Using intervention mapping to develop an intervention for multiparty communication with people with congenital deafblindness.

BACKGROUND: Due to their dual sensory impairment, people with congenital deafblindness (CDB) are rarely naturally involved in other people's conversations. Their communication partners find it challenging to include them in group conversations. However, overhearing others communicate is important for developing social and communication skills. Hence, we developed an intervention program to guide communication partners in offering multiparty communication to people with CDB. This article describes how the program was developed through an intervention mapping approach. METHOD: Intervention mapping is a six-step process: logic model, model of change, program design, program production, program implementation plan, and evaluation plan. These six steps were applied to systematically develop a program to foster multiparty communication in people with CDB. Representatives of the involved groups participated in the project group and the working group to ensure feasibility and acceptability. RESULTS: Following the intervention mapping steps resulted in creation of a program for communication partners that consists of an education session, practicals, and four video-feedback sessions. Information sessions for practitioners and managers were also developed. The program was implemented incrementally with program implementers in each organization. A subjective evaluation and an impact evaluation were done after each implementation phase. DISCUSSION: Intervention mapping was used to develop a program that connects theory to practice. The program appeared to meet the communication partners' needs and be feasible in terms of time investment. This article offers suggestions for broadening the scope of the program to other settings and for further investigating the effects of the program on the social and communication skills of people with CDB.

Understanding the perceptions and experiences of the deafblind community about digital games.

PURPOSE: Participation and accessibility issues faced by gamers with multi-sensory disabilities are themes yet to be fully understood by accessible technology researchers. In this work, we examine the personal experiences and perceptions of individuals with deafblindness who play games despite their disability, as well as the reasons that lead some of them to stop playing games. MATERIALS AND METHODS: We conducted 60 semi-structured interviews with individuals living with deafblindness in five European countries: United Kingdom, Germany, Netherlands, Greece and Sweden. RESULTS: Participants stated that reasons for playing games included them being a fun and entertaining hobby, for socialization and meeting others, or for occupying the mind. Reasons for stop playing games included essentially accessibility issues, followed by high cognitive demand, changes in gaming experience due their disability, financial reasons, or because the accessible version of a specific game was not considered as fun as the original one. CONCLUSIONS: We identified that a considerable number of individuals with deafblindness enjoy playing casual mobile games such as Wordfeud and Sudoku as a pastime activity. Despite challenging accessibility issues, games provide meaningful social interactions to players with deafblindness. Finally, we introduce a set of user-driven recommendations for making digital games more accessible to players with a diverse combination of sensory abilities.IMPLICATIONS FOR REHABILITATIONDigital games were considered a fun and entertaining hobby by participants with deafblindness. Furthermore, participants play games for socialization and meeting others, or for occupying the mind.Digital games provide meaningful social interactions and past time to persons with deafblindness.On top of accessibility implications, our findings draw attention to the importance of the social element of gaming for persons with deafblindness.Based on interviews, we introduce a set of user-driven recommendations for making digital games more accessible to players with a diverse combination of sensory abilities.

Interventions for adults with deafblindness - an integrative review.

PURPOSE: To compile the current research on interventions for rehabilitation aimed at adults (aged 18-65 years) with deafblindness. MATERIALS AND METHODS: A comprehensive search was conducted in eight databases. An additional manual search was also carried out. A total of 7049 unique references were initially identified, and after screening, 28 original scientific articles were included. The results from these articles were categorized based on limiting consequences of deafblindness: communication, orientation and to move around freely and safely and access to information, as well as to psychological adaptation to deafblindness. RESULTS: Fourteen of the included articles had their main focus on access to communication, ten on orientation and the ability to move around feely and safely, three on the opportunity to gain access to information, and one related to psychological adaptation to deafblindness. Most articles focused on technical devices, of which one-third were single case studies. CONCLUSION: There is a limited number of evaluated interventions for people with deafblindness. Most of the existing studies involved one to five participants with deafblindness, and only few studies involved a larger number of participants. More research with a larger number of participants are needed, which could be facilitated by international cooperation between practitioners and researchers.

