A qualitative description of barriers to visual rehabilitation experienced by stroke survivors with visual impairment in Alberta, Canada

Abstract

Background: Post-stroke visual impairment (VI) is a common but under-recognized care challenge. Common manifestations of post-stroke VI include: diplopia, homonymous hemianopia, oscillopsia secondary to nystagmus, and visual inattention or neglect. In acute care settings, post-stroke VI recognition and treatment are often sub-optimal as emphasis is placed on survival. Stroke survivors with VI often face inconsistencies when accessing care out of hospital because variable availability and subsidization of visual rehabilitation. We sought to identify gaps in care experienced by stroke survivors with VI from stroke survivors' and care providers' perspectives.

Methods: We conducted a qualitative description study across 12 care sites in Alberta, Canada, using semi-structured interviews. Survivor interviews focused on the health system experience. Provider interviews discussed approaches to care, perceived gaps, and current resources. Interviews were audio-recorded and transcribed. Iterative content analysis was completed using NVivo 12. We promoted rigour through an audit trail, open-ended questions, thick description, and collaborative coding.

Results: We completed 50 interviews: 19 survivor interviews and 31 provider interviews. The majority of survivors were male (n = 14) and recruited from community settings (n = 16). Providers varied in profession and location within the care continuum. Two key themes emerged from the provider and survivor interviews pertaining to (a) facets of visual rehabilitation (sub-themes: access, resources, and multidisciplinary professional interaction); and (b) functioning with post-stroke VI (sub-themes: early experiences post-stroke and living with VI in the real world).

Conclusions: The visual rehabilitation model needs to be optimized to ensure transparent inter-disciplinary communication and efficient referral pathways. Future research will focus on evaluating the effectiveness of post-stroke care from multiple perspectives in Alberta.

Keywords: Stroke; patient experience; provider experience; qualitative; vision loss.

Fig. 1

Thematic framework highlighting the relationships between facets of visual rehabilitation and functioning with VI. There is a bidirectional arrow between access, resources, and professionals and visual rehabilitation since the services provided to survivors can also affect future access to professionals and various other resources. The curved arrows on either side of the framework show how the early stroke experiences can influence barriers and facilitators to visual rehabilitation such as better or worse access, resources, and professionals. Facets of visual rehabilitation can also influence how survivors are cared for, and function, later on when they are living in the real world