2. Methods and Materials
As seen in
Figure 1, assistive technologies can be assessed for satisfaction and non-satisfaction resulting either in good or poor matches to needs and aspirations and may suggest alternative choices or the need for improved designs [
19]. In this study, we concentrate on preferences for existing technologies by carers, for use by the people in their care. The study had two phases: phase one used a qualitative method to define a daily activity for further investigation and phase two used quantitative methods to explore a novel brochure-based approach to selecting packages of AT/ICT for that activity.
In phase one, general attitudes and experiences with assistive technologies were first probed by means of focus groups with carers that were organised through the Nottingham branch of the Alzheimer’s Society. A semi-structured instrument was devised to elicit opinion about the following areas: current use of AT, if any, and other technologies used by the person in their care such as household appliances and ICT products; opinions about the utility and aesthetics of technologies in current use; utility of AT to support choice and safety of the person in their care and communication of such choices; utility of AT to support autonomy and independence in household tasks and going out; and utility of AT to support personal relationships and participation in family activities. Focus group data was gathered through audio recording, then descriptive and frequency analysis was performed on the transcripts. The broader results of these focus groups were published in more detail elsewhere [
19] but are briefly summarised later in this paper along with task relevant details, including respondent quotes.
During the period of the main CASA project (introduced above) a long list of technologies of 128 products available for purchase in the UK had been compiled based on common areas of consumer products for activities of daily living including both AT and general ICT products. The results from the focus group were intended to help the researcher choose a relevant daily living activity to focus on to be supported by a sub-set of the product list, aimed at supporting more independence in that activity.
For phase two, a series of AT/ICT product brochures were then produced to introduce relevant items from the list as a semi-customised package to support the activity. A set of questionnaires (with tick box answers, rating scales, ranking or scoring) were used to elicit carer opinion about the packages and product features. Carers, different from the carers in phase one, were recruited at local Memory Cafés (drop-in centres). First of all, carers were asked about the daily living abilities of the person in their care and prior use of specified technologies. Second, a basic description of each the 15 products was presented as a paper brochure. Each brochure showed a picture of the products, a description of their key features, and prices. Carers were then asked to rank the importance of the features for each product and to score the product overall in terms of its practicality, desirability and affordability. A system of pair-wise choice selection was devised to help the carer to customise the package brochure to reduce the number of product choices after an initial review of these. Opinions on perceived ease-of-use, aesthetics, expected safety-in-use, independence of use and stigma related to the technology package were collected. Finally, each carer was asked to make a judgment on enabler packages in general, categorized my modes of transport of the shopping stage. IBM ®SPSS 22 was used to process the quantitative data.
A total of 16 informal carers were involved in the study. In phase one, taking place in March and April 2014, two focus groups of 3 carers each were organised with a convenience sample of six carers (50% female/male, aged: 52–83, average 68) who were caring for five individuals with various types and stages of dementia (3 males, 2 females) with an average age of 71. In phase two, taking place in August 2014, opinions were elicited from 10 informal carers recruited during three memory café sessions in the Nottingham area (50% female/male aged 57–81, average 70). These carers were caring for a total of 10 individuals (5 males, 5 females) with dementia of various types and stages, with an average age of 79.6. All studies were performed with ethical approval gained from the University of Nottingham Medical School Ethics Committee (reference No. R13022014 SoM PAPsych) and with an additional research agreement in place with the Alzheimer’s Society. Participants were given information sheets and signed consent forms.
4. Discussion
From the phase one focus groups it was found that carers saw a positive role for AT/ICT products in supporting meal-making whilst expressing doubts about potential for more independence for the person in their care, on the grounds of cooking and food safety. This led us to choose to design an enabler package as a whole solution for meal-making, from shopping to cooking. From phase two of the study, similar to phase one, carers were seen to be mostly quite negative about the capabilities of the person in their care to conduct the different tasks to fulfil shopping and meal-making activities independently. On the other hand, they were able to engage well with the AT/ICT product questioning with no prior notice and made detailed assessments of their design features, based on information given about these on the day. From both the product assessment (
Table 3) and analysis of features (
Table 4 and
Table 5) it was seen that digital/smart products had the lowest overall ratings with the exception of the task App. Carers showed preferences for functions such as monitoring, alarms and memory aids and use of pictures/video for prompting (
Table 4 and
Table 5).
There was a range of package variants chosen, which justifies the inclusion of choice in the offering, albeit from a limited selection. In general, enabler packages were seen by the majority of carers as increasing safety although with a concern about how well alarms would be responded to. It was seen that very few of the carers in our study were familiar with digital products (only 1 in 10 for questions in phase two). However, carers expressed preferences about specific aspects of online shopping, for example, even if they were less positive about smartphones, smartwatches and Apps in general. It is important not to confuse lack of experience with lack of interest and in the phase one interviews [
19] it was notable that one carer was positive about the potential of Smart TV, which is a very new technology.
