Poster presentations - group B

PRESENTATION TIMES

Tuesday, July 25, 2023

  • 12:45 PM - 1:30 PM
  • 4:45 PM - 5:30 PM

Thursday, July 27, 2023

  • 12:45 PM - 1:30 PM
POSTER: 1B - Qualitative Study on Experiences of People with Dual Sensory Loss in Various Life Areas
Esther Veenman
Netherlands
Inform the audience about a qualitative study we conducted to explore the influence of dual sensory loss on various life areasPeople with dual sensory loss (DSL) experience challenges in various life areas due to their limited ability to use sensory compensation (e.g. using residual hearing to compensate for the visual impairment). The aim of this qualitative study was to explore experiences of people with DSL in various life areas, and how they experience sensory compensation.Semi-structured interviews were conducted with twenty adults with DSL (13 females and 7 males, age ranging from 20 to 88 years), with various causes and severities of DSL. Experiences in the areas access to information, mobility, communication and fatigue were discussed. Interviews were audio recorded, transcribed and analyzed by means of framework analysis.In the area of access to information, results show that, despite various experienced challenges, most participants were well able to function with the aid of assistive technology. Regarding mobility, most participants were able to navigate familiar environments. In unfamiliar settings, however, help was required. Having conversations in quiet settings was associated with little difficulties, whereas crowded settings were considered very difficult. Most participants mentioned that they often experience fatigue. Carefully considering daily activities helped to cope with fatigue.
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POSTER: 2B - Implementation of the Influencing Communication and Language Program (IC&L Program) by Communication Coaches
Marianne Rorije
Netherlands
Sharing results of the implementation of a video-feedback intervention by communication coaches for communication partners (CPs) of people with congenital deafblindness (CDB) by communication coaches. Previous research demonstrated the effectiveness of video-feedback communication coaching for individuals with CDB and CPs. However, the communication coach’s role has not yet been examined. Therefore, we examined how coaches implemented a newly developed video-feedback intervention, and which skills they applied.Ten coaches implemented the ICL Program, consisting of seven coaching sessions provided in three intervention phases. In each phase, there is a focus on specific observation categories and on general observation categories. General observation categories were: touch/tactile modality; communication tools & language; and communicative agency (support). Before the intervention, coaches received training about the intervention and video-feedback coaching. Then, the coach and CP applied the content of the phases. The coaches completed reports of the coach sessions, and the sessions were recorded. We analyzed the coach sessions with a developed observation list. Subsequently, analyses were performed to examine how the coaches implemented the intervention and which skills they used.The first results show that four coaches addressed 70-80% of the specific observation categories in each phase. In addition, the general observation category communication tools & language was most frequently discussed. Although the coaches demonstrated several skills, they generally did not follow the  video-feedback steps according to the instruction in the training. The results show that the coaches did not fully adhere to the intervention protocol. This provides insights for follow-up research.
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POSTER: 3B - Cross-Cultural Project on Deafblindness - Developing Deafblind Expertise across Europe
Rasmus Hougaard Pedersen
Denmark
The poster presentation will provide insight and information about an on-going project by the EU funded ERASMUS+ Programme. The project focuses on developing deafblind expertise between the Specialist Consultancy for the Deafblind in Denmark and Združenje Gluhoslepih Slovenije DLAN in Slovenia. How can various regions in Europe benefit from the different perspectives that we hold on deafblindness and deafblind issues? Being a low-prevalence group, few organisations in each country have the expertise needed to provide services for people with deafblindness. Thus, it is essential to share experiences and knowledge between organisations to keep developing the field forward. On this basis the Cross-Cultural Project on Deafblindness was initiated in 2022 between the Specialist Consultancy for the Deafblind in Denmark and Združenje gluhoslepih Slovenije DLAN in Slovenia. The purpose of this project is to share knowledge on our everyday practice working with individuals with deafblindness, and different initiatives will help to achieve this. To raise awareness about deafblind issues and to discuss different cross-cultural approaches in the deafblind field, we will organise virtual and physical theme days targeting organisations, professionals, and students. Another initiative is the translations of some of our very popular Danish booklets about deafblindness into English and Slovenian. The booklets cover several issues related to deafblindness, including tactile communication and Usher syndrome. Other initiatives in this project will be the development of articles, attendances at conferences, videos, and a brochure on the project. The need for awareness and advocacy is central to the field of deafblindness. We need to address issues about the rights and policies for people with deafblindness, and we must learn from each other to develop the field further. This cross-cultural project on deafblindness bridges the perspectives from two different European regions, and this process and our reflections might have an impact on building better deafblind practices and to promote inclusion and equality for people with deafblindness.
Services & Resources
POSTER: 4B - Perspectives of Deafblind People Within the Community After the Pandemic
Emma Boswell
UK

