Health Psychology 2016, Vol. 35, No. 1, 60 – 68

© 2015 American Psychological Association 0278-6133/16/$12.00 http://dx.doi.org/10.1037/hea0000246

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“It’s Sort of a Lifeline”: Chronic Obstructive Pulmonary Disease Patients’ Experiences of Home Telehealth Sarah L. Gorst and Elizabeth Coates

Christopher J. Armitage

University of Sheffield

University of Manchester

Objective: Home telehealth can provide considerable benefits to people diagnosed with chronic obstructive pulmonary disease, yet 20% of patients abandon telehealth. Identifying the factors that affect whether or not a patient decides to continue using telehealth is therefore crucial to the goal of mainstreaming telehealth. However, studies to date have only assessed the perceptions of patients who are not currently using telehealth, have used telehealth in experimental sessions, or are enrolled in a trial. The aim of the present study was to explore the beliefs and perceptions of patients with chronic obstructive pulmonary disease currently using home telehealth and who are not enrolled in a trial. Method: Semistructured interviews were conducted with 8 patients with chronic obstructive pulmonary disease. Interviews were analyzed using interpretative phenomenological analysis. Results: Four superordinate themes are presented: (a) perceiving benefits of “being watched over” as providing peace of mind, (b) learning about the health condition and the impacts on selfmanagement behavior, (c) active engagement in health service provision and better access to health care, and (d) valuing the importance of in-person care. Conclusions: Users generally describe home telehealth in positive terms; however, patients still value face-to-face contact with health care professionals. The positive aspects of home telehealth, such as better access to health care and providing peace of mind, could be communicated to prospective users to improve uptake. Similarly, sustained use of telehealth is likely to be ensured if occasional visits from health care professionals are maintained. Keywords: telehealth, chronic obstructive pulmonary disease, interpretative phenomenological analysis, perceptions Supplemental materials: http://dx.doi.org/10.1037/hea0000246.supp

individuals with COPD make up 1.6% of the population and cost the National Health Service more than £800 million per annum (National Institute for Health and Care Excellence, 2011), with direct medical costs alone amounting to £625 million a year. The prevalence of COPD is expected to rise because of the aging population (Association of Public Health Observatories, 2008), with likely serious social and financial consequences. Home telehealth, the remote transfer and exchange of health information from a patient at home to health professionals at another location through electronic devices, can provide significant benefits for COPD patients, including reduced emergency department visits, mortality rates, and health care costs (McLean et al., 2011). However, despite these positive effects, the decision to offer telehealth is currently based on an informal scrutiny of demographic and clinical variables by clinical staff in community and primary care settings, and the way in which clinical staff help patients decide whether to use telehealth is not standardized (Taylor et al., 2015). Even when telehealth is offered, 32% of patients refuse it and 20% of patients who accept telehealth later abandon it (Gorst, Armitage, Brownsell, & Hawley, 2014). Identifying the factors that affect whether or not a patient decides to take up and continue using telehealth is therefore crucial to the goal of mainstreaming telehealth.

Chronic obstructive pulmonary disease (COPD) is a global epidemic that places considerable burden on patients and health care systems through high rates of hospitalizations, readmissions, and outpatient visits (Barnes, 2007). COPD is a major public health issue, with prevalence over 65 million worldwide and rising (World Health Organization, 2008). In 2010, the total annual direct cost of COPD to the United States was estimated to be $32.1 billion (Ford et al., 2015). In the United Kingdom,

This article was published Online First July 6, 2015. Sarah L. Gorst, Department of Psychology, University of Sheffield; Elizabeth Coates, School of Health and Related Research, University of Sheffield; Christopher J. Armitage, Manchester Centre for Health Psychology, School of Psychological Sciences, Manchester Academic Health Science Centre, University of Manchester. This research was funded by a grant from the Assisted Living Innovation Platform, with support from the Technology Strategy Board and the Economic and Social Research Council (references 2400-25148 and TS/J00 0019/1). Correspondence concerning this article should be addressed to Christopher J. Armitage, Manchester Centre for Health Psychology, School of Psychological Sciences, Manchester Academic Health Science Centre, University of Manchester, Coupland Street, Oxford Road, Manchester M13 9PL, England. E-mail: [email protected] 60

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PATIENTS’ EXPERIENCES OF HOME TELEHEALTH

