Task Force on Volunteering in Hospice and Palliative Care
The EAPC Task Force on volunteering started on December 2013. It brings together practitioners, volunteers and researchers and our approach involves both research and the sharing of practice and experience. The outcomes of our work are intended to develop a greater understanding of volunteering in the field and influence the development and improvement of practice. There are five main workstreams:
• A baseline survey of volunteering in hospice and palliative care in Europe to explore numbers, roles, management, training and challenges. This is being led by Professor Lukas Radbruch at the University of Bonn.
• The development of a paper on the contribution, position, identity and value of volunteering in hospice and palliative care in Europe. This paper is based on a literature review, focus groups and a consultation with country experts to gain consensus on four key discussion areas.
• The development of a charter for hospice and palliative care volunteering in Europe
• A stories project to be launched in 2016 to gather the experiences of volunteers and volunteer managers in their own words
• An ongoing commitment to International symposia for example: in Vienna in April of 2015, at the EAPC Congress in Prague in 2013, where volunteers, paid staff and researchers can engage in sharing knowledge, practice and ideas through focused presentations and workshops.
Informed by a series of working groups held at the Symposium “Colourful Lives of Volunteers in Europe” at the EAPC Congress in Prague in May 2013, the aims and objectives of the Task Force are to explore:
- The roles undertaken by volunteers in hospice and palliative care in Europe
- How volunteering is managed
- What training is offered to volunteers
- What the challenges are for volunteers, managers and organisations
- The numbers of volunteers involved in each participating country
Volunteers play an important role in a civil society and in some countries in Europe have historically had a long involvement in hospice and palliative care, often initiating services. Many hospice and palliative care services depend on volunteers to enable them to deliver the range and quality of services that they provide. This includes both emotional and practical support to patients and families in hospices and in the community, in addition to valuable support for the wider organisation through administration, fundraising and awareness raising. Volunteers have an important role to play and bring a unique quality to the care of patients and their families. However, volunteers, may not always be acknowledged as a part of the professional team, or their skills and expertise recognised (Davis-Smith (2004), Andersson and Ohlen (2005), Addington-Hall and Karlsen (2005), Barron (2008)). With a demand for hospice and palliative care steadily increasing, volunteers will have a significant role to play in the delivery of services in the future in ensuring truly holistic care.
Addington-Hall, & J.M.,Karlsen,S.(2005b). A national survey of health professionals and volunteers working in voluntary hospices in the UK 2: Staff and volunteers’ experiences of working in hospices. Palliative Medicine 19 (1), 49-57.
Andersson, B. & Ohlen, J. (2005). Being a hospice volunteer. Palliative Medicine 19, 602-609.
Barron, A. (2008). Sharing Good Practice; The Management of Hospice Volunteering. Retrieved on August 21, 2011 from http://www.leighbarron.com
Davis-Smith, J. (2004). Volunteering in UK hospices: looking to the future, London: Help the Hospices.
Morris S, Wilmot A, Hill M, Ockenden N and Payne S. (2012) A narrative literature review of the contribution of volunteers in end of life care services. Palliative Medicine (published on-line July 2012) DOI: 10.1177/0269216312453608
Information has been gathered for the different work streams using a range of methods and have included group discussions at Task Force meetings, consultation, presentations and discussion groups at two international symposia and submitted country information.
This project involved mixed methods for data collection. Numerical data was gathered to give an indication of the numbers of volunteers in each participating country and the numbers involved in direct care of patients. Qualitative data was also be collected to give an understanding of how volunteering is understood in addition to exploring areas such as management, training and challenges.
Because of the geographic nature of the study, data was gathered by a self-administered online survey. National associations in each country were the main point of contact for statistical and other strategic information and the Task Force membership identified volunteer managers and volunteers in each country to respond to the other aspects of the study.
Milestones and Achievements
Phase 1 - Gathering and sharing Information and practice
Work on data gathering for the survey has been completed and the data gathering for the survey closed. Responses have been received from 40 Volunteer Co-ordinators from 20 countries and 116 volunteers from 17 countries. Data analysis will now take place and the findings disseminated and published.
Two international Symposia “The Colourful Lives of Volunteers in Europe” were held, one at the EAPC Congress in Prague in 2013 and one in Vienna in April 2015. Open Task Force meetings were held at the EAPC Congress Lleida in 2014 and a “Meet the Expert Session” was held at Copenhagen in 2015. The Task Force also had a stand as part of the EAPC display in Copenhagen.
Phase 2 - Making sense of the information – theory into practice
A paper that explores the role, position and identity of volunteering in hospice and palliative care has been drafted. The paper draws upon data from literature, group discussions, and a consultation with country experts. Information has also been gathered from Task Force meetings and the symposia. Findings of the work of the Task Force to date were shared at the “Meet the Expert Session” at the EAPC Congress in Copenhagen in 2015.
Phase 3 - Vision to reality
An European Charter for Volunteering in Hospice and Palliative has been drafted. This was initially consulted on at the Symposium in Vienna, at the Meet the Expert Session in Copenhagen and has been circulated to the full Task Force membership for final comment. It is hoped that this may be launched in 2016.
The remaining workstream of the Task Force is the launch of a stories project in early 2016. The aim of the project is to gather first hand accounts of the experience of volunteers and volunteer managers and what volunteering means to them. It is planned to have these available electronically both in the original language of the volunteer or volunteer manager, alongside a translation in English. We hope that this will help to highlight the important role of volunteers and help in sharing practice and experience.
Pelttari, L., Pissarek, A., Scott, R. (2014) - A new Task Force will investigate hospice volunteering in Europe. European Journal for Palliative Care 21 (3) 148,149.
Scott, R., Pelttari, R. (2015) Comment - EAPC Task Force on Volunteering: What progress has been made. European Journal for Palliative Care 22 (6) 265.
EAPC Blog June 2014 Pelttari, L., Pissarek, A., Scott, R. (2014) - Colourful lives of hospice volunteers in Europe.
EAPC Blog January 2015 Pabst, K., Radbruch, L. - EAPC Survey: The role and motivation of volunteers in hospice and palliative care in Europe.
EAPC Blog March 2015 Scott, R., Pelttari, R., - Colourful lives of hospice volunteers in Europe 2.
Task Force on Volunteering Meeting
Donwload here a brief overview of EAPC Task Force on Volunteering Meeting held at EAPC 8th Research Congress in Lleida, Spain 5 June 2014 and the report of the International Symposium in Vienna in 2015.
Professor Sheila Payne, UK
Professor Lukas Radbruch, Germany
Piotr Krakowiak, volunteer manager, Poland
Jos Somsen, Volunteer Manager, Netherlands