TY - JOUR
T1 - Why and how the work of Motor Neurone Disease Associations matters before and during bereavement
T2 - a consumer perspective
AU - Aoun, Samar M.
AU - Cafarella, Paul A.
AU - Hogden, Anne
AU - Thomas, Geoff
AU - Jiang, Leanne
AU - Edis, Robert
N1 - Funding Information:
The authors disclosed receipt of the following financial support for the research, authorship, and publication of this article: This work was financially supported by MND Research Australia-MSWA grant. The authors are grateful for the cooperation and assistance of the MND Associations and for the bereaved families who agreed to complete the survey, especially considering their difficult circumstances.
Funding Information:
The authors disclosed receipt of the following financial support for the research, authorship, and publication of this article: This work was financially supported by MND Research Australia-MSWA grant. The authors are grateful for the cooperation and assistance of the MND Associations and for the bereaved families who agreed to complete the survey, especially considering their difficult circumstances.
Publisher Copyright:
© The Author(s), 2021.
PY - 2021/4/22
Y1 - 2021/4/22
N2 - 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.
AB - 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.
KW - bereavement support
KW - consumer perspective
KW - emotional support
KW - end-of-life care
KW - family caregivers
KW - motor neurone disease
KW - motor neurone disease advisors
KW - Motor Neurone Disease Associations
KW - practical support
KW - public health approach
UR - http://www.scopus.com/inward/record.url?scp=85104880730&partnerID=8YFLogxK
U2 - 10.1177/26323524211009537
DO - 10.1177/26323524211009537
M3 - Article
C2 - 34104885
AN - SCOPUS:85104880730
SN - 2632-3524
VL - 15
JO - Palliative Care and Social Practice
JF - Palliative Care and Social Practice
ER -