I have Usher syndrome Type 1 and use BSL.  I work for the charity Sense. I will draw upon my personal experience of having Usher Syndrome and managing life after the pandemic. I will include a brief description of my determination in overcoming life’s challenges and the difference positive and negative of post-pandemic. This will also cover other people’s experiences of vision, communication, relationships with friends and families, guiding-methods and access to information and how they have changed during this time and the impact on their confidence, mobility and wellbeing.

Lived-Experience Knowledge Sharing
POSTER: 5B - Creating a guide for life-long learning based on Universal Design for Learning
Namita Jacob & Graciela Ferioli
Argentina, India

The Ibero-American Plan for Literacy and Lifelong Learning of the Organization of Ibero-American States for Education, Science and Culture (OEI); together with the Ibero-American Program on the Rights of Persons with Disabilities, of the Social Group of the National Organization for the Blind of Spain (ONCE), selected and financed a team of expert professionals representing diverse training and experience. The team included members from Argentina, Brazil, Colombia, Ecuador and India who have rich experience in working with complex impairment such as deafblindness within inclusive settings. The goal of the project is to guide the readers through the creation of inclusive processes so as to enrich the educational trajectories of young people, adults and older adults by providing universal access tools and resources.The guide is based on the tenets of the Universal Declaration of Human Rights, the International Convention on the Rights of Persons with Disabilities (CRPD), the 2030 Agenda for Sustainable Development and the Universal Design for Learning. It is guides the reader through the journey from understanding their learning partner through the design of an inclusive process. At the end of the tour of the Guide they will be able to build an educational proposal for those people they accompany.The guide encourages readers to develop a vision of an inclusive world and can be a valuable resource to family members, volunteers, service providers and professionals who accompany people's educational trajectories throughout life.

Services & Resources
POSTER: 6B - Opportunities and Challenges in Connecting the Sensory Educational Landscape in Aotearoa New Zealand
Patrick Pink & Saul Taylor
New Zealand
Aotearoa New Zealand is a small country within the Pacific. Strong professional relationships are key to providing best service to young people with deafblindness and their families. Since 2017 in Aotearoa New Zealand, there has been renewed efforts to collaborate more deeply with individual sensory school services (Blind and Low Vision and Deaf and Hard of Hearing), the Ministry of Education, wider clinical sectors, and key stakeholder organisations. This long-term concerted commitment towards connecting a national landscape of sensory professionals has been led by Blind and Low Vision Education Network New Zealand (BLENNZ). BLENNZ is a nation-wide network with a rich history in deafblind pedagogy and education. Before 2017 there was the challenge of disconnectedness across the sensory education landscape and with clinical settings. Cohesive, dependable, and effective professional relationships were needed to re-establish deafblind as a distinct, unique, and diverse group of learners. This presentation provides an overview of how in the last five years BLENNZ has been solution-focused with its efforts to continue to raise awareness, review service structure and delivery, and progress evidence-based practices in deafblind education and clinical support across the country. BLENNZ's story may resonate among small countries, States or Territories seeking ideas and options for a more interconnected professional network for their future. The challenges, successes, and learning opportunities BLENNZ experiences may offer insights as it endeavours to come closer together, nationally and globally, for the benefit of making a difference for young people with deafblindness.
Services & Resources
POSTER: 7B - Social Determinants of Health and Older Adults with Deafblindness
Renu Minhas
Canada

