This study aims to explore the roles and relationships of homecare workers who support people living with MND with complex care needs at home. With advances in health technologies, more people with MND can now live at home supported by equipment such as ventilators and feeding tubes. This increases the demands on family carers and often requires extra support from paid homecare workers. Homecare workers play a crucial role in helping families deliver complex care at home. However, we know little about how homecare workers carry out their responsibilities, the skills required, and how they work together with family carers and other healthcare professionals. 

This UK-wide qualitative multi-methods study will collect data across three concurrent workstreams (WS):

WS1:   Semi-structured interviews (n=40) with homecare workers with current or previous experience of supporting a person with MND with complex care needs (n=20) and key stakeholders involved in commissioning, co-ordinating and managing care packages along with MND multi-disciplinary team members (n=20). 

WS2:   Homecare worker diaries (n=up to 20): Homecare workers who currently support a person with MND with complex care needs will be invited to contribute to a minimum of eight guided diary entries over approximately two to eight weeks. 

WS3:   Secondary analysis of interview data from two previous studies involving people living with MND receiving complex interventions and their family carers (n=~50). 

The findings from this study will increase our understanding of the challenges and rewards of delivering complex homecare and the support needs of homecare workers. This may contribute to improving the recruitment, training, and retention of homecare workers. Findings will also provide insight into how communication and coordination of care among different professionals and services can be improved. Ultimately, better understanding of the roles and responsibilities of homecare workers could lead to higher quality care at home for people living with MND, prevent unnecessary hospital admissions, and increase support for family carers.