"It's Our Gang" - Promoting Social Inclusion for People with Dementia by Using Digital Communication Support in a Group Activity.

OBJECTIVES: In the present paper we aim to contribute to the understanding of how people with dementia experience using a web-based communication support application on a tablet computer in a group activity. The specific focus of the present paper is on perception of social inclusion among people with dementia in a group activity using digital communication support. METHODS: The study is based on interviews with participants in a communication group for people with dementia where the application CIRCA, specifically designed to support interaction involving people with dementia, was used. Five individuals with dementia were recruited from a residential care home where they lived in different wards. Seven group interviews with the participating persons with dementia following directly after each session were carried out. RESULTS: The views of the participants were generally very positive, regarding many aspects of the activity. In the present study, the group activity seemed more important and beneficial for the participants, than the specific use of the application in itself. CONCLUSIONS: Taking part in a group activity targeting communication made participants with dementia feel that they were part of a social group, that they had learnt things, and that they had been able to contribute with their expertise to others. CLINICAL IMPLICATIONS: Group activities targeting communication give people with dementia the opportunity to exercise their social inclusion practices. Group activities may render a feeling of social community and a sense of belonging to the participants. The use of digital communication support may enhance such activities.

Participation and Enjoyment in Play with a Robot between Children with Cerebral Palsy who use AAC and their Peers.

This study explores children with complex communication needs, their peers and adult support persons in play with the talking and moving robot LekBot. Two triads were filmed playing with LekBot at pre-school. LekBot was developed to facilitate independent and enjoyable play on equal terms for children with significant communication disabilities and their peers. Using Conversation Analysis, participatory symmetry and enjoyment were investigated in relation to spoken and gestural communication, embodied stance, gaze, and affective display. Data originated from three video-recorded sessions that were approximately 2 hours long. Four different interaction situations were identified and explored: Participatory Asymmetry, Adult Facilitation, Greater Participatory Symmetry and Creativity, and Turn-taking and Enjoyable Play with LekBot. Neither participatory symmetry nor enjoyment were easily achieved in the play sessions and may require considerable effort, including adult involvement, but creative, spontaneous and highly enjoyable play, correlating with participatory symmetry to various degrees, was observed in a few instances. The findings are discussed with regard to play, AAC and the future development of robots to facilitate play.

Semantic trouble sources and their repair in conversations affected by Parkinson's disease.

BACKGROUND: It is known that dysarthria arising from Parkinson's disease may affect intelligibility in conversational interaction. Research has also shown that Parkinson's disease may affect cognition and cause word-retrieval difficulties and pragmatic problems in the use of language. However, it is not known whether or how these problems become manifest in everyday conversations or how conversation partners handle such problems. AIMS: To describe the pragmatic problems related to the use of words that occur in everyday conversational interaction in dyads including an individual with Parkinson's disease, and to explore how interactants in conversation handle the problems to re-establish mutual understanding. METHODS & PROCEDURES: Twelve video-recorded everyday conversations involving three couples where one of the individuals had Parkinson's disease were included in the study. All instances of other-initiated repair following a contribution from the people with Parkinson's disease were analysed. Those instances involving a trouble source relating to the use of words were analysed with a qualitative interaction analysis based on the principles of conversation analysis. OUTCOMES & RESULTS: In 70% of the instances of other-initiated repair the trouble source could be related to the semantic content produced by the individual with Parkinson's disease. The problematic contributions were typically characterized by more or less explicit symptoms of word search or use of atypical wording. The conversation partners completed the repair work collaboratively, but typically the non-impaired individual made a rephrasing or provided a suggestion for what the intended meaning had been. CONCLUSIONS & IMPLICATIONS: In clinical work with people with Parkinson's disease and their conversation partners it is important to establish what type of trouble sources occur in conversations in a specific dyad. It may often be necessary to look beyond intelligibility and into aspects of pragmatics to understand more fully the impact of Parkinson's disease on everyday conversational interaction.

Patterns of communicative interaction between a child with severe speech and physical impairments and her caregiver during a mealtime activity.

BACKGROUND: Interaction between caregivers and children with severe impairments is closely related to the demands of daily activities. This study examines the relationship between interaction and the routine mealtime activity at home. METHOD: Patterns of interaction between a child (aged 6 years and 6 months) with severe speech and physical impairments and her caregiver (focus dyad) and a child without impairments (aged 6 years and 6 months) and her caregiver (comparison dyad) were analysed using video recordings and activity-based communication analysis. RESULTS: The focus dyad's interaction was unaided. The dyad did not use the Blissymbol board but communicated using words, vocalisations, word approximations, and body communication. Interaction in the focus dyad included relatively few pauses and frequent interchanges of short and sometimes simultaneous communicative contributions. Strong relations between patterns of interaction and immediate activity management goals such as assisting with eating, eating and drinking were found and compared for the two dyads. Results were discussed with regard to child development and communication intervention. CONCLUSIONS: The focus dyad showed interactive efficiency and the fulfilment of goals relating to basic understanding and closeness, but mainly with regard to immediate mealtime issues. The comparison child and caregiver were more independent in the activity which made it possible for them to reach more extensive, and from a child perspective, age-adequate goals than the focus dyad.

