A QUALITATIVE EXPLORATION OF MND FAMILY CAREGIVERS’ EXPERIENCES OF THE PALLIATIVE CARE KEY WORKER

Background: In the United Kingdom (UK), the district nurse is the palliative care keyworker (PCKW) and is responsible for navigating and coordinating palliative care in the community. Limited research has explored family caregivers’ perspectives of this role.
Aims: To explore the experience of family caregivers (active and bereaved) of patients with Motor Neurone Disease of the palliative care key worker.
Methods: A qualitative exploratory design, with purposive sampling was used to recruit 6 family caregivers from a national charity. Interviews were transcribed and underwent manual thematic analysis.
Findings: Three themes included the value of the PCKW for caregivers, models of care and uncoordinated care. While the concept was supported, access and implementation was unstandardised which contributed to disparities in care.
Conclusion: Further research is needed to support the keyworker in providing more convenient and integrated care. Efforts must also address improving caregivers’ access to support.