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Factors to consider for motor neurone disease carer intervention research: A narrative literature review

Published online by Cambridge University Press:  20 December 2016

Cathy Gluyas ,
Susan Mathers ,
Nicole Hennessy Anderson  and
Anna Ugalde
Cathy Gluyas*
Affiliation:
Statewide Progressive Neurological Diseases Service, Calvary Health Care–Bethlehem, Caulfield South, Victoria, Australia
Susan Mathers
Affiliation:
Statewide Progressive Neurological Diseases Service, Calvary Health Care–Bethlehem, Caulfield South, Victoria, Australia
Nicole Hennessy Anderson
Affiliation:
Deakin University, Geelong, Victoria, Australia Centre for Palliative Care, St. Vincent's Hospital, Melbourne, Victoria, Australia
Anna Ugalde
Affiliation:
Deakin University, Geelong, Victoria, Australia Cancer Council Victoria, Melbourne, Victoria, Australia
*
Address correspondence and reprint requests to Cathy Gluyas, Statewide Progressive Neurological Diseases Service, Calvary Health Care–Bethlehem, 476 Kooyong Road, Caulfield South, Victoria 3162, Australia. E-Mail: [email protected].
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Abstract

Objective:

The experience of caregiving in the context of motor neurone disease (MND) is extremely challenging. Over the past 15 years, quantitative and qualitative studies have delineated the psychosocial aspects of this experience, exploring its impact on caregivers' quality of life, rates of depression, distress, anxiety, and burden. Our paper aimed to provide an overview of the lived experience of MND caregivers, identifying the variables that can influence MND caregiver functioning that are relevant to the development of an intervention.

Method:

A narrative review was conducted, synthesizing the findings of literature retrieved from 2000 to early 2016.

Results:

A total of 37 articles were included in the review. The articles varied considerably in terms of methodology and quality. The main influential aspects reported and identified were factors pertaining to the patient, factors intrinsic to the caregiver, relationship factors, and social support factors.

Significance of Results:

There is evidence to support the fact that caregivers have poorer outcomes when they care for patients with a more severe clinical profile, poorer emotional health or neurobehavioral concerns, or when the caregivers themselves struggle with adaptive problem-solving and coping skills. The availability and use of social support are also likely to be important for caregiver psychosocial outcomes. Further investigation is required to clarify the influence of changes in the relationship with the patient. Significant factors affecting the caregiver experience are considered in relation to their amenability to psychosocial intervention. Recommendations are made regarding the optimal features of future psychosocial intervention research.

Keywords

CaregiversMotor neurone diseaseAmyotrophic lateral sclerosisDistressBurden
Type
Review Article
Information
Palliative & Supportive Care , Volume 15 , Issue 5 , October 2017 , pp. 600 - 608
Copyright
Copyright © Cambridge University Press 2016 

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