The supportive care needs of parents caring for a child with a rare disease: a scoping review

Pelentsov, Lemuel J., Laws, Thomas A., and Esterman, Adrian J. (2015) The supportive care needs of parents caring for a child with a rare disease: a scoping review. Disability and Health Journal, 8 (4). pp. 475-491.

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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.

Conclusion: 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.

Item ID: 42004
Item Type: Article (Research - C1)
ISSN: 1876-7583
Keywords: parents, supportive care needs, rare diseases, impact, framework
Additional Information:

© 2015 Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

Date Deposited: 08 Dec 2015 18:31
FoR Codes: 11 MEDICAL AND HEALTH SCIENCES > 1117 Public Health and Health Services > 111799 Public Health and Health Services not elsewhere classified @ 100%
SEO Codes: 92 HEALTH > 9299 Other Health > 929999 Health not elsewhere classified @ 100%
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