INTRODUCTION

The aim of this doctoral research project is to understand what is important to people who, because they have a communication disability, use communication aids to help them to interact with others about the technology they rely on. Communication aids are not just tools that support interaction but can also be a means by which users achieve agency and realise opportunities. At the heart of this project is the desire to develop a greater understanding of what factors are important within the user-technology interaction and how the technology enables interaction with the wider world. Philosophical, methodological and technological tensions have emerged during the administration of this project and unravelled some of the fabric of the initial research design. Inter-disciplinary opportunities for collaboration have disrupted preconceived ideas about the research protocol, offering up new and more colourful ideas and materials in their place. The intention for presenting these experiences is to ignite peer critique and discussion about the new fabric of this project. The ultimate aim is to facilitate the development of methods that enable the inclusion of people with communication disability, not only in this research project but also more widely, in decision-making in healthcare, design of technology and greater interaction with the world at large.

BACKGROUND

Speech, language and communication (SLC) difficulties directly affect up to 20% of the population at some point during a lifetime [1].  Communication aids, or augmentative and alternative communication (AAC), is one method used to support those people. AAC includes strategies that involve simple technology such as pointing to objects, letters or pictures as well as electronic or computer-based systems that turn messages into synthesized speech. Approximately 1 in 150 people in England (0.5% of the population) have significant communication difficulties and could benefit from using AAC [2].   Funding for AAC is available via the National Health Service (NHS) in England [3]. The Unspoken Voices project aims to develop our understanding about what is important to people who rely on AAC about the technology, how they use it and what supports them to use it. This information can be used to develop tools that support decision-making and outcome measurement in NHS services. Conducting research with people who have communication difficulties can be challenging. Adjustments to traditional health research methodology are necessary to ensure that results are trustworthy and authentic [4].

 TENSIONS

Governance vs. accessibility

A group of people who use communication aids was recruited to advise on the project to ensure the integrity of the research and the methods. Initially, the group was established in line with guidance from INVOLVE on running patient and public involvement sessions (PPI) [5]. During the initial meeting, it became clear that group dynamics were significantly affected by experts' communication disabilities and their use of communication aids. The organization of the group required careful reconsideration in light of the particular needs of the experts. Participatory design principles inspired the methods and materials that were employed within subsequent expert group, to positive effect [6]. The group was refocused from being reliant on discussing specific agenda items to more active involvement in the topics of interest. By using objects, pictures and technology, experts were immersed in topics concerning the research project, resulting in a more organic conversation. Participatory design is a co-design method rooted in the civil rights movement of the 1960s [7] but has only recently gained traction in research and product design with people who have communication difficulties. Several co-design methods have been identified as being of value in the development of technologies to support therapy with communication disability [8]. There is still relatively little evidence of the effectiveness of employing such methods however. It is now imperative to use and report on innovative mechanisms of co-design with people who have communication difficulties so that they can be evaluated for effectiveness and integrated into common practice. The utility of co-design methods in health research was formative in the development of the expert group and has been used in software design with people who have communication difficulties. This led to further consideration about whether other design or creative methods could benefit other aspects of the project.

Scientific vs. creative methods

Understanding the experience of people who rely on communication aids requires qualitative research methodology [9]. The initial project protocol presented semi-structured interviews as the method of choice. Capturing the “multi-modal” nature of communication will be critical to the project as people who rely on communication aids rarely employ one strategy to support them and frequently use non-verbal methods to support their message [10]. On a quest to identify the most appropriate method for capturing these data, led the author back to creative research-methods. The use of creative research methods in social sciences is becoming increasingly prevalent, with several innovative methods now recognized and reported [11]. Research in healthcare continues to be dominated by positivism and interventions are still largely informed by a medical model of service

delivery i.e. assessment, diagnosis and treatment [12]. One reflection on the use of creative methods in health research is concerned with how to manage the data that emerge in order that they are considered suitably rigorous to inform clinical practice. The possibility for enriching the project through use of deeper, thought-provoking and less frequently used methods is enticing; but how to do this while maintaining the integrity and rigor of the research in the eyes of healthcare peers and funders presents a challenge. Engaging networks of professionals who are skilled and experienced in both fields has provided an opportunity to jointly navigate the creativity-science interface. Recruiting team members from across disciplines is one mechanism used by the Unspoken Voices Project. Learning from peers who have experience across arts and health has been another. There is a residing tension inherent in working across health research and the arts but skilled and experienced individuals, sharing practice and disrupting traditional ways of thinking, is one of the ways we can build valuable outputs.

Function vs. form

Communication aid design has, as is true for many aspects of design for disability, largely been dominated by problem-focused engineering solutions [13]. Communication aid technology tends to try to address the physical, cognitive and communicative challenges faced by an individual. Less attention has been paid to how professionals can capture what is of importance to the people who are going to rely on such equipment [14]. Human communication is not solely concerned with the exchange of messages but also more subtle interaction that enables social closeness and the expression of one’s identity [15]. Communication aid technology has largely ignored such aspects of interaction, focusing instead on functional, message-oriented systems. Hardware development for communication aids has also erred towards function over form. Technological solutions are computer-based, robust, mountable and accessed via directly touching a keyboard or indirectly accessing a switch that controls on-screen functions. The focus has been on replicating or replacing language-based systems. Some thoughtful attempts at recreating elements of non-verbal communication have been attempted ([13], Chapter: “expression meets information”) but are yet to make it market. A collaboration with Art and Design colleagues at Sheffield Hallam University has resulted in a negotiated project being set whereby masters students will explore the nature of communication and create their own responses to the challenges of producing a communication aid. The intention of this collaboration is to build on previous attempts to develop communication aids that are less about function and more about form and experience. Viewing communication through a creative lens may inform the development of communication aid solutions and open up possible design solutions that can express meaning beyond words.

DISCUSSION

There are multiple tensions woven into the fabric of the Unspoken Voices Project. What do communication aid-users value most about the technology that they rely on? Is it the devices themselves and what they enable the user to achieve? Or do they value something else entirely? How do professionals explore this information with people who have difficulties communicating? Can a hypothesis-driven health-research design provide enough flexibility to allow for novel outcomes or observations? Does experience-focused design methodology offer the rigor demanded by evidence-based practice in the healthcare services that issue communication aids? These are some of the emerging tensions that are influencing the development of the Unspoken Voices Project. Opening the door to alternative philosophies and methods has disrupted the plan for the project while concurrently providing a perspective that may result in a more authentic message; because it will be generated from a closer relationship with the stories of people who rely on communication aids. Collaboration across disciplines, between professionals and with end users may be the most effective way of integrating design methods and a creative perspective into a coherent project. The multi-coloured fabric of such a research project needs to be strong, attractive and usable if it is to ultimately be of value to the population it represents.