It can be deduced from the enabler pack questionnaire (
Table 6) that users would ideally like support for modes of shopping that they are familiar with, with a high preference for support of shopping by car. Therefore, it is interesting to notice (
Table 2) that few of the individuals being cared for were considered able to drive at present and most were considered unable to go out and shop and return home unsupported. So, whilst we might have expected a better perception of relative usefulness of online tools that would allow a person to shop from home if they had limited ability to go out, we did not see this in our study. This suggests that greater exposure to ICT products would be useful to increase familiarity and highlight their potential. On the other hand, the result could be interpreted as an unmet need for technologies to assist with driving (to be fulfilled in the near future by self-driving/driverless cars, perhaps?).
The strengths of this study are that we have worked with groups of carers actively engaged in that role, in a range of different circumstances, and caring for dementia of varied severity and different types. We have successfully used our focus groups to identify a priority area for potential development of enabler packages and we have tested these with a new sample of carers. The package approach is potentially helpful in a market where there are many similar alternative products, since it can guide end users through what would otherwise be a mass of product detail. Our study is limited by the use of a pragmatic convenience sample, especially in phase two due to recruitment having taken place on the days of the Memory Café sessions with no prior arrangement with individuals. In particular, we did not collect details of primary or co-morbid medical conditions of the persons in care apart from a diagnosis of dementia indicated by the carer, nor the stage of severity of the dementia. The time available with participants was used to concentrate on the product assessments, to probe the benefits of enabler packages, to probe perceptions of capabilities to use them, and other aspects of user acceptance. Our sample was quite small so it is important not to overgeneralise (for example, in a different sample we could have found more prior experience with digital products). Furthermore, choice of products was limited to items identified in the earlier part of the CASA project by the wider partnership. This does constrict the degree of personalisation in the study. Given more time, we could have repeated and broadened the product search following the focus groups but this was not feasible in a short project. Therefore, future package designs could be more personalised than used here. Another limitation is the use of quantitative methods which were selected to best fit in with the setting of phase two where the data collection needed to happen efficiently so as not to burden respondents who were being engaged on the day at the Memory Cafés, unlike the phase one focus groups that were prearranged. Use of overall descriptive statistics on quantitative data will not provide the richness of a qualitative study that would reveal detailed individual needs. Furthermore, we decided not to expose carers to physical technologies due to time and budget constraints in the project as a whole, as well as for the same reason that it would not have been practical in the Memory Café setting in addition to the multiple questionnaires, although this could be done separately in the future.
Cudd et al. have previously developed a framework for user-centred design (UCD) of single technologies or whole solutions for people with dementia [
18] which includes the technology/solution itself and the user dyad of carer and person living with dementia. Focusing on the carer in this study, we have conducted one iteration of the first four steps in this framework: (1) Establish the desired activity of activities; (2) Establish a process model of the activity/activities; (3) Produce the best ‘test-bed’ and an experimental protocol to explore acceptability, usability and scenario-based functionality with end-users; and (4) Conduct the exploration. The framework recommends multiple iterations of these steps before moving on and this will need to happen here also, in particular to include people with dementia as end-users in addition to carers before finalising package offerings.
Acknowledgments
The research reported in this paper was supported by the NIHR MindTech Healthcare Technology Co-operative. The views represented are the views of the authors alone and do not necessarily represent the views of the Department of Health in England, NHS, or the National Institute for Health Research. The authors acknowledge funding support for the research through the Connecting Assistive Solutions to Aspirations (CASA) project, provided by the Technology Strategy Board (Innovate UK) Long Term Care Revolution initiative by means of a Small Business Research Initiative grant. The CASA project was a collaborative venture led by commercial partner Leone Services Ltd., in partnership with Sensixa Ltd. The University of Nottingham, University of the West of England, Bristol and Swiss Cottage School, Development & Research Centre. The authors would also like to thank the Nottingham branch of the Alzheimer’s Society, for organising the recruitment of carers and for hosting the focus groups, and all of the carer volunteers.
Author Contributions
All authors conceived the study. M.D.L.F. designed the experiments. All authors performed the experiments. M.D.L.F. and M.P.C. analysed the data. All authors wrote the paper and M.P.C. prepared the manuscript for publication, with input from the other authors including its revision following peer review.
Conflicts of Interest
The authors declare no conflict of interest. The funding sponsors had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, and in the decision to publish the results. M.P.C. and T.D. are trustees of the charity Trent Dementia Services Development Centre which has a licence for AskSARA to use it in the web-based AT Guide mentioned in the conclusions.
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