Understanding the experience of stroke survivors and realising that there is not a ‘one size fits all’ approach to rehabilitation are the findings from a new Griffith study.
Conducted on the Gold Coast by Griffith Masters of Medical Research, Occupational Therapy student Ms Kim Walder and Professor Matthew Molineux from Griffith’s Menzies Health Institute Queensland, the study explored the process of adjustment post-stroke from the survivor’s perspective.
In the study, six stroke survivors, based mainly on the Gold Coast, and aged between 34 and 76, shared their personal journey of adjustment via a series of in-depth interviews.
They each highlighted a period of ‘disconnection’ from self, others and reality following stroke and the process of re/establishing connections.
A unique experience
“We realised quite early on from our study, that each survivor’s stroke experience and the way they deal with their rehabilitation process, can be quite unique,” says Ms Walder, who will be discussing the study at this week’s Gold Coast Health Research Week Conference (28-30 November).
“We asked many questions pertaining to what the whole experience was like for them and what their greatest challenges have been and are now.
“A main finding was that survivors often experience a disconnection from their own reality, for example experiencing confusion regarding the differences in their life before and following the stroke. Identity issues around their working and family lives and what they are able to engage in/not engage in after having a stroke are often problematic, with a range of physical, emotional and cognitive aspects, coming into play for people in varying ways.
“For some people, it would be the cognitive skills involved in planning or calculating things at work, or for others it could be simply the overwhelming sensory overload when out for coffee with friends and being slower at processing what is going on around them.”
Several participants from the study reported that health professionals were wanting to help but did not really understand the survivor’s personal experience, with participants reporting that they often therefore felt disconnected from services.
“Understanding the individual experience of stroke survivors can be difficult for health professionals, as well as family and friends due to the unique experience of each person, combined with the “hidden” challenges not visible when you look at a person,” says Ms Walder.
“We also learnt that many survivors have varying ways in which they may deal with their own recovery trajectory over ongoing months or even years. For example, writing poetry or simply connecting with others in a similar situation can assist with motivation, confidence and reintegration into the community.”
Insights from this study provide an understanding of issues and outcomes which are of most meaning to the individual, thus informing how best to align services to client needs.
The study also revealed how survivors are feeling about some of the best practice guidelines such as early mobilisation and goal setting.
A deeper understanding is needed
Ms Walder says that a deeper understanding of survivor needs and preferences will help services be more individualised and collaborative, ensuring client-centred practice and optimal outcomes.
‘The lived experience of adjusting to life after stroke on the Gold Coast: How well are we doing?’ will be one of the program sessions at the Gold Coast Health Research Week Conference. The session will be held 3-4pm on Wednesday 29 November.
The conference program offers sessions and opportunities for collaborative discussion and networking between clinicians and academics.
For more on the Gold Coast Health Research Week Conference, themed “Towards a Healthier Gold Coast,” visit https://www.eventbrite.com.au