Family Experiences of Vegetative and Minimally Conscious States

Message from families to families

The people who spoke with us often wished that they had known others in the same situation and could have benefitted from their experience. But they often didn’t feel in any position to offer advice to others themselves. This was because most felt they were still on a journey that wasn't over yet and they were also aware of how their own views had changed over time. Several people we spoke to commented that the message they would have wished so send to another family in the first few years after their relative’s injury would be different from what they would say now. 

Common themes in the messages people did feel able to give were focused on the importance of gathering information and being there for the patient, alongside the need to be compassionate to yourself. People also often spoke about the need to try to keep their own lives going and not sideline other important people in their lives (e.g. their children). 
Others emphasised the importance of the quality of information about health care and medical issues.
Many families talked about the importance of combining survival strategies day-to-day, and coping with each day as it comes, with also being clear sighted about possible futures.
Many families felt they had not looked after themselves in the situation – and a key message to other families was to take care of themselves and each other in this desperate situation.

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