Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

Samar M Aoun; Paul A Cafarella; Anne Hogden; Geoff Thomas; Leanne Jiang; Robert Edis

doi:10.1177/26323524211009537

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

Palliat Care Soc Pract. 2021 Apr 22:15:26323524211009537. doi: 10.1177/26323524211009537. eCollection 2021.

Authors

Samar M Aoun¹, Paul A Cafarella², Anne Hogden³, Geoff Thomas⁴, Leanne Jiang⁵, Robert Edis⁶

Affiliations

¹ Public Health Palliative Care Unit, School of Psychology and Public Health, La Trobe University, Melbourne, VIC 3086, Australia.
² Department of Respiratory Medicine, Flinders Medical Centre, Bedford Park, SA, Australia; School of Psychology, Faculty of Health and Medical Sciences, The University of Adelaide, Adelaide, SA, Australia; College of Nursing and Health Sciences, Flinders University, Bedford Park, SA, Australia.
³ Australian Institute of Health Service Management, College of Business and Economics, University of Tasmania, Sydney, NSW, Australia.
⁴ Thomas MND Research Group, Adelaide, SA, Australia; Consumer Advocate and Chair; MND Association in South Australia, Mile End, SA, Australia.
⁵ Perron Institute for Neurological and Translational Science, Perth, WA, Australia; Public Health Palliative Care Unit, School of Psychology and Public Health, La Trobe University, Melbourne, VIC, Australia.
⁶ Department of Neurology, Sir Charles Gairdner Hospital, Perth, WA, Australia.

Abstract

Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown.

Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care.

Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used.

Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas.

Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care.

Keywords: Motor Neurone Disease Associations; bereavement support; consumer perspective; emotional support; end-of-life care; family caregivers; motor neurone disease; motor neurone disease advisors; practical support; public health approach.