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.
Requirements for technical competence and operation of equipment
Many respondents discussed their decision to decline the trial in the context of views about the technological nature of the equipment. It seemed unsurprising that some people who felt they would have difficulty engaging with the technological requirements of the equipment, had found other forms of technology to be problematic. For example, the following respondents reflected on the place of technology in the modern world and the generational differences regarding the use of contemporary communication technologies:
"‘When you have a hassling day; I stood at my front door the other day and I thought, 'really, truly, this world's not for me now, it's too complicated,' … you don't speak to anybody now, you get buttons you push and press and, just a nightmare… I've got a mobile phone but it’s emergencies… if I want my daughter, that's all and I wouldn’t even know how to use it. I've got instructions.’ (ID27)"
"‘The older you get the more forgetful you get, it's sometimes difficult to manage that sort of machinery, isn't it, to remember how to do it … younger people obviously that are computer wise… key boards, on the key pads and all the texting and everything… I think when you are not used to it … you need to read the manual every time you want to do something.’ (ID33_wife)"
Participants’ reflections on the place of contemporary communication technologies and their sense of alienation from such technologies were often combined with doubts about their capacity to engage with what they understood to be the operational requirements of the equipment. The following respondent in the east London site, who spoke some English as a second language, explained his decision to decline the trial as being due to a combined lack of confidence with language and a lack of confidence with technology. This was an important issue because of the ethnic diversity within the Newham population where the equipment was only being provided to operate in English:
"‘Because I am not much good English to read the computer, you know that …see you know what thing you are going to type and… the gentleman show me the thing… that one thing connect with your television and weight machine…one with the computer, with the internet… I think if I try I can, but depend on the internet using you know, I don't know how to use the internet.’ (ID4)"
Uncertainties regarding the technological aspects of the equipment did not seem to be mitigated by explanations presented at the home assessment visit. For example, the above respondent was not alone in thinking (following the home visit) that he would need to ‘type’ on a keyboard, when in reality no typing was involved, nor was there any need for familiarity with using a computer or the internet. Other respondents indicated a similar misunderstanding.
Comments made in interviews following the home visit indicated a high level of uncertainty regarding the technology being offered and that staff varied in their own knowledge of the intervention:
"‘They didn't show, didn't show me any actual um, equipment, but they mentioned [it] worked in conjunction with the television or PC or something like that, or a mobile, and I don't have either… I got the impression from what he said that er, being as though I didn't have those… the help I'll be able to get, would be sort of, rather limited… I mean, I'd have another, just under another seven years to wait before I got my free license.’ (ID34)"
Perceived uncertainties and questions that had remained unaddressed from the initial visit sometimes led to the respondents asking the interviewer more questions about the intervention:
"‘Well, he said [staff conducting home visit] you can … for monitoring your own blood pressure and… He said, ‘I don't understand anything about it.’ He was quite a nice chap, but… So I've got to be told to use a computer?… can I ask you, what is the technology?’ (ID25)"
The three participants who withdrew from the trial after they had received the equipment, described some technical difficulties they had in getting the equipment to work (ID156, ID89), and false alarms due to faulty readings (ID92). They described the response to some of these problems as being ‘slow’ and ‘frustrating’, and one described how the proposed solution (an additional phone line) brought further disruption:
"‘Nothing, wasn't working at all… And the next thing you know he comes in and he says, 'you can't do without the… phone line,' and so I said to him, 'It is somewhat of an aggravation, you must take it back.'… I couldn't, you know, have too many wires here and all this, you know. I said to myself, 'why should I have it?'’ (ID156)"
Observations of the home assessment visits added further examples to illustrate the findings within this theme from the interviews. For example, field notes demonstrated that people could easily misinterpret the technological aspects of the intervention as they recorded the ‘blank’ expressions on faces of some potential participants when staff verbally described the interventions and used terms such as ‘broadband’ ‘bluetooth’ and ‘internet’. At one home visit, the staff member conducting the visit explained to the potential recipient of telehealth that the recordings from different pieces of equipment were sent from the telehealth unit to the monitoring centre via an internet connection. The member of staff explained that an adapter would be fitted to their phone connection with permission in order to provide access to the internet. The patient then asked if she would be able to get lots of information from the internet and seemed to assume she might be able to use it for general purposes. However, she also went on to state that she was not at all certain she wanted to take part because she did not think she would know how to use it and because she did not think it would help.
Observation visits in the three sites also recorded views from staff that they had restricted time in which to explain the interventions because they were often required to conduct 8 or 9 home visits each day. As one member of staff stated, she always tried to explain the equipment but often met with very ‘blank faces’. On the day she was shadowed to conduct home visits, this particular member of staff had 9 patients to visit. At the first appointment, which was for a potential recipient of telecare interventions, she did demonstrate use of a ‘lifeline’ pendant which was to be worn round the recipient’s neck, enabling them to push an emergency button. All of the potential telehealth participants were shown a laminated information card with pictures to demonstrate how the telehealth equipment worked. In several cases, patients were also shown a piece of peripheral equipment such as blood pressure monitor.
