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Table 2 Parental reported needs across aspects of caring for a child with a rare disease

From: The supportive care needs of parents with a child with a rare disease: results of an online survey

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
  1. All items are 5-point Likert scales dichotomised to the two categories of greatest need