Emotional, Relational, and Identity Shifts in Aphasia Caregiving: An Interpretative Phenomenological Analysis of Care Partner Experiences.
Eleanor Siegle, Brooke Boxrud, Stewart A Shankman and 2 others
Care partners of people with aphasia described conversations losing their depth, feeling pressured to stay relentlessly positive while hiding their own anger and sadness, and taking on roles — financial manager, informal therapist, social advocate — that reshaped who they are.
Key findings
1Ten out of thirteen care partners described conversations with their loved ones as surface-level and procedural rather than relational, and some reported pretending to understand in order to protect the person with aphasia's feelings.
2Care partners described feeling pressured to maintain relentless positivity for the person with aphasia while suppressing their own anger and resentment, and reported that this suppression amplified rather than buffered their negative emotions.
3Care partners described a drastic shift in their sense of self as they took on multiple new roles — financial provider, informal therapist, and social advocate — that reshaped their identity and altered family dynamics.
Still to come
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What it does not show
Secondary data analysis — the focus groups were collected for a different purpose and re-analysed here, so the questions were not designed specifically for this research question. No formal member checking was performed; the authors justified this by citing IPA's double hermeneutic, but this limits the ability to verify that themes match participants' intended meanings. Social desirability in a group setting may have led care partners to underreport the most negative aspects of caregiving, skewing findings toward more optimistic accounts. Seven of thirteen participants held graduate degrees, which the authors acknowledge may limit generalisability to care partners with different educational backgrounds. Small sample (13) from a single recruitment channel (community phone calls and emails), limiting transferability.
Declared interests
Funded by the National Institute on Deafness and Other Communication Disorders (NIH, award K23DC020757). The authors declare no conflicts of interest.
The easy way to misread this
Do not read these themes as a universal description of all aphasia caregiving — the sample was 13 people, seven of whom held graduate degrees, the data were collected for a different study and re-analysed here, and the authors note that the focus group setting may have encouraged participants to present themselves positively, potentially underreporting the most difficult aspects of caregiving.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →