The results are structured by use and experience based on the two research questions. A division is made between those data obtained from the professionals and from the clients.
3.1. Participants
Of the 12 professionals, 17% were male, with an average age of 46 (± 14.6 years) ranging from 19–63 years. All had Dutch nationality and a higher educational level. Seven professionals worked in the care of people with disabilities sector, one in the mental health care sector, two in the social care sector, and two were independent of any sector.
Of the 26 clients 54% were male, with an average age of 45 (± 24.9 years), ranging from 18–92 years, and 42% had a low educational level. Twenty-three participants had Dutch nationality, the others were of Turkish or Indian origin. There were five clients in the nursing and care of elderly sector, nine clients in the care of people with disabilities sector, three clients in the mental health care sector, seven clients in the social care sector, and two clients were receiving care in more than one sector. Fifteen clients used ‘What matters to me’ independently, three relatives, four professionals, and four clients completed it together with a professional.
3.2. Use of ‘What matters to me’
To answer the first research question, To what extent was ‘What matters to me’ used in long-term care settings? The reach and recruitment of clients were explored and the numbers concerning actual use were gathered.
The 12 professionals asked 50 clients to use ‘What matters to me’. Six professionals asked all their clients who fulfilled the inclusion criteria, to take part in the study and use ‘What matters to me’. Four professionals asked a small number of clients, and two did not ask their clients. Some professionals gave information and asked their clients to use the tool without mentioning the additional questionnaire. Twenty-six clients filled in the questionnaire after using ‘What matters to me’. Twenty-one knew about ‘What matters to me’ via their professionals, and five clients heard about it through informal routes, a friend or partner.
Considering the actual use, the log data showed the number of categories used by the clients, the time professionals and clients spend on using and discussing ‘What matters to me’, and whether or not prints were made of the generated overview. The average estimate professionals made of the time they spent together with their clients ranged from less than ten minutes to 30 minutes.
Of the 102 unique visitors, 69% filled in one or more categories. The log data showed that 33 of the 71 participants filled in all five categories. None of the categories was filled in less frequently than the others. The option to write free text comments on the answers was used by 27% of the participants. The average actual time the participants spent was 6.9 (± 0.03) minutes, ranging from two to more than 30 minutes (Table 2).
Table 2
Actual use of ‘What matters to me’, the categories and time spent, obtained from the log data of the process evaluation.
Variable | Number of participants (N = 71) |
Number of categories filled in - 1 - 2 - 3 - 4 - 5 | 20 11 6 1 33 |
Categories filled in - Health - Living conditions - Family and friends - Daily life - Finances | 45 42 45 52 46 |
Addition of extra comments to answers | 18 |
Time spent - 0–10 minutes - 11–20 minutes - 21–30 minutes - > 30 minutes | 54 12 4 1 |
The generated overview with preferences was printed or emailed by 74% of the clients. Six out of 12 professionals discussed the overview with their client. However, the interviews revealed that more clients would have liked to discuss the overview with their professional.
Client 3: “Coincidentally, the next day I had a consultation and wanted to show the overview to my coach, but my coach was not interested and did not even look at it.”
3.3. Experiences with ‘What matters to me’
The interviews, field notes, and questionnaires were used to answer the second research question, How was using ‘What matters to me’ experienced? All clients were in need of care in the near future, but their need was not classified as urgent. For example, the father of an autistic son acknowledged he was ageing and was uncertain about the future care for his son:
Client 1: “My son is autistic, he is 46 now and has just received a long-term care indication. I am 72 and have just had an intestinal operation. This has made me worry about the future. My wife died last January, and of course I worry about what will happen to my son.”
In the interviews, clients were asked how they knew about ‘What matters to me’ and what information they had received. They all said that they were told about it by a professional or relative, and had received information from them.
Client 5: “Someone came to discuss housing and living conditions for my future with us. It is not immediately necessary at this time, but I would like to be covered for later on. Then she told me about a tool that could help us and asked if I was willing to use it. I said ‘I would really like to use it.’”
However, some professionals hesitated to ask clients to participate based on the assumption that the client would not be willing to participate. Other professionals were hesitant at first, but the clients were motivated to use and discuss their preferences.
Professional 5: “Together with colleagues, I handed out some flyers with the link to ‘What matters to me’. Although our population (mental disabilities) does not seem to be very motivated to take part in research, we often discussed the ‘What matters to me’ questions during consultations. We looked at the questionnaires a few times, and this clearly added value to the conversation.”
The professionals graded the quality of the tool at a mean of 7.73 (± 0.75, range seven to nine) out of 10. Recommendations for improvements were given in the comment field, including a map showing organizations where a client could receive assistance or care, a read-aloud function, a non-digital version, and a separate section for informal caregivers. The clients evaluated ‘What matters to me’ by answering the PSSUQ, and gave it a mean score of 6.24 (± 0.76) out of seven. During the interviews, clients graded the user-friendliness at an eight or nine (out of 10). Relatives who used ‘What matters to me’ wished to label their role as the client’s proxy.
Relative 2: “The thing I missed from ‘What matters to me’ was that there is nowhere to indicate that you are filling in the answers on behalf of someone else, not for yourself.”
Clients thought about possibilities to extend the reach by naming professionals and organisations that could help in commercial advertising of ‘What matters to me’ to their clients. They also suggested using the media, social media, and diverse awareness-raising channels, and posting reports or recommendations to others.
Client 7: “A sort of ‘like’ button that can be shared in all kinds of ways, a share button and somewhere to leave a comment. I think these things could help people when they generate a search, because when I googled ‘What matters to me’ you were not really near the top.”
All clients would recommend ‘What matters to me’ to others. All clients who used the tool wanted to talk about the overview with a professional. The clients and professionals who used the overview at the follow-up consultation were positive about its usefulness. It was helpful to prepare for consultations, set the agenda, and to build a relationship with someone in a short time since the issues that mattered in someone’s life were directly on the table.
Professional 7: “‘What matters to me’ is useful to get to know someone a bit better. Thus, asking the person to fill in the questions will save a lot of time, and I will acquire more knowledge in a shorter time.”
Client 4: “I really liked the idea of having the overview with me. It could help me to remember things during the consultation. We had to drive there, then find the right place, and then getting there on time, very stressful situation. Having this overview gave me a good feeling. We now have something in reserve, and I have discussed all the important things.”