Aim
A growing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited. This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.
Outcomes
Fifteen caregivers participated in this study Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.
Conclusions: Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.
Project Team
- Dr Anna Ugalde, Deakin University, Melbourne
- Prof Peter Hudson, Centre for Palliative Care, St Vincent’s Hospital Melbourne
- Ms Cathy Gluyas, Psychology Department, Calvary Health Care Bethlehem, Melbourne
- Ms Susan Mathers, Neurology Department, Calvary Health Care Bethlehem, Melbourne
Key Contact
Peter Hudson
e: phudson@unimelb.edu.au
Funding Source
Bethlehem Griffiths Research Foundation
Key Publications
Anderson NH, Gluyas C, Mathers S, Hudson P, Ugalde A. (E-Pub 28 April 2016). A monster that lives in our lives: experiences of caregivers of people with motor neuron disease and identifying avenues for support. BMJ Supportive & Palliative Care. doi: 10.1136/bmjspcare-2015-001057.