In the first study of its kind in Ireland, RCSI researchers asked people who are directly affected by stroke about their experiences and opinions of stroke services.
The research team used surveys and in-depth interviews to gather insights from stroke survivors, their carers and healthcare professionals. They also held a stakeholder meeting to discuss the findings. In total, 18 in-depth semi-structured interviews were conducted with stroke survivors and 12 were conducted with family members during 2021 and 2022.
The researchers found that stroke survivors and their carers faced many difficulties in finding and getting the support they needed, including rehabilitation, home care and support for mental health. As one stroke survivor, Nuala, explained: “Coming home was a disaster, I didn’t know what was going to happen. I didn’t know when my next visit was, and I was terrified the whole time.”
Stroke survivors and their carers wanted more access to rehabilitation services in communities all around Ireland, more long-term care, and more specialist staff across stroke care. They wanted better communication and information for people to be able to figure out what services are available and how to access them, including when the stroke symptoms were unusual.
Two stroke survivors who had memory or communication challenges felt that people with these difficulties were not understood or accommodated by the healthcare team while in hospital: “I couldn’t speak at all. I might’ve had two sentences and then I dried up, I couldn’t say anything. Even though there were lots of things I wanted to talk about … I know they were under awful pressure and everything. But I felt that they could have tried a little bit harder to perhaps understand,” said Lucy, a stroke survivor.
Accessing services
Healthcare professionals wanted more specialist rehabilitation for patients in hospitals, and for patients to have support to leave hospital earlier.
Taking a deeper dive into the problems of accessing services, the research identified a gap in support when people leave hospital after stroke and seek services in the community. COVID-19 restrictions made this gap even bigger. One family carer, Noreen, whose husband had a stroke 18 years ago, reported that they have received very little support. Séan, who had a stroke in 2015, considered that this was a common occurrence: “I started to realise then that there’s a lot of people out there, they get out of hospital and they kind of fall over the cliff and are forgotten about.”
Sometimes the problem was that services were not available close to where the person lived. In other cases the person’s age had an effect on what services they could access. Stroke survivors and their carers needed to put a lot of energy into finding these services and they found it stressful and tiring. Participants from both rural and city locations frequently asserted that a “postcode lottery” played a role in their care.
As well as gathering insights from people affected by stroke, the research outlined how population-based computer modelling could help to anticipate the needs and options for stroke services. This would give policymakers concrete evidence about demand, cost and cost-effectiveness.
The research, published in the journals PLOS One and Disability and Rehabilitation, is now contributing to the broader discussion on stroke care, and can help to inform future policy and practice in Ireland as well as other countries with similar healthcare challenges.
RCSI is committed to achieving a better and more sustainable future through the UN Sustainable Development Goals.