To share the findings of a scoping review.The World Health Organization (WHO) defines social determinants of health (SDH) as non-medical factors that impact health outcomes such as food insecurity, education, income, and social protection.The extant literature regarding the relationship between the SDH and the experiences of older adults with deafblindness is examined using the Arksey and O'Malley five-stage scoping review framework. Seven databases and three journals were searched from March 2011 to March 2021. Only articles studying individuals aged 60 and older with deafblindness in the context of at least one SDH indicator were included. Of the 81 screened articles, 37 studies were deemed eligible and included in the review.Of the 10 SDH defined by the WHO, income and social protection, education, housing, basic amenities, and the environment, access to affordable health services of decent quality and disability were commonly reported among studies. We found that older adults with deafblindness were likely to have lower educational attainment, more likely to receive increased care in a long-term care home setting and have an increased risk of developing additional health conditions and disabilities. Studies did not analyze working life conditions, food insecurity, structural conflict and/or race for older adults with deafblindness. The literature linking the SDH and deafblindness is limited. It is critical for policymakers and researchers to identify the relationship between the SDH and the health inequities experienced by older adults with deafblindness to develop programs and policies that can help them age well and participate fully in their communities.

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POSTER: 8B - Independence, Aging and Transition
Fatema Kanji
Canada
To bring awareness about how aphasia affects persons who are deafblind through all the different phases in their life. To educate caregivers, Intervenors, family and the public about the affects of aphasia and aging. Having experienced working with individuals who have dementia and aphasia, it is important to understand the different stages and impacts it has on aging and deaf blindness. What is aphasia? What is dementia? How aphasia and dementia relate to persons who are deafblind? How communication has been adapted? The different forms and methods used to enhance independence?. Dementia and aphasia affect persons who are deafblind in their daily lives and there are many outlets to help achieve independent living. Somethings to explore are: Supportive communication strategies, Transition (long term care, PSW, assisted living), Intervention services, Occupational therapy (OT), Rehabilitation program, Physio therapist (PT), Speech language pathologist (SLP).
Lived-Experience Knowledge Sharing
POSTER: 9B - Self-Advocacy Skill to Achieve Equal Rights and Equal Opportunities to Full Participation in Society
Dawnelee Wright
Canada
The purpose of presentation is to share and launch the first ever Self-Advocacy Manual developed for individuals who are deafblind. Advocacy skills are very important to making  connections that improves the lives of those living with deafblindness. Information on how to advocate and knowing how to be more successful in advocating is powerful. The Deafblind Advocacy Group Canada (DAGC) was formed to address the limited resources available about self-advocacy for Canadians who are deafblind. Both co-chairs have advocated throughout their lives and began this journey to create a self-advocacy manual that could help others break down barriers to participation. They persevered to create a manual that reflects an honest perspective. They were able to learn more about advocacy after reviewing the stories shared and reflecting on their own personal paths to self-advocacy - learning through trial and error of what works best. The DAGC created a self-advocacy manual that is simple and easy to understand, is accessible and provide tips and tricks on how to break down systemic, attitudinal, educational, vocational physical and economic barriers in society that block equal opportunities and full participation in life. The presentation will share the process applied in development of the self-advocacy manual for Canadians with deafblindness including: what is self-advocacy and skill sets required for self-advocacy, a brief background on Canadian and international laws and treaties protecting the rights of persons with disabilities and how it can be used to get equal access to services and communication supports regardless of where they live in Canada. The manual will be a resource for individuals with deafblindness and others who support them.
Lived-Experience Knowledge Sharing
POSTER: 10B - Outcome Measures Identified in the Systematic Literature Review for the Development of the International Classification of Functioning, Disability and Health Core Sets for Deafblindness
Atul Jaiswal
Canada
The World Health Organization created an international classification framework called the International Classification of Functioning, Disability and Health (ICF) to develop a common language to describe health and functioning for individuals with disabilities. There has not been an ICF Core Set developed for deafblindness. The review is the first stage of the ICF Core Set Development and aims to summarize existing research articles that focus on outcome measures used to study functioning in individuals with deafblindness.Seven scholarly databases, 3 journals, and Google Scholar were searched from March 2011 to March 2021. Articles were included if they involved individuals with deafblindness aged 18 and older and examined functioning. The outcome measures/instruments used in eligible studies was identified and categorized into the following types: (1) Standardized; (2) Patient-reported measures & Standardized (PT- S); (3) Patient-reported measures & not standardized (PT-not S); (4) Health professional - reported measures - standardized (HP-S); (5) Technical measures; (6) Other Measures.9,653 studies were screened, and 131 sources met the eligibility criteria. 302 outcome measures were identified. 54 were Standardized, 55 were Patient Reported-Standardized (Pt-S), 173 were Patient Reported-Non-S (Pt-Not S), 10 Health Professional Reported - Standardized, six were Technical, and four were classified as other measures. Only 3 of the measures were deafblind-specific instruments. Most instruments measured mental health and daily functioning in individuals with deafblindness. Given there was only 3 deafblind-specific instruments identified in this review, it is recommended researchers develop outcome measures specific to the deafblind community.
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POSTER: 11B - Understanding the Effect of Face Masks on Independent Travel by Individuals Who are Blind, Deafblind or Who have Low Vision During COVID-19
Natalina Martiniello & Chantal Kreidy
Canada

