Table 2 Responses of CDS items by DSRD and DSN caregiver groups

Financial impact

Modify work hours

 No

26 (11.5%)

90 (65.7%)

116 (32.0%)

< 0.001

 Yes

200 (88.5%)

47 (34.3%)

247 (68.0%)

Stop working

 No

109 (48.7%)

98 (71.5%)

207 (57.3%)

< 0.001

 Yes

115 (51.3%)

39 (28.5%)

154 (42.7%)

Increased financial burden

 No

78 (34.5%)

69 (50.4%)

147 (40.5%)

0.003

 Yes

148 (65.5%)

68 (49.6%)

216 (59.5%)

Modify educational/career plans

 No

124 (56.1%)

88 (64.2%)

212 (59.2%)

0.128

 Yes

97 (43.9%)

49 (35.8%)

146 (40.8%)

Housing

Change housing

 No

173 (76.9%)

119 (86.9%)

292 (80.7%)

0.020

 Yes

52 (23.1%)

18 (13.1%)

70 (19.3%)

Move closer to medical care

 No

210 (94.2%)

134 (97.8%)

344 (95.6%)

0.121

 Yes

13 (5.8%)

3 (2.2%)

16 (4.4%)

Landlord issues

 No

205 (90.7%)

135 (98.5%)

340 (93.7%)

0.003

 Yes

21 (9.3%)

2 (1.5%)

23 (6.3%)

Law enforcement involvement

 No

202 (89.4%)

136 (99.3%)

338 (93.1%)

< 0.001

 Yes

24 (10.6%)

1 (0.7%)

25 (6.9%)

Sleep

Changed sleeping arrangements

 No

83 (36.9%)

101 (73.7%)

184 (50.8%)

< 0.001

 Yes

142 (63.1%)

36 (26.3%)

178 (49.2%)

Less sleep

 No

99 (43.4%)

117 (85.4%)

216 (59.2%)

< 0.001

 Yes

129 (56.6%)

20 (14.6%)

149 (40.8%)

Sleep shifts

 No

187 (82.0%)

130 (94.9%)

317 (86.8%)

< 0.001

 Yes

41 (18.0%)

7 (5.1%)

48 (13.2%)

Changed sleep hours to match

 No

149 (65.4%)

116 (84.7%)

265 (72.6%)

< 0.001

 Yes

79 (34.6%)

21 (15.3%)

100 (27.4%)

Other change

 No

200 (87.7%)

137 (100.0%)

337 (92.3%)

< 0.001

 Yes

28 (12.3%)

0 (0.0%)

28 (7.7%)

Worse sleep quality

 No

23 (10.2%)

89 (65.0%)

112 (30.9%)

< 0.001

 Yes

203 (89.8%)

48 (35.0%)

251 (69.1%)

Disrupted sleep

 No

51 (22.4%)

106 (77.4%)

157 (43.0%)

< 0.001

 Yes

177 (77.6%)

31 (22.6%)

208 (57.0%)

Fragmented sleep

 No

108 (47.4%)

102 (74.5%)

210 (57.5%)

< 0.001

 Yes

120 (52.6%)

35 (25.5%)

155 (42.5%)

Not rested

 No

67 (29.4%)

122 (89.1%)

189 (51.8%)

< 0.001

 Yes

161 (70.6%)

15 (10.9%)

176 (48.2%)

Nap during day

 No

142 (62.3%)

128 (93.4%)

270 (74.0%)

< 0.001

 Yes

86 (37.7%)

9 (6.6%)

95 (26.0%)

Other negative changes

 No

218 (95.6%)

134 (97.8%)

352 (96.4%)

0.385

 Yes

10 (4.4%)

3 (2.2%)

13 (3.6%)

Social networks and relationships

Quality of adult friendships impacted

 Positive or no change

80 (35.6%)

97 (70.8%)

177 (48.9%)

< 0.001

 Negative change

145 (64.4%)

40 (29.2%)

185 (51.1%)

Social networks impacted

 Positive or no change

65 (28.9%)

90 (65.7%)

155 (42.8%)

< 0.001

 Negative change

160 (71.1%)

47 (34.3%)

207 (57.2%)

Marriage impacted

 Positive or no change

107 (48.0%)

110 (80.3%)

217 (60.3%)

< 0.001

 Negative change

116 (52.0%)

27 (19.7%)

143 (39.7%)

Size of friend network changed

 Positive or no change

102 (45.9%)

85 (62.0%)

187 (52.1%)

0.003

 Negative change

120 (54.1%)

52 (38.0%)

172 (47.9%)

Mental health

Worsened mental health

 No

50 (22.5%)

108 (78.8%)

158 (44.0%)

< 0.001

 Yes

172 (77.5%)

29 (21.2%)

201 (56.0%)

Frustration/anger towards loved one

 No

104 (46.2%)

126 (92.0%)

230 (63.5%)

< 0.001

 Yes

121 (53.8%)

11 (8.0%)

132 (36.5%)

Fears about child’s future or family’s future

 No

13 (5.8%)

44 (32.1%)

57 (15.8%)

< 0.001

 Yes

211 (94.2%)

93 (67.9%)

304 (84.2%)

Fears about misdiagnosis

 No

71 (32.1%)

113 (82.5%)

184 (51.4%)

< 0.001

 Yes

150 (67.9%)

24 (17.5%)

174 (48.6%)

Fears about access to treatment

 No

34 (15.4%)

75 (54.7%)

109 (30.4%)

< 0.001

 Yes

187 (84.6%)

62 (45.3%)

249 (69.6%)