Patient involvement in telehealth research is currently lacking, with most studies only exploring patient-focused outcomes as a secondary concern (e.g., Gorst et al., 2014). However, the available evidence suggests that telehealth leads to improved selfmanagement by COPD patients by empowering them to manage their health condition better, increasing their access to health care, and giving them a better understanding and awareness of their condition (Gorst et al., 2014). Conversely, technical problems and patient preference for traditional in-person care represent significant barriers to using telehealth (Gorst et al., 2014; Greenhalgh et al., 2013; Procter et al., 2014; Sanders et al., 2012). Although these potential facilitators and barriers to the use of home telehealth have been identified, many studies that assess patient perceptions suffer limitations with respect both to sampling and data analysis. To date, published research assessing patient perceptions of telehealth has recruited patients who had (a) no direct experience of telehealth (Rahimpour, Lovell, Celler, & McCormick, 2008), (b) only used the telehealth equipment for the purpose of a research experiment (Whitten & Mickus, 2007), or (c) been selected from participants already in a telehealth trial (Fairbrother et al., 2013). These sampling limitations are important because the perceptions of people currently using telehealth are more pertinent to the issue of mainstreaming telehealth than the perceptions of people who have used telehealth only experimentally. It is also difficult to distinguish patients’ views about participating in a trial from their views about telehealth per se. A second limitation concerns data analysis: Previous studies assessing patient perceptions of telehealth have typically used content, framework, or thematic analysis (Fairbrother et al., 2014; Gale & Sultan, 2013; Radhakrishnan, Jacelon, & Roche, 2012; Ure et al., 2011). This is potentially problematic because content, framework, and thematic analyses can miss important details about patients’ experiences, understandings, perceptions, and views of telehealth (Smith & Osborn, 2008). The present study addressed this issue by conducting an interpretative phenomenological analysis (IPA) of the data; in comparison with other analytic approaches, IPA allows “more room for creativity and freedom” (Willig, 2008, p. 73). To date, very little published research has focused exclusively on understanding COPD patients’ perceptions of telehealth. The present study therefore explored COPD patients’ beliefs and perceptions regarding home telehealth among current users of telehealth who are not enrolled in a trial, using IPA to analyze the data.

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specialist respiratory nurse introduced the study and sought the patients’ permission to be contacted by researchers. A further 140 potential participants were approached through the use of a recruitment letter and accompanying information sheet, which was mailed out by the health care providers on behalf of the research study to all eligible patients. When patients opted in, they were phoned by one of the research team who explained the purposes of the research, confirmed the patients’ continued interest, answered any questions, and arranged a convenient time to conduct the interview in their home. At the interview, the researcher further described the research and provided participants with an information sheet and the opportunity to ask questions. Twenty-seven patients who agreed to participate in the research were asked to provide written consent, alongside permission to record the event prior to the interview commencing. Eight of these 27 patients were diagnosed solely with COPD.

Participants Eight COPD patients using telehealth participated in the research (see Table 1). Participants’ names have been replaced with pseudonyms to conceal patient identities. The participants included five women and three men, with ages ranging from 58 to 84 years, with a mean age of 68 years. This age range is representative of the wider population of COPD patients (Devereux, 2006). Five patients lived with their spouse and three patients lived alone. On average, patients had been diagnosed with having COPD for 9 years, with length of time since diagnosis ranging from 4 to 18 years. Patients had been using telehealth from 6 months up to 3 years, with a mean of 17 months use (see Table 2; median ⫽ 12 months). Six patients were using small-sized telehealth equipment, which allowed them to attach peripheral devices to take readings of their vital signs, with the individual readings displayed on the equipment. Two patients were using larger sized telehealth equipment, which provided the same information as the small equipment but additionally allowed patients to view their data in graphs and charts. The size of the telehealth equipment depended on which equipment the patients’ local health care provider had purchased. Two of the providers had purchased small telehealth devices, and one provider had purchased large telehealth devices. The choice of equipment was based on ad hoc purchasing decisions made by the participating sites. The participating sites were recruited as part of

Method Recruitment The data presented in the current study were collected as part of a larger study that recruited patients with COPD and/or chronic heart failure. The present analyses focus solely on patients with COPD. A total of 175 potential participants at three health care regions in the north of England were invited to participate in the research. Potential participants were patients in the relevant health care regions who had COPD and/or chronic heart failure and were currently using telehealth to manage their health condition. In the initial stages of recruitment, 35 potential participants were approached by their primary/specialist health care provider. During the course of providing medical care, the community matron or

Table 1 Demographic Data for Patients Who Participated in the Study

Pseudonym

Age (years)

Samuel Marvin Louise Lenny Cathy Collette Gail Gertrude

84 67 58 76 62 66 71 61

Note.

Gender

Length of time with COPD (years)

Living arrangement

Male Male Female Male Female Female Female Female

Several 18 14 8 7 4 Unknown 4

Alone With spouse With spouse With spouse Alone With spouse With spouse Alone

COPD ⫽ chronic obstructive pulmonary disease.

