Barriers to Care Experienced by Stroke Survivors with Visual Impairment in Alberta: A Qualitative Description Study

Authors: Micah Luong¹, Kiran Pohar Manhas², Katelyn Brehon³, Jennis Jiang³, Imran Jivraj¹, Karim Damji³, Fiona Costello¹. 
¹University of Calgary, ²³University of Alberta.

Author Disclosure Block:  M. Luong: None. K. Pohar Manhas: None. K. Brehon: None. J. Jiang: None. I. Jivraj: None. K. Damji: None. F. Costello: Funded grants or clinical trials; Name of for-profit or not-for-profit organization(s); NRV Strategic Clinical Network as a funding source.

Title: Barriers to Care Experienced by Stroke Survivors with Visual Impairment in Alberta: A Qualitative Description Study

Abstract Body:

Purpose: The primary objective of this study was to identify gaps in care experienced by stroke survivors in Alberta with visual impairment (VI) by: (a) clarifying stroke survivors’ experience of post-stroke VI diagnosis and management across the care continuum including perceived barriers and facilitators; and (b) understanding provider perceptions of health services delivery and inter-professional collaboration for post-stroke VI in these settings.
Study Design: This qualitative description study was conducted at 12 urban and rural sites (including acute stroke services, inpatient rehabilitation wards, and community-based facilities in Alberta, from August 2020 to February 2021. This study was approved by ethics boards across institutions and participants provided informed written consent.
Methods: Adult stroke survivors (age > 18 years) and care providers (allied health, physicians, nurses, ophthalmic technologists, orthoptists) across the care continuum (including acute stroke in-patient services, tertiary in-patient rehabilitative care, and community-based settings) participated in the study.
Results: Fifty interviews were completed with 19 survivors (n=14, 74% male; 84% from community care settings) and 31 providers (n=20, 74% from community care). Two key themes emerged from the provider and survivor interviews pertaining to (a) the facets of visual rehabilitation services and (b) functioning with post-stroke VI. In theme (a), providers and survivors described three sub-themes of barriers and facilitators to visual rehabilitation services including access, resources, and professional interactions. In theme (b), providers and survivors spoke of their respective roles and experiences around functioning with post-stroke VI. Sub-themes included early experiences post-stroke and living with post-stroke VI in the real world. Survivors and providers discussed the prohibitive costs and lack of resources associated with visual rehabilitation services. Suboptimal inter-professional communication was described as a barrier impeding access to, and quality of, visual rehabilitation services. Finally, driving was frequently discussed by survivors and providers as a real-life challenge to living with post-stroke VI.
Conclusions: Two main themes emerged from interviews with survivors and providers pertaining to facets of visual rehabilitation services and functioning with post-stroke VI in the real world. The findings from this qualitative study were used to develop quantitative surveys aimed at gaining a broader cross-section of perspectives from stroke survivors and providers. Future research will focus on developing and evaluating the effectiveness of a care pathway from both a survivor and provider perspective to continue to monitor and improve post-stroke VI care provision in Alberta.