The result section begins with a description of the participants involved in this study. Thereafter, the results are structured by the two research questions. Research question 1, use, and Research question 2, experience. The components context, fidelity, dose delivered and received, and reach are used to describe the use of ‘What matters to me’, and the components fidelity, dose delivered, satisfaction, reach, and recruitment are used to describe the experiences with the tool. A division is made between those data obtained from the professionals and from the clients. At the end of the results section a table will show the six components of the process evaluation with a summary of the findings.
3.1. Participants
Twelve professionals filled-in the questionnaire at the end of the study. Seventeen percent were male, and the average age of the professionals was 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, one in mental health care, two in social care, and two provided care in more than one sector.
The professionals recruited 24 clients and two clients were reached via the pop-up built in ‘What matters to me’. These 26 clients used the tool and completed the additional questionnaire as part of this study. Of the 26 clients 54% were male, and the average age of the clients was 45 (±24.9 years), ranging from 18-92 years. Forty-two percent had a low educational level. Twenty-three participants had Dutch nationality, the others were of Turkish or Indian origin. Five clients received care 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 received 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 process evaluation component context was described, and the components fidelity, dose delivered, dose received, and reach were explored. The context of the professionals and clients is described in the previous section.
Considering the components dose delivered and reach, 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-one users knew about ‘What matters to me’ via their professionals, and five already heard about it through informal routes, a friend or partner.
Considering the fidelity and dose received, = the average estimate professionals made of the time they spent together with their clients ranged from less than ten minutes to 30 minutes. The total number of spontaneous and referred visitors of the tool was 102, of which 71 clicked and filled-in on one or more categories of the tool. The log data showed that 33 of these 71 visitors 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). 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.”
Table 3. 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
|
3.3. Experiences with ‘What matters to me’
The process evaluation components fidelity, dose delivered, satisfaction, reach, and recruitment were explored to answer the second research question, How was using ‘What matters to me’ experienced? .In the user context, 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.”
When questioned about the dose delivered and dose received, all clients said that they were told about ‘What matters to me’ by a professional or relative, and had received the link to the tool and relevant use 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.’”
Considering the component recruitment in the process evaluation, some professionals hesitated to ask clients to participate due to work pressure of the professional, but also based on their 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.”
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.”
Considering the fidelity, participants who did not fill-in all categories were questioned for their reasoning. All replied that the categories of which they did not answer the propositions were considered not useful for their situation. 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.”
All clients and professionals would recommend ‘What matters to me’ to others. Satisfaction was further explored by asking how clients experienced the use of the tool. 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.”
Table 4. Summary of findings, quantitative and qualitative results are presented for each component(29).
Components
|
Quantitative results
|
Qualitative results
|
Context
|
The users are involved in elderly care, care for people with disabilities, mental healthcare, and social support.
|
All clients were in need of care in the near future.
|
Fidelity
|
71 users filled-in the tool and completed one or more categories. All categories were used.
The average time spent was 6.9 (±0.03) minutes.
The tool was rated 6.63 (±0.88) out of seven by clients and 7.73 (±0.75, range seven to nine) out of 10 by professionals.
|
Recommendations for implementations were given, including a separate version for relatives and a non-digital version.
|
Dose delivered
|
All clients knew about the tool and received the link via a professional or relative.
|
The professionals handed out information about the tool to some of their clients. The additional questionnaire was less often given to their clients.
|
Dose received and satisfaction
|
The tool was filled-in as recommended, but the overview was not discussed by all professionals during consultations with their clients.
|
The tool was helpful to prepare for consultations, set the agenda, and build a relationship.
All clients and professionals would recommend the tool to others.
|
Reach
|
26 of the 50 clients asked by professionals fill-in the additional questionnaire.
71 of the 102 visitors of the tool filled-in one or more categories.
|
The reach was expected to increase by the inclusion of more organisations and professionals, the use of (social) media or other channels.
|
Recruitment
|
|
Professionals hesitated to ask clients to participate based on assumptions of pressure for the client. Due to work pressure it was difficult to recruit professionals.
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