Table 3.
Overview feedback Step 3 and Step 5 and the finalization of the Flemish card game
| Card Nr. | Cards | Summery feedback step 3 | Summery feedback step 5 | Suggested changed | Accepted/not accepted |
|---|---|---|---|---|---|
| 1 | Not being in pain | ||||
| 2 | Not being short of breath | ||||
| 3 | Being neat and proper* | Can be understood as “keeping an object clean” rather than personal hygiene. | Proper is a word used in a “having a clean house” context. Suggest to change to something to underline it is about person hygiene | Being neat and tidy | Accepted |
| 4 | Not being afraid | ||||
| 5 | Having physical contact* | Unclear what kind of physical touch and if users would understand, but there were no problems about if the card was clear. | No comments. Card was perceived as very clear and important. | No changes were suggested since the card was perceived as straightforward and essential by potential users. | |
| 6 | That my family is prepared for my death | ||||
| 7 | Dying at home | ||||
| 8 | Being able to say goodbye to my loved ones | ||||
| 9 | Being able to share my memories and accomplishments with others* | Need for rewriting this card according to some health professionals as it should be more about “sharing life stories with others” as sharing “accomplishments” is not that important in Flanders. | No comments. Participants choose this card regularly. | No changes were suggested since the card was perceived as essential. Moreover, “share accomplishments” was perceived as important in step 2. | |
| 10 | Being able to take care of unfinished business with family and friends | ||||
| 11 | Being treated the way I wish to be treated | ||||
| 12 | Keeping my dignity | ||||
| 13 | Keeping my sense of humor | ||||
| 14 | Being surrounded by good friends | ||||
| 15 | Having someone who listens to me | ||||
| 16 | Not being a burden to my family | ||||
| 17 | Being able to do something for someone else* | Some healthcare professionals had comments about the translation since they felt this card was about “helping” and found “do something” too vague. | No comments. | No changes were suggested since the card was perceived as clear. | |
| 18 | Being able to talk about what scares me | ||||
| 19 | Being surrounded by my family | ||||
| 20 | Feeling that my life is complete | ||||
| 21 | That the doctor sees me as a whole person | ||||
| 22 | Not dying alone | ||||
| 23 | Be clear-headed | ||||
| 24 | Being able to pray* | Health professionals considered this card as not relevant for the context and suggested to widen the formulation of this card to “spirituality” | Potential users found this card very important. | No changes were suggested since the card was perceived as important. | |
| 25 | Having a spiritual counselor as support* | Some healthcare professionals suggested to use another term for “spiritual counselor” as they thought this term was unclear. | Potential users found this card clear | Since the term “spiritual counselor” is accepted and used by the all involved religions, no changes were suggested. | |
| 26 | Being able to talk about death | ||||
| 27 | Be at peace with God | ||||
| 28 | Getting my financial affairs in order | ||||
| 29 | Knowing how my body will change* | Unclear if it is about during or after life. | For people living with dementia and their family caregivers it was also important to understand how the mind will change. | Knowing how my body and mind will change | Accepted |
| 30 | Avoid discussions by ensuring my family knows what I want | ||||
| 31 | Having someone to represent my values and priorities* | Priorities could be a difficult word to use. Suggestion to change it to important things, values or preferences. | Potential users found the word priorities difficult and suggested to change this card. | Having someone to speak up for what I think is important | Accepted. |
| 32 | Being able to trust my doctor | ||||
| 33 | Having a healthcare professional I feel comfortable with | ||||
| 34 | Arrange my funeral in advance | ||||
| 35 | Not being dependent on machines* | Unclear what kind of machines. Suggestion to specific that kind of machines. | Unclear what kind of machines. Some potential users said they wanted a machine for comfort but not to keep them alive. | Not being dependent on machines to keep me alive | Accepted |
| 36 | A self-chosen end of life* | Though all healthcare professionals perceived this card as important, they found the formulation difficult. Some suggested to use the word “euthanasia” of “palliative sedation” as an example in the sentence. | Potential users found this sentence difficult. They suggested to reformulate it in a simpler way. | Being able to choose when and how I dieA | Accepted |
| 37 | Being able to record my choices* | Suggestion for more clarification for example “for the end of life”. | No comments. Card was perceived as very clear and important. | No changes were suggested since the card was perceived as clear. | |
| 38/39 | Joker |
* scored on one of the criteria below the minimum recommended I-CVI score of 0.78