A guide to using the volunteering and end-of-life care toolkit

Professor Sheila Payne is a health psychologist with a background in nursing.  She has a long track-record in palliative care research and scholarship.  Her research focuses on palliative care for older people.

We recently developed Volunteering and end-of-life care: An evidence-based toolkit to address the problem of supporting people with advanced illness, and their families.

The ‘end-of-life’ period, which may last for weeks, months or even years, is a difficult time for many people. Typically, people experience changes in health and reduction in ability in what they can do for themselves. This, combined with distressing feelings of uncertainty about the future, can leave people feeling very alone and isolated.

Often families become involved in providing care, but they may lack knowledge on how best to give support or access appropriate services. Health and social care services may be excellent, but they are often very busy and overstretched.

However, volunteers can provide compassionate and flexible care. This can be as simple as doing basic but important things such as practical help with shopping, or taking time for a leisurely chat over a coffee. The toolkit offers a short, easy to read, practical guide to help volunteer services improve the use of the skills and attributes that volunteers bring.

How we developed the toolkit

A team of experienced researchers from the International Observatory on End of Life Care, Lancaster University, and the Institute for Volunteering Research (part of NCVO) developed the toolkit. To do this we worked closely with volunteers, their managers, older people and their family carers.

We started with a research study, called a wait-list trial, where people with advanced disease were randomly given a volunteer immediately, or they waited four weeks before being given a volunteer. We wanted to know if having access to a volunteer service immediately made a difference to their welfare and feelings of isolation.

The research showed that having a volunteer helped people with physical symptoms, especially by slowing the decline in their health, and had greater impact for those who had most needs.

We also did a number of interviews with patients and families to understand more about their experiences of having a volunteer to help them.  They mentioned that it was especially helpful to have someone to take them out, such as to the library or a café.  Some liked the opportunity to talk to a person who was outside their family and therefore less emotionally involved.

After carefully looking at all the outcomes of our study, we held a meeting with a group of people who helped us to identify what was most important to share with others.  This was the foundation of the toolkit.

Using the toolkit

A good way to get started with the toolkit is to just dip in. Start with a topic that is of most relevance to you and your service such as ‘recruitment’ (page 12) or ‘training’ (page 14). Each topic has some key pointers, with a list of resources that you can explore further. Most importantly, there are some real examples of what works, taken from conversations with volunteers, managers and others who have developed these services.

You could also use a specific topic to start a discussion with your team or during a training event.  You might also find it helpful as a way to explain to senior managers or trustees, how to make changes in your service or even for explaining the significance of what you currently do. We have enjoyed producing the ‘toolkit’ and we would love to hear from you on what you found helpful and what we need to improve.

Register at the Lancaster University website to download a free copy of the toolkit.

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