"I feel dumb, embarrassed, and frustrated”: A qualitative exploration of the lived experience of acalculia.

Benn, Yael ORCID: https://orcid.org/0000-0001-7482-5927, Jayes, Mark ORCID: https://orcid.org/0000-0002-0371-7811, Conroy, Paul, Cassius, Martin, Williams, Marney and Jenkinson, Colin (2020) "I feel dumb, embarrassed, and frustrated”: A qualitative exploration of the lived experience of acalculia. In: 15th UK Stroke Forum, 07 December 2020 - 09 December 2020, Online. (Unpublished)

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Abstract

Introduction: Acalculia is an acquired disability following stroke or brain injury, which involves difficulty processing numerical information (e.g. phone numbers, measurements) or problems with calculations and understanding quantities. Acalculia is not routinely screened for as part of standard post-stroke assessment. As a result, there is a lack of understanding of the nature and prevalence of poststroke acalculia, and the impact it has on stroke survivors. This qualitative study aimed to explore stroke survivors’ experiences of acalculia. Stroke survivors with a strong interest in acalculia and its rehabilitation initiated the study and contributed to its design. Methods: We explored the impact of acalculia on the lives of 16 stroke/brain injury survivors with acalculia and 7 carers using semi-structured online interviews. Participants ranged in age, gender, time post onset, lesion localisation, country of residence and numeracy level prior to brain injury. Data were analysed using thematic analysis. Results: Three main themes were identified: Awareness and Diagnosis, Emotional and Physical Impact, and Coping Strategies and Independence. Participants and carers repeatedly referred to the lack of awareness and treatment for acalculia and the devastating impact acalculia has had on their lives and independence. Practical impacts included managing money, making appointments, using timetables, organising social activities and employment, and managing medication. Conclusions: Our results highlight the urgent need to develop suitable assessments and interventions for acalculia and the scope for this to be PCPI-led. The data also reveal useful strategies and suggestions regarding effective timing and approaches for intervention.