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

摘要: Parents caring for a child affected by rare disease have unmet needs, the origins of which are complex and varied. Our aim was to determine supportive care needs parents with disease. An online survey developed consisting 45 questions (108 items) separated into six domains. The included about perceived level satisfaction receiving care, experiences providing daily impacts on relationships, emotional psychological burdens disease, overall support received. Three-hundred one from Australia New Zealand completed survey; 91 % (n = 275/301) were mothers, 132 distinct diseases being reported. Fifty-four percent (n = 140/259) dissatisfied health professionals’ knowledge awareness disease; 71 % (n = 130/183) felt they received less compared other parents. Information regarding present (60 %, n = 146/240) future services (72 %, n = 174/240) available their considered important. Almost half (45 %, n = 106/236) struggled financially, 38 % (n = 99/236) reduced working hours 34 % (n = 79/236) ceased paid employment. Forty-two (n = 99/223) had no access specific group, 58 % (n = 134/230) stated that number friends since birth child; 75 % (n = 173/230) contact similar 46 % (n = 106/230) reported feeling socially isolated desperately lonely. Most frequent emotions expressed in week prior completing anxiety fear (53 %, n = 119/223), anger frustration (46 %, n = 103/223) uncertainty (39 %, n = 88/223). This study is first develop an specifically use investigate across large diverse group diseases. findings highlight common regardless what has. Such information may allow providers improve outcomes through improving parental care.