Poster presentations - group a


Tuesday, July 25, 2023

  • 10:30 AM - 11:00 AM
  • 3:15 PM -   3:45 PM

Friday, July 28, 2023

  • 10:45 AM - 11:15 AM
POSTER: 1A - Questionnaires Assessing the Impact of Dual Sensory Loss on Various Life Areas: A Systematic Review
Esther Veenman
To inform the audience on a review we have conducted on questionnaires useful in assessing functioning of people with dual sensory lossPrevious literature has shown dual sensory loss (DSL) to be a condition with unique challenges. Therefore, it is important to utilize appropriate measuring instruments in clinical practice and research. The aim of this systematic review was to identify and evaluate the quality of questionnaires assessing the impact of DSL on various life areas.Four databases were searched for studies developing or evaluating quality of questionnaires measuring the impact of vision and/or hearing loss on access to information, mobility, communication or fatigue. The COSMIN Risk of Bias checklist was used to assess the quality of the included questionnaires.The literature search resulted in 6848 references. No questionnaires were found that specifically assess the impact of DSL on one of the areas of interest. However, various questionnaires were found that contain useful items. This study resulted in an overview of questionnaires that contain useful items for the assessment of the impact of DSL on access to information, mobility, communication and fatigue. However, no DSL-specific questionnaires were identified. It is highly recommended that future research is aimed at developing adequate questionnaires for DSL; the items identified in this study might be used for this purpose.
Latest Research
POSTER: 2A - Making the Impossible Possible: How Awareness of Using Technology Can Make a Difference
Eric van Heuvelen
As a member of the DBI Technology Network I would like to create awareness of the impact that technology can have on those living with congenital deafblindness. At Bartiméus, a leading center of expertise for people with a visual impairment in the Netherlands, we strife to make the lives of those living with congenital deafblindness as self-sufficient as possible. We cater to the needs of this target group within education, work, and residential care. We have set up a special taskforce called 'The FabLab' that tries to find technological solutions that fit the daily needs and struggles of those with visual impairments and congenital deafblindness. In this poster I would like to showcase some practical examples and illustrate how our unique approach to technology can help to get from a problem to solution. Technology can be the key solution to the daily struggles and battles that a person with cognitive impairments and congenital deafblindness must face. For this target group technology can make the difference between being dependent on a teacher/ carer, being more self-sufficient, feel safe or be more independent. Our unique approach to technology and congenital deafblindness has inspired teachers, healthcare professionals and occupational therapists which lead to tailormade solutions and opportunities for many other people with dealing with same challenge.
Lived-Experience Knowledge Sharing
POSTER: 3A - Ageing with an 'Invisible' Disability: Dual Sensory Impairment in the Australian Context
Moira Dunsmore & Annmaree Watharow

Drawing on a grounded theory study involving qualitative interviews with twenty-three participants(age>60 years); this presentation provides an overview of the shared experiences of DSI and explores the 'hidden work of caring' in a DSI context. Dual Sensory Impairment (DSI) refers to the presence of both vision and hearing loss and is considered a poorly defined chronic condition, prevalent in the older Australian population. DSI is underdiagnosed and if left untreated or, without appropriate support, undermines the ability of older people to live independently. DSI is associated with multiple social, physical, cognitive and emotional challenges and responsibility for caring for this group predominantly falls to family members, often with limited support. The caring dyad (family carer and family member with DSI) experience shared barriers to their social participation which compromise access to health care and social support networks, impacting their health and quality of life. This qualitative study selected participants (n=23) with DSI and their family carers from Vision Australia, who met the inclusion criteria. All participated in semi-structured interviews where broad issues relating to the social experiences of DSI were explored. Data suggests that informal caring in a DSI context is prevalent in the older DSI population, and that family carers misunderstand and minimise the social effects of DSI. Identification, targeted support and education of informal carers is important to improving outcomes.

Latest Research
POSTER: 4A - Usher Syndrome Post Pandemic
Emma Boswell

Life after the Pandemic Usher service - This exciting session will be an enlightening and essential introduction into the intercultural, communicational, and medical aspects of Usher syndrome. There will be a focus on the key challenges that CV19 brought and how they were overcome by many. This will lead into new and exciting hybrid ways of working now and for the future. How do people with Usher feel when everything is back to normal? Do they feel different? Struggling? Have guiding methods changed? An opportunity for some Usher people to share their views and experiences with you. How our Usher service works with the Usher community as well as the professionals. There will be tips and insights into enabling engagement and community work to take place effectively and meeting the needs of this disparate community group. There will be something for everyone to learn and will be relevant to those with an interest in Deafblindness.

