Is Informed Consent a “Yes or No” Response? Enhancing the Shared Decision-Making Process for Persons with Aphasia
ABSTRACT Respect for patient autonomy and the need to have a comprehensive discussion of the risks and benefits of a medical intervention are two important issues involved in the process of obtaining informed consent. In dealing with individuals with aphasia, there may be particular challenges in balancing these two ethical imperatives. Although decision-making capacity may be preserved with aphasia, the patients' ability to fully participate in a dialogue regarding a proposed medical intervention is frequently impaired. We propose a process of enhancing informed consent for persons with aphasia while continuing to respect and enhance patient autonomy and the exercise of decision making for these patients. The use of a patient-selected "helper" during the informed consent process can improve the quality of the informed consent, while reserving final decision-making authority for the patient.
SourceAvailable from: Abby Foster[Show abstract] [Hide abstract]
ABSTRACT: Background: The role of speech pathologists working in the acute hospital setting has evolved away from service provision to people with aphasia and their families towards a stronger focus on dysphagia. Evidence-based practice (EBP) can be conceptualised as the integration of four streams of evidence: research-based clinical evidence, clinical expertise, patient preferences and values, and the practice context. EBP is an important tenet in current healthcare. However, it is not clear whether speech pathologists in the acute setting are using EBP to support their aphasia management. Not adopting evidence-based approaches to care has the potential to result in a negative impact on people with aphasia and their families, healthcare services, and speech pathologists, who experience a sense of dissonance related to their current service provision This paper explores acute aphasia management through an EBP lens in an attempt to better understand this dilemma. Aims: This paper applies the conceptual framework of EBP to acute aphasia management. An extensive, systematically conducted review of the international literature relating to health professionals was undertaken. The findings are presented as a narrative literature review. Main Contribution: This paper describes and evaluates how the different streams of research evidence, clinical expertise, patient preferences and values, and the practice context contribute to speech pathologists’ management of acute aphasia. Further, the paper identifies current gaps in the literature and suggests a research agenda for the field. Conclusions: Little is known about how speech pathologists integrate and implement the different streams of evidence in EBP, and how these contribute to acute aphasia practice. Speech pathologists report that clinical guidelines containing low-level evidence are the main source of research information. Other sources of knowledge include colleagues, professional development events, and websites. Additional challenges to the management of people with aphasia in the acute hospital setting may be posed by the physical environment, the culture of the acute hospital setting, and the provision of leadership to support evidence-based approaches to care. The challenge of using a person-centred approach to care for people with aphasia is acknowledged. Further research exploring speech pathologists’ perceptions of their role in acute aphasia management, the clinical decision-making process of speech pathologists in relation to acute aphasia management, and the experiences of people with aphasia and their families in the acute setting is required. This will allow for the design of patient-centred approaches to care, and enable the implementation of evidence-based acute aphasia management.Aphasiology 04/2013; 27(4):420-443. DOI:10.1080/02687038.2013.770818 · 1.73 Impact Factor
[Show abstract] [Hide abstract]
ABSTRACT: This paper describes stakeholder perspectives on good practice in dysphagia support in the disability service context. Twelve adults with dysphagia were interviewed. Twenty-four allied health professionals, sixteen family members and seventeen disability support workers (DSWs) completed a questionnaire and three focus groups for DSWs were conducted. Results indicated overwhelming support for a range of service improvements including mandatory training for support workers. Findings will be used to inform an organisational dysphagia support standard and to promote service reform.
[Show abstract] [Hide abstract]
ABSTRACT: Background: The process of obtaining informed consent from people with communication difficulties is challenging. An online survey was conducted to explore the experiences of stroke research staff in seeking consent from this population. Objectives: To identify how stroke research staff seek consent from people with communication difficulties, potential barriers to effective practice, and ways to improve practice. Methods: All research staff working for the National Institute for Health Research Stroke Research Network in England were invited to complete an online questionnaire. Data were collected anonymously between March and June 2013. Quantitative data were analyzed using descriptive statistics, and qualitative data were coded using thematic analysis. Results: Seventy-five research staff responded, corresponding to a response rate of 10%. There were 97% who had sought consent from people with communication difficulties and 52% did this regularly; 65% had received training in consenting this population. Most staff were aware of appropriate methods for supporting communication needs, but only 18% regularly used accessible information and 35% regularly used augmentative communication techniques. Lack of specific training and lack of access to ethically approved materials were suggested barriers to using these methods. Respondents indicated that people with impaired communication may be excluded from the consent process because they are not eligible for inclusion in studies or because assent is obtained from third parties. Conclusions: For research staff to work more effectively with this population, study protocols need to be more inclusive of people with communication difficulties, and staff need better access to ethically approved, accessible communication resources and appropriate training. Key words: aphasia, communication, consent, strokeTopics in Stroke Rehabilitation 10/2014; 21(5):443-451. DOI:10.1310/tsr2105-443 · 1.22 Impact Factor