of COVID-19 and policy factors surrounding COVID. For example, physical health factors limiting engagement may be worsened by the acute nature of COVID-19 and the severity of symptoms that some patients faced, thus affecting a patient’s ability to engage. Furthermore, policy regulations and lockdown restrictions imposed within the UK may have meant that physical social support available to patients may have been limited by members of their support networks living elsewhere. As COVID-19 is easily transmissible, social distancing recommendations were in place, therefore, many patients were distancing from family members living in the same space. Findings demonstrate that despite difficulties imposed by COVID-19, social networks were crucial for many patients in facilitating engagement with services and ensuring that care needs were met. This highlights the need for alternative support where necessary (particularly for those living alone or those who are socially isolated). The reliance on informal support networks has implications for burden of treatment and may not be appropriate for all individuals. These findings support previous theoretical frameworks indicating that social, political and technical contexts influence engagement.49–52

Previous research has explored concepts of self-management,50,51,186 engagement187 and treatment burden179 in chronic conditions, but little research had been conducted on remote home monitoring and self-management in acute conditions such as COVID-19 in which care needs to be urgently escalated in an efficient and time-sensitive manner. Findings extend earlier work by demonstrating challenges of remote home monitoring models for acute conditions. For example, due to uncertainty of COVID-19, perceptions of hospital being a frightening place and uncertainty around readings and thresholds, some patients were hesitant to self-escalate care and in many cases, patients waited until advised by staff to escalate care. This finding indicates that in situations where there is a need for timely escalation, but concerns around infection transmission from going to hospital, it may be suitable to have formal support from staff members. Together, staff and patients can collaboratively decide when to seek further help, rather than placing responsibility on to patients. This finding contrasts with recommendations within the national SOP for COVID-19 remote home monitoring services,38,39 which indicate that pathways should encourage patients to self-escalate care.

Some patients felt that they were able to engage with services because they had manageable symptoms and felt comfortable with tasks. This indicates that different levels of remote monitoring support are needed for different individuals. This finding supports previous research indicating that the success of telehealth services including remote home monitoring may rely on the fit between individuals’ needs and services.50,170

Strengths and limitations

Integration of mixed-methods data helped to provide in-depth perspectives on patient and carer experiences of, and engagement with COVID-19 remote home monitoring services.

Findings may not be representative of all patient and carer groups and experiences, for the following reasons: (1) our patient sample was under-representative of some groups (e.g. older patients and ethnic minorities) and over-representative of other groups, when compared with patient onboarding data,114 (2) survey response rate was only 17.5%, and (3) we were unable to recruit patients who had declined or dropped out of the service, or who did not want to take part in the research.

The focus of our research was on patients’ experiences of remote home monitoring services. Therefore, it is possible that we have not captured carers’ experiences in detail. However, some carers shared their own experiences during the interviews and in responding to the survey.

Implications

Burden of treatment may not only affect those with multimorbidity or chronic conditions, but can also affect those with acute conditions. Findings indicate that remote monitoring may increase treatment burden for some patients and families.

COVID-19 remote home monitoring services aimed to target patient groups at higher risk from COVID-19, yet many of these groups appear more likely to report difficulties in engagement with these services (e.g. older patients and those with health problems). Remote monitoring may not be appropriate for everyone (e.g. those without support). Services need to gauge a person’s support network and any concerns surrounding remote home monitoring when assessing eligibility for these services. Services must then tailor the health-care offer to enable patients to engage (e.g. providing further support for those from at-risk groups or who do not have informal support, or linking patients with care networks if needed). All patients should be given contact details to contact services should problems arise. Face-to-face support (e.g. for monitoring) from staff and families has implications for infection transmission.

These findings may have implications for remote home monitoring services more generally. Service developers should consider the type of condition when designing pathways. For example, services for acute conditions may require support from staff to ensure that patients are escalated for further care as necessary. Services must plan logistics for delivery and collection of equipment, ensure sufficient information provision and that patients know what they need to do and that they feel able to engage with the service. Some patients felt that services offered were too narrow and do not consider wider social, emotional or condition-related needs. Service adaptations may be necessary for those receiving remote home monitoring for acute conditions in addition to care for other chronic conditions.

Future research

Further research is needed to explore: (1) experiences of those who decline or disengage from these services; (2) burden of treatment for acute conditions versus chronic conditions; (3) which groups are able to engage with and tolerate burden from remote home monitoring services; and (4) the impact of treatment burden from informal caring responsibilities on families.

Conclusions

COVID-19 remote home monitoring services place a large responsibility on patients and carers in relation to monitoring and escalating care. While patients and carers found services reassuring and a positive experience, many factors influenced their ability to engage. This indicates that services may be conditional on a range of factors relating to the patient (e.g. knowledge and memory), their support and resources (e.g. support from family, friends and staff) and service factors (e.g. service scope and frequency of monitoring).