Threats to identity, independence and self-care
Most respondents indicated that they associated the use of telehealth and telecare with a high degree of dependency and ill health. In the majority of cases, respondents seemed to want to distance themselves from negative connotations of old age, sickness and dependence, and instead depicted themselves as having a strong sense of personal responsibility for maintaining health, self-care and independence that could be threatened by the interventions:
"‘I said to the man [who came to do the home visit], "I appreciate what you're doing… but I'd feel more crippled"… As long as I can get out, that's all I am worried about. As long as my feet keep going, I'll be alright. Yeah. I mean, sometimes we're out shopping and might see these elderly people - we're old; eighty four years old, the both of us are. We see these old people… hobbling along… and we're walking, you know, and think I wonder what age they are.’ (ID28)"
The respondent below also talked about the need to keep going and getting outside rather than monitoring his health indoors:
"‘You've got [to have] the will power… if I can't do it I am finished. If I wouldn't have that I'd be, I'd be stuck inside here you know, and looking through the window like… I throw myself in the garden and everything. Everything I do I'm working on, I cook myself dinners and everything.’ (ID156)"
Further examples illustrate the perception of TH and TC as appropriate for someone who was ‘a lot more ill’ (ID31) or if there was ‘no-one in the house’ (ID35). Responses commonly indicated a strong sense of personal responsibility for health, illness and self care; and the interventions threatened to undermine such a sense of ‘control’ and current approaches to managing health problems:
"‘I think you feel like you're not in control of your life… I just felt that, well, it certainly wasn't for me, and to, from how he explained it, um, you tended to have to do your blood test every single day… I try to be a bit more relaxed and… I just felt it, it did put a bit more pressure on me… you know, holidays or if I had to stay at my mum's, oh God, I've got to come home and do the machine.’ (ID31)"
For the above respondent, a sense of control was maintained by keeping her health problems within a broader perspective alongside other priorities in life, such as her caring responsibilities for her mother and grandchildren. In this way, her diabetes was allowed to fade into the background of her life. The following presents another similar example for this man who originally came to live in the UK from Ghana. He was planning to do some traveling, and whilst he talked about his active self care strategies, he was also keen to keep ‘illness’ in perspective, and indicated a degree of ‘chance’ was also involved:
"‘For me I see there are two things in life, the day you were born and the day you will die, you have no control, within it yes, you keep yourself healthy. That is all. So, I don't drink, I don't smoke, and I am a vegan so… If you live in this world and then you start complaining… thinking about things alone, well will make you, you know, it is better you don't live at all… I am not worried… if death comes today ‘bye, bye’ I'm gone!’ (ID5)"
In the following extract, a respondent talks about how the intervention would increase his dependence on his wife who would be required to help him to use the equipment because he was blind. This would be in marked contrast to the level of independence he had established in managing his condition:
"‘It would rely upon my wife to input the information via the TV [due to blindness]. And she doesn't like technology one bit… I couldn't do it myself. You know, I have a job to read the blood sugar, I have a job with my blood pressure. All the things that I do for myself are easy; I make my own life easier you know. I've got a telephone with the big numbers.’ (ID29)"
Other respondents were also keen not to dwell too much on their illness, preferring not to be reminded if their recordings were abnormal because it would make them worry (ID35), or remind them that they were not ‘behaving’ (ID89). One man preferred to distance himself from medical details (ID135), and some viewed the intervention as having the potential to make them ‘hypochondriac’ (ID33P, ID145[wife]). This was also illustrated in one of the cases observed whilst shadowing the staff conducting home visits. Following the description of the equipment, the potential recipient (ID_HV5) said to the member of staff “I won’t lie to you, I don’t want to do it”. He went on to explain that he did not want attention focused on his health problems and his aversion to receiving too much information about medical matters (field notes ID_HV5). Similar to other interview respondents, he also seemed surprised to be offered the intervention and stated “we’re [referring to himself and his wife] not old enough are we?” (field notes ID_HV5).
