Managing life in the first year after stroke: What do people with communication disorders want us to know?

How are our patients with post-stroke communication disorders really managing after discharge? What kinds of challenges are they facing? How can we better prepare them to adapt to these challenges after therapy is over? 

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Wray et al. interviewed 14 people with communication disorders after a stroke and 7 family members to learn about:

  1. how they adjusted to life after their strokes,

  2. what strategies they were using that were helpful, and

  3. what needs they still had in relation to the adjustment process.

All of the participants had their strokes less than a year before the interview.

The main findings are that people who survived strokes and their families are already doing a lot of work on their own to figure out how to adapt to life with a communication disorder. They often also feel lost and sometimes abandoned after discharge. This means we have the opportunity to use our therapy time to support families, ease the transition from therapy, and improve self-management after therapy. So what could this look like? 

  • Encouraging patients to test out different communication environments while they are still in therapy. You can help guide them in the “trial-and-error” process that they will be doing anyway. And by doing it under your support, patients may find it easier to keep testing their participation boundaries after discharge.

  • Identifying patients’ goals and the strategies they already have in place. Then, optimizing those strategies. The strategies people developed themselves were varied and personal such as choosing to laugh rather than feel embarrassed, wearing clothing that was likely to generate spontaneous conversation, or participating in certain routine activities with familiar people. 

  • Involving caregivers in therapy to the extent they are interested. The tension between independence and support was one of the themes that came up across participants. Let’s train caregivers to be confident in how to provide communication support while also helping families figure out how to balance independence and support in their daily lives.

We realize that none of this information is new. But, the interviews provide a beautiful portrait of what matters to people with communication disorders after stroke. The more we keep in mind what matters to our patients, the more meaningful and effective our therapy will be.

 

Wray, F., Clarke, D., & Forster, A. (2019). How do stroke survivors with communication difficulties manage life after stroke in the first year? A qualitative study. International Journal of Language & Communication Disorders. doi:10.1111/1460-6984.12487