The all-encompassing nature of motor neuron disease caregiving: a qualitative study of Australian caregivers.

Abstract

Caregivers of people living with motor neuron disease (plwMND) experience high levels of burden. This study sought to explore the burdens and challenges caregivers faced in their caregiving roles through qualitative investigations of caregiver experiences, to assist in identifying caregivers' priorities for change and improving current caregiving circumstances. The experiences of 12 caregivers of plwMND were explored using a qualitative descriptive methodology. All participants took part in semi-structured interviews, and interview transcripts were analysed <i>via</i> content analysis. Themes developed from the interviews highlighted the complex, interconnected and all-encompassing nature of MND caregiving. This was described across five themes: (1) "It begins before diagnosis," (2) "The relentlessness of care," (3) "Traversing the MND health care and support landscape," (4) "Changes to social connectivity," and (5) "Caregiver well-being." This study highlights Australian caregivers' perspectives on the burden and challenges they face in their roles as caregivers for plwMND. Insights suggested that the MND caregiving role is highly interconnected and pervasive, and caregivers report that they are not always receiving the level of care and support that they and their plwMND require. System-level change that embraces more personalised, integrated, multi-disciplinary models of care for MND is likely to strengthen coordinated access to services and elevate the role of informal caregivers within care teams. Improving caregiver circumstances, support, and well-being could potentially lead to better outcomes for both caregivers and those they care for.