"Then you are left on your own": barriers to guideline-based speech and language therapy for aphasia along the patient journey in the German-speaking healthcare context.

backgroundAlthough evidence-based recommendations for aphasia rehabilitation exist, guideline-based speech and language therapy is still not consistently implemented in routine care. Previous studies have described barriers to therapy participation from the perspective of people with aphasia, but less is known about how these barriers develop along the patient journey, especially in outpatient care. This study explored systemic and individual barriers to the uptake of speech and language therapy in aphasia care and identified implications for improving services.

methodsAn exploratory qualitative study was conducted in the German-speaking healthcare context using two online focus group discussions. A multiperspectival sample was recruited, including people with aphasia, relatives, speech and language therapists, and other healthcare stakeholders. Data were collected with a semi-structured topic guide addressing barriers to guideline-based therapy use, challenges along the patient journey, and possible solutions. Audio recordings were transcribed verbatim, anonymized, and analyzed in German using Kuckartz's structured qualitative content analysis.

resultsThe analysis identified six main categories of factors influencing the provision of guideline-recommended speech and language therapy: societal and systemic conditions; access to care; the patient journey and continuity of care; relatives and the social environment; psychosocial factors; and therapy provision and interdisciplinary care; proposed solutions and areas for improvement are reported separately. Findings indicated that the provision of guideline-recommended speech and language therapy is strongly shaped by structural barriers within the healthcare system, particularly in the outpatient sector. Fragmented care pathways, limited coordination, bureaucratic and financial obstacles, and insufficiently accessible or specialized services hindered the implementation of guideline-based care. The transition from inpatient treatment to self-organized outpatient follow-up emerged as a particularly vulnerable stage. Relatives often compensated for deficits in formal care structures by taking on organizational, communicative, and emotional responsibilities. However, this informal compensation also created inequalities, as access to ongoing care partly depended on privately available support. Participants further highlighted shortcomings in interdisciplinary and psychosocial care and emphasized the need for earlier information, structured care pathways, improved coordination, and stronger implementation of evidence-based recommendations.

conclusionsThe provision of guideline-recommended speech and language therapy in aphasia appears to be shaped largely by structural and organizational barriers rather than by individual factors alone. Improving aphasia care will require coordinated action across the healthcare system, especially in outpatient care, including communication-accessible pathways, stronger continuity between sectors, better access to specialized and interdisciplinary services, and less reliance on informal support from patients and families.

trial registrationThis exploratory qualitative study was not prospectively registered.