Deaf-Blindness through the Voices and Experiences of Parents and Educators.

This qualitative study used the experiences of parents and educators to explore the developmental processes and behaviors of deafblind people of different ages and with different etiologies. It also explored which strategies of intervention and care employed by parents and educators best promote and stimulate the abilities and the autonomy of deafblind people. Eligible parents and educators were identified and recruited from the New York Parents Association for Deafblind and the Helen Keller National Center on Long Island using purposeful sampling. Seven mothers, one father, and two educators were interviewed using a narrative method. Data analysis was performed using Heideggerian hermeneutic phenomenology. The themes that emerged concern communication, expression of emotions, sense of self and external reality, autonomy, and the sphere of educational intervention. This research goes beyond existing knowledge on the syndromes/disabilities related to deafblindness, focusing instead on the combinations of varying degrees of hearing and sight deprivation.

Increasing the autonomy of deafblind individuals through direct access to content broadcasted on digital terrestrial television.

Digital terrestrial television currently incorporates accessibility elements for the deaf (closed captions, CCs) and for the blind (audio description and audio navigation), however the deafblind population has particular accessibility needs that to date have not been met. This work presents a technical aid (a mobile application called GoAll) developed to increase the autonomy of deafblind individuals, allowing direct access to content broadcast on digital TV through the reading of CCs either with a mobile device or a Braille display. The information in this study is based on the data generated by the application server during the 5 months it was in operation in Spain as well as data from a usability survey conducted on nine deafblind individuals. The results show that 55% of the people used the application between 5 and 7 days a week and did so in the most popular time slots; those surveyed watch news, movies, documentaries, reality shows, and entertainment shows. Noteworthy is fact that all survey respondents said they felt they had greater autonomy with this application. The limitations of the proposed solution involve two elements: Braille reading (knowledge and speed of reading) and the constraints of CCs, since they are used as an input for technical assistance.

Life strategies of people with deafblindness due to Usher syndrome type 2a - a qualitative study.

Purpose: To explore life strategies in people with Usher syndrome type 2a. Background: There are no studies on life strategies in people with Usher syndrome. People with deafblindness are often described in terms of poor health and low quality of life, or as being vulnerable. From a clinical point of view, it is of importance to balance this picture, with an increased knowledge of life strategies. Methods: The study had a qualitative explorative design. Fourteen people aged 20-64 years (4 women, 10 men) with USH2a in Sweden participated in focus group interviews, which were transcribed and analysed by qualitative content analysis. Results: The content analysis resulted in seven categories; remaining active, using devices, using support, sharing knowledge, appreciating the present, maintaining a positive image and alleviating emotional pain. Two sub-themes: resolve or prevent challenges and comforting oneself was abstracted forming a theme "being at the helm". Conclusion: The findings show that people with USH2a have a variety of life strategies that can be interpreted as highlighting different aspects of psychological flexibility in a life adjustment process. The study demonstrates that people with USH2a manage in many ways, and metaphorically, by "taking the helm", they strive to actively navigate towards their own chosen values.

Participation experiences of people with deafblindness or dual sensory loss: A scoping review of global deafblind literature.