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Table 2 Telehealth Monitoring Information for Patients Who Participated in the Study Pseudonym

Time with telehealth (months)

Equipment used

Frequency of monitoring

Readings taken

Samuel

Cannot recall

Small

Every weekday morning

Marvin

24

Small

Every weekday morning

Louise

12

Small

Every weekday morning

Lenny

24

Small

Every weekday morning

Cathy

9

Small

Every weekday morning

Collette

6

Large

Every morning

36

Large

Every morning

9

Small

Every morning

Blood pressure, oxygen level, pulse, temperature Blood pressure, oxygen level, pulse, temperature Blood pressure, oxygen level, pulse, temperature Blood pressure, oxygen level, pulse, temperature Blood pressure, oxygen level, pulse, temperature Blood pressure, oxygen level, pulse, temperature, weight Blood pressure, oxygen level, pulse, temperature, weight Blood pressure, oxygen level, pulse, temperature

Gail Gertrude

a larger research study exploring the barriers and enablers to telehealth use and implementation. The size of the equipment made no discernible difference to patients’ experiences. Five patients used the equipment every weekday morning and three patients used it every morning, with monitoring occurring for all patients shortly after readings had transferred. All patients used the telehealth equipment to monitor the following vital signs: blood pressure, oxygen level, pulse rate, and temperature. In addition, the two patients who were using the larger telehealth device also used the equipment to record their weight.

Procedure After obtaining consent from a participant, a face-to-face interview was conducted by one of the researchers (SLG) at the patient’s home. A semistructured interview template was developed before data collection and was designed to explore the barriers and facilitators of telehealth use identified in Gorst and colleagues’ (2014) systematic review. During the interviews, additional questions sought clarification and/or elaboration of responses. The interview included general demographic questions; broader questions regarding the patient’s thoughts and feelings about telehealth, questions about health condition and health care prior to using telehealth, experiences of using telehealth, and the advantages and disadvantages of telehealth use. The interview guide began with open-ended questions and then narrowed down to asking closed-ended questions; however, if patients failed to elaborate when answering the closed-ended questions, they were asked to explain their answer in more detail. The mean interview length was 45 min. All interviews were audiotaped and transcribed verbatim. The researcher reviewed the transcripts while listening to the audiotapes to ensure accuracy of the transcripts.

Frequency of monitoring follow-up

Health professional who interacts with patient

Shortly after readings had transferred

Community matron

Shortly after readings had transferred

Community matron

Shortly after readings had transferred

Community matron

Shortly after readings had transferred

Respiratory nurse

Shortly after readings had transferred

Respiratory nurse

Shortly after readings had transferred

Community matron

Shortly after readings had transferred

Community matron

Shortly after readings had transferred

Respiratory nurse

Analysis All interviews were analyzed using IPA (Smith, Flowers, & Larkin, 2009). Unlike other qualitative methods, IPA is a means of analyzing qualitative data with an idiographic focus, thereby offering insights into how a given person, in a given context, makes sense of a given phenomenon or experience (Smith et al., 2009). IPA involves a double hermeneutic, two-stage interpretation process, in which “the participants are trying to make sense of their world; the researcher is trying to make sense of the participants trying to make sense of their world” (Smith & Osborn, 2008, p. 53). IPA is particularly relevant to research in health care, as it intends to give a complete and in-depth account that privileges the participant, thus enabling researchers to achieve a greater understanding of patients’ experiences of illness and health care, with the potential to result in improvements to service provision (Pringle, Drummond, McLafferty, & Hendry, 2011). The analysis involved six steps. The first step involved reading and rereading each interview transcript to become immersed in the data and to ensure that the participant became the focus of analysis. The second step consisted of examining semantic content and language use to produce a comprehensive and detailed set of notes and comments on each transcript. The third step involved analyzing these exploratory comments to identify emergent themes. The fourth step focused on searching for connections across emergent themes by clustering them according to conceptual similarities. Each cluster became a superordinate theme and was given a descriptive name that conveyed the theoretical description of the emergent themes within the cluster. Next, a graphic representation of the structure of emergent themes was developed using a table to look at the development of the superordinate themes that had emerged from the analysis. The fifth step consisted of moving onto

PATIENTS’ EXPERIENCES OF HOME TELEHEALTH

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the next transcript and repeating Steps 1 to 4. This then continued for each subsequent transcript. The sixth step involved looking for patterns across cases. The tables of themes of all transcripts were compared and a master table of themes was created. Authors SLG and CJA debated an initial model until agreement was reached on all themes. Both authors have a background in psychological research and both have received training in qualitative methods. The primary coder was also the interviewer. The reliability and validity of the analysis were assessed using Yardley’s (2000) four principles: sensitivity to context, commitment and rigor, transparency and coherence, and impact and importance.

Results Four superordinate themes were identified in the analysis: (a) perceiving benefits of “being watched over” as providing peace of mind, (b) learning about the health condition and the impacts on self-management behavior, (c) active engagement in health service provision and better access to health care, and (d) valuing the importance of in-person care. A measure of prevalence of the themes is provided in a table in the online Supplemental Materials, which describes the superordinate themes that arose from the patient interviews. The table provides quotes from each of the participants in relation to each of the themes.

