Rebecca Spencer, a CLAHRC Project Manager, blogs about how family cancer carers should have the right to influence important care decisions.
End-of-life cancer care is an area that I have personal experience of from when my grandma’s cancer recurred and spread. During the later stages my family worked around the clock to care for her so that she would be able to pass away at home: it was so important that she was surrounded by her family who she had been so devoted to. However, it was hard; I found the most difficult part was the dilemma of what to say and what not to say, particularly when she could no longer talk to us. She was downstairs in a special bed and we took it in turns to watch over her night and day whilst holding down full-time jobs, preparing her favourite meals and trying our best to make her comfortable. The Macmillan nurses were fantastic and so kind in the way they looked after her. In lots of ways the whole experience united our family, in a way that only she could do.
Because of this experience, it is very meaningful for me to work on the Dimbleby project. It’s a piece of work that aims to raise the profile of family cancer carers because they often struggle for recognition and support from professionals. The substantial input from family carers is not reflected in current policy; for example, the National End-of-Life Care Programme estimates that care at home is likely to be cheaper than hospital care, but this calculation only considers health and social care costs, not the family carers’ contribution. Sometimes carers give up work completely or reduce their hours to care. Raising awareness of the economic impact of family carers is so important: I wholeheartedly believe that family cancer carers deserve the role of expert partners in caring and the right to influence important care decisions.
Why is it important to find out what carers think?
The Dimbleby project is a national survey of family cancer carers, 4-6 months after bereavement. We’re working closely with bereaved carers to design the survey; it is so important we involve them in key decisions about the survey to ensure we ask the right questions and be sensitive to their grieving process by checking that the questions are not ambiguous and the format is user-friendly. We hope this will increase the response rate and therefore produce more statistically robust results, strengthening the statements made as a result of the study. In October this year we will send the survey out to 5,000 carers across England.
Which carers have been involved?
I scoped the cancer carer support groups within Oldham, Bury, Salford, Trafford, Stockport and Manchester City and discovered that they all provided carer support in slightly different ways (such as informal coffee mornings, pamper meetups or formal meetings to discuss services and care). Group sizes varied from one to four people in small meetings to 30+ people in a coffee morning. I discussed the project with staff from the carer centres on the map below. I reassured staff that we would be sensitive to the needs of their carers and explained the project to them. Most of the time, I was able to then meet with their carers, many of whom gave their time to listen about the project and offered to help. Further details about the engagement process are available in a presentation about patient and public involvement (PPI) in this work.
What difference has input from carers made?
It’s difficult to express just how much of a difference talking to bereaved carers has made to this project. We discovered that often carers are very willing to contribute for the greater good, even at a time in their life that is so distressing. Carers are vital in helping us find the delicate balance in our questionnaire between not causing distress and still being able to ask carers to remember details of their caring tasks. For me, this typifies why PPI is so important to research. I would like to personally thank all of those carers who have so kindly supported our study and bravely shared their experiences for the benefit of this research.