Caregivers navigating rehabilitative care for people with aphasia after stroke: a multi‐lens perspective

Abstract

Background Up to 40% of stroke survivors acquire aphasia and require long‐term caregiver assistance after discharge from the hospital. Caregivers assume multiple roles as they help people with aphasia to access outpatient rehabilitative care in an increasingly person‐centred model of care. Examining caregiver roles and how different stakeholders in the rehabilitative journey perceive these roles may be the first step in providing more tailored support to caregivers and improving outcomes for both caregivers and people with aphasia. Aims To characterize the roles caregivers assume while navigating outpatient rehabilitative care for people with aphasia after stroke from the perspective of different stakeholders in the rehabilitative process. Methods & Procedures Thirty‐six people participated in the study, including seven caregivers, 22 stroke survivors with aphasia and seven healthcare providers. Focus groups were conducted, and an iterative thematic analysis was used to identify themes. Outcomes & Results Results indicate that caregivers are perceived differently by varying stakeholders, and that caregivers adopt diverse roles as advocates, therapists, motivators and guardians. They assume these roles in order to fill gaps in services or otherwise to facilitate the recovery journey for the person with aphasia. Conclusions & Implications This study provides a valuable glimpse into how varying stakeholders view the role of the caregiver during rehabilitation for people with aphasia after stroke. Providing caregivers with the training and support they need throughout the recovery journey by treating them as partners in the process may mitigate the perception of caregivers as feeling compelled to adopt multiple roles.

Information, communication, advocacy, and complaint: how the spouse of a man with aphasia managed his discharge from hospital

“…We believe these letters complement her interview account and we argue that it is appropriate to revisit this data and share this story despite the time that has elapsed since the data was collected. This is not only because Rhona requested that we do so, but also because, as demonstrated in the introductory review, the issues of inadequate information, poor communication, and exclusion from discharge planning raised in this narrative remain current, both in Australia and beyond (Rose et al, 2019 ; Shafer et al, 2019 ). In addition, the combination of these two sources of data is valuable, and the letters offer an unusual opportunity to explore these issues in a novel way.…”

“…Avent et al (2005) suggested that many family members of people with aphasia felt "so overwhelmed, you don't know what you need" (p. 371) and did not even know what questions to ask. Shafer et al (2019) included seven family carers of people with aphasia in their study. They found:…”

“…Avent et al ( 2005 ) suggested that many family members of people with aphasia felt “so overwhelmed, you don’t know what you need” (p. 371) and did not even know what questions to ask. Shafer et al ( 2019 ) included seven family carers of people with aphasia in their study. They found: A consistent message was that caregivers faced difficulties in educating themselves and that their need for education and information was largely overlooked by healthcare professionals.…”

“…For example, Hilari et al ( 2007 ) described family members acting as proxies particularly when the aphasia was very severe. Shafer et al ( 2019 ) found that family members perceived their key role to be an advocate, representing their loved one with aphasia, actively seeking additional services and educating themselves about stroke and aphasia particularly when health professionals did not provide sufficient information. Little has been written on family members acting as advocates for people with aphasia in hospitals although research has explored how families advocate for loved ones with communication difficulties due to cerebral palsy and complex communication needs (see Hemsley et al ( 2016 ) for a summary).…”

Exploring The Challenges Faced by Informal Home Based Palliative (HBP) Caregivers in Ndola District, Zambia.

“…This could also escalate the hospital admission rates and diminish the bed capacity for emergency cases. Inadequate resources as alluded to earlier on leads to frustration of the Caregivers and subsequent poor care delivery (Shafer, Shafer, & Haley, 2019). The research participants reported lack of resources to support the informal HBP caregivers.…”