Exploring barriers to participation and adoption of telehealth and telecare within the Whole System Demonstrator trial: a qualitative study

Within many healthcare systems, there has been a growing focus on the value of telehealth and telecare interventions for improving quality and cost-effectiveness of care for people with long term complex health and social care needs [1]. Such technologies are varied, but a distinction is generally drawn between ‘telehealth’ and ‘telecare’. Telehealth interventions allow remote exchange of data (e.g. blood glucose and blood pressure readings) and additional information between a patient and health care professional(s) to assist in the diagnosis and management of a health care condition(s). Telecare allows the remote monitoring of changes in an individual’s condition or environment in order to manage the risks of independent living. Examples include sensors to detect movement, falls, flooding and gas [2].

Telehealth and telecare interventions have been evaluated in various international settings. Some evidence of positive outcomes has been reported including improved clinical indicators and reduced health service use [3], as well as enhanced feelings of security and increased satisfaction with health and social care services [4]. However, a number of studies have demonstrated that these types of interventions often fail to be successfully implemented and adopted within routine healthcare [5]. Additionally, evaluation studies and trials have reported recruitment difficulties with up to 80% refusal rate [6]. Survey studies have been able to summarise and quantify some reasons why potential participants refuse to join such trials, with frequent reasons described as participants being too busy, discomfort with the technology, belief that the technology could not help them, and preference for existing services [6–8].

Whilst survey studies have provided figures on categories of reasons for refusal, they are unable to explain responses including why people have discomfort with the technology, why they believe the technology cannot help them, or why they prefer existing healthcare arrangements. These questions can best be addressed using qualitative research methods [9]. Such methods are increasingly being viewed as an important component of trials of complex interventions [10, 11] with a number of qualitative and mixed method studies providing important insights regarding factors influencing poor recruitment for trials [12], and more specifically, the ‘non-adoption’ of e-health innovations such as a personal electronic health record [13].

More broadly, there has been an increasing focus on the use of health related technologies in older age, questioning assumptions made about needs, use and phobia of such technologies [14, 15]. A number of studies have focused on the use of home-based health related technologies in the context of older age and consider some key issues regarding such interventions which are increasingly being deployed as part of efforts to reduce the burden of long-term care on formal services, by supporting community based self-management. The capacity for specific technologies to promote independence and enhanced self-management is complex. For example, ambivalent ideas about domiciliary oxygen therapy in one study indicated perceptions that it fostered greater independence, but on the other hand there were concerns that the technology could induce dependence on its use [16]. Similar issues were raised by Lehoux et al. who studied four technological health care interventions at home (IV antibiotic therapy, parenteral nutrition, peritoneal dialysis and oxygen therapy). They found that patients were ambivalent about the benefits and drawbacks of technology because whilst technology can be pivotal in making patients autonomous, it also imposes heavy restrictions that are intimately interwoven with the nature of the particular disease and with the patients’ personal life trajectory [17].

Gitlin et al., highlight that acceptability of assistive technologies for older people is dependent on whether the device is perceived to support or undermine their sense of identity [18], and there has been some concern amongst key stakeholders regarding the impact of telecare interventions on autonomy associated with close surveillance [19]. McCreadie and Tinker also stress the importance of researching ‘felt need’ because their respondents were often managing bravely in difficult circumstances but did not see themselves as needing help [20]. These studies raise important issues to consider in exploring the barriers to the use of technologies for supporting self-care including TH and TC which are further explored in this paper.

Within the UK, the 2006 white paper ‘Our health, Our Care, Our Say’ published by the Department of Health focused on telehealth and telecare technologies as ‘pointing the way to the future’ for supporting people with longer-term health and social care needs [21] (p.118). The paper promised a series of demonstrator pilots and a plan ‘to motivate all commissioners to drive services in this direction’ (p.120). The acceptability of these technologies to potential recipients is therefore important for policy-makers and health and social care staff involved in any future roll out. The plans set out in the white paper led to the design and conduct of a large scale randomised controlled trial of telehealth and telecare technologies across the south of England: the Whole System Demonstrator (WSD) evaluation project. This paper reports a nested qualitative study within the WSD programme designed to investigate reasons for declining or withdrawing from the main trial. This became an increasingly salient issue as similar to other evaluation studies, rates of refusal were a concern and early reports highlighted the slow recruitment because of the ‘patient not wanting’ the interventions [22]. Of those who agreed to receive a visit at home to discuss the potential installation of TH or TC equipment (n = 9214), and to be assessed for eligibility to join the trial, 36.7% (n = 3384) did not enter the trial.

A focus on the reasons for non-participation in the trial is important because the problems of non-participation and barriers to adoption of TH and TC have been acknowledged but not yet addressed in published evidence [23]. Additionally, perceived priorities regarding discussions on the potential benefits of remote monitoring are often based on assumptions rather than empirical understanding [24]. Existing research on reasons for non-participation in randomized controlled trials and other research has helped to demonstrate the complex issues regarding recruitment to trials. Such studies have found that common barriers to participation include general concerns with the trial setting and the research process; and more specifically, concerns about randomization [25–27]. In focusing on non-participation and withdrawal from the WSD trial, this paper has some overlaps with the wider literature on non-participation and withdrawal from RCTs. However, the paper mostly reflects the focus of participants on the potential impact of telehealth and telecare if they were to take part in the trial. The latter is illustrated via data presented in subsequent sections of the paper and we return to this point in the final discussion.

Participants were recruited from across three sites taking part in the trial: Cornwall, Kent, and the east London borough of Newham. All Primary Care Trusts (PCTs) and Local Authorities within these sites took part in the trial. The randomised controlled trial was a cluster design (reported in detail elsewhere) [2], in which general practices were randomised to receive access to telehealth or telecare for their populations. Additionally, participants randomised to the control arm were offered telehealth or telecare following re-assessment at the end of the 12 month trial. Telehealth eligible patients had one of 3 index conditions: diabetes, chronic obstructive pulmonary disease (COPD), or heart failure (HF). Telecare eligible participants were diverse, but were eligible if assessed as ‘at risk’ for independent living. Telehealth equipment included a monitor unit via which recordings from peripheral devices (measuring blood pressure, blood glucose, blood oxygen level, weight, peak flow) were to be uploaded to a monitoring centre. The peripheral equipment was allocated in various combinations contingent upon initial assessment of need. The monitoring centres prioritised and tailored response according to need based on the information received. Telecare interventions also varied according to assessed need but included various sensors to detect gas, water overflow, falls and movement around the property. Such sensors would trigger alarms direct to a monitoring centre if anything abnormal was detected, allowing emergency intervention.

Following cluster allocation of practices, eligible patients within practices were then approached to take part in the trial and to receive the technology where appropriate. Details of the process of recruitment to the trial are published elsewhere [2, 28], but key stages included sending a letter requesting permission from potentially eligible patients to allow data to be passed to the WSD teams (known as the ‘data sharing letter’) so that they could be contacted to discuss eligibility for the interventions and the trial. Where permission was granted, patients were telephoned at home for an initial discussion about the interventions and the trial. They were then asked if they would be willing to receive a home visit to have a more detailed discussion about the interventions and the trial; and to assess eligibility. The home visit was then conducted by members of the implementation teams in the 3 study sitesⁱ, and here patients were shown information cards with images to describe the equipment that would be offered if they joined the trial and in some cases, they were shown samples of the peripheral telehealth equipment or telecare devices. At this visit, people were asked to sign a consent form if they agreed to take part. If they did not want to consent to join the trial at this visit, staff could then ask them whether they would be willing to receive information about the qualitative study which was aiming to include a number of people who were not taking part in the trial. Consequently, participants for the qualitative study were recruited following the home visit and assessment outlined above.

We initially planned to sample purposefully to aim for maximum variation [29] in terms of gender, age, ethnicity, as well as health and social care needs. We had also planned to sample theoretically, according to iterative analysis of initial interviews. However, circumstances of recruitment necessitated an opportunistic approach. This is because sampling was contingent upon health and social care staff within the trial sites gaining verbal consent from potential participants at the home assessment visit to be contacted by the evaluation team, and this did not systematically happen.

Sixty-one people who did not enter the trial after the initial home visit were telephoned after receiving an information sheet and letter inviting them to take part in a one-off interview to explore their current health or social care arrangements as well as their reasons for not taking part in the trial. Nineteen people agreed to take part and a further three who withdrew from the trial after joining the intervention arm ⁱⁱ. Forty-two out of the 61 declined to take part in the qualitative study when telephoned. Despite declining to be interviewed, most people offered some information regarding their reasons for declining to take part in the trial during the telephone call and agreed that the information could be recorded: 8 stated that they (or the person they cared for) were too ill or incapacitated; 8 did not understand the intervention and why they were being offered to join the trial; 11 did not think they needed TH or TC and/or did not want it; 3 thought the trial was too disruptive; 6 cited personal reasons (e.g. going away, death of a family member, work commitments) for not taking part.

Interviews were conducted by CS and RB and included topics such as the history of health and social care problems, previous and current care arrangements, perceptions of the equipment and the trial, expectations of the intervention and the potential impact on management of health and care needs. With the exception of one respondent ⁱⁱⁱ, interviews were audio-recorded and transcribed. Transcript data and field notes were organised with aid of Atlas.ti and the data were analysed thematically using some of the techniques of a grounded theory approach including constant comparison whereby we compared the data across cases to elicit common key themes and unusual cases [30]. Analysis of qualitative data often falls into three stages: data reduction, data display and conclusion drawing; and variations of a grounded theory approach tend to echo these three phases via open coding (data reduction), axial coding (data display), and selective coding (conclusion drawing) [31]. Three members of the team (CS, RB, AR) independently coded interview data using an open coding technique in Atlas.ti and each member of the team entered codes into separate versions of an Atlas.ti hermeneutic unit. This process enabled team members to become immersed in the data and develop early descriptive and brief codes (e.g. access to services, care routines, relationship with GP, use of technology). A number of early codes represented secondary constructs derived from previous research on chronic illness experience including ‘biographical disruption’ and ‘coping’ [32]. These initial codes were discussed at regular team meetings in order to develop and refine the initial codes into key themes. As part of this process we wrote notes and memos to move from the simple descriptive codes to more critical codes and three over-arching themes which are outlined in the results section of the paper. The whole approach to analysis reflected elements of both deduction and induction because we had some preliminary ideas about factors that might influence decisions to decline participation (based on previous research in the field), but we were also open to being surprised by the data in order to allow new and unexpected findings to emerge. This is commonly the case in grounded theory approaches which tend to entail a constant interplay between induction and deduction [33].

In keeping with an iterative approach common in qualitative research, analysis of the initial interviews informed subsequent interviews and prompted additional observational data collection from home visits where the intervention and the trial were explained as part of the consent process. This was because early respondents indicated a lack of understanding about the equipment and the trial when describing the initial visit when information was imparted. Observational work was conducted by CS and RB, and comprised shadowing of 8 members of health and social care staff (1 or more in each site) conducting home visits to 23 people (additional to the people interviewed). Field notes were made of observational visits and explored thematically alongside interview data. The data presented in the paper are taken primarily from interviews but with several illustrations from the observational data within each of the themes.

Analysis revealed a number of factors contributing to decisions to decline or withdraw from the trial within the following themes: requirements for technical competence and operation of equipment; threats to identity, independence and self-care; expectations and experiences of disruption to services.

This study demonstrates that reasons for declining the possibility of using telehealth and telecare equipment for those invited to join the trial were often explained in terms of potential threats to existing self-care, independence and service arrangements, as well as concerns about competency to operate equipment linked to general views about contemporary technologies. Additionally, insufficient information and discussions about expectations regarding the interventions contributed to decisions to decline or withdraw from the trial.

Perspectives on health, self-care and dependency associated with decisions to decline the trial indicated that technology had the potential to define their health problems as something more serious than they felt it was or should be because it was stereotypically associated with being very sick, very old or highly dependent. This was even the case for some respondents with severe symptoms, and where people indicated a perception that TH might speed up an inevitable process of decline. Previous research demonstrates that people are often keen to distance themselves from negative stereotypes of ill health and ageing [34], and that health-related interventions, including telehealth and telecare, can be perceived to undermine identity and autonomy, especially amongst older people [19, 20, 35]. This study demonstrates how anticipation of such negative effects can impact upon rates of adoption for these interventions. However, whilst the majority of respondents in this study depicted themselves as too healthy and too independent for the interventions to be of value, the small number of respondents who depicted the people they cared for as ‘too sick’ or ‘too dependent’ demonstrate that these interventions can end up falling between two stools. This underscores the deep ambivalence that can be found towards home-based health technologies [17], and the varied perceptions about whether telehealth and telecare interventions should be used as a preventive strategy or a mechanism for crisis management that tend to be context dependent [36]. This implies that attempts to integrate these technologies across all levels of need, from those who predominantly self-manage, to those who require complex case management, would require a degree of cultural shift in the way such interventions are perceived. It also implies that interventions should be tailored to ensure they will fit in with life circumstances and individual approaches to self-management because one intervention is unlikely to suit all people with the same long-term condition. In addition, the responses from some carers suggest that these devices have the potential to undermine important aspects of care with implications for caring roles. This highlights the importance of carers’ perspectives when evaluating such interventions, and the need for a wider range of programmes to address carers’ diverse needs [37].

Whilst previous concerns have been raised about violations of privacy via telehealth and telecare interventions, the respondents in this study seemed to be less concerned with privacy, than with the psychological effects of monitoring that might make them focus on or become over anxious about their health. Many accounts indicated that part of their existing approaches to self-care included a desire for their long-term health problems to fade into the background within day-to-day life, and responses reflected their busy and active lives. Thus, they did not feel comfortable with the time pressures and disruption that equipment might bring, and some felt uneasy about the effects of intensive monitoring. Previous studies have described the challenges brought by the new ‘work’ and scrutiny associated with such interventions [12, 38, 39] and where the disruption of normalised everyday practices and interactions regarding management have been recognised a major barrier to the integration of e-health interventions into routine care and management [13, 40, 41]. The current study shows that anticipation of such changes can prevent people from trying out these interventions in the first place. This finding resonates with the analysis of May et al. who suggest that poor uptake of and adherence to interventions for complex chronic conditions are often due to the heavy burden on patients and the lack of congruence with patients’ perspectives on care [42].

It was evident that many respondents were somewhat ambivalent about using the technology to begin with because all of them had agreed to have a home visit with a view to possible installation of equipment within the trial. However, discussions about decisions to decline the trial indicated that concerns about competency to manage technology, or concerns about costs were sometimes compounded or left unaddressed at the home visit. This finding resonates with previous qualitative research within trials highlighting the importance of how information is imparted and discussed can have a major impact on recruitment [12].

Comments regarding current services indicated that respondents were reluctant to disrupt services that were currently working well and that they often valued highly. Much of this satisfaction seemed to be associated with stable relationships that had been developed with specific service providers and there were concerns about what changes the equipment might bring to those relationships. These concerns were borne out in those who had withdrawn from the trial after receiving the devices. They experienced service changes that they found difficult to cope with. These views and experiences highlight the importance of organizational context, and indicate that telehealth and telecare interventions might be more readily adopted if they are introduced as an integral part of routine service provision; where existing relationships with service providers are not disrupted and can be maintained alongside use of equipment.

All the above points indicate potential avenues for future research. For example, there is a need for further research to investigate who specific interventions work for and in what circumstances. Additionally, there is a need for further research and development to ensure designs of telehealth and telecare fit with the needs and preferences of service users. This in turn would be likely to improve adoption of interventions because patients and carers would be more likely to want to use them. An additional aspect that warrants further research is the degree to which TH and TC interventions impact on the quality of care experienced by patients and carers.

This study raises important issues with policy implications in an era where there is an increasing emphasis on implementing telehealth and telcare interventions for supporting self-care for those with long-term conditions and with social care needs [44]. Of particular interest is the finding that such interventions are often considered as a potential major threat to identity and existing management routines and service use for respondents. It was also apparent that even where respondents were somewhat ambivalent in contemplating installation of equipment, their feelings of uncertainty were not mitigated when the prospect of installation for the trial was discussed at the home visits. This indicates that more detailed information and time for discussion could be valuable when introducing these interventions for the first time. Given the assumptions about appropriate candidacy for telehealth and telecare evident amongst respondents here, and concerns about technology and service changes, it seems important for potential recipients to have the opportunity to discuss their expectations and additional common concerns about technological aspects of equipment and service changes prior to installation. Additionally, these findings suggest the need for closer proximity between innovation design and evaluation, so that critical insights might usefully feed back into design and implementation [11, 13] ensuring interventions are ‘minimally disruptive’ for recipients [42].

ⁱ In some cases this was a member of health or social care staff and in other cases they were assistants who were specifically employed and trained to conduct the home assessment. ⁱⁱ One of these 3 withdrew only a couple of weeks after the equipment was installed. The remaining 2 withdrew after several months in the trial. ⁱⁱⁱ This respondent did not want a recording to be made and in this case notes were made at and following the interview.

AR, CS, PB and SN conceived and designed the study. RB and CS conducted the interviews and coded them with AR. SH and MC and SN collected and analysed quantitative data drawn upon in the study. All authors contributed to interpretation and prioritisation of findings. CS drafted the paper with AR and RB. All authors contributed to writing the paper. AR is the guarantor. The Whole System Demonstrator Evaluation Team (WSDET) contributed to periodic discussions of the data collected for this study during team meetings, and commented on interim documents produced during the study period. Members of WSDET additional to specified authors include: MB, LR, LS, JB, J-LF, CH, JD, JB, A S, HD, VMN. All authors read and approved the final manuscript.