SUPPORTED

We know little about the skills and support homecare workers need to provide care to people with advanced illness approaching the last months of life. Homecare workers support the person and their family, working alongside other health and social care providers. However, they are often poorly trained and supported themselves.

Despite their critical role, little is known about the experiences of homecare workers, their training/skills needs and the best ways to support them to provide sustainable, quality, integrated care.

The aim of the SUPPORTED study was to provide insights into their role in providing care for people with advanced illness approaching the last months of life, and to develop the content of training resources that address these needs.

We aimed to better understand the homecare worker role, experiences, and challenges, by talking to homecare workers themselves, as well as homecare clients, their family and friends providing care (‘carers’), and health and social care staff.

We aimed to identify good practice, training gaps and needs for homecare workers and ways to include and support them within the wider care team.

Work Package 1

Policy document review

We showed that few policy documents recognised the role homecare workers have in the provision of end-of-life (EoL) homecare.

• In general, highly relevant and detailed policy recommendations from 2010 have not been included in current policy or translated into practice.
• There was some recognition that homecare workers need to receive education and training in end-of-life care, but there are few details given about the minimum content and standards, or delivery models.

Interview study

Homecare workers told us the following about their experience of providing end-of-life homecare:

• Homecare workers provide skilled, flexible support which is carefully tailored and adjusted as individuals’ needs change, ensuring the delivery of personalised and responsive care.
• They work with multiple practitioners to support people at end-of-life but are often marginalised and isolated within the wider care team. Their role is often poorly understood, recognised and undervalued by healthcare practitioners; perceived as ‘just a homecare worker’.
• However, they often develop close relationships and in-depth knowledge of individuals; well placed to observe early signs of deterioration and change, and can inform the care provided by the wider care team.
• Homecare workers view supporting people at end-of-life as a privilege, but experience substantial emotional demands including grief when those they support die.
• Many homecare workers are unseen and unheard; not included in communication or collaborative working with other health and social care practitioners.
• Homecare workers routinely have no access to NHS or adult social care colleagues, and can’t access patient records, notes or assessments.

We identified the following training and support needs for homecare workers:

• Preparation and support to deal with death and dying in their practice, including practical (what to do), emotional and psychological aspects of caring for people who are dying.
• Understand what to expect, and changes in care priorities as someone approaches the end of life.
• Know how to access appropriate and timely support in changing situations, and how to manage problems commonly seen at end of life such as pain, breathlessness, or delirium.
• Have skills for specific tasks commonly seen at end of life such as mouth care.
• Understand how religion, culture and death may impact on the care they provide.
• Communication skills for challenging conversations.

Messages for policy and practice

1. National policy guidance around end-of-life care needs should:
   • include the social homecare workforce
   • stipulate minimum end-of-life care training requirements (formalised and accredited training)
   • integrate this support and training into routine job descriptions and as part of the working day
2. Homecare workers are crucial providers of end-of-life homecare, providing the bulk of day-to-day care, and holding important information about their health status
   • The homecare workforce should be recognised within end-of-life care policy and amongst the wider multidisciplinary team
   • The emotional demands on homecare workers should be recognised in policy and practice and supported.
3. Homecare workers need training and education to provide quality end-of-life care
   • Homecare workers should be given mandated time during their usual working hours to access high quality end-of-life training
   • End of life training and support of homecare workers should be recognised in policy and guidance
   • There should be better inclusion of homecare workforce in the health and social community network of care providing end-of-life care
4. Homecare workers need to be better integrated into the wider social and healthcare workforce team
   • People dying at home are not receiving the best care available because those involved are not working together; this division within end-of-life care provision needs to be addressed
   • We need change within institutions, organisations, and working cultures so practitioners are trained to know the benefits of working alongside homecare workers and have the structures (e.g., common documentation) in place to do so
   • We need everyone involved in end-of-life care to understand the crucial role of homecare workers, how their knowledge and expertise can improve care when we all work together