Lemuel J. Pelentsov|Andrea Fielder|Thomas A. Laws|Adrian Esterman
The supportive care needs of parents with a child with a rare disease: results of an online survey
University of South Australia|University of South Australia|Keele University|Australian Institute of Tropical Health and Medicine|James Cook University
parents caring child affected rare disease unmet needs origins complex varied aim determine supportive care needs parents caring child rare diseasean online survey developed consisting 45 questions 108 items separated six domains survey included questions perceived level satisfaction receiving care experiences needs providing daily care impacts disease relationships emotional psychological burdens disease parents overall satisfaction support receivedthreehundred one parents australia new zealand completed survey 91 n 275301 mothers 132 distinct rare diseases reported fiftyfour percent n 140259 parents dissatisfied health professionals level knowledge awareness disease 71 n 130183 parents felt received less support compared parents information regarding present 60 n 146240 future services 72 n 174240 available child considered important almost half parents 45 n 106236 struggled financially 38 n 99236 reduced working hours 34 n 79236 ceased paid employment fortytwo percent n 99223 parents access disease specific support group 58 n 134230 stated number friends reduced since birth child 75 n 173230 contact parents child similar disease 46 n 106230 reported feeling socially isolated desperately lonely frequent emotions expressed parents week prior completing survey anxiety fear 53 n 119223 anger frustration 46 n 103223 uncertainty 39 n 88223this study first develop online survey specifically use parents investigate supportive care needs across large diverse group rare diseases findings highlight parents child rare disease common unmet needs regardless disease child information may allow health providers improve child outcomes improving parental supportive care