Ros Capper the author of “The accidental carer” www.theaccidentalcarer.co.nz recently hosted a day of inquiry and creative thinking to highlight the role of the palliative family carer. Researchers, clinicians, support people, family carers and a funeral director came together at Vaughn Park in Long Bay for a day of creative thinking and discussion. Facilitated by Pleasance Hansen, the day was an opportunity to generate new ideas to support family in their role as a carer.
Reflecting on ways of creating “space” for carers, the discussion went far beyond just physical space. Making space for family carers in policy, space in interactions with healthcare professionals and space within a community were considered important aspects of enabling the family carer to be heard. Enabling family carers to find their voice was another important part of the day and with family carers present, it was refreshing to hear their voice away from the dominating voice of the health care professional.
We have a long way to go in healthcare and in society for family carers to really feel they have a voice.
It is always amazing when we see how a group of people enquiring together have the potential to really make a difference. For example, discussions regarding the importance of self-care revealed how important this was not only for the carer, but also for the ill person. This was highlighted when an ex-family carer shared their experience of how the family member they were caring for became concerned when they were not being seen to care for themselves.
Moving beyond the traditional self-help groups, the workshop explored how communities can come together supporting people as they move through a period of caregiving. The strength within the group as we moved through the day was an example of how a group of people have the potential to really make a difference. As Margaret Mead said – “never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.