The purpose of this research was to highlight the difficulties, if any, encountered by the blind and deafblind population during independent travel, due to the use of a face mask during the COVID-19 pandemic, and the strategies used to address these barriers.The goal of this study was to explore challenges caused by face masks among individuals with visual impairments, including those with deafblindness, during independent travel, and the strategies used to overcome these barriers.The data was collected through an anonymous online survey from March 29th to August 23rd 2021.In total, there were n=135 respondents between the ages of 18-79 (M=48.22, SD=14.47). Overall, n=78 (58%) self-identified as blind, n=57 (42%) as having low vision; n=13 (10%) as having a combined vision and hearing loss, and n=3 (2%) as deafblind. The most common face coverings used were cloth (89%, n=119) and surgical masks (55%, n= 74). Participants highlighted that face masks made it more difficult to locate people (64%), communicate with others (75%), and locate landmarks (61%). Results show that, although guide dog users reported the highest level of confidence with independent travel before the pandemic, they indicated the lowest level of confidence after the pandemic began. Moreover, a repeated measures ANOVA showed that mean confidence differed significantly between time points for all groups (F(1, 132) = 133.02 = .229), with those who self-identified as deafblind experiencing a significantly greater loss of confidence in comparison with low-vision and blind participants.

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POSTER: 12B - Optimizing Communication and Play for the Deaf and Blind Child, an Interdisciplinary Approach (Visual Rehabilitation Specialist, Occupational Therapist and Speech-Language Pathologist)
Daniel Dunn, Anne-Josée Dumas & Johannie Fex
Canada

Through a presentation of our objectives, therapy plans and materials, we will cast light on the how our interdisciplinary approach (occupational therapist, speech-language pathologist and visual rehabilitation specialist) benefits a Deaf/Blind child's potential through play, communication and environmental interaction. The poster will include a case study, with our intervention plan, therapy objectives, photos and videos from joint therapy sessions.  On a daily basis, we observe that by giving them the means, children with multiple disabilities know how to find resources that allow them to play, interact and participate socially in a meaningful way. Each child is unique, with an established way of communicating with their parent upon arriving to our program. We work to reveal their way of communicating and to maximize it, with equal importance for both the parent and the Deaf/Blind child. By highlighting the collaboration with the parent, their expertise, their means of communicating and the way in which they play with their child, we will share our observed developmental gains and the ways we adapt our strategies and materials to realize our objectives. The poster will also include a display of our materials and technical aids that are used during our therapy sessions, that target the combined objectives as a result of our interdisciplinary thinking and the parents’ continuous input.