Perceiving Benefits of Being Watched Over as Providing Peace of Mind All of the participants believe that telehealth had given them peace of mind regarding their health. Some patients perceive their peace of mind to be a result of the fact that they are able to check their readings themselves and so they know immediately whether or not there is a problem. Other patients feel that the reason for their peace of mind is attributable to the fact that health professionals are able to access their readings and so they know that they are being watched over. However, this is not perceived as being an intrusive surveillance, but rather benevolent caring, as the patients know that if there is a problem, then his or her health professional will be notified. Gertrude feels that telehealth enables her to feel safe: Like I say it’s reassuring, it’s like having another person with you even though it’s a machine. I think that’s the thing about it. It’s because I live on my own, isn’t it? I know my son is only a phone call away but I feel more reassured now that’s in.

Gertrude appreciates having the telehealth equipment in her home because she lives alone and does not have anybody around her on a daily basis to recognize signs that her health may be deteriorating. Because Gertrude is using the telehealth equipment to monitor her health, she feels as though there is another person watching over her. Gertrude emphasizes that although the telehealth equipment is merely a machine, it provides a degree of security because she knows that health professionals are regularly checking her readings, meaning that if there is a problem, it will be picked up immediately. Cathy also finds it reassuring that she is able to detect from her readings whether or not there is a problem: I just find it reassuring that I can check manually what my oxygen levels are, because I’m aware of the fact that I get anxious about

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things and everything goes to pot, so it’s reassuring. I think that’s the biggest positive. . . . I know my children like the fact that I’ve got it. They are very much aware of the fact that I do not look after myself and so it reduces the worry for them.

Cathy lives alone; therefore, she finds that using telehealth is reassuring both for herself and her family. Cathy has had COPD for 7 years and a significant proportion of that time has been spent in hospital. Cathy was offered the opportunity to use telehealth following a hospital admission because her doctor said that using the equipment would involve health professionals being alerted to any problems, which would result in action being taken to avoid any further hospital admissions. When Cathy initially agreed to use telehealth, she viewed it as an alarm to alert health professionals. However, over the 9 months that she has been using telehealth, she has come to view it more as a source of reassurance for herself because she is able to determine what state her health is by looking at her readings on the telehealth equipment. In addition to telehealth reducing her own worry, she feels that it also reduces the worry for her children because they know that health professionals are watching over her and will be alerted when there is a problem. Similarly, Collette also spoke about how telehealth has provided peace of mind for her husband: It [telehealth] makes Bill [husband] feel better too, because when he sees it, he says that’s fine, that’s fine, so I think it takes a load off Bill’s mind as well, which is good. He does worry a lot, so he’s as relieved as me when he sees the reading . . . because the way I was like in a coma and then he’s hurting himself thinking, “Oh I should’ve known and I should’ve had her in hospital,” you know, but it’s given him peace of mind completely too. Mentally I’ve improved with it and Bill has, because it’s taking the onus off him. . . . It’s made us both have a life really without worrying, especially Bill.

Before Collette began using telehealth, her husband was responsible for looking after her. However, during one occasion when Bill had assumed that his wife was asleep, she had actually fallen into a coma; Bill blamed himself for not noticing that there was a problem. Once Collette began using telehealth, she noticed the huge impact it has had on Bill, even though she had only been using it for 6 months. Bill knows that health professionals are watching over Collette and that they will be alerted when there is a problem. Thus, Bill is less worried because he feels that he is no longer solely responsible for looking after his wife. Patients deem peace of mind to be one of the greatest benefits of using telehealth, as they are able to see how their body is functioning on a regular basis, which reduces worry and uncertainty. Telehealth has given patients more confidence and enables them to feel safer, especially those who live alone because they know that somebody is regularly reviewing their readings and will get in touch if there is a problem. Telehealth is also perceived to reduce worry for patients’ family members because they know that any health problems will be detected sooner. Thus, the onus of looking after the patient no longer falls solely to family members.

Learning About the Health Condition and the Impacts on Self-Management Behavior During the interviews, all participants were asked whether they believed that using telehealth had resulted in improvements to their management of their health condition. The majority of participants

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GORST, COATES, AND ARMITAGE

did express improvements in self-management, due to learning about their health condition through information gathered from telehealth readings and then using that information to feel empowered to self-manage. Lenny mentioned how telehealth has made him more mindful of his health:

the telehealth equipment was removed from his home. Thus, using telehealth has led Marvin to value the importance of managing his own health, and he wants to continue to do this on a permanent basis. In contrast, some patients do not think that their selfmanaging behavior had improved as a result of using telehealth. For example, Cathy said,

I think you’re much more aware, much more aware of things and you can keep your eye on all the readings and if something gets high or low I’d be aware and mention it. . . . It does give a lot of information out obviously, but it’s made me more aware of how important the oxygen in the blood levels need to be and things like that.

I do not think it [telehealth] improves it [self-management]. I mean, I certainly feel more responsible for my own health than I did, but that’s purely because I did very belatedly acknowledge the fact that I need to recognize when I am ill quicker than I do, but that was myself, not telehealth. I think it has been helpful in that whole process, but I do not think you could say that improves your self-care.

