May 2019: Large et al (In Press) A changed reality: Experience of an acceptance and commitment therapy group after stroke. Neurophsychological Rehabilitation, DOI: 10.1080/09602011.2019.1589531
The honesty and frankness of Stephen Jenkinson, a “grief monger”, is refreshing. He’s currently touring Australia, but please assume this is not a promotion of his tour and that I’m not a beneficiary. I refer to him because his ideas interest me. In an interview with the ABC in 2016, he stated: “Every solution to dying that we come up with preserves the fear of it while claiming to absolve us of it.” Hmmm… is it time to talk about this?
Of course, I’m not suggesting that stroke is synonymous with dying, but up to one third die within the first year. However, stroke is synonymous with the experience of prolonged grief. In my search for studies investigating post-stroke grief in the past 2 years, I found only one! Large et al (In Press) investigated the efficacy of Acceptance and Commitment Therapy (ACT) after stroke, and found the main difficulty survivors face is “accepting the changed reality”. Do the clinical practices associated with stroke recovery include time and interventions targeting prolonged grief and the “accepting the changed reality”; or, is most of what we do as professionals, an avoidance of this?
To find Large et al’s abstract, please go to the Journal Club 2019 page. This article is not publicly available, so you may need to purchase it or ask your facility’s librarian. Please find my “humble opinion” as a posted comment.
I completely agree with Large et al when they state that: “The focus on the medical management of acute stroke means that longer-term, psychological, cognitive or social needs may be overlooked”. These researchers recruited those who were already experiencing “difficulty adjusting to stroke symptoms”; so this intervention was about remediation, rather than risk reduction, which was the right thing to do in relation to the study. However, rather than waiting for people to experience difficulties, surely the stroke rehabilitation “tool box” should include interventions targeting prolonged grief? In stroke rehabilitation, are survivors encouraged to discuss their feelings about the stroke? Are they encouraged to talk about the disruption it causes, the loss it brings about, and the fact that it changes their lives forever? Are they “allowed” to get angry about that? Is it OK for them to express frustration, sadness, sorrow, loss and grief? Or is stroke rehabilitation all about compliance, motivation and commitment to therapy programs?
With so little evidence about the grief experiences associated with stroke in the first few weeks, we can perhaps assume this phase is all about recovery. When I present about stroke recovery to therapists, what they want to know are answers to “what” interventions they should be prescribing. It’s all too easy to assume that has health professionals, we (not them), know best! It’s also far easier to make stroke rehabilitation all about pathways to recovery, perhaps, along the way, avoiding the dreadfulness of stroke. How often do we provide opportunities for those directly affected to feel terribly sad about what has happened? Is it OK if they cry, or is this simply emotional lability or post-stroke depression? What happens if a patient becomes really angry about what had occurred? Do our practices and discourse actively avoid their grief and loss?
Jenkinson challenges the practices associated with palliative care, stating that “avoiding death is deeply rooted in the language we use” and “that palliative care itself, with its heavy emphasis on sedation, is sometimes little more than the masking of death”. If he was asked to reflect on what does and does not occur in stroke rehabilitation, I wonder if he would say the following? Avoiding grief is deeply rooted in the language we use… Stroke care itself, with its heavy emphasis on rehabilitation, is sometimes little more than the masking of grief.
Sure, restitution of function and independence is important to those recovering from stroke; but not if its at the cost of masking its devastating and life-changing impact. As Large et al’s findings demonstrate, stroke rehabilitation needs to include both.
As always, this is just my humble opinion. If nothing else, perhaps, at the very least, let’s set aside some time to talk about this.
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