Table 3 Challenges and potential solutions identified in interviews (Numbers correspond to instances of coding; I = investigator interviews; P&FC = patient and family caregiver interviews)

Facilitating participation of those with serious illness

29

12

41

Have meetings in the community and/or hosted by trusted community organization - at least initially.

1

2

3

Use virtual methods to overcome challenges (such as travel)

2

10

12

Managing issues of death and illness, including progression

23

8

31

Engage patients before they are too sick

1

1

2

Avoiding paternalism or gatekeeping

12

5

17

Recruit sensitively and unobtrusively

5

9

14

Minimizing burdens

5

10

15

Have support services available (e.g., parking)

2

2

4

Navigating decision capacity or its fluctuation

7

2

9

Have family caregivers involved to support cognitive limitations

3

1

4

Dealing with different communication abilities (e.g., due to neurological illness)

3

4

7

Allow additional time for communication

1

0

1

Have short or alternative means of feedback

7

11

18

Have a peer partner to support the participant

3

1

4

Finding the right time to recruit partners, including caregivers

2

4

6

Recruit sensitively and unobtrusively

5

9

14

How to respond when the patient and caregiver voices are conflicting

3

0

3

Having a joint patient and caregiver together on the team still creates useful dialogue

2

1

3

Totals

84

45

129

Totals

32

47

79