1. Patient experience of palliative care services:
Narratives of Care
Patient experience of palliative care services:
responses from
iWantGreatCare
Dr Cathy Sampson, Dr Anthony Byrne, Dr Annmarie Nelson
On behalf of Baroness the Professor Finlay and the Wales Palliative Care Implementation Board

2. iWantGreatCare Palliative Care Survey
Developed by Wales Palliative Care Implementation Board in 2009
By January 2011 – 0ver 1400 forms returned
Monthly feedback to services; annual regular reporting to government
Identification and sharing of good practice; examination of concerns

3. iWantGreatCare Explanatory letter 9 questions Likert-type scale
For completion by patients, carers
Open box for free text responses if person so wished
Any aspect of care

4. Emotional experience of care

5. Free text responses: Approximately 1/3 carer and 2/3 patient responses
594 responses from 696 questionnaires (>85%)
Approximately 1/3 carer and 2/3 patient responses
Qualitative analysis to allow nuanced interpretation and understanding of themes and domains of care important to patients

8. Concerns: Small proportion of total responses
Low scores corresponded to specific issues of concern in an individual’s care
Good care was scored highly even where concerns were raised about a lack of resource provision

10. Facilitating Care:
“[palliative care service] efficiently dealt with hospital delays in discharging the patient from hospital so we could care for him at home in the last days of his life. They then dealt with all aspects of monitoring his care and co-ordinating the necessary agencies as well as supplying some of the light care and respite care for me. All the people who came to help were efficient, friendly and supportive. It was to [palliative care service] I turned in moments of panic and to understand the changes before death.”
“The team came within days of me coming out of hospital and was able to help me understand what effects the coming treatment would have and was there for me to talk to about any worries I had. They helped me sort out all the help that I was entitled to”

12. Emotional experience: Attitude change
Acceptance:
“It was to [palliative care service} I turned in moments of panic and to
understand the changes before death”
“Your response to a time of crisis in my life meant so much. Until then I
despaired for the future but your help made me see that I was unable to care for
my husband any longer. He is now settled in a care home – not what I wanted for
us, but I have to accept my limitations”
Validation:
“My problems were addressed and I felt like an individual again. My problems were difficult to treat and my inability to express myself must have been frustrating but I was shown patience and respect and was made to feel safe and cared for until I felt able to move forward.”

14. Emotional experience: peer support
“They [palliative care service] make me feel very welcome and ask how I am coping. You can also talk to people in the same problems which seem to make this a little better”
“...they [palliative care service] have also introduced me to the friendship group which is held in-house every two weeks. Attending the group has helped me realise I am not on my own and given me the opportunity to meet lovely people.”

15. Summary:
iWantGreatCare captures multidimensional aspects of care experience
Very high use of free text reflects strength of patient and carer feelings on importance of care experience
Very rich reflection – key themes emerge strongly
Opportunity to develop the questionnaire further based on very high rate of feedback: gold standard for capturing experience of palliative service