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J Clin Nurs. 2017 Dec;26(23-24):4129-4152. doi: 10.1111/jocn.13945. Epub 2017 Aug 31.

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

Oh J1,2, Kim JA1.

Author information

1
Division of Nursing, Hanyang University, Seoul, Korea.
2
Cell therapy Center for Intractable Disorders, Hanyang University Hospital, Seoul, Korea.

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.

KEYWORDS:

amyotrophic lateral sclerosis; caregiver; health service needs; motor neuron disease; review; scoping review; supportive care

PMID:
28681543
DOI:
10.1111/jocn.13945
[Indexed for MEDLINE]

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