Lived-Experience Knowledge Sharing
POSTER: 5A - Communication for Deaf-Blind People in Zambia: A SWOT Analysis
Rachel Chomba

The research will attempt to analyse the communication methods used with critical focus on their strength and weaknesses as well as provide recommendations on what can be done to improve the communication access for persons with deaf-blindness. Deaf-blindness is defined as concomitant hearing and visual impairments, the combination of which causes such severe communication needs. Some people are Deaf-blind from birth. Others may be born deaf or hard-of-hearing and become blind or visually impaired later in life. Vision and hearing are the primary senses through which we collect information. The development of social skills and environmental interaction of individuals who are deaf-blind is affected when these channels for receiving information are impaired or not functioning. Some deaf-blind use natural signs for communication. Others know the tactile sign languages of their countries. However, there is need to understand how these communication strategies are employed effectively to ensure that persons with deaf blindness have access to valuable information needed for their survival. The study will take a qualitative approach and a case study design will be used.

Services & Resources
POSTER: 6A - The Social Construction of Congenital Deafblindness in Relation to Education: An Analysis in East and Central Africa
Ismael Byaruhanga
Congo, The Democratic Rep
To Investigate the importance of social construction of congenital deafblindness (CDB) when planning special needs education servicesThe social construction of deafblindness in Europe in relation to education has been positively shaped by the position of international organizations working in the field of disabilities, whose approach is based on the universal right to education. Furthermore, universal instruments and institutions advocating on behalf of people with disabilities have strengthened their voices, which has also influenced social change and protected the identity of people with CDB. But very little is known about how CDB is socially constructed in relation to education in East and Central Africa.The study was conducted in Uganda and the Democratic Republic of the Congo, and was based on a literature review and a focus group. In the focus groups a dialogical perspective was used for acquiring knowledge through communicative interactions. The grounded theory approach and thematic analysis method were used to determine the correct coding, themes and identify patterns of meaning of different opinions.Participants attributed the causes of CDB in Uganda and the DRC to cultural and religious beliefs. The medical stance on CDB was less understood. Culture and religion were identified as dominant factors in the social construction of the position of people with CDB in the community, leading to misunderstanding and inappropriate services for them. This community misunderstanding indicates that people at the local level are likely to stick to traditional and religious practices. Changing attitudes and educational opportunities for people with CDB requires more understanding of third-party voices and the underlying barriers in these communities.
Lived-Experience Knowledge Sharing
POSTER: 7A - CDBA-BC Recreation Programs and Beyond
Theresa Tancock, Sue Gawne & Allison Mail

Since its inception in 1978, CDBA-BC has had on some level, a Summer Recreation Program for the children and youth with deafblindness that we support. This has undergone changes over the years but continues to support families in various areas and venues of BC during the summer. Through the pandemic, we had to rethink our Summer Recreation Program and developed our Virtual Recreation Program, which we have found to be a huge benefit and lots of fun for those participating all over British Columbia. We will share how the Virtual Recreation Program came to be, the benefits, the pitfalls, and the growth and expansion over the years. We have learned so much from this program and are now reaching so many more families that we support throughout the province. Through the growth of these programs, the children and youth with deafblindness, their families and Intervenors have benefitted greatly in many areas: sensory development, communication, fine and gross motor skills, social development, family/sibling networking and Intervention strategies. This recreation activity can be adapted for any funding model, organization, individual ability and setting. It is designed to offer inclusion and accessibility and reach children and youth of all ages and abilities throughout our province.

