What stroke survivors say about living with upper limb spasticity and how they manage it

 Survivors want spasticity cured; NOT 'MANAGED'!

Contrary to the incorrect opinions of Dr. William M. Landau. 

Of course the infamous Dr. William M. Landau thinks spasticity is not worth treating. 

Do you believe in the do nothingism of Dr. William M. Landau on spasticity?  

His statement from here:

Spasticity After Stroke: Why Bother? Aug. 2004

Wonder if he will be singing the same tune after he becomes the 1 in 4 per WHO that has a stroke, will he be satisfied with not getting recovered?

The latest here:

What stroke survivors say about living with upper limb spasticity and how they manage it

Shannon Pike,  Natasha A. Lannin, Lisa Cameron, Mithu Palit, Emma Schneider, Anne CusickFirst published: https://doi.org/10.1111/1440-1630.70045

Funding information: This work was supported by an Australian Government Research Training Program Scholarship (SP). The InTENSE trial was funded by the National Health and Medical Research Council, Australia [GNT1079542]. NAL is supported by the National Heart Foundation of Australia [GNT102055].

PDF

 

Abstract

Introduction

Post-stroke spasticity can cause serious impairment, activity limitation, and participation restrictions for survivors, leading to stroke-related disability. While there are hundreds of qualitative studies regarding stroke survivor experience, the phenomenon of what it is like to have post-stroke spasticity is not well understood.

Methods

Ten community-dwelling adults with chronic stroke and upper limb spasticity who had recently participated in an intensive upper limb rehabilitation programme were interviewed. A descriptive phenomenological approach using thematic analysis was used to identify patterns in the data to construct an understanding of the experience of what it is like to have upper limb spasticity.

Consumer and Community Involvement

There was consumer review of the information and consent form; there was no further consumer and community involvement.

Findings

Having upper limb spasticity was an embodied experience. Participants created strategies to manage the spasticity and keep active and engaged in valued everyday activities. Some strategies arose from rehabilitation experience, but most were perceived by survivors to be personally developed by them and unique to their everyday activities. These self-management strategies were patterns of action in everyday life that were anchored in time and their access to and use of health and home-care services and assistive technology. Self-management strategies involved expecting, learning, practising, evaluating, and moving forward.

Conclusion

Findings from this study indicate that stroke survivors who have upper limb spasticity engage in a daily process of adaptation and adjustment to stay active and engaged in valued everyday activities. Further, they use their experience in rehabilitation, access home, and health services as much as they can and develop unique strategies to self-manage upper limb spasticity to reduce impairment and engage in activity. Strategies in this study provide insights for stroke survivors, families, and therapists on ways self-management can be enacted from a survivor perspective.

Key Points for Occupational Therapy

• Stroke survivors with upper limb spasticity maintained or enhanced occupational participation by using self-management strategies to adapt and adjust to activity demands in everyday life.
• Stroke survivors developed strategies, applying and extending skills and knowledge from rehabilitation experiences which included expecting, learning, practising, evaluating, and moving forward.
• Therapists working from a person-centred enablement perspective can use these findings to explore the feasibility and utility of self-management approaches with chronic stroke survivors who have upper limb spasticity.