Others viewed the interventions as posing a threat to independence and activity, for example, by inducing ‘laziness’ (ID34). The following respondent seemed to indicate a precarious level of independence because of great difficulty with daily tasks due to additional problems with arthritis, and thought the equipment might further undermine her level of activity and independence:
"‘Because my hands were very bad at that time. They were so very, very swollen and hurt like mad … Well, I think I did say with my hands, I couldn't cope with anything fiddly… It's not because I don't want to necessarily. But I feel like as I say, I lost a lot of my confidence. For instance, I wouldn't be able to go on a bus tour or anything like that anymore.’ (ID136)"
In 3 cases potential recipients of the intervention were considered too ill or too dependent by their carers, and their views highlighted the importance of the identity and role of carers. These respondents considered the family member they cared for to be in need of a level of human care and supervision that was impossible to provide via telehealth and telecare equipment. For example, in one case the carer of a man receiving palliative care for lung cancer did not perceive the intervention to be helpful because someone was always with him and he was already being carefully monitored at home by community and hospice staff (ID134P). In two other cases, respondents had turned down the offer of telecare on behalf of their adult children who had learning disabilities and whom they had cared for all their lives:
"‘Well that's the reason we turned down the tele thing, because somebody needs to be with Jane all the time… So if you’re with somebody all the time… you know, exactly if there's anything wrong, just by their behaviour.’ (ID31_Father)"
"‘It wouldn’t be beneficial; we would have call outs all the time… he [son] is very poor at taking messages off the phone… they would have been at the door and even if he answered the phone, he would sound as if he was in trouble when he wasn't.’ (ID161_Mother)"
Expectations and experiences of disruption to health and social care services
A final strong theme across many of the interview accounts related to potential changes in service provision that might arise from having equipment installed, and this was reflected upon in relation to current and previous experiences of services. Respondents often described their satisfaction with current services and how they preferred the existing care relationships that they had with health care providers:
"‘They put things in your home don't they… and it all goes through to somebody else. You know, you don't have to go to the doctors. It's all done indoors and all that. Too complicated for me… no, no, I just like things plain and simple. I'd sooner go over to the doctor. I mean, I can go over there if it's an emergency.’ (ID27)"
"‘But, as I say, I go to see the nurse for my asthma every couple of months, and if I don't she sends for me, and the doctor, he keeps an eye on my blood pressure. I go to, um, The London, er, once a year for my renal tests… So, we are, you know, we are completely under the care of the professionals.’ (ID28)"
Other respondents who had quite severe problems were often already receiving specialized services. For example, the following respondent with heart failure and COPD, described his relationship with a specialist care team:
"‘And then you have their emergency number, and then the minute you think your breathing is labouring and you've got a problem, you phone the red team, we've got the nurses mobile number… they come into your home… Every few days if you're bad, they can come back like every couple of days… it's absolutely brilliant.’ (ID33)"
His wife also talked about the value of dealing with specific staff who they knew well:
"‘I am perhaps a bit pessimistic about things like that, but I don't always have faith in things like that [telehealth] you know; I think it is far easier for me to pick up the phone and phone Sally and say… Jack's not well and she will l say, 'oh yes, I'll pop round,' and start taking or she will give me advice and I am speaking one-to-one with someone rather than something going through and you think have they got that? Is there someone at the other end?’ (ID33_partner)"
In the following extract the wife of one respondent who was receiving palliative care through the local hospice and community nurses described their current service arrangements:
"‘I think I'm still of the same opinion, purely because as I say, we have such good contact with our district nurses and our supporting teams around us. I mean, I've only got to phone the hospice and somebody will come out…we've got so many contacts around us.’ (ID134_wife)"
For one of the potential telecare participants, her parents described a long history of problems they had experienced within the social care system and how this had impacted on perceptions of the current changes being offered, at a time when they had started to feel settled and content with service provision:
"‘No, I mean, you see she was diagnosed when she was fourteen months; we seem to have gone from one thing to another to another. You think you settled for a couple of years and then they change everything… They had a social worker come around there she took three, nearly three nights interviewing us about Jane's needs, went back to the office put it in her drawers as closed file, because she was leaving and that was the end of it… we lost faith in them.’ (ID32_father)"
Some respondents referred to the lack of integration of the trial with routine care and expressed surprise that doctors they consulted were not always aware of the trial (ID92). The following respondent described how this did nothing to encourage her to take part:
"‘I did notice, when I went to the GPs the other day…there was a note on there… but he didn't mention it… I think, you know, if they want to make more of it, then they've got to liaise with each other a bit more… because… if one of those people were to talk about it, it's a bit different, isn't it, than speaking to someone completely new.’ (ID31)"
Observations of the home assessment visits indicated that most members of staff made attempts to highlight that the research was being conducted via general practices and as one member of staff stated, she tended to start her visit by saying ‘your GP has put your name forward as someone who could benefit from telehealth or telecare’. Despite this, some people visited were also uncertain as to whether it would influence existing services. For example, one woman asked whether the use of telehealth would change her existing management at home where she had a carer for 1 day each week and where she said ‘on the whole, I manage pretty well’ (ID_HV1).
Two respondents who withdrew from the trial described how the service changes they experienced caused additional stress. For example, one woman said she ‘did not want to be a nurse’ (ID89), and the requirements to conduct daily monitoring were ‘too time consuming and frustrating’, and she was much happier to have returned to a regular appointment (fortnightly) with the community matron. Another man (ID92) described the good care he received prior to joining the trial, but how he was subsequently discharged from the specialist professionals who had been involved in his care. Whilst he was entered into the trial for his diabetes, he described his main problems as ‘complex problems with my heart and breathing’, and that the faulty recordings and changes in service provision were causing him great stress.