With advances in healthcare technologies, more people with MND are now able to live at home supported by equipment such as ventilators and feeding tubes. Technology alone, however, is not the entire story. Homecare workers play a critical role in providing personal care and emotional support, as well as respite for family caregivers. Homecare workers are paid support workers who provide care to people in their homes and help with day-to-day activities like personal care and household tasks.
Yet little is known about how homecare workers carry out their responsibilities, the skills required, the impact on their own well-being and how they work together with family carers and other healthcare professionals.
This study, led by Dr Eleanor Wilson (pictured left) at the University of Nottingham, seeks to address these gaps. It aims to explore the role of homecare workers in providing care for those with complex care needs, such as ventilation. It aims to identify ways and offer solutions to improve outcomes for both people with MND and their families.
This project developed following multiple conversations we had with people with MND and their families. Homecare workers seemed to be so integral to well-being and care, but we don’t really know anything about what it is like to be providing this kind of care, often with complex equipment, in the home. So that’s what we wanted to find out.
Dr Eleanor Wilson, project lead
The current picture
High quality, consistent support from trained homecare workers can prevent hospital admissions and enable people with MND to retain choice over their use of interventions and place of care. However, there is a shortage of skilled homecare workers in the UK. This lack of support can significantly impact the quality of life for people with MND and put extra stress on family carers.
To provide the best care, we need to fully understand the role of homecare workers. We know little about the specific tasks performed, how homecare workers collaborate with other healthcare professionals or how they work with family caregivers. We also need to know how supported they are themselves as previous research has found they can face challenges, such as inadequate training and emotional strain.
Project goals
The key aim of this project is to explore the roles, responsibilities and care relationships of homecare workers who support people living with MND to manage their complex care at home.
The study will use interviews, diaries and analysis of data from previous studies to address five main goals:
- To understand the practical tasks homecare workers perform, the level of complexity of those tasks and the skills needed to carry them out
- To explore the role of homecare workers in providing emotional, social and relational support to people with MND and family carers
- To examine the relationships between homecare workers and professionals within the multi-disciplinary team that manages the care of people with MND
- To understand the training, education and support needs of homecare workers
- To develop clear, practical guidance on what good homecare really looks like – as seen through the eyes of people with MND, family carers, homecare workers and healthcare professionals.
How will this be done?
To gather all the relevant information, the work has been split into three workstreams.
Workstream 1
The team will carry out 40 semi-structured interviews. These will be with 20 homecare workers and another 20 key stakeholders – these are people who are well acquainted with homecare, such as commissioning board members, care coordinators and multidisciplinary team members.
The purpose of these interviews is to shed light on the roles, responsibilities and care relationships of homecare workers supporting the complex care needs of people living with MND.
Workstream 2
Homecare workers will be invited to record their experiences, of delivering care, in a diary.
The diary will be guided and reflexive, with prompts to help homecare workers record their thoughts, feelings and reflections. This will give researchers a window into the day-to-day experiences of providing care to people with MND and complex care needs. It also helps track how homecare workers views and routines may evolve over time.
Workstream 3
The researchers will analyse interview data from two previous studies involving people living with MND and their family carers.
This analysis will be done on two previous care projects carried out by the Nottingham research group that previously investigated the use of ventilation at the end of life and living with tracheostomy ventilation. Both data sets contain a rich source of information on the experiences of homecare workers.
This data will give insight into the experiences of people living with MND and their families when homecare workers are involved to support more complex care such as ventilation, feeding tubes and suction. The researchers believe the data will illustrate the complexity of the relationships between homecare workers and families, the substantial benefits good homecare can bring, along with the challenges faced by families.
Progress so far
The project started in July 2024 and will run for 30 months. To date Eleanor and her team have:
- interviewed 11/20 homecare workers with experience of working with someone with MND who has complex care at home (workstream 1)
- interviewed 10/20 key stakeholders (workstream 1)
- engaged 2/20 homecare workers to keep a diary of their daily work and experiences (workstream 2)
- started analysing the data gathered during two previous projects (workstream 3).
RELATED POST
Blog | 19 January 2024 | Eleanor Green
Highlights from the poster sessions at the 34th International Symposium
Anticipated impact
The output from this research will contribute evidence to improve the commissioning, recruitment, training and retention of this vital workforce. It will also lead to a higher quality of care at home for people with MND, prevent unnecessary hospital admissions, and increase support for family carers.
Can you help?
The study is actively recruiting homecare workers with current or previous experience in supporting people living with MND with complex care needs. If this is you and you’d like more information and to take part, please visit: Complex Homecare in MND | MND Association
All homecare workers who take part in the study will receive a £25 voucher.
Acknowledgements
The CHiMND study is funded by the MND Association with generous support from the Prowting Charitable Trust.
