Table 2.
Parental reported needs across aspects of caring for a child with a rare disease
| Variables | n | (%) | 95 % CI |
|---|---|---|---|
| Parents receiving little or no support from (n = 262) | |||
| Government services (i.e., public hospitals) | 97 | (37.0) | 30.0–45.2 |
| Non-governmental agencies (i.e., support groups) | 88 | (33.6) | 26.9–41.4 |
| Family and friends | 78 | (29.8) | 23.5–37.2 |
| Parents dissatisfied or extremely dissatisfied with support from health professionals | |||
| Having a consistent team of health professionals taking overall responsibility for your child’s health (n = 251) | 65 | (25.9) | 20.0–33.0 |
| The overall support that you get from health professionals for your child (n = 257) | 61 | (23.7) | 18.2–30.5 |
| Feeling that you are part of a health care team looking after your child (n = 259) | 72 | (27.8) | 21.8–35.0 |
| How much health professionals know about your child's disease (n = 259) | 140 | (54.1) | 45.5–63.8 |
| Gaining a formal diagnosis for your child (n = 248) | 73 | (29.4) | 23.1–37.0 |
| Help with family planning (n = 173) | 81 | (46.8) | 37.2–58.2 |
| Parents in desperate need for information (n = 240) | |||
| Information about my child’s disease | 102 | (42.5) | 34.7–51.6 |
| Information on how my child will grow and develop | 134 | (55.8) | 46.8–66.1 |
| Information on how to manage my child’s behaviour | 85 | (35.4) | 28.3–43.8 |
| Information about services that are presently available for my child | 146 | (60.8) | 51.4–71.5 |
| Information about services my child might receive in the future | 174 | (72.5) | 62.1–84.1 |
| Parents in desperate need of support with | |||
| The educational needs of my child (n = 231) | 80 | (33.3) | 27.5–43.1 |
| Teaching my child about their disease (n = 218) | 49 | (20.4) | 16.6–29.7 |
| Explaining my child’s disease to his or her siblings (n = 224) | 39 | (16.3) | 12.4–23.8 |
| Explaining my child’s disease to my parents or relatives (n = 237) | 33 | (13.8) | 9.6–19.6 |
| Responding when friends, neighbours, or others ask questions about my child (n = 237) | 39 | (16.2) | 11.7-22.5 |
| Explaining my child’s disease to other children (n = 233) | 57 | (23.8) | 18.5-31.7 |
| Explaining my child's disease to his/her educator and school (n = 233) | 58 | (24.2) | 18.9–32.2 |
| Communicating with healthcare professionals (n = 238) | 40 | (16.7) | 12.0–22.9 |
| Parents in desperate need for access to respite services (n = 239) | |||
| Babysitters capable of caring for your child | 81 | (33.9) | 26.9–42.1 |
| Formal respite care providers capable of caring for your child | 84 | (35.1) | 28.0–43.5 |
| Day care program or preschool for your child | 49 | (20.5) | 15.2–27.1 |
| School that is able to care for your child | 85 | (35.6) | 28.4–44.0 |
| Parents in need of professional/expert support (n = 223) | |||
| Marriage counsellor | 44 | (19.7) | 14.3–26.5 |
| Psychological counsellor | 106 | (47.5) | 38.9–57.5 |
| Financial advisor | 71 | (31.8) | 24.9–40.2 |
| Social worker | 72 | (32.3) | 25.3–40.7 |
| Genetic counsellor (for family planning advice) | 107 | (34.5) | 39.3–58.0 |
All items are 5-point Likert scales dichotomised to the two categories of greatest need