The unmet needs of younger stroke survivors with Dr Jessica Shipley

Jessica Shipley is a junior doctor at the Royal Melbourne Hospital. She has worked on young stroke research through the Florey Institute of Neuroscience and Mental Health.

How do the needs of working-age stroke survivors differ from those who are older?

Working-age stroke survivors’ needs differ from those of older stroke survivors in a number of ways. For example, our research found that coming to terms with the diagnosis of stroke is particularly challenging for younger adults. This is partly because stroke is thought of as a disease of old age and chronic health problems. For younger adults who have no known risk factors for stroke, the diagnosis is particularly shocking and devastating. Many of the participants in our study questioned, “how could I have had a stroke when I’m young, fit, and healthy?”. This is made even harder by constantly hearing things such as “you’re too young to have a stroke - that’s impossible”. To help them through this unique grief experience, our study suggests that working-age stroke survivors need psychological support after diagnosis and more information about young stroke. They also need to be linked in with other younger stroke survivors, so they don’t feel so isolated in their experience.

Working-age stroke survivors also have unique needs related to the stage of life they’re in when they have a stroke. They’re often working or studying, planning or raising a family, and participating in active leisure activities such as cycling. They’re also planning their future, including their next career steps and travels - maybe they're aiming for their next promotion, or want to go snorkelling in the Great Barrier Reef. Working-age stroke survivors need uniquely targeted rehabilitation to support them in getting back to these activities. For example, they need support in getting back to work, looking after their children, and planning a meaningful future. 

How well are these needs being met? What could be improved?

Our research found that these needs are not being met by the current services. Stroke care largely focuses on physical needs and doesn’t adequately address the invisible emotional and cognitive effects of stroke. For example, very few participants in our study saw a psychologist after stroke even though they experienced significant grief and long-term emotional problems. Cognitive issues, such as memory and concentration problems, were not addressed either, despite significantly affecting their ability to return to work. Stroke care could be improved by providing psychological support for younger stroke survivors from the point of diagnosis and also providing rehabilitation for non-physical impairments (such as memory rehabilitation). 

Many of our participants also stated that stroke care is designed to meet the needs of older stroke survivors; it’s not designed to get younger individuals back to work, back to caring for young children, and back to activities that are meaningful for younger people. Stroke care could therefore be improved by providing rehabilitation that specifically focuses on these things. Younger stroke survivors also hope for more intensive and frequent rehabilitation so that they can recover as much function as possible. One of our participants mentioned that care currently aims to get survivors “up and walking or able to make a cup of tea”, but younger stroke survivors want to aim for a higher level of recovery. Another put it, “I still have forty plus years of my life… I want all of the options on the table”.

What services are currently available for young stroke survivors?

There are no dedicated young stroke services at this time. The care received by younger stroke survivors depends on a number of factors, but generally it starts with being admitted to an acute hospital for treatment and medical stabilisation. Younger stroke survivors may then be transferred to an inpatient rehabilitation facility for physical rehabilitation, then discharged to the community for weeks to months of outpatient rehabilitation, depending on their needs. In the first 3 to 6 months post-stroke, stroke survivors may also have an appointment with a neurologist (stroke doctor). These appointments are a great opportunity to receive more information about their stroke and have their medical management reviewed. But some of our participants only had a few appointments with a neurologist, and sometimes they weren’t followed up at all.

Ultimately, the participants in our study identified that these services are insufficient for their needs as working-age stroke survivors. They need more information about young stroke, more meaningful rehabilitation goals, more rehabilitation and support for non-physical problems, and longer-term follow up.

What plans are in place to improve care for younger stroke survivors?

The Stroke Foundation's Ready for Life plan includes Ready for Work, a world-first young stroke project that aims to provide targeted rehabilitation and support for younger stroke survivors. It involves information specifically tailored to younger adults, cutting-edge recovery interventions, and individualised support for younger stroke survivors and their employers in the return-to-work process. Ready for Work aims to improve younger stroke survivors’ recovery and addresses many of the needs identified in our research. 

The Return to Life, Return to Work research grant program will fund clinical trials focusing on stroke recovery in working age survivors. This is provided by the Stroke Foundation and the Australian Government's Medical Research Future Fund (MRFF).

To read more about the unmet needs of younger stroke survivors, read Jessica's paper here: How can stroke care be improved for younger service users? A qualitative study on the unmet needs of younger adults in inpatient and outpatient stroke care in Australia