Lenny has had COPD for 8 years, but he has only realized the importance of his vital signs since he began using telehealth 2 years ago. Using telehealth enables Lenny to see the results of his health monitoring for himself and provides him information about his health. This information helps Lenny to learn about aspects of his health condition, which he may never have considered to be important before using telehealth. Thus, Lenny now knows that he has to be cognizant of certain readings because of the impact they can have on his health. Gail appreciates the fact that telehealth provides her with a record of all the readings of her vital signs: At the minute I’m nauseous, because I’m on a different medication and I can tell by looking at my readings that they’re all down, so when you look back . . . my matron when she comes she’ll say, “When did you start?” all I’ve got to do is look at my machine and I can tell her the exact day when I started to feel off, so it’s pretty good that way . . . you can check back, you know, over a month or a couple of months or whatever, you can check them all and compare.

Using the telehealth equipment allows Gail to view all of her readings in graph and chart formats, which consequently allows her to compare her current readings with ones that she has taken earlier in the month. By comparing her readings, Gail is able to see how her health is progressing and she can easily recognize the point at which her health begins to deteriorate. Having access to this information also enables Gail to provide her community matron with more accurate information, which consequently ensures that the most appropriate action is taken. Similarly, Marvin embraces the fact that he is able to self-monitor his health: It’s definitely helped with health management, yeah. I want to know all about my health now. I didn’t do nothing before [telehealth] at all . . . when they said it was for a year, I started looking at where you could get them from and say the finger monitors. . . . I do not suppose they’d be as accurate as those, but if it gives you a reading I would definitely buy them. I was certainly going to do that, so that I could still self-monitor.

Marvin appreciates the fact that using telehealth allows him to monitor his health. Before he was using telehealth, Marvin believed that his community matron was responsible for looking after him and so he did nothing to manage his own health condition. When Marvin was offered the opportunity to use telehealth 2 years ago, he was told that he would most likely only be using the equipment for 1 year for him to learn “to be more self-sufficient” in managing his health condition. However, once he began using telehealth, Marvin realized the extent to which it enabled him to manage his health better and he began to look into purchasing his own monitoring equipment, which he would be able to use after

Cathy is aware that she is now managing her health condition better than she previously did, but she does not believe that this improvement is a result of the fact that she had recently started using telehealth. Instead, Cathy believes that her improved selfmanagement is attributable to her accepting the fact that she needed to become more aware of her symptoms to avoid subsequent hospital admissions. Thus, although Cathy believes that telehealth has assisted her in better managing her health, she believes she should be credited with the improvements, rather than crediting the telehealth equipment. The majority of patients reported improvements in the selfmanagement of their health condition as a result of learning about their health through the provision of information about symptoms. This consequently has a positive impact on patients’ selfmanagement behavior, as it encourages them to play a more active role in their health management. Thus, for some patients, having access to this information appears to have helped to empower them and also encourage them to self-manage. However, not all patients believe their improved self-management is attributable to their telehealth use and instead believe their decision to alter their attitude toward their health is the reason for their enhancements in self-management.

Active Engagement in Health Service Provision and Better Access to Health Care All patients acknowledged that telehealth has facilitated increased access to health care services, as they feel that telehealth has increased the contact they have with health professionals. Louise explained, If I need anybody I’ll tell them on here, so to a certain extent it’s, it’s worked out better really, hasn’t it? And there’s one of the questions anyway, Do you need your health care professional to contact you? which I’ve got to admit they’re straight on to it, if I press yeah. You’re not overlooked.

Louise has had COPD for 14 years and for the first 13 years of the condition her health care involved regular visits from her community matron. When she began using telehealth, Louise assumed that she might have been “overlooked” because her health would be monitored via a machine, rather than by her community matron visiting her home to manually take her readings. However, Louise emphasized how telehealth has enhanced her engagement in health care over the past year, as she is always able to speak to a health professional if she needs to do so. For Collette, telehealth

PATIENTS’ EXPERIENCES OF HOME TELEHEALTH

provides a means of care that enables health professionals to monitor her health condition:

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The matron thought it would be good for me and I did feel better knowing that there was somebody on the other side that was very important that they would know what was going on, because I wouldn’t know about it. Because Martha [matron] will come and say I had a bleep, they know and they contacted her straight away, so it’s good. . . . It’s sort of a lifeline; you know that it’s going somewhere else. . . . Knowing somebody is at the end of the line, that’s important. . . . I think I would have been in hospital without it [telehealth] because it’s gone so bad.

