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

机译：患有罕见疾病的孩子的父母的支持性护理需求：在线调查的结果

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Background: Parents caring for a child affected by a rare disease have unmet needs, the origins of which are complex and varied. Our aim was to determine the supportive care needs of parents caring for a child with a rare disease.\ud\udMethods: An online survey was developed consisting of 45 questions (108 items) and separated into six domains. The survey included questions about perceived level of satisfaction with receiving care, experiences and needs of providing daily care, the impacts of disease on relationships, the emotional and psychological burdens of disease, and parents overall satisfaction with the support received.\ud\udResults: Three-hundred and one parents from Australia and New Zealand completed the survey; 91 % (n = 275/301) were mothers, with 132 distinct rare diseases being reported. Fifty-four percent (n = 140/259) of parents were dissatisfied with health professionals' level of knowledge and awareness of disease; 71 % (n = 130/183) of parents felt they received less support compared to other parents. Information regarding present (60 %, n = 146/240) and future services (72 %, n = 174/240) available for their child were considered important. Almost half of parents (45 %, n = 106/236) struggled financially, 38 % (n = 99/236) reduced their working hours and 34 % (n = 79/236) ceased paid employment. Forty-two percent (n = 99/223) of parents had no access to a disease specific support group, and 58 % (n = 134/230) stated that their number of friends had reduced since the birth of their child; 75 % (n = 173/230) had no contact with other parents with a child with a similar disease, and 46 % (n = 106/230) reported feeling socially isolated and desperately lonely. Most frequent emotions expressed by parents in the week prior to completing the survey were anxiety and fear (53 %, n = 119/223), anger and frustration (46 %, n = 103/223) and uncertainty (39 %, n = 88/223).\ud\udConclusion: This study is the first to develop an online survey specifically for use with parents to investigate their supportive care needs across a large and diverse group of rare diseases. The findings highlight that parents with a child with a rare disease have common unmet needs regardless of what disease their child has. Such information may allow health providers to improve child outcomes through improving parental supportive care.
机译：背景：照顾患有罕见疾病的孩子的父母的需求未得到满足，其根源复杂多样。我们的目的是确定照顾患有罕见疾病的孩子的父母的支持性护理需求。\ ud \ ud方法：开发了一个在线调查，该调查由45个问题（108个项目）组成，分为六个领域。该调查包括以下问题：对获得护理的感知满意度，提供日常护理的经验和需求，疾病对人际关系的影响，疾病的情感和心理负担以及父母对所获得支持的总体满意度。来自澳大利亚和新西兰的301位父母完成了调查。 91％（n = 275/301）是母亲，据报道有132种不同的罕见疾病。百分之五十四（n = 140/259）的父母不满意卫生专业人员对疾病的知识和了解； 71％（n = 130/183）的父母感到与其他父母相比，他们得到的支持较少。有关为孩子提供的当前（60％，n = 146/240）和未来服务（72％，n = 174/240）的信息被认为很重要。几乎一半的父母（45％，n = 106/236）财务困难，有38％（n = 99/236）减少了工作时间，有34％（n = 79/236）停止了有薪工作。有42％（n = 99/223）的父母无法获得针对疾病的支持小组；有58％（n = 134/230）的父母表示，自孩子出生以来，他们的朋友数量有所减少； 75％（n = 173/230）没有与患有类似疾病的孩子的其他父母接触，还有46％（n = 106/230）表示感到社交孤立和极度孤独。在完成调查前一周，父母最常表达的情绪是焦虑和恐惧（53％，n = 119/223），愤怒和沮丧（46％，n = 103/223）和不确定性（39％，n = 88/223）。结论：这项研究是第一个专门开发在线调查的研究，专门与父母一起使用，以调查他们对各种各样的稀有疾病的支持护理需求。研究结果表明，无论孩子患有哪种疾病，父母都对患有罕见疾病的孩子有共同的未满足需求。这些信息可以使卫生保健提供者通过改善父母的支持性照护来改善儿童的结局。

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