Working with volunteers in end of life care: how we decided on the items for the training
Updated: Feb 4, 2021
An important part of the work in the iLIVE Project involves a group research to develop an international programme to train volunteers to support patients at the end of life in hospital, and evaluate its use in 5 hospitals across 5 countries. This is one of the three main studies included in the research. In the case of this volunteer study, the countries that are part of this working group are holding regular meetings to adapt the project to the current situation of the pandemic, in order to conform the work of these teams of volunteers to the necessary security measures and to guarantee the safety of all participants. Although the ethics committee are already working on the approval of the protocols for the training of these volunteers, now their participation is not recommended by the competent authorities in some of the participating countries, while others are stablishing limitations for their work, so the implementation of this study is not yet possible.
One of the main challenges of this part of the project comes from the need to train the volunteers and, consequently, to gain consensus on core ‘items’ to be included in an international hospital end of life care volunteer training programme. The development of this tool was directed by the Palliative Care Institute in Liverpool, a center that is part of the University of Liverpool.
The best way to address this situation was to develop a Delphi approach. This kind of tool is the best option to reach a consensus between different groups of experts and it is widely used for this purpose in scientific settings. This study was presented last year during the EAPC conference held in October.
Tamsin McGlinchey, Ami Nwosu, Stephen Mason, Anne Goossensen, Ruthmarijke Smedding, Inmaculada Ruiz Torreras, Dagny Faksvag Haugen, Urska Lunder and John Ellershaw were the researchers leading this part of the research.
The method used for this work consisted in:
Scoping Review: Identify key concepts/themes from the literature to develop ‘items’ for Delphi questionnaire
Delphi Questionnaire: Participants completed two rounds of a questionnaire, to rate ‘Items’ on a 5 point Likert scale (strongly agree – strongly disagree). Free text comments were also sought for each ‘item’
International Consensus Meeting: Facilitated discussion for consensus on included items
66 participants from 20 countries completed round 1, of which 76% (50, from 18 countries) completed round 2.
88 items included in R1; following review of free text comments, 87 items included in R2.
In R2, 12 items received a ‘very high’ level of agreement, under the following 7 themes:
Being there and being present
Defining and promoting understanding of the volunteer role
Ethical issues relating to end of life care and the volunteer role
Loss, grief and bereavement
Religion and spirituality
International Consensus Meeting: 17 experts in attendance, from 5 countries participating in iLIVE WP3. Overall consensus was agreed for 54/87 items.
The consensus meeting illustrated cultural concordance. An international programme has been developed and will now be adapted for use in 5 hospitals across 5 countries. Research evaluation as part of the iLIVE project is due to commence in July 2020.