Services & Resources
POSTER: 8A - We Are Sensity Deafblind and Sensory Support Network of Canada
Samantha Gaspar
The purpose of this abstract is to share with conference participants the services and supports Sensity offers to individuals who are deafblind or their families. This poster session will also provide an opportunity to dialogue with our international partners on the supports and services that are available in their Country.Sensity Deafblind and Sensory Support Network of Canada (Sensity), has provided support and services to people who are deafblind and their families for over 30 years. Through this poster session we are excited to share information about the services Sensity offers with an interest to develop international partnerships.Sensity provides supports and services across the province of Ontario. Our services include Intervenor Services, Residential Supports, Training and Consultation, online courses and Children's and Family Services. Our poster session will provide a greater understanding of these services and provide an opportunity for participants to learn more about services offered at Sensity.I think the implications and relevance to this poster session is to provide conference participants with a greater understanding of the services and supports available through Sensity. Through the sharing of this information our hope is to mentor conference participants who may be interested in developing services in their country.
Services & Resources
POSTER: 9A - Prevalence of Individuals with Deafblindness and Age-Related Dual-Sensory Loss
Renu Minhas
The purpose of the poster presentation is to inform the importance of using consistent, well-researched definitions and survey questions in future prevalence studies of deafblind populations. The authors of this poster have compiled a report on the prevalence of deafblindness and dual-sensory loss based on the review of existing estimates published in journals. Articles were extracted through ProQuest and EBSCOhost, online library databases of Cambrian College and Laurentian University. Keywords search included deafblindness, impairment, dual-sensory loss, age-related, acquired, prevalence. Additionally, the authors conducted a search with Google for research reports and Google Scholar for other relevant peer-reviewed articles. This report provides a current overview of prevalence estimates of deafblindness and age-related dual-sensory loss around the world, examining 19 articles or reports published over the last 20 years in 18 countries, including the European Union (consisting of 8 countries). In line with the prevalence estimates by the World Federation for the Deafblind global report 2018, the review indicates an estimated 0.2-2% prevalence of dual-sensory impairment and underscores varying ranges of prevalence among populations, studies or countries, age groups, and types of deafblindness. The review highlights that the prevalence of deafblindness or dual-sensory loss was often not comparable across studies, but it is clear that the prevalence of dual-sensory impairment increases with age.
Latest Research
POSTER: 10A - How to Obtain Informed Consent/Assent in Research with Individuals with Deafblindness: An Evidence Synthesis
Atul Jaiswal
Individuals with deafblindness experience a combination of hearing and vision loss concurrently to some degree. Due to the dual sensory loss, individual's experience challenges in functioning and health such as in communication, mobility, and/or accessing information. This study aimed to summarize evidence on strategies to receive informed consent and assent in research that will support participation of individuals with deafblindness in research.A scoping review of scientific literature was conducted from January 2015 to July 2020. Scientific databases, Google Scholar, Journal of Visual Impairment and Blindness, British Journal of Visual Impairment were searched. The inclusion criteria consisted of studies focusing on consent and assent strategies used in research for individuals with sensory disabilities. Screening of articles were completed using Covidence and an Excel spreadsheet was created to extract data from eligible studies.2163 articles were screened, of which 16 sources met the eligibility criteria. Based on thematic analysis, four key strategies were found. This included (1) accessibility of the consent/assent process; (2) building relationships with participants and caregivers; (3) identifying behavioural cues; and (4) communication training for researchers. To better support individuals with deafblindness and other associated disabilities, it is significant their perspectives are included in scientific literature to help improve their lives and further advance inclusion/accessibility in research. It is recommended guidelines are developed to support researchers in receiving consent for individuals with sensory disabilities.
Latest Research
POSTER: 11A - Emergency Preparedness Disasters
Laurie McBride & Kacie Weldy
United States

Preparing for and responding to emergency and disaster situations within the DeafBlind community requires education and training of DeafBlind individuals utilizing self-efficacy, self-advocacy, and self-preservation to save lives, bring about awareness within the DeafBlind community, mitigate damages and costs. To dispel the myth that "someone will come and get you" in emergencies and to promote self-advocacy as a skill that can save one's life. To promote the idea that "The greatest indicator of personal independence is the ability to feel capable of preserving your own life and the lives of others. Emergency Preparedness Disasters: The Emergency Preparedness Disasters will engage and educate the audience about the following key concepts that will ultimately lead to Self-Efficacy, Self-Advocacy, & Self-Preservation. What are disasters and how can they impact you? What is shelter-in-place? What to do if you need to evacuate? Who is your support team? The presentation will further introduce the following strategic tools and techniques that the DeafBlind Individual and their families can enact in preparation for survival during a disaster. What is the purpose of a disaster kit and its basic contents? Working with local emergency responders. In conclusion, Emergency Preparedness Disasters the purpose is to enable and educate the DeafBlind person with their families on how to be self-reliant with tools and preparation, so they can be best prepared to survive through any emergency. To instill and educate the audience of self-efficacy, self-advocacy, and self-preservation of a person's ability to meet the challenges of emergency and disaster situations, to save themselves and family members.

