Vulnerability,health information right and the contributions of augmentative and alternative communication for people with aphasia

Abstract

Due to impaired communication, people with aphasia are often in a vulnerable situation and face barriers in accessing health information. This article discusses the contributions ofaugmentative and alternative communication for people with aphasia in optimizing communication, improving language recovery, and mainly in providing education and increasing access to healthinformation. This can be translated into a positive impact on respect for autonomy right, well-being, quality of life, and health outcomes (further participation in the decision-making process, involvement,independence, and control of the rehabilitation process). Health professionals, including nurses, must have communication skills to communicate effectively with this population and also be prepared to useaugmentative and alternative communication strategies.

Introduction

Even if aphasia is a highly individualized and unique experience, important restrictions on communication can lead to changes in identity, behaviors, and roles, including in the family and social sphere, as well as thoughts of loss of self, feelings of psychological separation, frustration, and fear, among others.^1–3 Accentuated feelings of loneliness, isolation, sadness, and apathy are often present. ⁴ Communication impairment limits independence, participation in life activities and inherently affects the quality of life.^1,5

Communication is essential to quality healthcare as it is integral to effective clinical assessment, health promotion, and patient autonomy. ² Respect for patients’ autonomy is a crucial biomedical ethical principle that all health professionals have to honor. ⁶ A cornerstone of patient autonomy is the requirement that patients must be provided with the information needed to make informed decisions regarding their health care. ⁷ In addition, the health professional must always get the patients’ informed consent. Accessible and valid informed consent requires that the patient shows an understanding of the clinical situation and the procedure under discussion. ⁷

Because of impaired communication, people with aphasia (PWA) are often in a condition of severe vulnerability, ⁸ incapable of protecting their interests, ⁶ and can be at particular risk of losing their autonomy. ⁹ Their ability to transmit symptoms, question, or request care are compromised, as well as their ability to express fears, feelings, needs, wills, choices, and decisions concerning their healthcare. The most vulnerable must be protected using scientific and technological knowledge to encourage information according to the rights of the personal enlightened will in favor of human dignity. ¹⁰

Patients’ present and future health are influenced by their knowledge and understanding of their health condition. ¹¹ PWA face difficulties in accessing proper healthcare because of inadequate patient education by health professionals who have lack communication training and are unprepared to use Augmentative and Alternative Communication (AAC). ¹² Besides language recovery, effective communication is essential to holistic care and positive outcomes for individuals affected by aphasia. ²

PWA have the right to be informed about their clinical situation, have an alternative to communicate and formulate questions, and be involved with decisions regarding their health and social care.^13,14 Among other health information, PWA need to be informed about their aphasia diagnosis, what aphasia is, the aphasia-specific community, and the treatment services available. ¹¹ Although PWA may have decision-making capacity preserved, the ability to fully participate in a dialogue is frequently impaired ⁷ requiring the use of compensatory strategies or alternatives to natural speech. Previous research suggests that AAC has the potential to enhance PWA communication, including with chronic, severe Broca's, and global aphasia. ¹⁵

Contribution of AAC

AAC involves strategies, tools, and techniques to support the communicative interactions of PWA with health professionals and their conversational partners. ⁵ Those include no-technology, low-technology, and high-technology approaches (including applications for mobile devices). ⁵

An “ideal” AAC approach should be applied for restoration and compensation, as it simultaneously facilitates speech recovery and compensates for deficits, including high-technology AAC.^5,16 Using AAC can allow PWA to express themselves, formulate questions and facilitate the participation of PWA in the decision-making process. ¹⁶ It can also reduce the risk of negative outcomes related to health care and increase safety by ensuring that each PWA can communicate effectively when using different AAC types at the different points of the rehabilitation process. ¹⁷ The evidence of the effectiveness of high-technology AAC in supporting PWA continues to grow. ⁵ High-technology AAC applications may offer a feasible method for educating PWA which can be used as an aided support in conjunction with other techniques, increasing their access to health information (e.g. diagnosis, prognosis, and treatment plan), without prior training or input from health professionals. ¹² Previous research performed supports that mobile computing has the unique potential to deliver a range of functions, such as providing education. ¹⁸

AAC strategies can help to empower PWA to fully participate, have more autonomy, independence, and control of the rehabilitation process, which has a positive psychological effect and improves well-being, quality of life, and health outcomes.^5,19–21 The choice of AAC strategy must be individualized and adapted to each individual.

Roles and responsibilities of health professionals

Providing PWA with the appropriate tools to establish communication skills at the beginning of their recovery and train them can contribute to more effective and efficient communication, despite the severity of the communication impairment. ²⁰

PWA have the right to effective communication, and like any human being, PWA have the universal right to have access to health information. Being understood in communication is essential for care. ²² Ideally, health professionals, including nurses, must be prepared and have communication skills to communicate effectively with PWA ² and help the person and the family to overcome this situation as well as possible. ²² Ideally, they should also know and be prepared to use the existing AAC that can improve access to health-related information by PWA, including high-technology AAC.

As the range of AAC solutions that currently exist is vast, it is crucial to have deep knowledge about their characteristics and modes of operation so that associated with a global knowledge of the person, to choose the strategy that best suits each person. ²³ Even though technology is a challenge, health professionals must ensure that the focus is on the person, respecting ethical principles and the individuality of the human being. Health professionals must pay attention to the factors that influence the successful implementation of the AAC strategy. Therefore, the selection of the most appropriate AAC strategies must carefully consider several factors, like the environment, situation, skills, goals, and individuals’ choices, as well as significant people. ²⁰

Raising awareness of the importance and pre-service education in AAC for healthcare professionals, who provide care to PWA and other individuals with complex communication needs, including nurses, should start in the university level education, which differs across the different health professionals’ academic programs. Clinical experience in AAC, investing in postgraduate training, and developing research in this area are central for professionals to get and improve knowledge and skills in supporting people who use AAC. AAC professionals’ training should improve skills in AAC assessment, intervention, AAC symbols and systems, cultural competence, problem-solving, and collaborative skills. ²⁴

Conclusions

AAC, especially high-technology devices, are efficient in optimizing communication, improving language recovery of PWA, and also in providing education, and increasing their access to health information. This can be translated into a positive impact on well-being, quality of life, and health outcomes, including further participation in the decision-making process, involvement, independence, and control of the rehabilitation process.

It is elemental to raise awareness among health professionals about the crucial contributions of using AAC strategies for PWA, both academically and clinically. Ensuring effective and successful communication of PWA must be a shared responsibility of health care providers, including nurses, who should receive training on AAC.

It is essential to continue studying AAC strategies, particularly high-technology AAC, that can help this population to better understand and to be better informed regarding issues related to their health, which promotes respect for human dignity and autonomy. This knowledge is especially important for health professionals who contact directly with PWA.