Asking the Stakeholders: Perspectives of Individuals With Aphasia, Their Family Members, and Physicians Regarding Communication in Medical Interactions

Burns, Marcelline; Baylor, Carolyn; Dudgeon, Brian J.; Starks, Helene; Yorkston, Kathryn M.

doi:10.1044/2015_ajslp-14-0051

Cited by 56 publications

(69 citation statements)

References 35 publications

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“…4,25 Difficulty with expressive communication results in significant vulnerability and increases reliance on caregivers for communication support, including making health care decisions. 25,26 The loss of effective communication can result in intellectual and emotional isolation for carers. 4 Communication impairment is linked to increased medical error rates.…”

Section: Impact Of Communication And/or Cognitive Impairmentmentioning

confidence: 99%

“…4 Communication impairment is linked to increased medical error rates. 26 Preventable adverse events during acute hospital admissions are three times more likely to occur in patients with a communication impairment than in patients without communication difficulties. 27 Additionally, the failure to assess for cognitive deficits and decision-making capacity has significant health care implications for patients.…”

Section: Impact Of Communication And/or Cognitive Impairmentmentioning

confidence: 99%

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Communication and cognitive impairments and health care decision making in MND: A narrative review

Paynter

Cruice

Mathers

et al. 2019

Evaluation Clinical Practice

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Rationale Motor neurone disease (MND) is a neurodegenerative disease presenting with progressive weakness of voluntary muscles. For any condition, person‐centred health care relies on the sharing of information and a mutual understanding of the person's needs and preferences. Decision making in MND becomes more complex as there is no cure and a high prevalence of co‐morbid communication and/or cognitive difficulties. Objective To identify the reported impact of communication and/or cognitive impairment on patient and carer involvement in health care decision making in MND. Methods A review and synthesis of studies addressing issues of communication impairment and/or cognitive impairment in relation to decision making focussed on MND was conducted. Articles were excluded if they were reviews, case studies, conference papers, or commentaries. To be included studies needed to address issues of communication impairment or cognitive impairment specifically in relation to decision making. Relevant data were extracted verbatim and subjected to content analysis to support the narrative summary. Results Seventy‐six articles were identified, and 35 articles screened. Six articles met inclusion criteria each describing examples of decision making in MND. There was limited data related to communication and/or cognitive impairment, and the impact these impairments may have on decision making despite recognition that many people with MND may lose verbal communication or develop subtle cognitive impairments. The literature is primarily from the perspective of others. Conclusion This review highlights that the current body of literature exploring decision making within the MND population presents us with extremely limited insights into the impact of communication and/or cognitive impairments on health care decision making. Extant literature focuses on interventions (namely, ventilation and gastrostomy), the broad process of decision making, or cognitive assessment of decision‐making ability. Whilst most studies acknowledge that deficits in communication or cognition impact the decision‐making process, this issue is not the focus of any study.

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Section: Impact Of Communication And/or Cognitive Impairmentmentioning

confidence: 99%

Section: Impact Of Communication And/or Cognitive Impairmentmentioning

confidence: 99%

Communication and cognitive impairments and health care decision making in MND: A narrative review

Paynter

Cruice

Mathers

et al. 2019

Evaluation Clinical Practice

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“…This decreases overall satisfaction with the services they receive and exacerbates the burden on caregivers who are frequently attempting to navigate an already complex healthcare system with little to no preparation (Burns et al . , Hinckley et al . ).…”

Section: Introductionmentioning

confidence: 99%

“…Compared with people without aphasia, people with aphasia are less likely to receive information regarding their stroke and prognosis. This decreases overall satisfaction with the services they receive and exacerbates the burden on caregivers who are frequently attempting to navigate an already complex healthcare system with little to no preparation (Burns et al 2015, Hinckley et al 2013.…”

Section: Introductionmentioning

confidence: 99%

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

Shafer

Haley

2019

Intl J Lang & Comm Disor

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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.

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“…The inclusion of patients' perspectives and goals in patient–clinician communication may also be important. There is some evidence that clinicians are less patient‐centred in their communication when patients are not as assertive, of a non‐concordant culture, of lower socio‐economic status or have communication difficulties . Again, further research is required to determine the benefits of such training in terms of improving patient outcomes.…”

mentioning

confidence: 99%

Greater than the sum of its parts: patient-clinician communication education

Chan¹,

Purcell²

2017

Med Educ

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Asking the Stakeholders: Perspectives of Individuals With Aphasia, Their Family Members, and Physicians Regarding Communication in Medical Interactions

Cited by 56 publications

References 35 publications

Communication and cognitive impairments and health care decision making in MND: A narrative review

Communication and cognitive impairments and health care decision making in MND: A narrative review

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

Greater than the sum of its parts: patient-clinician communication education

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