Stroke Survivors’ Perceptions & Experiences of Upper Limb Dysfunction, Rehabilitation, & Recovery

Upper limb (UL) dysfunction, common after stroke1, results in decreased occupational performance and quality of life2. Stroke survivors report limited focus on UL recovery during rehabilitation and may feel dissatisfied with services3. This study utilized a phenomenological qualitative design to explore the perceptions and experiences associated with UL rehabilitation and recovery for stroke survivors living in a small upstate New York city with the aim of informing local services. Local community dwelling stroke survivors 18 years or older with UL dysfunction who had received or were receiving rehabilitation services poststroke were recruited through local clinics, support groups, and professional contacts. Four participants, aged 39 to 72 years and one to 33 years post stroke, completed initial and follow-up semi-structured interviews lasting 30-60 minutes. Transcribed interviews were analyzed using an iterative process of descriptive coding, categorization, and thematic analysis with researcher triangulation, member checking, and peer debriefing to enhance trustworthiness. Several themes each were found in relation to three research questions. Perceptions and experiences associated with rehabilitation revealed themes that included doing their job, therapist-driven services, trial and error, and varied sources of motivation. Themes associated with the impact of UL dysfunction included occupational disruption, altered sense of self, managing the arm, and everyday challenges. Themes associated with on-going needs included acceptance versus hope, recovery is work, and navigating on your own. The results of this study revealed that participants had unmet occupational and recovery needs and were left to navigate on their own with client-centered, evidence informed, and theory based services4 not readily available. Understanding the experiences of occupational therapy consumers is key to informing services that facilitate participation and satisfaction in everyday life.

References

Raghavan, P. (2015). Upper limb motor impairment after stroke. Physical Medicine and Rehabilitation Clinics of North America, 26(4), 599–610. https://doi.org/10.1016/j.pmr.2015.06.008

Smith, R., Burgess, C., Sorinola, I. (2018). The effect of a dysfunctional upper limb on community-dwelling stroke survivors and their carers: An interpretative phenomenological analysis. Physiotherapy Research International, 23(4), e1726. https://doi.org/10.1002/pri.1726

Luker, J., Lynch, E., Bernhardsson, S., Bennett, L., & Bernhardt, J. (2015). Stroke survivors’ experiences of physical rehabilitation: A systematic review of qualitative studies. Archives of Physical Medicine and Rehabilitation, 96, 1698–1708. https://doi.org/10.1016/j.apmr.2015.03.017

American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy, 74(Suppl. 2), 7412410010. https://doi.org/10.5014/ajot.2020.74S2001