Table 2.
Total mean (SD) parent ratings for informational and emotional support needs and by comparison groups.
| All parents | Newborn screening | Education level | Rural or immunology desert | ||||
|---|---|---|---|---|---|---|---|
| Total (n = 76) | Yes (n = 34) | No (n = 42) | Less (n = 36) | More (n = 40) | Yes (n = 5) | No (n = 71) | |
| Informational Needs | |||||||
| Understanding newborn screening results | 1.49 (0.81) | 1.74 (0.57) | 1.29 (0.92)* | 1.42 (0.84) | 1.55 (0.78) | 1.60 (0.89) | 1.48 (0.81) |
| Understanding specific type of child's SCID | 1.75 (0.59) | 1.79 (0.54) | 1.71 (0.64) | 1.69 (0.67) | 1.80 (0.52) | 1.80 (0.45) | 1.75 (0.60) |
| Understanding what to expect across SCID lifespan | 1.89 (0.39) | 1.94 (0.34) | 1.86 (0.42) | 1.83 (0.51) | 1.95 (0.22) | 2.00 (0.00) | 1.89 (0.40)* |
| Understanding all available treatment options | 1.91 (0.37) | 1.97 (0.17) | 1.86 (0.47) | 1.89 (0.40) | 1.93 (0.35) | 2.00 (0.00) | 1.90 (0.38)* |
| Knowing where to access specialists | 1.79 (0.50) | 1.76 (0.50) | 1.81 (0.51) | 1.78 (0.59) | 1.80 (0.41) | 2.00 (0.00) | 1.77 (0.51)*** |
| Knowing what to expect during treatment and hospital stay | 1.87 (0.44) | 1.91 (0.29) | 1.83 (0.54) | 1.92 (0.37) | 1.83 (0.50) | 2.00 (0.00) | 1.86 (0.46)* |
| Understanding managing treatment side-effects | 1.72 (0.53) | 1.74 (0.51) | 1.71 (0.55) | 1.81 (0.52) | 1.65 (0.53) | 2.00 (0.00) | 1.70 (0.54)*** |
| Knowing how to keep child healthy after treatment | 1.83 (0.41) | 1.82 (0.39) | 1.83 (0.44) | 1.81 (0.47) | 1.85 (0.36) | 1.80 (0.45) | 1.83 (0.41) |
| Knowing where to seek financial assistance | 1.58 (0.62) | 1.47 (0.61) | 1.67 (0.61) | 1.69 (0.62) | 1.48 (0.60) | 1.60 (0.89) | 1.58 (0.60) |
| Knowing how family can adapt | 1.64 (0.53) | 1.68 (0.47) | 1.62 (0.58) | 1.61 (0.60) | 1.68 (0.47) | 1.80 (0.45) | 1.63 (0.54) |
| Understanding the chance of having another child with SCID | 1.45 (0.76) | 1.56 (0.75) | 1.36 (0.76) | 1.72 (0.61) | 1.20 (0.79)** | 1.40 (0.89) | 1.45 (0.75) |
| Understanding alternative methods of having another child | 1.05 (0.85) | 1.26 (0.79) | 0.88 (0.86)* | 1.08 (0.87) | 1.03 (0.83) | 1.40 (0.89) | 1.03 (0.84) |
| Knowing how to educate family and friends about SCID | 1.58 (0.85) | 1.53 (0.61) | 1.62 (0.62) | 1.67 (0.63) | 1.50 (0.60) | 1.80 (0.45) | 1.56 (0.63) |
| Knowing how to talk to my other children about SCID | 0.96 (0.86) | 0.97 (0.87) | 0.95 (0.85) | 1.25 (0.81) | 0.70 (0.82)** | 1.00 (1.00) | 0.96 (0.85) |
| Knowing how to educate hospital staff about SCID | 1.49 (0.66) | 1.35 (0.65) | 1.60 (0.66) | 1.47 (0.77) | 1.50 (0.55) | 1.60 (0.55) | 1.48 (0.67) |
| Knowing how to educate my child's PCP about SCID | 1.47 (0.70) | 1.38 (0.70) | 1.55 (0.71) | 1.56 (0.73) | 1.40 (0.67) | 1.80 (0.45) | 1.45 (0.71) |
| Emotional support needs | |||||||
| Opportunity to talk to other families | 1.76 (0.49) | 1.79 (0.48) | 1.74 (0.50) | 1.75 (0.50) | 1.78 (0.48) | 2.00 (0.00) | 1.75 (0.50)*** |
| Dealing with uncertainty about child's future | 1.79 (0.50) | 1.94 (0.24) | 1.67 (0.61)* | 1.69 (0.58) | 1.88 (0.40) | 2.00 (0.00) | 1.77 (0.51)*** |
| Managing my emotions as parent/caregiver | 1.70 (0.65) | 1.85 (0.44) | 1.57 (0.77)* | 1.72 (0.66) | 1.68 (0.66) | 2.00 (0.00) | 1.68 (0.67)*** |
| Understanding importance of self-care | 1.59 (0.61) | 1.68 (0.53) | 1.52 (0.67) | 1.58 (0.65) | 1.60 (0.59) | 2.00 (0.00) | 1.56 (0.63)*** |
| Getting support needed from family or friends | 1.57 (0.62) | 1.56 (0.56) | 1.57 (0.67) | 1.69 (0.58) | 1.45 (0.64) | 1.80 (0.45) | 1.55 (0.63) |
| Managing changes in relationship with partner | 1.37 (0.78) | 1.44 (0.70) | 1.31 (0.84) | 1.39 (0.80) | 1.35 (0.77) | 2.00 (0.00) | 1.32 (0.79)*** |
| Managing changes in relationship with other children | 0.85 (0.91) | 0.91 (0.93) | 0.80 (0.90) | 1.17 (0.92) | 0.58 (0.81)** | 1.20 (1.10) | 0.83 (0.90) |
| Managing changes in relationship with extended family | 1.05 (0.79) | 1.03 (0.80) | 1.07 (0.79) | 1.08 (0.84) | 1.03 (0.74) | 1.60 (0.55) | 1.01 (0.79) |
| Having access to professional counseling | 1.32 (0.77) | 1.38 (0.70) | 1.26 (0.83) | 1.22 (0.87) | 1.40 (0.67) | 1.80 (0.45) | 1.28 (0.78) |
| Having access to professional organizations knowledgeable about SCID | 1.74 (0.53) | 1.76 (0.50) | 1.71 (0.55) | 1.61 (0.64) | 1.85 (0.36) | 2.00 (0.00) | 1.72 (0.54)*** |
0, Not a need; 1, A small need; 2, A large need.
*
p < 0.05,
**
p < 0.01,
***
p < 0.001.