Collette has been using telehealth for only 6 months, but she already feels that her access to health care has increased dramatically, as she knows her community matron will be informed if there are any problems. Thus, telehealth delivers a positive experience of surveillance for Collette, as she sees value in being watched over by health professionals. This is very important to Collette because, as she mentioned earlier in the interview, before she began using telehealth, her health would deteriorate quite rapidly: “It just strikes me like that and I was like passing out and going into a bit of a coma.” However, now she knows that her readings are being looked over by health professionals and that they are immediately aware of any problems. Over the past 6 months, Collette has viewed telehealth as being a “sort of a lifeline,” as she believes that it has prevented her from having any hospital admissions. If she had not begun using telehealth, Collette assumes that she would inevitably have been admitted to hospital because her health condition can deteriorate so rapidly. Similarly, Marvin also believes that telehealth has led to a reduction in his use of health care services: For me this is ideal, because by the time you do actually contact the doctor, who’s then saying can you get to the surgery, and sometimes you couldn’t, it’s hospital again, whereas now, we nip it in the bud. . . . One simple thing that I’d never thought of, when I used to get a chest infection I used to have to go to the doctors, get some tablets, if it’s a Friday means you cannot go, so I’ve got tablets now, before I go. . . . I never liked going to the doctors. I always think when I’m going to the doctors I’m not ill. I’ve always got this impression that he’s just going to sit there looking at me and say you’re not ill. . . . I think it [telehealth] works for us. I cannot remember the last time I went to the doctors.

Marvin has had COPD for 18 years and has had a lot of chest infections for which he needed antibiotics. Before Marvin was using telehealth, he would have to make an appointment with his doctor to receive medication; however, since he has been using telehealth, he is now able to keep antibiotics in his home on standby. Marvin is now told to take his antibiotics as soon as the readings of his vital signs indicate that he may be coming down with an infection. Having instant access to antibiotics enables Marvin to treat his chest infections immediately and ensure that hospital admissions are avoided. Furthermore, Marvin also mentioned that he never really liked going to the doctors because he did not believe he was ill enough to warrant treatment; this would often result in health problems being ignored until they deteriorated significantly. Telehealth has enhanced Marvin’s access to health care, as he is now able to take readings of his vital signs

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every weekday morning and he can readily ascertain whether there is a problem. All patients reported how their access to health care has improved as a result of using telehealth because they now feel better equipped to engage with health care services. The patients are now benefiting from active engagement with health professionals, and they are able to report any problems or ask for advice whenever they feel they need to. The fact that health professionals are able to review the data collected via telehealth enables patients to be aware of any early warnings of health status deterioration, thus facilitating a prompt response to any health problems. Using telehealth enables both patients and health professionals to be aware of any problems more quickly, and has consequently led patients to experience reductions in both visits from health professionals and their own hospital admissions. This is because patients are able to take action as soon as there is problem to prevent their health from deteriorating.

Valuing the Importance of In-Person Care Although the patients identified several benefits of telehealth use, many also articulated the importance of in-person care and how they value face-to-face contact with their respiratory nurse or community matron. For example, Samuel said, The only thing I miss with it [telehealth] is that I do not get the nurses coming to visit like I used to [laughs], human contact, but that’s the only thing. What shall I say, . . . the nurse side of it is not necessary, there’s no point in having a nurse when they’re only going to do exactly what you do yourself. I know it’s nice to have someone else to speak to occasionally, but . . . it’s no effect on my health at all. It’s just nice to have someone to speak to.

Samuel is very happy to be using telehealth as he is aware of all the benefits it provides. However, the one drawback of using telehealth is that he does miss the face-to-face visits he used to have from his community matron. Samuel is 84 years old and lives alone, so he has minimal contact with other people, meaning that the visits he used to have from his community matron enabled him to engage in conversation with another human being. Samuel did articulate, however, that it would be unnecessary for a nurse to visit his home because he is able to take all of his readings himself using the telehealth equipment. However, Samuel does miss having the opportunity to speak to somebody. Gail, on the other hand, believes that in-person care does provide benefits that cannot be obtained solely from using telehealth: If anything comes up [on telehealth] that I do not understand, I ask when Sandra [community matron] comes. I like to know everything from thread to the needle, every single thing. No [telehealth is not as good as in-person care], it’s a bit personal, I think. With face to face you can see how people react when you tell them things [laughs]. You’ve only got to look at somebody’s eyes to see.

Gail still receives occasional visits from her community matron, which she values a lot because they allow her to discuss the readings of her vital signs. Thus, she is able to clarify anything that she does not fully understand. Gail enjoys learning about her health condition via telehealth and she has been successfully using it to manage her COPD for the past 3 years. Despite this, Gail does not think it can provide the same

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benefits as in-person care because of the impersonal nature of it. Thus, when Gail is using telehealth, she is able to recognize when her readings have fallen outside of their parameters and she is aware that there is a problem. However, because Gail’s readings are displayed via an electronic machine, she may not always be aware of the extent of the problem, and she prefers to observe a health professional physically reacting to the readings. In contrast, not all patients expressed a preference for in-person care. For example, Louise said, Well it’s [telehealth] better really. . . . I suppose because it’s there and it’s every day, whereas when Sally [community matron] used to come before it was not as often . . . but it’s better now cause it’s done every day. That does everything what Sally does.

