Carers’ Unmet Needs

July 2019: Denham et al (2019) “This is our life now. Our new normal”: A qualitative study of the unmet needs of carers of stroke survivors. PLoS ONE 14(5): e0216682. https://doi.org/10.1371/journal.pone.0216682

Its always special to reference an article published by authors I have some connection with. This article, which incidentally, is open access, provides unique insight into the care needs of those who care for people recovering from and/or living with stroke. The authors introduce their research reflecting on the fact that stroke is a “family disease”. They’re right, aren’t they? It’s not just the survivor who is directly affected, but those who they share their lives with – hence the “family” description. What’s unique to this study, is its investigation of the unmet needs of carers across diverse settings. Previous research has mainly focussed on the rehabilitation phase of care. Although this study used qualitative methods and the majority of responders were female, it nevertheless provides unique insights into these members of our communities. You’ll find the abstract under Journal Club 2019 and “humble opinion” as a comment to this post.

Post-stroke Function: First 5 Years

June 2019: Rejnö et al  (In Press) Changes in functional outcome over five years after stroke. Brain and Behaviour https://doi.org/10.1002/brb3.1300

As the authors rightly claim, there is little evidence about the long-term, functional outcomes in survivors of stroke; which, when you think about it, is surprising! Stroke is a chronic disease, one that survivors will live with for the rest of their lives, yet we know very little about its long-term, functional impact. What I also find very surprising, is the lack of ongoing support that those with stroke, receive in the long-term. Australian researcher, Dr Jeni White, found that, once discharged, many feel “abandoned” by the healthcare system. So, its timely that we review an article about the long-term needs of people living with stroke. This article is freely available. Please find the abstract under Journal Club 2019, and my “humble opinion” attached as a comment to this post.

Quality of Life and Disability

June 2018: Rangaraju et al (2017) Comparison of 3-month stroke disability and quality of life across modified Rankin Scale categories. Interventional Neurology, 6, 36-41. https://doi.org/10.1159/000452634

One of the issues that continues to concern me is that we fail to consistently and routinely measure outcomes across a survivor’s recovery journey after stroke. If I were to experience a stroke here in Australia, would I have my own baseline data and/or measures across time documenting my recovery or otherwise? It’s highly, highly unlikely! Why is this the case, and in turn, how can we expect health funders to support what’s happening in facilities that support those affected by stroke?

Often health professionals will argue that the reason they’re not doing it is because of time: it just takes too much time to use standardised assessments! They may also argue that its better to spend time on interventions, not assessments! Whatever the excuse, here’s an article that has investigated a standardised assessment that takes just a split-second to reliably measure disability after stroke! The modified Rankin score (mRS), a very raw score, could be your “for starters” choice! Rangaraju et al (2017) investigated its association with quality of life. To find out what an mRS of 3 means, read what they found!

The article is freely available at  https://doi.org/10.1159/000452634. Please find my “humble opinion” below, or under the Journal Club 2018 pages with the same title.

Stroke and Family Grief

April 2018: Coppock et al (2018) ‘It’s nothing you could ever prepare anyone for’: the experiences of young people and their families following parental stroke, Brain Injury, 32:4, 474-486, DOI: 10.1080/02699052.2018.1426879

I’ve recently experienced the loss of a close family member and in turn, I’m experiencing a natural, but heart-wrenching, grief and loss response. My loss has brought with it unanticipated change, and has challenged my resilience and ability to adjust. So, for me, it seems appropriate that this month I consider the grief and loss associated with stroke.

Surprisingly, there’s very little, recently-published, evidence on this, which, in and of itself, seems almost to dismiss this as an issue of clinical significance. So my thanks to Coppock et al (2018), because their “research offers an insight into the processes that may contribute to patterns of interpersonal relating that could negatively impact on adjustment. Provision of adequate information, psychological and practical support during recovery may therefore be crucial elements of supporting young people and their families in adjusting to the challenges posed by stroke”.

This article is not freely available, but if you’d like a copy, you can always email the corresponding author. To find the abstract and “humble opinion”, please select the drop down option under Journal Club 2018.

Cognitive Rehabilitation

November 2017 Gamito et al (2017) Cognitive training on stroke patients via virtual reality-based serious games, Disability and Rehabilitation, 39(4), 385-388, DOI: 10.3109/09638288.2014.934925

I’m often asked: What interventions have proven efficacy to improve cognition outcomes after stroke? Or, put another way, if I need to do cognitive rehabilitation, what should I be doing? Good questions! There are many who claim to be doing cognitive rehabilitation, and they are keen to tell you what they do and why; however, there is very little research into what works and what doesn’t work. But fortunately, this is starting to change. This month’s journal article demonstrates that prescribing virtual reality-based serious games can improve attention and memory outcomes after stroke. If you’re interested in cognitive rehabilitation after stroke, this article is worth reading. For “humble opinion”, please go to Journal Club 2017 and select Cognitive Recovery from the drop down box. This article is not publicly available, but don’t forget that you can always email the corresponding author for a copy.

Caregivers and Stroke

September 2017: Krieger et al. (2017) Developing a complex intervention program for informal caregivers of stroke survivors: The Caregivers’ Guide. Scandinavian Journal of Caring Sciences, 31(1), 146-156. DOI 10.1111/scs.12344

Yet again, I had the honour of presenting to therapists on stroke recovery; this time in Sydney. One of the questions we discussed at some length was the answer to the following question: “Whose stroke is it?” This is something I’ve been thinking a lot about in recent years. The processes of documenting stroke in health facilities clearly identifies the stroke as “belonging” to the facility, and yet, the actual stroke leaves the facility inside the head of the survivor. In fact, the long-term impact of stroke eventually falls almost entirely to the survivors and their families and carers. They are the people who carry the burden, who grieve the loss and who live with the stroke’s consequences and complications. As I say, “Whose stroke is it?”

I’ve selected this month’s journal article because these authors are reporting evidence about the impact of stroke on families and the benefits of well organised support framework for families and carers. You’ll find the article’s abstract and “Humble Opinion” in its usual place under this topic on the 2017 Journal Club page. This article is freely available at http://onlinelibrary.wiley.com/doi/10.1111/scs.12344/full

Predicting Recovery

May 2017: Stinear et al (2017 In Press) Predicting recovery potential for individual stroke patients increases rehabilitation efficiency. Stroke, https://doi.org/10.1161/STROKEAHA.116.015790

This is a topic that I have been thinking so much about in recent years. The evidence indicating a strong association between severity of upper limb dysfunction and long-term functional outcomes is compelling, and some of the principal contributors to this evidence are Drs Cathy Stinear, Winston Byblow and Alan Barber. All three live and work in the North Island of beautiful New Zealand. For many years now, they have headed up a team of researchers who continue to publish in health journals with high scientific integrity.

This article is yet another in their PREP series: Predicting Recovery Potential. However, what sets it apart is that it tests the PREP algorithm in the clinical workplace. It comes as no surprise that they have been able to demonstrate that the “PREP algorithm predictions modify therapy content and increase rehabilitation efficiency after stroke without compromising clinical outcome”. My congratulations go to these three amazing researchers. This article is well worth reading. You’ll find “Humble Opinion” in its usual place under this topic on the 2017 Journal Club page.