Following the first meeting of Palliative Care Voices in October 2023 a survey was circulated to determine how best to take forward the group.
Summary of results from follow-up survey
16 responses (n=32) ; 50% response rate. 1 person responded twice
Contact
25% prefer to be contacted by email, 43.8% by WhatsApp and 31.3% happy with either.
ACTION – Establish WhatsApp group but maintain email communication as well for all communications. Don’t include those who specifically stated they would prefer email correspondence in WhatsApp group.
Gender
50% female, 50% male
Age
Over 50% aged between 20 and 39.
Country of residence
Good representation from LMIC. 3 respondents from Ireland. Remaining respondents from LMIC
Experience of palliative care
A significant number of respondents are PC healthcare professionals but a number also have experience of providing PC for a friend or relative. Only one person had received PC themselves but 12 respondents had provided PC as carers.
Palliative care advocacy
10 respondents had experience of palliative care advocacy in a variety of roles as set out in Box 1 below.
What involvement would you be willing to have with the WHPCA PWLE group?
All the respondents were willing to participate in zoom meetings for support and learning.
Thirteen respondents were willing to advocate for global palliative care at meetings, and on social media
Twelve respondents were willing to educate community groups about Palliative Care and why it is important
The overall responses in terms of involvement are summarised in the chart below. There is an enthusiasm amongst the respondents for advocacy for Palliative Care, and for sharing information about their own experiences both to support advocacy and for the learning of other members of the group. These are valuable resources which can be tapped into as we move forward with the lived experience Palliative Care voices group.
Palliative Care Voices 