Louise believes that using telehealth is better than the occasional visits she used to receive from her community matron because she is now able to take her readings daily and she knows that health professionals will be able monitor her readings every weekday morning. Before she began using telehealth, Louise saw her nurse “every 3 or 4 weeks”; thus, any health problems would generally have been picked up only during these visits. This meant that on many occasions Louise’s health would have deteriorated before it had come to the attention of her community matron, resulting in frequent hospital admissions. Louise believes that telehealth is able to do everything that her community matron used to do, but on a more regular basis, and so she views it as a superior form of health care. Almost all patients commented on the importance of face-toface care from health professionals because they enjoy the personal nature of it and value the fact that it provides them with human contact. However, despite the majority of patients valuing the importance of in-person care and reporting the advantages it can provide, some patients believe that telehealth is a superior form of care because it is more efficient and frequent than traditional health care. Nevertheless, despite patients’ perspectives on in-person care, they all continue to use telehealth because of the perceived benefits of peace of mind, increased access to health care, and enhanced self-management.

Discussion The present study addressed the limitations of previous studies by using an IPA approach to explore COPD patients’ beliefs and perceptions regarding home telehealth. In contrast with previous research, participants in the present study were all current users of telehealth and were not participating in a trial, meaning that the present analyses benefited from the pertinence of patients’ beliefs and perceptions of telehealth. Furthermore, using IPA as opposed to content or thematic analysis allowed for a more detailed and thorough exploration of patients’ experiences of telehealth. During the analysis, four superordinate themes emerged: (1) perceiving benefits of being watched over as providing peace of mind, (2) learning about the health condition and the impacts on selfmanagement behavior, (3) actively engaging in health service provision and having better access to health care, and (4) valuing the importance of in-person care. Each of these themes are discussed in detail below.

Perceiving Benefits of Being Watched Over as Providing Peace of Mind All of the participants deemed peace of mind to be a great benefit of using telehealth because it reduces worry and enables them to feel much safer. This finding supports previous research, which also has found that patients feel reassurance in having someone watch over them (Fairbrother et al., 2013; Gale & Sultan, 2013). Similarly, consistent with previous research, we also found that telehealth provided reassurance for the family members of patients who live alone (Johnston, Kidd, Wengstrom, & Kearney, 2012; Radhakrishnan et al., 2012). However, we additionally found that telehealth provided peace of mind for family members who live with the patient, as they feel more relaxed knowing that they are no longer solely responsible for looking after the patient. It is evident that patients greatly appreciate the peace of mind that telehealth provides them and their families; communicating this to patients who are unsure about whether to adopt telehealth might be useful in promoting uptake.

Learning About the Health Condition and the Impacts on Self-Management Behavior Consistent with previous research, patients in the present study reported how telehealth has led to improvements in the selfmanagement of their health condition as a result of learning about their health through the provision of more accurate and frequent information about symptoms (e.g., Fairbrother et al., 2013; Gale & Sultan, 2013; Ure et al., 2011). Conversely, two patients in the present study verbalized that telehealth had not directly improved their health management. However, both of these patients acknowledged that having the telehealth equipment in their homes had assisted them in the self-management process because it provided them with the necessary resources they needed to monitor their health. It might therefore be useful for health professionals to emphasize the use of telehealth as a tool for self-monitoring to patients considering using telehealth. Indeed, Sanders et al. (2012) reported that patients who had declined telehealth did so because they believed it would undermine self-care. Thus, highlighting the potential for improvements in self-management to patients considering using telehealth might increase uptake. This pattern of findings is consistent with both theory (e.g., Carver & Scheier, 1982) and evidence (e.g., Michie, Abraham, Whittington, McAteer, & Gupta, 2009) showing that people who are actively involved in the self-monitoring of their health condition experience improvements in self-management.

Active Engagement in Health Service Provision and Better Access to Health Care Patients also acknowledged how using telehealth has enabled them to become more connected with and integrated into the health care system. Similarly, in the study by Ure et al. (2011), patients valued the fact that telehealth provided a single responsive point of access to professional support and advice and ensured that any issues were dealt with quickly. Gale and Sultan (2013) reported that patients were able to benefit from more responsive and appropriate contact as a result of using telehealth because it ensured that the nurses telephoned or made visits when they were really

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PATIENTS’ EXPERIENCES OF HOME TELEHEALTH

needed. Consistent with previous research, we highlight the increased contact that patients have with health professionals as a result of telehealth use. In addition, the present study extends this research by detailing how telehealth had delivered a positive experience of surveillance for patients at the same time as reducing patients’ perceived use of health care services. The findings of the present study suggest that, consistent with research in other domains (e.g., Kroneman, Maarse, & van der Zee, 2006), access to health care services is a key driver of patients’ satisfaction with telehealth. Together, the implication is that it might be beneficial for health professionals to ensure that patients know prior to uptake that using telehealth would not involve their having to manage their health condition alone, nor would it diminish the contact patients have with their health care provider. Patients should instead be informed that using telehealth would lead to them feeling better equipped to engage with health services through the direct access they would have via daily monitoring. However, some patients will have a preference for their health care to be delivered in person, as a result of the social support provided by nurses (Sharma & Clarke, 2014).