Lived-Experience Knowledge Sharing
POSTER: 12A - Canadian Survey of Disability (2017): What Do We Know About Employment and Deafblind Canadians
Dr. Mahadeo Sukhai
Using the Canadian Survey on Disability (2017), a population-based survey of Canadians 15 years and older, we will examine some of the barriers and employment rates in Canada for working age adults who identify with dual sensory loss. We will seek to understand the employment rates, focusing on the specific features of Deafblindness in contrast to other sensory disabilities.In Canada, the employment rate for persons with disabilities is 59% while for the non-disabled population is at 80% (Statistics Canada). In other work, the employment rates for Canadians with hearing disabilities is 55% (Gupta et al 2022) and 54% for Canadians with a seeing disability (Gupta et al 2021), which are both lower than other disability groups between the 25 to 64 years in Canada. We know at the global scale, employment outcomes further relate to age of onset (pre-lingual and post-lingual onset), and access to workplace accommodations and vocational training (WFDB 2018).Secondary statistical analysis of Canadian Survey on Disability (2017) using weighted descriptive statistics and a multivariate logistic regression analysis will be undertaken.Across these population surveys, employment rates differ slightly based on the type of sensory disabilities, where age of onset and severity may be important factors in employment rates. Nevertheless, access to needed workplace accommodations such as communication aids and technological aids, and other supports will be explored across sensory disabilities. We will examine these differences and similarities between key features around deafblindness that impact rates of employment in Canada to better understand barriers to employment.
Latest Research
POSTER: 13A - ICF Core sets on Deafblindness: Characteristics of Studies Included in the Systematic Literature Review
Praveena Santhakumaran

(Presented on Tuesday only)

The International Classification of Functioning, Disability and Health (ICF) is a classification system focused on individuals with disabilities. Developed by the World Health Organization, it provides a common framework for measuring health at individual and population levels. For specific health conditions, there are Core Sets which are divided into 3 phases. By linking outcome measures to ICF codes, this completes the first phase in establishing an ICF Core Set. To establish this, pre-existing literature is analyzed and discussed in this presentation. The literature review (researcher perspective) examines the data available in relation to functioning in deafblindess and identifies descriptors used to evaluate functioning.A systematic review, with the study population defined as adults living with deafblindness, over the age of 18 and includes congenital and acquired deafblindness. Literature was limited to within the past 10 years and include peer-reviewed articles in English found on scientific databases, such as Medline, Embase, PsycINFO, Central, CINAHL. Linking was completed using the WHO Research Branch ICF Linking Rules.131 studies were included in the systematic review with the majority conducted in Europe and North America. Various research methodologies and study designs were used, and the range of participants differed. Categories identified include body function, activities and participation, environmental factors, body structure, and personal factors. Currently, there is no ICF Core Set developed for deafblindness. With the creation of one, it can ease challenges in accessibility and public policy. Using existing literature, categories can be identified to help create a common language specifically for deafblindness.

Latest Research
POSTER: 14A - Holistic Care Centers & Interdisciplinary Diagnostics for People with Dual Sensory Impairments
Melissa Glomb
International exchange on diagnostic options and best practice examples; Point out the importance of comprehensive diagnostics; Discuss about the importance of interdisciplinary collaboration; Exchange of experiences of individuals with lived experience Numerous studies on the prevalence of deafblindness indicate that there is a high number of unreported cases of individuals with deafblindness. These people are often under- or incorrectly cared for which can lead to other (mental) illnesses. Due to various barriers (e.g. form of communication, cognitive limitations, lack of time), it is currently difficult to provide comprehensive care for individuals with deafblindness additional disabilities in everyday clinical practice. They often have to visit a large number of specialist clinics and specialized facilities and put up with long waiting times before they receive appropriate diagnostics and advice. This often leads to a lack of care for the individuals and causes unnecessary costs for the health system due to ineffective clinical practice/activities. We will start a project as a unique cooperation between university clinics, specialist institutions for deafblind people, health insurance companies, self-help organizations and researchers to close this supply gap by setting up interdisciplinary diagnostic and counseling centers for individuals living with deafblindness and by developing concepts for interdisciplinary cooperation at four locations in Germany (Hanover, Berlin, Stuttgart/Tübingen, Würzburg). The goal is the long-term anchoring of these measures/clinical services in the German healthcare system. The project is scheduled to start in January 2024 and will then run for three years.
Services & Resources
POSTER: 15A - Accessible Story Books as a Tool in Literacy Development
Teresa Antony
To share a practice innovation related to literacy.We all need literacy skills to communicate, to open avenues of learning, to access services, and to make informed choices. Literacy skills also include using everyday technology. As presented by Pradeep Sinha, literacy skills positively enhance quality of life, providing wider possibilities in education, work, leisure and social life. Many who lose vision later in life, find the switch in literacy modes and introduction of new technology challenging and fraught with conflicting and often negative emotions. Trust develops engaging, interactive story books to help provide motivation and bring enjoyment into the experience of practising and mastering these new skills.The books developed are available in physical form, stressing the development of tactile skills, often through the creative use of well-graded tactile illustrations. They are also available through an application on android phones, helping learners master access features such as Talkback or Magnification. The design of the physical books and illustrations are done in partnership with adults and children with different disabilities. The accessible website has stories along with many resources so that deafblind trainers like Pradeep can download and use the materials in teaching their peers.This workshop provides participants with important perspectives and introduces them to free resources that support the development of literacy skills.
Services & Resources