Measuring responsive style in parents who use AAC with their children: development and evaluation of a new instrument.

The aim of this study was to develop and evaluate an instrument - the Responsive Augmentative and Alternative Communication Style (RAACS) scale Version 2 - to assess the communicative style of parents as they interact with their children using augmentative and alternative communication (AAC). This scale was used to analyze play interactions between 43 parents and 28 children with different diagnoses (including Down syndrome, autism, cerebral palsy, and intellectual disability), aged between 12 and 60 months. Parent-child interactions were observed both before and after parent participation in ComAlong, a training course on using responsive communication and AAC to support interaction with children. Based on an analysis of the results, Version 3 of the RAACS scale was developed and is recommended for future use. Analyses of Version 3 showed acceptable inter- and intra-coder reliability, and excellent internal consistency.

Communication between parents and neonatal healthcare professionals using pictorial support when language barriers exist - parents' experiences.

PURPOSE: Families arriving in Sweden after being forced to flee their home need health care. Communication is a key component to establishing good care relations and becomes difficult when there are language barriers between families and healthcare professionals. In the context of neonatal care, communication is carried out with parents. The aim of the study was to describe parents' experiences of communication with neonatal healthcare professionals and using pictorial support when language barriers exist. METHOD: The study takes a qualitative approach based on seventeen interviews with parents who had experienced neonatal ward. Qualitative content analysis was used. RESULTS: The parents needed to communicate through supports, which caused distress and misunderstanding. The relationship between parents and the healthcare professionals affected the communication. Pictorial support was used to different degrees. Four categories were identified from the data analysis: Communicating through supports, Facing barriers in communication, Facing external influences and The need for a good healthcare relationship. CONCLUSION: The present study is the first to describe parents' experience with using the pictorial support developed in the project KomHIT Refugee and therefore fulfils the function of being a first evaluation of the pictures from parents' perspective.

The ComAlong communication boards: parents' use and experiences of aided language stimulation.

This study evaluated parents' use and experiences of the ComAlong communication boards, which were provided to them during a parental course on communication development, responsive strategies, and augmentative and alternative communication (AAC). Quantitative and qualitative data was collected through a survey of 65 parents and an in-depth case study of four of the parents. Questionnaires, interviews, logbooks, and video recordings showed that parents used the ComAlong boards and experienced an increased understanding of augmentative and alternative communication. Most parents reported that their children showed an interest in the boards and that in some cases started to use the boards functionally in communication. Parents' views, in terms of gains and difficulties of using graphic communication at home, are discussed.

Using Talking Mats to support communication in persons with Huntington's disease.

BACKGROUND: Many individuals with Huntington's disease experience reduced functioning in cognition, language and communication. Talking Mats is a visually based low technological augmentative communication framework that supports communication in people with different cognitive and communicative disabilities. AIMS: To evaluate Talking Mats as a communication tool for people in the later stages of Huntington's disease. METHODS & PROCEDURES: Five individuals with Huntington's disease participated in the study. Three conditions were compared: unstructured communication, verbally structured communication, and communication using Talking Mats. The conversations were videotaped and analysed quantitatively and qualitatively. OUTCOMES & RESULTS: Talking Mats increased communicative effectiveness for all participants. Verbally structured conversation resulted in higher effectiveness than the unstructured counterpart and effectiveness differed depending on the type of conversational topic. CONCLUSIONS & IMPLICATIONS: Talking Mats could be a valuable resource for people with Huntington's disease and their conversation partners. It could be used for social purposes, for understanding a person's opinions and for making decisions. Additional research is necessary in order to generalize the results to the population of individuals with Huntington's disease and to understand better the mechanisms behind the positive effects observed.

Support persons' views on remote communication and social media for people with communicative and cognitive disabilities.

Purpose: The purpose of this study was to explore support persons' views on remote communication for persons with communicative and cognitive disabilities, and on factors enabling self-determination and participation.Materials and methods: Five focus groups with 21 support persons were conducted. They were recorded and transcribed and data were analyzed qualitatively using focus group analysis methodology.Results: The participants experience how remote communication can enable users to have increased control in their lives and how remote communication can enable self-determination and participation. Access to remote communication has a dual effect on safety. There are experiences about communicative rights of the users not being met and there is a need for better access to technology, information, and experts. There is also a need for more competence and coordination among staff and support to the users. Challenges emerge in the support persons' dedication to the users' right to communicate.Conclusion: People with communicative and cognitive disabilities need access to remote communication in order to have control over their own lives and to achieve self-determination and participation in society. Support persons carry a large responsibility and can provide valuable insights of users' communication situation.Implications for rehabilitationRemote communication is important for safety; it is necessary to be able to call for help independently.To ensure the communicative rights of people with communicative and cognitive difficulties, professionals must provide assessments of standard technology or assistive technology for remote communication.There is a need for more support to and education of staff from the professions. The users themselves are also in need of long-term support.Support persons face ethical dilemmas regarding user safety on social media and internet and need guidelines and support.

