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Swallowing difficulties (dysphagia) are common in stroke survivors. It is essential that they are spotted and properly managed as they can lead to serious problems, like chest infections and choking.

Stroke survivors should have a swallow test within four hours of arrival at hospital, before they are given food, water or medications. If they do have swallowing difficulties, it can change how they eat and drink in the days, weeks and even months following their stroke.

However, we don’t know enough about what people affected by stroke think or feel about how swallowing difficulties are managed in hospital. So, Sabrina Eltringham, a Stroke Association funded researcher, worked with Laura Piercy, our Research Engagement officer, and people affected by stroke who are members of our Stroke Voices in Research (SVR) panel looked to find out.

Interviewing stroke survivors

Five stroke survivors with swallowing difficulties were interviewed, including family members who have a role in looking after them. They were asked about their experience in hospital, as well as their opinions on and feelings about their swallowing difficulties after stroke.

Drawing on their own unique experiences as stroke survivors, the SVR panel helped the researchers to spot key themes from the interviews and understand what they might mean. This valuable insight can be used to improve detection of and treatment for people with swallowing difficulties after stroke.

For example, one carer interviewed spoke about the impact of their partners swallowing difficulties on social activities saying “I thought, it’s cruel really because what’s happened to him… he really loves food and it’s part of your social life: going out having a meal, having people to the house and going out with friends and family, isn’t it?”. Members of the SVR panel added their perspectives on socialising around mealtimes in hospital, like the importance of going to the dining room, the feeling of embarrassment eating in front of others and the loss of independence.

Identifying potential solutions

By working together to identify themes from the interviews, the researchers and SVR panel discovered potential ways to improve how we address swallowing difficulties caused by stroke. They include:

  • Adapting public health messages so people are responsive to the signs of stroke and aware that swallowing difficulties can be a consequence of stroke.
  • Training hospital staff to give those affected by stroke information about swallowing difficulties and suitable food and drinks to fuel their recovery.
  • Finding out more about the impact of swallowing difficulties, outside of hospital, later in someone’s journey to help rebuild their life after stroke.

There are many ways stroke survivors can be involved in research. But right now, those affected by stroke are less frequently involved in the process of understanding and making sense of research data. In this study, the researchers showed just how valuable their input can be saying they “helped enrich the themes identified, ensure the conclusions are credible from a stroke survivor’s perspective and identify issues relevant to people affected by stroke, which we might have missed”.

You can read more about it in the research paper.