Valuing the Importance of In-Person Care Despite all patients believing that telehealth had increased their access to health care, many patients spoke about how they valued face-to-face visits from their community matron or respiratory nurse. Face-to-face visits enabled patients to engage in conversation and discuss any concerns they had about their health. This is similar to previous research, which found that patients reported a loss of contact with health professionals as being one of the primary disadvantages of telehealth usage (Bentley et al., 2014; Rahimpour et al., 2008; Whitten & Mickus, 2007). Our findings partially support those of Bentley et al. (2014), who also found that COPD patients valued clinician-delivered face-to-face care. However, in contrast to the present study, Bentley and colleagues found that patients explicitly expressed a preference for personalized in-person care as opposed to a daily telehealth-supported service. The present study found that although the majority of patients did value the importance of in-person care, none of the patients stated that they would prefer to receive in-person care, as opposed to using telehealth. However, it is worth noting that patients in the Bentley et al. study were participating in a short (8-week) pilot trial, meaning that they may not have had sufficient time to experience all of the potential benefits of telehealth. Consequently, the findings from the present study suggest that although many patients do appreciate face-to-face visits from health care professionals, they also enjoy using the telehealth equipment because of the additional benefits they gain from using it. Similarly, Rahimpour et al. (2008) found that although patients were concerned about the lack of physical presence of a health care provider, most patients stated that they would prefer to take readings of their vital signs themselves and have face-to-face contact with a health care professional only when they required something that could not be provided by the telehealth equipment. Thus, it is clear that most patients value the importance of traditional inperson care because they enjoy the face-to-face communication they have with health professionals. However, patients generally believe that the benefits of telehealth far outweigh the drawbacks; although patients have fewer face-to-face visits, they value the fact

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that telehealth allows them to become more involved in their health condition. Thus, patients appreciate the benefits that both telehealth and in-person care provide and do not appear to prefer one form of health care over the other. In sum, it is clear that patients want to continue using telehealth, but they also appreciate having occasional face-to-face contact with health care professionals.

Strengths and Limitations To our knowledge, this is the first study to investigate patient experiences of home telehealth as a primary research goal among COPD patients who were not enrolled in a telehealth trial. Through the use of IPA, we were able to give voice to COPD patients’ subjective accounts and personal experiences of telehealth. Although the present research takes the literature on home telehealth use forward in some important respects, it is important to acknowledge a number of potential limitations. First, we recruited patients from only three different health care regions, all of which were based in the north of England; therefore, we were unable to determine whether the patients who participated in the current study are representative of COPD telehealth users. However, we draw confidence from the fact that the themes observed in the present research resonate with themes found in previous studies (e.g., Gorst et al., 2014). Second, we were unable to recruit any patients who had abandoned telehealth because these data are not routinely collected. It would be valuable if all National Health Service sites retained records as to who and why telehealth is offered, refused, or abandoned, to allow researchers further insight into uptake and sustained use of telehealth. Third, it is worthwhile noting that of 175 potential participants, only 27 patients agreed to participate in the research, eight of whom had COPD only. We believe that this high refusal rate could be attributed to patients not feeling well enough to be able to be interviewed about their use of telehealth.

Conclusion It is clear that the COPD patients who were interviewed in the present study were positive about home telehealth and were able to describe several facilitators of telehealth use, relating to peace of mind, improved self-management behavior, and better access to health care. Thus, communicating these positive aspects of home telehealth to patients who are unsure about whether to adopt telehealth might be useful in promoting uptake. Patients also reported that they valued face-to-face contact with health care professionals; however, this appreciation of in-person care did not deter them from using telehealth because of all the additional benefits it provided. Thus, it may be beneficial for patients who are using telehealth to continue receiving occasional visits from health care professionals to promote sustained use. This would ensure that patients are able to discuss any concerns they have about their health and also provide them with human contact that they may not otherwise experience. The themes that emerged in the present study support the findings of Gorst et al. (2014), who identified improved self-management, improved health knowledge, increased access to health care, and a preference for in-person care as being among the most reported barriers and facilitators of telehealth uptake and continued use.

GORST, COATES, AND ARMITAGE

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Received July 17, 2014 Revision received April 24, 2015 Accepted May 10, 2015 䡲

"It's sort of a lifeline": Chronic obstructive pulmonary disease patients' experiences of home telehealth.

Home telehealth can provide considerable benefits to people diagnosed with chronic obstructive pulmonary disease, yet 20% of patients abandon teleheal...
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