title: The supportive care needs of parents caring for a child with a rare disease: A scoping review.
abstract: BACKGROUND
  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.
  
  
  OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: School of Nursing and Midwifery, Division of Health Sciences, University of South Australia, City East Campus, GPO Box 2471, Adelaide, SA 5001, Australia. Electronic address: lemuel.pelentsov@unisa.edu.au.
authors.forename: Lemuel J
authors.initials: LJ
authors.lastname: Pelentsov
authors.affiliation: School of Nursing and Midwifery, Division of Health Sciences, University of South Australia, City East Campus, GPO Box 2471, Adelaide, SA 5001, Australia.
authors.forename: Thomas A
authors.initials: TA
authors.lastname: Laws
authors.affiliation: School of Nursing and Midwifery, Division of Health Sciences, University of South Australia, City East Campus, GPO Box 2471, Adelaide, SA 5001, Australia; Sansom Institute of Health Service Research, University of South Australia, Australia; Centre for Chronic Disease Prevention, James Cook University, Cairns, QLD, Australia.
authors.forename: Adrian J
authors.initials: AJ
authors.lastname: Esterman
mesh_terms: D017028:Caregivers / Q000523:psychology; D002648:Child; D019988:Children with Disabilities; D006801:Humans; D057226:Information Seeking Behavior; D020380:Needs Assessment; D010290:Parents / Q000523:psychology; D035583:Rare Diseases; D012944:Social Support; D013315:Stress, Psychological
keywords: Framework; Impact; Parents; Rare diseases; Supportive care needs