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Table 4 Sample quotes for Themes and Sub-themes

From: Informal carers’ experience of assistive technology use in dementia care at home: a systematic review

Theme Sub theme Example Quotation 1 Example Quotation 2 Example Quotation 3
Positive aspects Relationships ‘the use of the device generates longer instances of interaction’ [70]. ‘Technology itself can become a ‘member’ of the social network, making it stronger’ [47]. ‘I believe that my ability to have my mother continue to live with us would be dramatically reduced if we didn’t have NMS’ [40].
Freedom and autonomy ‘As I say, I couldn’t have continued working as long as I did, and I’m still, we’re still benefitting from it [BUDDI device] you know. It, it’s really, I think it’s a wonderful device, wonderful’ [10]. ‘In this way, the picture phone helped the person with dementia maintain independence, something the relatives described as important’ [58]. ‘Informal caregivers, in contrast [to formal carers], request ICT solutions that enhance their personal freedom’ [63].
Safety ‘I would like to keep it [the passive positioning alarm] ... // because it really provides security’ [62]. ‘simple movement sensors or alarm systems that are networked to allow remote alerts were the most enthusiastically received’ [41]. ‘Family caregivers expressed the belief that electronic tracking enables the patients’ independent outdoor mobility and at the same time improves their safety’ [55].
Quality of life (stress, burden, wellbeing) ‘speaking watches" that read the time of day aloud at the push of a button. With this device, the caregivers experienced fewer questions and less stress and misunderstandings about the time’ [50]. ‘The family caregivers were satisfied because the SRC [Simple Remote Control] removed both worries and burden of interruptions at work’ [64]. ‘Informal caregivers reported that use of the system [preventative sensor technology] provided benefits to their mental well-being’ [61].
Competence ‘it [GPS tracking device] was used to enable the person to continue to go out alone’ [56]. ‘enabled them to better balance their needs for personal space with their desires to remain connected to the PWD during the night’ [40]. ‘For the caregiver, data shows that the picture-button telephone was also most useful, with five out of six caregivers claiming they themselves were still using the product 3 months after its installation, and each reporting they considered it useful’ [46].
Negative aspects Freedom and autonomy ‘Some participants feared that technology which simplified tasks too much might weaken a person’s own abilities such as in remembering numerical series and codes’ [59]. ‘You can trust another person, but I think technology would be a bit … well, what if the technology went wrong? You can’t be 100% sure that the person would be cared for when you walk out of the door, can you? If somebody else is there, then you know’ [41]. ‘Mrs B. pointed out the obligation to subscribe to an assistance platform. Mrs. B. would like to have the possibility to buy the device and manage by herself her husband’s wandering’ [54].
Relationships ‘I think people need people – not just gadgets, you know? That’s the worrying thing really, with the elderly in particular. The gadgets replace people, and there isn’t any comparison’ [41]. ‘The simple remote control used to be a great advantage for my wife, but now, after being at the hospital for some weeks, she doesn’t know how to operate it any longer. I have to tell her how to use it, all the time, and she is no longer able to use it when she’s alone’ [50]. ‘We don’t want technology – we want people’ [41].
Competence ‘Future willingness to use a technology generally outstripped their current willingness to use it’ [67]. ‘As she was not competent in informatics, Mrs. B. had to rely on the personal care attendant: “She logs very easily and communicates information to me”. Thus, the situation was not under Mrs. B.’s control’ [54]. ‘…..equipment may need some adjustments for use by elderly caregivers’ [52].
Quality of life (Stress, burden, wellbeing) 'Adding activities into the [electronic] calendar was extremely time-consuming and complicated compared to an ordinary calendar: "I cannot sit here evening after evening and struggle with this computer!’ [50]. ‘One of the caregivers reported that in some circumstances the system might increase the burden of care, if the sensors detected certain situations where additional care was required’ [61]. '…family members were not sure how to raise the issue of using an electronic tracking device: "How do you explain [to] your relatives that they will be monitored in all their outdoor activities?’ [55].
Use of AT Ethical issues ‘The persons with dementia and their spouses saw the value of being locatable and saw no problem with the persons with dementia being monitored; they had not even considered that aspect’ [62]. ‘Among the most central worries were fears of a dehumanized care’ [63]. ‘…relatives shifted between their own needs for safety and security and what they perceived to be the need of the person with dementia when reflecting on the use of ICT’ [58].
Help and support from carers ‘The engagement and interest of FC [Family Carers] was crucial in order to follow up the new AT device and support the person with YOD in using it’ [50]. ‘Carers provide practical help that involves cognitive effort and is emotionally challenging’ [49]. ‘the use of assistive technology was in some cases influenced by the availability of a caregiver willing to remind the person about the product’ [46].
Raising issues of using AT ‘She said she felt, it (a pendant alarm) made her feel like a crock, you know (laughing). She says, “I don’t need this, I’m perfectly alright.” And the way that I persuaded her to wear it was, I said, “It just makes me feel better to know that you can contact somebody if you have a fall in the house, or if you’re not too well and you can’t get to the phone.” So, I said “You might not want to wear it, but wear it for me please because it, it stops me worrying about you.” Erm, so that was why she wore it, really’ [10]. ‘The carers' attitude, commitment and will to learn about and follow through with the testing of the technology were vital if the equipment was to be useful and functional’ [48]. ‘One participant had adjusted their newly purchased washing machine by labelling each compartment of the machine so that his wife would know where to put the washing detergent and the rinsing agent, thus enabling her to “still be ruler of the laundry room,” as he put it’ [59].
Acceptance and knowledge of AT Costs and resources ‘It was striking that no participant talked about any time or money savings through using networked technologies’ [41]. ‘Several carers noted that AT was generally expensive. You know, some people can’t afford it. I don’t mind paying for it ‘cause it’s helping her (mother) but I think it, it is expensive. It is quite steep, but then again, if her attendance money is there for it and she needs it, you, you don’t mind getting it if it’s going to help her, you know’ [10]. ‘…when the participants considered technology to be beneficial to their relative with dementia or to themselves in their roles as significant others, they were ready to try technological solutions for support’ [59].
Acceptance of AT ‘The participants saw technological innovations as an intrinsic feature of societal change and inevitable. The expectation was that the use of technology would increase, particularly for the next generation of carers who would have the aptitude and skills to adopt them’ [41]. ‘One prerequisite for incorporation of technology emphasized in all groups was that technology must not be perceived as stigmatizing by the prospective user’ [59]. ‘..the use and usefulness of the five products tested was largely determined by their technical capacity’ [46].
Knowledge of Technology ‘Carers and GPs generally found the term AT unhelpful and open to interpretation…… “Well, I think the whole thing was introduced to me in a very nebulous way. Technology, what the hell does that mean?”’ [69]. ‘Timely information is important for the FC, because the AT may become too complicated to handle for the person with YOD, as the dementia progresses’ [50]. ‘Dementia caregivers' knowledge of new technologies lags behind current technology development’ [67].