"A monster that lives in our lives": experiences of caregivers of people with motor neuron disease and identifying avenues for support

Abstract

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 t..