BACKGROUND: Deafblindness, also known as dual sensory loss, is a varying combination of visual and hearing impairment in the same individual. Interest in this topic has increased recently due to evidence suggesting an increase in prevalence of this condition among older adults. Persons with deafblindness frequently experience participation barriers and social isolation. Developing an understanding of their experiences can inform the design of programs and policies to enhance participation of people with deafblindness in society. OBJECTIVE: To identify and summarize available research literature on participation experiences of people with deafblindness or dual sensory loss. METHODS: A comprehensive literature search of eight databases (CINAHL/EBSCO, Embase, ERIC, Global Health, MEDLINE, ProQuest, PsycINFO, PubMed) was performed in accordance with the Preferred Reporting Items for Systematic Reviews (PRISMA) during January 2017 and last updated in June 2017. In addition, non-peer reviewed (grey) literature was also retrieved in the form of online published reports of research projects by 16 deafblind-specific organizations across the globe. To be included, sources had to be published after 1990, had persons with deafblindness as the focal population, and focused on their participation experiences. RESULTS: A total 1172 sources were identified of which 54 studies were included. The findings reveal that persons with deafblindness, regardless of origin of their impairment, experience difficulty in communication, mobility, daily living functioning, and social interactions. While these experiences may vary between individuals with congenital versus acquired conditions, they generally feel socially isolated, insecure and uncertain about their future. CONCLUSION: Participation experiences of persons with deafblindness are shaped by dynamic interactions between personal factors (such as onset and type of impairments) and environmental influences (such as attitude, technology, and supports). A better understanding of participation experiences may help professionals in placing emphasis on affected participation domains to design services to enhance participation of people with deafblindness.

Effectiveness of a nurse-supported self-management programme for dual sensory impaired older adults in long-term care: a cluster randomised controlled trial.

OBJECTIVE: To evaluate the effectiveness of a nurse-supported self-management programme to improve social participation of dual sensory impaired older adults in long-term care homes. DESIGN: Cluster randomised controlled trial. SETTING: Thirty long-term care homes across the Netherlands. PARTICIPANTS: Long-term care homes were randomised into intervention clusters (n=17) and control clusters (n=13), involving 89 dual sensory impaired older adults and 56 licensed practical nurses. INTERVENTION: Nurse-supported self-management programme. MEASUREMENTS: Effectiveness was evaluated by the primary outcome social participation using a participation scale adapted for visually impaired older adults distinguishing four domains: instrumental activities of daily living, social-cultural activities, high-physical-demand and low-physical-demand leisure activities. A questionnaire assessing hearing-related participation problems was added as supportive outcome. Secondary outcomes were autonomy, control, mood and quality of life and nurses' job satisfaction. For effectiveness analyses, linear mixed models were used. Sampling and intervention quality were analysed using descriptive statistics. RESULTS: Self-management did not affect all four domains of social participation; however. the domain 'instrumental activities of daily living' had a significant effect in favour of the intervention group (P=0.04; 95% CI 0.12 to 8.5). Sampling and intervention quality was adequate. CONCLUSIONS: A nurse-supported self-management programme was effective in empowering the dual sensory impaired older adults to address the domain 'instrumental activities of daily living', but no differences were found in addressing the other three participation domains. Self-management showed to be beneficial for managing practical problems, but not for those problems requiring behavioural adaptations of other persons. TRIAL REGISTRATION NUMBER: NCT01217502; Results.

A relationship-focused investigation of spousal psychological adjustment to dual-sensory loss.

OBJECTIVES: The relationship intimacy model of psychosocial adjustment to illness indicates that a patient's willingness to communicate about their illness, as perceived by the spouse, is a strong predictor of spouse relational and psychological well-being. Inspired by the relationship intimacy model, the current study examined the psychological adjustment of spouses of individuals with dual-sensory loss (DSL), a disability where interpersonal communication is of particular concern. METHOD: Surveys were sent to all known individuals and their partners who were 50 years of age or older and were enrolled in services for acquired DSL in Denmark. A total of 65 spouses met the inclusion criteria of which 45 (69%) returned a partner survey. RESULTS: Results showed a significant association between couples' sensory loss-related communication, relationship satisfaction, perceived support and psychological well-being. Perceived support significantly mediated the association between couples' sensory loss communication and spouse psychological well-being. CONCLUSION: The current study's findings provide support for a relationship-focused perspective of spousal psychological adjustment in the context of DSL. Further, couples' sensory loss-related communication is presented as a potential intervention target to enhance spouse perceived support and psychological well-being.

