Table 4.

Individual item Satisfaction Questionnaireand quality of communication results for FACE-Rare pACP intervention with families of children with ultrarare diseases (n=7)^*

	Family caregiver responses
	Session 1 Carer Support Needs Assessment Tool (CSNAT) (n=6)	Session 2 CSNAT support action plan (n=6)	Session 3 Respecting Choices Next Steps goals of care conversation (n=7)	Session 4 Respecting Choices Pediatric Advance Care Planning (n=7)
Satisfaction	n (%)	n (%)	n (%)	n (%)
It was useful†	6 (100.0)	6 (100.0)	7 (100.0)	7 (100.0)
It was helpful†	6 (100.0)	6 (100.0)	7 (100.0)	7 (100.0)
I felt scared or afraid†	1 (16.7)	0 (0.0)	1 (14.3)	0 (0.0)
It felt like a load off my mind†	2 (33.3)	4 (66.7)	2 (28.6)	5 (71.4)
It was too much to handle†	1 (16.7)	0 (0.0)	0 (0.0)	0 (0.0)
I felt satisfied†	5 (83.3)	5 (83.3)	5 (71.4)	6 (85.7)
It was harmful†	0 (0.0)	0 (0.0)	0 (0.0)	0 (0.0)
I felt angry†	0 (0.0)	0 (0.0)	0 (0.0)	0 (0.0)
It was something I needed to do†	5 (83.3)	5 (83.3)	7 (100.0)	7 (100.0)
I felt sad†	1 (16.7)	0 (0.0)	4 (57.1)	2 (28.6)
I felt courageous†	2 (33.3)	3 (50.0)	4 (57.1)	4 (57.1)
It felt hurtful†	0 (0.0)	0 (0.0)	1 (14.3)	0 (0.0)
It was worthwhile†	5 (83.3)	5 (83.3)	6 (85.7)	7 (100.0)
Quality of communication
1. Do you think that your attitudes are known by the interviewer?‡	5 (83.3)	6 (100.0)	5 (71.4)	6 (85.7)
2. Did you feel that the interviewer cared about you as a person?‡	6 (100.0)	6 (100.0)	7 (100.0)	7 (100.0)
3. Did you feel that the interviewer listened to what you said?‡	6 (100.0)	6 (100.0)	7 (100.0)	7 (100.0)
4. Did you feel that the interviewer gave you enough attention?‡	6 (100.0)	6 (100.0)	7 (100.0)	7 (100.0)
5. How would you rate the overall quality of the discussions you just had with the interviewer?§	6 (100.0)	6 (100.0)	7 (100.0)	7 (100.0)

^*One father completed the process measures.

^†Agree or strongly agree.

^‡Probably yes or definitely yes.

^§Good, very good, or excellent.

FACE-Rare, Family-Centered Pediatric Advance Care Planning-Rare.