Table 3 Comparison of English and Spanish language responses to Newborn and Infancy module items
From: Does the registry speak your language? A case study of the Global Angelman Syndrome Registry
Questions | Language | 1—Yes all the time | 2—Yes, most of the time | 3—Yes, some of the time | 4—Yes, rarely | 5—No, never | Unknown | Total | Chi square tests | ||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Newborn questions | n | % | n | % | n | % | n | % | n | % | n | % | N | ||
Were feeding difficulties experienced? | English | 35 | 33 | 29 | 27 | 19 | 18 | 8 | 8 | 15 | 14 | 0 | 0 | 106 | Χ2 (4, 159) = 8.347, p = .08 |
Spanish | 12 | 23 | 10 | 19 | 8 | 15 | 9 | 17 | 14 | 26 | 0 | 0 | 53 | ||
Was assistance used at any time in their infancy (eg lactation support, syringes, spooning in pumped milk)? | English | 18 | 19 | 21 | 22 | 18 | 19 | 9 | 10 | 28 | 30 | 0 | 0 | 94 | Χ2 (5, 137) = 4.279, p = .510 |
Spanish | 7 | 16 | 7 | 16 | 6 | 14 | 5 | 12 | 17 | 40 | 1 | 2 | 43 | ||
Was there refusal to nurse? | English | 19 | 20 | 9 | 10 | 24 | 26 | 7 | 8 | 29 | 31 | 5 | 5 | 93 | Χ2 (5, 133) = 0.622, p = .987 |
Spanish | 7 | 18 | 3 | 8 | 10 | 25 | 3 | 8 | 15 | 38 | 2 | 5 | 40 | ||
Could not latch? | English | 25 | 27 | 21 | 23 | 13 | 14 | 6 | 7 | 22 | 24 | 4 | 4 | 91 | Χ2 (4, 131) = 9.141, p = .104 |
Spanish | 6 | 15 | 5 | 13 | 8 | 20 | 8 | 20 | 10 | 25 | 3 | 8 | 40 | ||
Ineffective suck? | English | 33 | 36 | 19 | 21 | 16 | 17 | 6 | 7 | 14 | 15 | 4 | 4 | 92 | Χ2 (5, 132) = 1.113, p = .953 |
Spanish | 13 | 33 | 6 | 15 | 8 | 20 | 3 | 8 | 8 | 20 | 2 | 5 | 40 | ||
Was there biting? | English | 0 | 0 | 1 | 1 | 18 | 20 | 10 | 11 | 54 | 59 | 9 | 10 | 92 | Χ2 (5, 132) = 3.885, p = .566 |
Spanish | 1 | 3 | 1 | 3 | 6 | 15 | 5 | 13 | 25 | 63 | 2 | 5 | 40 | ||
Were they irritable in association with feeding? | English | 24 | 26 | 17 | 18 | 19 | 21 | 6 | 7 | 24 | 26 | 2 | 2 | 92 | Χ2 (5, 132) = 10.659, p = .059 |
Spanish | 4 | 10 | 4 | 10 | 10 | 25 | 2 | 5 | 20 | 50 | 0 | 0 | 40 | ||
Was there vomiting? | English | 20 | 19 | 27 | 26 | 15 | 14 | 19 | 18 | 23 | 22 | 1 | 1 | 105 | Χ2 (5, 156) = 4.471, p = .484 |
Spanish | 7 | 14 | 11 | 22 | 11 | 22 | 6 | 12 | 16 | 31 | 0 | 0 | 51 | ||
Was there arching? | English | 14 | 13 | 20 | 19 | 29 | 27 | 10 | 9 | 26 | 25 | 7 | 7 | 106 | Χ2 (5, 157) = 8.824, p = .116 |
Spanish | 4 | 8 | 7 | 14 | 9 | 18 | 3 | 6 | 24 | 47 | 4 | 8 | 51 | ||
Did they show excessive movements? | English | 16 | 15 | 15 | 14 | 27 | 25 | 9 | 8 | 32 | 30 | 7 | 7 | 106 | Χ2 (5, 157) = 8.558, p = .128 |
Spanish | 3 | 6 | 6 | 12 | 9 | 18 | 3 | 6 | 27 | 53 | 3 | 6 | 51 | ||
Was there difficulties maintaining or regulating proper body temperature? | English | 4 | 4 | 7 | 7 | 12 | 11 | 7 | 7 | 58 | 55 | 18 | 17 | 106 | Χ2 (5, 157) = 14.686, p = .012 |
Spanish | 0 | 0 | 2 | 4 | 9 | 18 | 2 | 4 | 38 | 75 | 0 | 0 | 51 | ||
Was there difficulty sleeping? | English | 43 | 44 | 13 | 13 | 18 | 18 | 8 | 8 | 16 | 16 | 0 | 0 | 98 | Χ2 (5, 149) = 6.226, p = .183 |