National Provisions for Certification and Professional Preparation in Low-Incidence Sensory Disabilities: A 50-State Study.

A multimethod study examined the 50 U.S. states' preparation and licensure practices regarding students with low-incidence sensory disabilities (LISD). The researchers used document review and structured interviews with state education agency representatives. It was found that institutions of higher education (IHEs) in 38 states offer at least one LISD preparation program; 12 states offer no programs at all. Further, program intensity, a measure of state capacity to serve students with LISD, varies from 0 to about 3 programs per million state residents. States also differ by the regime used to qualify teaching candidates, using either licensure or endorsement. Nationally, being an LISD licensure regime is, all else being equal, negatively correlated with number of LISD programs. The findings suggest that many states lack the capacity to supply enough trained professionals to serve students with LISD. Recommendations are framed for states, national organizations, and IHEs.

Availability of Mental Health Services for Individuals Who Are Deaf or Deaf-Blind.

A survey of state mental health agencies found that a majority have no specific policy or procedure regarding how to provide mental health services to persons who are deaf or who are deaf-blind. Agency representatives report that staff lack knowledge of how to provide mental health services to persons who are deaf-blind and the agencies lack qualified interpreters. They recommend training for social workers and counselors to address best practices in working with people who are deaf-blind concerning communication methods and strategies, physical interaction, cultural issues, everyday life, sensory deprivation, ethics, use of an interpreter, and other general issues.

Critical Issues in the Lives of Children and Youth Who Are Deafblind.

The coeditors of an American Annals of the Deaf special issue on deaf-blindness introduce readers to critical issues surrounding children and youth who are deafblind. These issues-early identification, communication, social-emotional needs, family and multicultural issues, universal design and assistive technology, transition planning, and personnel preparation-are explored further in the articles that follow. By way of introduction, the present article provides definitions of deafblindness and a discussion of the heterogeneous nature of the population. The history of the field of deafblindness is then explored in terms of three distinct population shifts, from (a) individuals of the 18th and 19th centuries who became deafblind due to illness, to (b) the influx of individuals with congenital rubella syndrome in the 1960s who had disabilities besides deafblindness, and

Early Identification of Infants and Toddlers With Deafblindness.

Data from the 2014 National Center on Deaf-Blindness Count show that fewer than 100 infants and toddlers are currently identified with deaf-blindness across the United States and that identification rates for this population vary greatly from state to state. The author presents a key rationale for timely and accurate identification of early-onset deafblindness and of the challenges involved in current early identification practices. Health and educational providers play a vital role in efforts to understand the impact of deafblindness on early development, high-risk conditions, and diagnoses associated with pediatric deafblindness, as well as the warning signs of early-onset hearing and vision loss. Subsequent to diagnosis, medical treatments may be available to restore or augment sensory functioning. Therefore, early detection and identification of deafblindness should serve as a catalyst for prompt referral to appropriate early intervention services for both child and family.

The State of Research on Communication and Literacy in Deafblindness.

In a synthesis of the research, the authors present findings from communication and literacy studies conducted with children and youth with deafblindness, ages 0-22 years, and published in peer-reviewed journals, 1990-2015. Findings are organized within the structure of the four aspects of communication: form, function, content, context. The studies implemented child-guided and systematic instructional approaches. Studies on form addressed tangible representations, gestures, pictures, and technologies to increase expressive communication rates, and included research focusing on specific functions. Most of the research on context addressed the coaching of adult communication partners to improve responsiveness. Research on communication by children who are deafblind has focused almost exclusively on improving expressive communication. Therefore, there is a need for research on receptive communication and comprehension. In the area of literacy, studies are needed on emergent literacy and reading and writing interventions for children who are deafblind.

Social-Emotional Development in Children and Youth Who Are Deafblind.

