Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: Ascoping review
- Authors
- Oh, Juyeon; Kim, Jung A.
- Issue Date
- Dec-2017
- Publisher
- WILEY
- Keywords
- amyotrophic lateral sclerosis; caregiver; health service needs; motor neuron disease; review; scoping review; supportive care
- Citation
- JOURNAL OF CLINICAL NURSING, v.26, no.23-24, pp.4129 - 4152
- Indexed
- SCIE
SSCI
SCOPUS
- Journal Title
- JOURNAL OF CLINICAL NURSING
- Volume
- 26
- Number
- 23-24
- Start Page
- 4129
- End Page
- 4152
- URI
- https://scholarworks.bwise.kr/hanyang/handle/2021.sw.hanyang/151066
- DOI
- 10.1111/jocn.13945
- ISSN
- 0962-1067
- Abstract
- Aims and objectives
To 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.
Background
Little 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.
Design
Scoping review.
Methods
We 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.
Results
Thirty-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).
Conclusion
From 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 practice
The 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.
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