A 10-year literature review of family caregiving for motor neurone disease:                                                                                                                         Moving from caregiver burden studies to palliative care interventions

1. Samar M Aoun
   1. Curtin University, Perth, WA, Australia
2. Brenda Bentley
   1. Curtin University, Perth, WA, Australia
3. Laura Funk
   1. University of Manitoba, Winnipeg, MB, Canada
4. Chris Toye
   1. Curtin University, Perth, WA, Australia
5. Gunn Grande
   1. University of Manchester, Manchester, UK
6. Kelli J Stajduhar
   1. University of Victoria, Victoria, BC, Canada

1. Samar Aoun, The Western Australian Centre for Cancer and Palliative Care, Curtin Health Innovation Research Institute, Curtin University, GPO Box U1987 Perth, WA 6845, Australia. Email: s.aoun@curtin.edu.au

Abstract

Background: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness.

Aim: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group.

Design: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000–April 2011. Fifty-nine studies met the inclusion criteria.

Results: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care.

Conclusions: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

• Motor neurone disease
• family caregiving
• palliative care
• amyotrophic lateral sclerosis
• caregiver burden
• supportive care

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