Social-emotional development is important to personal adjustment and well-being. Little has been written about social-emotional development in children and youth who are deafblind. The authors discuss factors in typical social-emotional development-attachment, empathy, and friendships-and how they may be challenged in children who are deaf-blind. Also reviewed are factors that place children who are deafblind at risk for delays in social-emotional development. Finally, the possible benefits of inclusion to the social-emotional development of children who are deafblind are examined.

Recognizing the Needs of Families of Children and Youth Who Are Deafblind.

Research on deafblindness and families is scant. The few available studies, in combination with research in the areas of visual impairment, hearing impairment, and significant support needs, help paint a picture of the services and other assistance required by families, including siblings of a child with deafblindness. In the present article, the authors synthetize the literature related to families of students who are deafblind and the supports needed by these families. The article also addresses the impact of the diagnosis on the family, supports needed by the family, including the contributions of siblings of the child who is deafblind, and considerations of cultural, linguistic, and economic diversity within the deafblind population. Online resources for professionals who work with students who are deafblind and their families are listed.

Technology Implementation and Curriculum Engagement for Children and Youth Who Are Deafblind.

The authors discuss the research of education professionals concerned with children and youth with deafblindness, presenting three theoretical frameworks and models useful for integrating technology into learning environments: (a) UDL (universal design for learning; Meyer, Rose, & Gordon, 2014), (b) SETT (student, environment, task, tools; Zabala, 2005), (c) SAMR (substitution, augmentation, modification, redefinition; Puentedura, 2014). Although the promise of technology in teaching children and youth with deafblindness is undisputed, a review of the extant research shows that little guidance is available on what technology tools may be efficacious and how these tools should be implemented. In the absence of research and in an age of rapid technological innovation, the authors suggest that all students with deafblindness will benefit if professionals use assistive and instructional technology frameworks to provide these children and youth access to and engagement in equitable learning experiences in inclusive settings.

An Overview of Transition Planning for Students Who Are Deafblind.

Children who are deafblind are one of the lowest-incidence yet most diverse groups receiving services mandated by the Individuals With Disabilities Education Improvement Act. Despite this population's diversity, the development of communication skills is critical for all children who are deafblind, and is the foundation on which good transition planning can be built. The authors describe key research findings and other professional literature on transition planning and services guided by the quality of life principle. The role of the individualized education program and case law in transition planning is discussed. Through a person-centered approach to transition planning, a coordinated set of activities designed to support the young adult in moving from school to postschool settings and activities is identified. The authors conclude that effective transition efforts will involve extensive collaboration among school and agency professionals, families, and the young adult who is deafblind.

Toward a Comprehensive System of Personnel Development in Deafblind Education.

Students who are deafblind are a unique population with unique needs for learning, communication, and environmental access. Two roles have been identified as important to their education: teacher of the deafblind and intervener. However, these roles are not officially recognized in most states. Because of this lack of recognition and the low incidence of deafblindness, it is difficult to sustain systems that prepare highly qualified personnel with advanced training and knowledge in educational strategies for children and youth who are deafblind. The authors propose a comprehensive system of personnel development (CSPD) for deafblind education. The components of this system are standards, preservice training, in-service/professional development, leadership development, research, and, finally, planning coordination, and evaluation. The authors describe elements of the model that are being implemented and provide suggestions to support the future development of a comprehensive system.

Analysis of Interaction and Attention Processes in a Child With Congenital Deafblindness.

Children with deafblindness need support to be able to understand the world and to have access to information. The authors analyzed a dyad consisting of a child with congenital deafblindness and a specialized teacher. The study included participant observations and audiovisual recordings. It was found that the child showed attention to the teacher in activities involving music and rhythm. As potential forms of nonverbal communication, the child presented vocalization, touch, body contact, body movements, facial expressions, and tears. The teacher's forms of communication were verbal, touch, visual, rhythm, and sign language. It was concluded that a significant communication partner is essential to identify, interpret, and respond to attention and communicative behaviors. Use of other forms of communication must comply with individual characteristics so that the child with deafblindness can receive information from the environment through these senses and thus be guaranteed access to the world.