Implementation of pictorial support for communication with people who have been forced to flee: Experiences from neonatal care.

A first attempt was made to introduce picture-based communication at a Swedish neonatal ward to facilitate communication with immigrant patients having fled their country of origin. Six members of staff were interviewed about their experiences using semi-structured dyadic interviews. Their answers were analysed using inductive content analysis, and the results were related to a theoretical framework called Promoting Action on Research Implementation in Health Services. The staff found the pictures to be helpful in communication with refugees. They were motivated to use the pictorial support and experienced a great need for it. Two key prerequisites for successful implementation were identified: receiving training and having a person formally in charge of the implementation process.

"That is how I speak nowadays" - experiences of remote communication among persons with communicative and cognitive disabilities.

PURPOSE: The aim of the study was to explore the experiences of remote communication (i.e., communication between persons who are not in the same place) among people with communicative and cognitive disabilities. MATERIALS AND METHODS: Eleven adolescents and adults were interviewed using Talking Mats and interview data was analyzed qualitatively with systematic text condensation. RESULTS: The use of remote communication varies between the participants. The participants also value remote communication differently. Having the possibility to choose between different means of remote communication is important. Being able to determine whether to communicate independently or with support from another person is also valued as relevant. Strategies used to manage remote communication include facilitating for the communication partner and preparing for future communication situations. Those who are able to use writing as an alternative to problematic spoken remote communication like phone calls, for example by using chat or text messaging. Decisions regarding means of communication and human support relate to the concept of self-determination. CONCLUSION: Better access to remote communication trough assistive technology such as speech synthesis and picture symbols would make remote communication easier and facilitate participation for people with communicative and cognitive disabilities. Implications for rehabilitation People with communicative and cognitive disabilities face challenges with access to remote communication. Access to communication technology including remote communication is important for self-determination, for personal safety and for overall participation in society. Communication technology should be considered in the rehabilitation process and training is crucial. To understand the possible benefits of remote communication, people with communicative and cognitive disability need to get the possibility to practice. Professionals play a key role in the assessment and intervention of remote communication for their patients.

Digital communication support and Alzheimer's disease.

Communication is one of the areas where people with dementia and their caregivers experience most challenges. The purpose of this study is to contribute to the understanding of possibilities and pitfalls of using personalized communication applications installed on tablet computers to support communication for people with dementia and their conversational partners. The study is based on video recordings of a woman, 52 years old, with Alzheimer's disease interacting with her husband in their home. The couple was recorded interacting with and without a tablet computer including a personalized communication application. The results from the present study reveal both significant possibilities and potential difficulties in introducing a digital communication device to people with dementia and their conversational partners. For the woman in the present study, the amount of interactive actions and the number of communicative actions seem to increase with the use of the communication application. The results also indicate that problems associated with dementia are foregrounded in interaction where the tablet computer is used.

Problematic topic transitions in dysarthric conversation.

PURPOSE: This study examined the nature of topic transition problems associated with acquired progressive dysarthric speech in the everyday conversation of people with motor neurone disease. METHOD: Using conversation analytic methods, a video collection of five naturally occurring problematic topic transitions was identified, transcribed and analysed. These were extracted from a main collection of over 200 other-initiated repair sequences and a sub-set of 15 problematic topic transition sequences. The sequences were analysed with reference to how the participants both identified and resolved the problems. RESULT: Analysis revealed that topic transition by people with dysarthria can prove problematic. Conversation partners may find transitions problematic not only because of speech intelligibility but also because of a sequential disjuncture between the dysarthric speech turn and whatever topic has come prior. In addition the treatment of problematic topic transition as a complaint reveals the potential vulnerability of people with dysarthria to judgements of competence. CONCLUSION: These findings have implications for how dysarthria is conceptualized and how specific actions in conversation, such as topic transition, might be suitable targets for clinical intervention.

Talking Mats in a discussion group for people with Huntington's disease.

PURPOSE: To evaluate the function of Talking Mats (TM) in a discussion group for people with Huntington's disease (HD). METHOD: Four persons with HD and their group leader participated. The group was videotaped during four discussions, two with and two without TM. A mixed method quantitative and qualitative study was implemented by evaluating the conversations using the protocol Effectiveness Framework of Functional Communication by analyzing the number of follow-up questions and by post discussion interviews. RESULTS: The results showed improved effectiveness of communication for all participants and an increased number of follow-up questions, both from the group leader and from some of the participants. All participants and the leader were positive regarding the use of TM but there were also drawbacks. CONCLUSIONS: TM could be useful in discussion groups for people with HD. An increased number of follow-up questions when TM is used may lead to a deeper understanding within the group. This study is the first of its kind and more research in the area is needed. [Box: see text].