Spanish | 14 | 27 | 6 | 12 | 9 | 18 | 7 | 14 | 15 | 29 | 0 | 0 | 51 | ||
Infancy Questions | |||||||||||||||
Were they happy in the first 12 months of their life? | English | 31 | 29 | 55 | 51 | 17 | 16 | 3 | 3 | 0 | 0 | 1 | 1 | 107 | Χ2 (5, 162) = 3.271, p = .514 |
Spanish | 19 | 35 | 31 | 56 | 4 | 7 | 1 | 2 | 0 | 0 | 0 | 0 | 55 | ||
Were they placid in the first 12 months of their life? | English | 9 | 9 | 34 | 32 | 22 | 21 | 16 | 15 | 20 | 19 | 4 | 4 | 105 | Χ2 (5, 160) = 23.817, p = .001 |
Spanish | 18 | 33 | 23 | 42 | 8 | 15 | 3 | 5 | 3 | 5 | 0 | 0 | 55 | ||
Were they easy going in the first 12 months of their life? | English | 22 | 21 | 51 | 48 | 16 | 15 | 14 | 13 | 4 | 4 | 0 | 0 | 107 | Χ2 (5, 162) = 10.363, p = .035 |
Spanish | 16 | 29 | 19 | 35 | 9 | 16 | 3 | 5 | 8 | 15 | 0 | 0 | 55 | ||
Were they affectionate in the first 12 months of their life? | English | 22 | 21 | 48 | 45 | 20 | 19 | 6 | 6 | 9 | 8 | 1 | 1 | 106 | Χ2 (5, 161) = 9.012, p = .109 |
Spanish | 22 | 40 | 16 | 29 | 9 | 16 | 5 | 9 | 3 | 5 | 0 | 0 | 55 | ||
Were there any difficulties with suck/swallow? | English | 26 | 24 | 21 | 20 | 29 | 27 | 8 | 7 | 21 | 20 | 2 | 2 | 107 | Χ2 (5, 161) = 9.641, p = .086 |
Spanish | 9 | 17 | 10 | 19 | 9 | 17 | 4 | 7 | 22 | 41 | 0 | 0 | 54 | ||
Were there any difficulties with failure to gain weight? | English | 18 | 17 | 18 | 17 | 21 | 20 | 2 | 2 | 48 | 45 | 0 | 0 | 107 | Χ2 (4, 161) = 7.446, p = .114 |
Spanish | 7 | 13 | 9 | 17 | 7 | 13 | 6 | 11 | 25 | 46 | 0 | 0 | 54 | ||
Were there any reflux/gastro/oesophageal problems? | English | 38 | 36 | 26 | 24 | 16 | 15 | 14 | 13 | 11 | 10 | 2 | 2 | 107 | Χ2 (5, 161) = 21.802, p = .001 |
Spanish | 9 | 17 | 13 | 24 | 11 | 20 | 1 | 2 | 19 | 35 | 1 | 2 | 54 | ||
Were there any difficulties with transitioning to solid food? | English | 12 | 11 | 15 | 14 | 22 | 21 | 12 | 11 | 43 | 40 | 3 | 3 | 107 | Χ2 (5, 161) = 4.723, p = .451 |
Spanish | 8 | 15 | 6 | 11 | 7 | 13 | 10 | 19 | 23 | 43 | 0 | 0 | 54 | ||
Were there any difficulties with asthma/wheezing? | English | 3 | 3 | 2 | 2 | 13 | 12 | 9 | 8 | 79 | 74 | 1 | 1 | 107 | Χ2 (5, 161) = 3.908, p = .563 |
Spanish | 0 | 0 | 3 | 6 | 5 | 9 | 5 | 9 | 41 | 76 | 0 | 0 | 54 | ||
Were there any difficulties with coughing? | English | 1 | 1 | 5 | 5 | 17 | 16 | 17 | 16 | 65 | 61 | 1 | 1 | 106 | Χ2 (5, 160) = 0.968, p = .965 |
Spanish | 1 | 2 | 2 | 4 | 8 | 15 | 8 | 15 | 35 | 65 | 0 | 0 | 54 | ||
Were there any difficulties with pneumonia? | English | 1 | 1 | 0 | 0 | 9 | 8 | 11 | 10 | 86 | 80 | 0 | 0 | 107 | Χ2 (5, 161) = 4.268, p = .234 |
Spanish | 0 | 0 | 0 | 0 | 5 | 9 | 1 | 2 | 48 | 89 | 0 | 0 | 54 | ||
Were there any difficulties with bronchitis? | English | 1 | 1 | 1 | 1 | 12 | 11 | 9 | 8 | 84 | 79 | 0 | 0 | 107 | Χ2 (5, 161) = 3.505, p = .477 |
Spanish | 1 | 2 | 0 | 0 | 7 | 13 | 9 | 17 | 37 | 69 | 0 | 0 | 54 | ||
Was there difficulty sleeping? | English | 38 | 37 | 19 | 19 | 29 | 28 | 8 | 8 | 8 | 8 | 0 | 0 | 102 | Χ2 (4, 156) = 6.111, p = .191 |
Spanish | 14 | 26 | 8 | 15 | 15 | 28 | 7 | 13 | 10 | 19 | 0 | 0 | 54 | ||