Lived-Experience Knowledge Sharing
POSTER: 13B - Canadian Deaf-Blind Camp
Elio Rigglio
Canada

Experiences of Deaf-Blind Canadians who have benefitted from attending Deaf-Blind camp in Manitoba. The first national Canadian Deaf-Blind Camp (CDBC) was held in 2018, at Camp Manitou in Headingly, Manitoba. Deaf-Blind adults from across Canada, from all walks of life, gathered in Manitoba for one week to attend camp, but the effect of attending this camp continues to resonate with all who have experienced it. The hope was that Deaf-Blind Canadians would have the opportunity to gather in a camp setting to enjoy a welcoming environment where folks felt included, accepted, and could share their life experiences. Camp was held in 2018, 2019 and took place again in August of 2022. An environment of recreation with full access to communication is certainly a major contributor to reducing the isolation many folks feel and increases the opportunity for well-being. The camp is supported by many volunteers and provides a safe environment for practitioners to increase their skill set.

Lived-Experience Knowledge Sharing
POSTER: 14B - Sharing our Human Connection Experience
Angélique Mornet-Hocquard, Séverine Clement & Muriel Li Chen Che
France
In France, we talk about rare disability for deafblindness. When we hear those words, one can easily understand how much loneliness this situation can create. Thanks to neurosciences, we know how the words can shape our thinking, so we should be careful not to fall into a tunnel vision of disability. This collaboration began with the desire to transform the life experience of a deafblind person into expertise to be shared with professionals for a training (Angelique, Severine & Muriel): A: It's not easy to explain deafblindness to people or professionals when you have Usher Syndrome; S: During our conversations and the stories we’ve told each other, a topic about prejudices emerged; M: We also express our emotions, and from these moments we shared human connection; M: Beyond the label of disability, we can all learn from each other thanks to our common humanity; S: This experience taught me that it is not always necessary to have a concrete plan, this collaboration was based on equality and co-construction was present in a natural way; A: During this work, I didn't only feel like a deafblind person but really as a whole person, co-author of this project. This work is an experience of shared meaning between persons with different backgrounds. We would like to expand our collaboration with you, if you are willing to tell us your stories. In this way, we could create a dialogical platform together.
Lived-Experience Knowledge Sharing
POSTER: 15B - An Integrative Review of Interventions for Children with Deafblindness
Ann-Sofie Sundqvist
Sweden

Lifelong interventions and support. Since little is known about what support and interventions offered to children with deafblindness, the aim was to summarize and disseminate previous findings regarding this in order to form a knowledge base of tools to use within these children's habilitation or rehabilitation services or schooling.Integrative review principles were employed. A comprehensive systematic search in eight databases together with additional manual searches was conducted. Inclusion criteria were: original studies written in Danish, English, Norwegian or Swedish that were published between 2000 and 2021 examining evaluated interventions for children under 18 years of age with deafblindness, or interventions aimed at children with deafblindness but offered to their relatives or professionals involved with them.A total of 6,268 original studies were identified, and after screening and quality appraisal, 32 were included. The key outcomes from the studies were synthesized into three categories. Two of the categories illustrating the goal/intention of the intervention (social interaction and communication, motivation and participation) and one focusing on or identifying the action taken to benefit the child (adaptation of the educational environment). The category social interaction and communication was dominant, covering 24 of the 32 included studies.

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