SIGNIFICANCE: This study is significant because it provides an informed view of the caregiving relationship from the perspective of persons with aphasia (PWA), leading to improved means for clinicians to support self-efficacy and social interaction, thereby increasing quality of life for individuals with aphasia and their caregivers.

INNOVATION: The current study is innovative because it will use qualitative interviews to obtain the perspective of PWA, and report the views of PWA on the caregiving relationship. Currently, when PWA are included in studies, they are often assessed using close-ended survey questions. Little is known about the PWA’s view of the caregiving relationship. A qualitative study will allow researchers to gain a thorough knowledge base of the perspective and needs of PWA. A further innovation of this study is its use of supported communication techniques. These supported communication techniques include writing down key words, gesturing, drawing pictures of key concepts, using short sentences and simple words, and verifying the responses of the PWA.

In this study attempts to answer the following research question: What impact do spouses and partners of PWA have on the communication and social interactions on PWA? This research is critical to understanding the social interactions of an underserved population. It also contributes to the body of knowledge, as most of the current research regarding PWA comes from the perspective of an informant.

METHOD: This study used a prospective cohort design and semistructured qualitative interviews to understand the lived experiences and perspectives of PWA on the caregiving interaction. Participants were recruited from the Cognitive Rehabilitation Research Group Stroke database at the Washington University School of Medicine. All potential participants were contacted via telephone to determine eligibility and interest in the study. Inclusion criteria were as follows: (1) aged 18 yr and older, (2) living with a spousal/partner caregiver in the community, (3) able to give informed consent, (4) able to understand interview questions with the aid of supported communication techniques, and (5) able to tolerate a 2-hr interview session. Exclusion criteria included the following: (1) aphasia not caused by stroke, (2) global aphasia at the acute hospital stay as indicated by a score of 3 on the Best Language section of the National Institutes of Health Stroke Scale (NIHSS), (3) inability to speak or understand English language, (4) inability to travel to testing site via a car or taxicab provided by the study, and (5) severe medical or psychiatric illness. All participants met the inclusion criteria and had mild-to-moderate aphasia caused by a stroke. Participants ranged in age from 49 to 72 yr, with an average age of 60.3 yr. The sample was balanced in terms of gender, with 3 women and 3 men with aphasia participating in interviews.

RESULTS: Following data analysis, four major themes emerged from the interviews. All spoke to the transactional nature of language and the idea that language is a critical part of how individuals relate to one another. The four themes were unique and individualized communication strategies, control over communication, changes to spouse/partner relationship, and common bonds.

CONCLUSION: These findings address a major gap that exists in the literature by highlighting the barriers and facilitators in social interactions from the perspective of PWA. These findings also contribute to the body of knowledge on this underresearched population of people who make up a large segment of the poststroke community. PWA were able to have their voices heard on several important issues, including social interactions and communication with spouses and loved ones. Although aphasia is a language impairment, it is important to note the impact that a communication deficit can have on social engagement and the ability to participate in meaningful occupations. Limitations of this study include a small sample size as well as excluding participants with global aphasia and comorbid diagnoses.