Aphasia and acute care: a qualitative study of family perspectives

ABSTRACT

Background

The early acute phase of hospitalization after the onset of aphasia is typically a challenging and stressful time for caregivers and family members of people with aphasia. During this time, it is particularly important to provide support and relevant information to family to reduce psychological distress and increase the likelihood of longer-term positive outcomes. However, families of people with aphasia often report a lack of support and information within the acute care setting and a generally negative experience.

Aims

To gather information and insights into the acute care experiences of families of people with aphasia as an early step in a larger project. The larger project was designed to improve the acute care experience for people with aphasia, families, and healthcare staff in a community teaching hospital.

Methods

A qualitative investigation including text-based questionnaires and in-person focus groups was conducted with 16 family members of people with aphasia. Thematic analysis was completed to identify experiences in early acute care. An additional 7 family members served as “checkers” to validate that the derived themes were consistent with their own experiences during acute hospitalization of their family member with aphasia.

Results

Six themes were identified that described shared experiences of the participants. The themes (drawing from quotes of participants) include: “At first it’s just survival”; “There’s nothing for the family”; “They did not use the word aphasia at the beginning”; “They did not give me any information about it [how to communicate]”; “They did not really communicate with him [the person with aphasia]”; “They do not want to give you hope”. The themes were endorsed by the family checkers.

Conclusions

This initial phase of a larger project found that participating families of people with aphasia were not given sufficient support or information, contributing to a largely negative experience of the early acute phase of care.

KEYWORDS:

• Aphasia
• caregivers
• qualitative
• acute care
• patient experience

Disclosure statement

No potential conflict of interest was reported by the author(s).

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/02687038.2024.2373431.

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

The authors would like to acknowledge family members who participated in the project, and funding and support from the Aphasia Institute, including a significant contribution from people with aphasia themselves via their own iCare Fund.