Table 4 Pre- and post-intervention quality of life, quality of relationship, psychological distress, and subjective burden for carers at phase 1

Quality of life (QOLLTI-F V2)

 Global (0–10)

6 (3–8)

6.5 (4.75–8.25)

-.954

.340

 Environment (0–10)

9.5 (8–10)

8.3 (7–10)

-.422

.673

 Patient condition (0–10)

2 (1–6)

4 (1.8–5.8)

-.719

.472

 Carer’s own state (0–10)

6.2 (4.8–7.4)

7 (5.3–8.5)

-.816

.415

 Carer’s outlook (0–10)

7.3 (6 -10)

7.5 (6.8–9.8)

-.341

.733

 Quality of care (0–10)

9 (6.3–10)

8.3 (6.8–10)

-.170

.865

 Relationships (0–10)

6.5 (4–8)

6.8 (5.5–9.3)

-.774

.439

 Financial worries (0–10)

8 (2–10)

10 (1–10)

-.378

.705

 Total score (0–10)

6.1 (5.9–7.2)

6.9 (6.1–8)

-1.172

.241

Quality of relationship (PNRQ)

 Positive scale (0–48)

38 (32–45)

39 (33–43)

-1.246

.213

 Negative scale (0–48)

2 (1–9)

1.5 ( (0–9.2)

-.677

.498

Quality of relationship (CSI-4, 0–21)

15 (14–19)

15 (13.8–18)

-.853

.394

Psychological distress

(BSI-18)

 Depression (0–24)

3 (2–7)

1.5 (0–4.5)

-2.124

.034

 Anxiety (0–24)

6 (2–8)

2 (1–4.5)

-1.527

.127

 Somatisation (0–12)

1 (1–4)

0.5 (0–1.8)

-1.292

.196

 Panic (0–12)

2 (1–4)

1 (0–2)

-1.611

.107

 Total score (0–72)

13 (7–20)

7.5 (1.8–12.3)

-2.045

.041

Subjective burden (BSFC-s; 0–30)

14 (8–18)

14 (6.8–16.3)

-1.177

.239