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“A monster that lives in our lives”: experiences of caregivers of people with motor neuron disease and identifying avenues for support
  1. Nicole Hennessy Anderson1,2,
  2. Cathy Gluyas3,
  3. Susan Mathers4,
  4. Peter Hudson2,5 and
  5. Anna Ugalde1,6
  1. 1School of Nursing & Midwifery, Deakin University, Geelong, Victoria, Australia
  2. 2Centre for Palliative Care, St Vincent's Hospital Melbourne, Melbourne, Victoria, Australia
  3. 3Psychology Department, Calvary Health Care Bethlehem, Melbourne, Victoria, Australia
  4. 4Neurology Department, Calvary Health Care Bethlehem, Melbourne, Victoria, Australia
  5. 5Department of Palliative Care, Queen's University, Belfast, Ireland
  6. 6Cancer Information and Support Service, Cancer Council Victoria, Melbourne, Victoria, Australia
  1. Correspondence to Dr Anna Ugalde, School of Nursing & Midwifery, Deakin University, 1 Gheringhap Street, Geelong, VIC 3101, Australia a.ugalde{at}


Background A developing 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.

Aim This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.

Design A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.

Setting/participants Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.

Results 15 caregivers participated. 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.

Trial registration number ACTRN12615000120572, pre-results.

  • motor neuron disease
  • carers
  • amyotrophic lateral sclerosis
  • burden
  • qualitative

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