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.

Sexuality After Stroke

McGrath et al (In press) How is sexuality after stroke experienced by stroke survivors and partners of stroke survivors? A systematic review of qualitative studies. Clinical Rehabilitation, https://doi.org/10.1177/0269215518793483

I don’t suppose these findings will come as any surprise, but it’s always good to have evidence that supports what we think is, or is not happening. Here in Australia, the results of the national audits support the authors’ conclusion in the abstract, that, after stroke, “sexuality is rarely discussed openly”. In Journal Club 2016, you’ll find an explanation based on a review of the literature, about how stroke impacts sexual function. The page is titled: Altered Sexual Function. So, as a follow-up, this month’s JC directs you to McGrath et al’s (In press) systematic review which investigated and systematically reviewed the “real world” experiences of those who are directly affected.

Please find “Humble Opinion” as a comment to this post, and the Abstract under the Journal 218 page.

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

Behavioural Domains

April 2017: Ramsey et al (2017) Behavioural clusters and predictors of performance during recovery from stroke. Nature Human Behaviour, Early Online, DOI: 10.1038/s41562-016-0038

Although this may be a difficult “read”, its this month’s journal article because it challenges the way we think about stroke recovery and particular impairments or areas of dysfunction. To date, our understanding of the impact of stroke is usually in terms of differentiating between impairments. Different therapists see patients with different impairments based on their professional expertise . For example, speech pathologists manage patients with language impairments. However, what Ramsey et al found challenges this approach. In relation to recovery in the first 12 months after first-ever stroke, they have found a clustering of impairments and two behavioural domains: 1) motor and attention; and 2) language and memory. This means we may need to re-think our differentiation and management of impairments after stroke.

This article is freely available and is well worth reading. To find the abstract and “humble opinion”, go to Journal Club 2017 and select: Behavioural Domains.