Pelentsov Lemuel J, Laws Thomas A, Esterman Adrian J
School of Nursing and Midwifery, Division of Health Sciences, University of South Australia, City East Campus, GPO Box 2471, Adelaide, SA 5001, Australia.
School of Nursing and Midwifery, Division of Health Sciences, University of South Australia, City East Campus, GPO Box 2471, Adelaide, SA 5001, Australia.
Disabil Health J. 2015 Oct;8(4):475-91. doi: 10.1016/j.dhjo.2015.03.009. Epub 2015 Apr 7.
Parents caring for a child with a rare disease report unmet needs, the origins of which are varied and complex. Few studies have systematically attempted to identify the supportive care needs of parents with a child with a rare disease comprehensively. We have used the widely accepted Supportive Care Needs Framework (SCNF) as the structure for this review.
The purpose of the current review was to identify the supportive care needs of parents with a child with a rare disease, irrespective of condition.
We conducted a scoping study review comprising 29 studies (1990-2014) to identify and examine the research literature related to the supportive care needs of parents, and to compare these needs with the seven domains outlined in the SCNF.
Most common needs cited were social needs (72% of papers), followed by informational needs (65% of papers) and emotional needs (62% of papers), with the most common parental needs overall being information about their child's disease, emotional stress, guilt and uncertainty about their child's future health care needs, parents own caring responsibilities and the need for more general support.
A paucity of studies exists that explore the supportive care needs of parents of a child with a rare disease. The SCNF only partially reflects the breadth and type of needs of these parents, and a preliminary revised framework has been suggested. Further research is required in this area, particularly empirical research to amend or confirm the suggested new framework.
照顾患有罕见病孩子的父母报告了未得到满足的需求，其来源多样且复杂。很少有研究系统地全面尝试确定患有罕见病孩子的父母的支持性护理需求。我们使用广泛认可的支持性护理需求框架（SCNF）作为本次综述的结构。
本次综述的目的是确定患有罕见病孩子的父母的支持性护理需求，而不考虑具体病症。
我们进行了一项范围研究综述，涵盖29项研究（1990 - 2014年），以识别和审查与父母支持性护理需求相关的研究文献，并将这些需求与SCNF中概述的七个领域进行比较。
最常被提及的需求是社会需求（72%的论文），其次是信息需求（65%的论文）和情感需求（62%的论文），总体上父母最常见的需求是关于孩子疾病的信息、情感压力、对孩子未来医疗需求的内疚和不确定性、父母自身的护理责任以及对更多一般支持的需求。
探索患有罕见病孩子的父母的支持性护理需求的研究很少。SCNF仅部分反映了这些父母需求的广度和类型，并且已提出一个初步修订框架。该领域需要进一步研究，特别是实证研究以修正或确认所建议的新框架。
