Barbara Purves

Personhood in dementia care Developing a research agenda for broadening the vision

Dementia has been understood primarily as a biomedical phenomenon with a trajectory of irrevocable decline related to neurodegenerative changes. However, growing evidence suggests that the performance and behaviour of persons with dementia are not exclusively determined by neuropathology but are also influenced by personal histories, social interactions and social contexts. This evidence shifts attention from the disease process to the need for a more in-depth understanding of the place of personhood in dementia care. Despite its intuitive appeal however, there is limited empirical research grounding this approach to care. This article articulates a framework for organizing research in this area that is based on a critical review and synthesis of research. It encompasses three interrelated and intersecting domains of inquiry: the subjective experience of the person with dementia, the immediate interactional environment and the broader socio-cultural context. Each domain encapsulates a unique but interrelated dimension of a person-centred approach to dementia care.

The participatory design of a sound and image enhanced daily planner for people with aphasia

Aphasia is a cognitive disorder that impairs speech and language. From interviews with aphasic individuals, their caregivers, and speech-language pathologists, the need was identified for a daily planner that allows aphasic users to independently manage their appointments. We used a participatory design approach to develop ESI Planner (the Enhanced with Sound and Images Planner) for use on a PDA and subsequently evaluated it in a lab study. This methodology was used in order to achieve both usable and adoptable technology. In addition to describing our experience in designing ESI Planner, two main contributions are provided: general guidelines for working with special populations in the development of technology, and design guidelines for accessible handheld technology.

The Field Evaluation of a Mobile Digital Image Communication Application Designed for People with Aphasia

PhotoTalk is an application for a mobile device that allows people with aphasia to capture and manage digital photographs to support face-to-face communication. Unlike any other augmentative and alternative communication device for people with aphasia, PhotoTalk focuses solely on image capture and organization and is designed to be used independently. Our project used a streamlined process with three phases: (1) a rapid participatory design and development phase with two speech-language pathologists acting as representative users, (2) an informal usability study with five aphasic participants, which caught usability problems and provided preliminary feedback on the usefulness of PhotoTalk, and (3) a one-month field evaluation with two aphasic participants followed by a one-month secondary field evaluation with one aphasic participant, which showed that they all used it regularly and relatively independently, although not always for its intended communicative purpose. Our field evaluations demonstrated PhotoTalks promise in terms of its usability and usefulness in everyday communication.

A visual recipe book for persons with language impairments

Cooking is a daily activity for many people. However, traditional text recipes are often prohibitively difficult to follow for people with language disorders, such as aphasia. We have developed a multi-modal application that leverages the retained ability of aphasic individuals to recognize image-based representations of objects, providing a presentation format that can be more easily followed than a traditional text recipe. Through a systematic approach to developing a visual language for cooking, and the subsequent case study evaluation of a prototype developed according to this language, we show that a combination of visual instructions and navigational structure can help individuals with relatively large language deficits to cook more independently.

Insights from the aphasia project: designing technology for and with people who have aphasia

This paper explores a number of HCI research issues in the context of the Aphasia Project, a recently established project on the design of assistive technology for aphasic individuals. Key issues include the problems of achieving effective design and evaluation for a user population with an extremely high degree of variance, and user-centered design for a user population with significant communication impairments. We describe the Aphasia Project and our initial approaches to dealing with these issues. Similar issues arise in many areas of assistive technology, so we expect our paper to be of general interest to the research community.

The ethnographically informed participatory design of a PD application to support communication

Aphasia is an acquired communication deficit that impacts the different language modalities. PDAs have a form factor and feature set that suggest they could be effective communication tools for people with aphasia. An ethnographic study was conducted with one participant both to learn about communication strategies used by people with aphasia, and to observe how a PDA is incorporated into those strategies. The most significant usability issues found were file access and organization. A participatory design phase followed, resulting in a paper prototype of a file management system that addressed the key usability issues identified. The participatory approach continued during the implementation of a high-fidelity prototype.

Involving domain experts in assistive technology research

Teams engaging in assistive technology research should include expertise in the domain of disability itself, in addition to other areas of expertise that are more typical in human–computer interaction (HCI) research, such as computer science and psychology. However, unexpected problems can arise when HCI researchers do not adequately plan the involvement of domain experts in a research project. Although many research teams have included domain experts when designing assistive technologies, there has been little work published on how to best involve these experts in the research process. This paper is a first step towards filling that void. Based on the authors’ own experiences involving domain experts in research, as well as those documented in the literature, five types of domain experts and three broad roles that domain experts can play are identified, and five guidelines for their involvement are presented. This analysis will be useful to anyone in the assistive technology and universal accessibility communities, especially those who are in the early stages of conducting research in this area. It is intended to lay the foundation of best practices for involving domain experts in assistive technology research.

The design and field evaluation of PhotoTalk: a digital image communication application for people

Talk is an application for a mobile device that allows people with aphasia to capture and manage digital photographs to support face-to-face communication. Unlike any other augmentative and alternative communication device for people with aphasia, PhotoTalk focuses solely on image capture and organization and is designed to be used independently. Our project used a streamlined process with 3 phases: (1) a rapid participatory design and development phase with two speech-language pathologists acting as representative users, (2) an informal usability study with 5 aphasic participants, which caught usability problems and provided preliminary feedback on the usefulness of PhotoTalk, and (3) a 1 month field evaluation with 2 aphasic participants, which showed that both used it regularly and fairly independently, although not always for its intended communicative purpose. Our field study demonstrated PhotoTalks promise in terms of its usability and usefulness in real life situations.

Shifting Patterns of Everyday Activity in Early Dementia: Experiences of Men and Their Families

In this article we draw from a larger study to examine experiences of two men and their families as they negotiate changing patterns of everyday activity in the months after receiving a diagnosis of dementia. We conducted in-depth interpretive phenomenological analysis of interview and observational data that were gathered from the men and various members of their families (n = 7) over a period several months. Findings are presented as three themes: The best kind of man (highlighting participants’ historical positioning); It’s a little different now (recognizing challenges posed by the dementia); and You have to do something (showing how the men and their families responded to and accommodated these challenges). We discuss these findings in terms of how everyday activity is not only important for supporting personhood in dementia, but it also contributes to sustaining family identity, and does so in a way that is deeply influenced by gender and masculinity.

The Design and Field Evaluation of PhotoTalk: A Digital Image Communication Application for People with Aphasia

PhotoTalk is an application for a mobile device that allows people with aphasia to capture and manage digital photographs to support face-to-face communication. Unlike any other augmentative and alternative communication device for people with aphasia, PhotoTalk focuses solely on image capture and organization and is designed to be used independently. Our project used a streamlined process with 3 phases: (1) a rapid participatory design and development phase with two speech-language pathologists acting as representative users, (2) an informal usability study with 5 aphasic participants, which caught usability problems and provided preliminary feedback on the usefulness of PhotoTalk, and (3) a 1 month field evaluation with 2 aphasic participants, which showed that both used it regularly and fairly independently, although not always for its intended communicative purpose. Our field study demonstrated PhotoTalk’s promise in terms of its usability and usefulness in real life situations.