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Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: Ascoping review

Title
Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: Ascoping review
Author
김정아
Keywords
amyotrophic lateral sclerosis; caregiver; health service needs; motor neuron disease; review; scoping review; supportive care
Issue Date
2017-07
Publisher
WILEY
Citation
JOURNAL OF CLINICAL NURSING, v. 26, no. 23-24, page. 4129-4152
Abstract
Aims and objectivesTo identify the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, categorise and summarise them into a Supportive Care Needs Framework and identify gaps in literature. BackgroundLittle is known about the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, and this subject has not previously been systemically reviewed. DesignScoping review. MethodsWe conducted a scoping review from the MEDLINE, EMBASE, CINAHL and Cochrane databases for the period January 2000-July 2016, using the following inclusion criteria: (i) written in English only, (ii) published in peer-reviewed journals, (iii) at least part of the research considered the supportive care needs perspective of amyotrophic lateral sclerosis/motor neuron disease patients or their caregivers and (iv) the population sample included patients of amyotrophic lateral sclerosis/motor neuron disease or their caregivers. ResultsThirty-seven articles were included. Our review shows that amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers' supportive care needs were mentioned across all seven domains of the Supportive Care Needs Framework. Most common were practical needs (n=24), followed by Informational needs (n=19), Social needs (n=18), Psychological needs (n=16), Physical needs (n=15), Emotional needs (n=13) and Spiritual needs (n=8). ConclusionFrom the perspectives of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, there is a significant need for more practical, social, informational, psychological, physical, emotional and spiritual support. Relevance to clinical practiceThe Supportive Care Needs Framework has potential utility in the development of patient-centred support services or healthcare policies and serves as an important base for further studies; especially, specific examples of each supportive care needs domain can guide in clinical settings when healthcare professionals provide multidisciplinary care to amyotrophic lateral sclerosis/motor neuron disease patients and individualised care.
URI
https://onlinelibrary.wiley.com/doi/abs/10.1111/jocn.13945https://repository.hanyang.ac.kr/handle/20.500.11754/114886
ISSN
0962-1067; 1365-2702
DOI
10.1111/jocn.13945
Appears in Collections:
COLLEGE OF NURSING[S](간호학부) > NURSING(간호학부) > Articles
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