To Örebro University

For individuals with deafblindness communication and interaction with the surrounding environment is challenging due to the combined hearing- and vision loss. The received information becomes fragmented and it is tiring to fill in missing parts. Due to lack of knowledge of deafblindness, public information is not accessible, which became even more evident during the corona pandemic. Persons with deafblindness have ways to get access to information using different methods, however, not without problems. The authorities need better working models to adjust and provide information to the target group in times of crisis. Recommendations that have derived from the results will be discussed and elaborated on at the presentation.

The aim was to explore and describe the experiences and needs of support for everyday life for adults with deafblindness. Persons with deafblindness need lifelong support to be able to be active and involved in their everyday life. If support is not provided the results might be negative resulting in physical and mental illness and social isolation. Interviews were performed with 16 adult persons with deafblindness, age ranged from 24 to75 years. Interviews were individual or in focus groups. They were audio or video recorded depending on communication of the participants. Thematic analysis was used to analyze transcribed interviews. An overreaching theme was identified: The importance of being treated as the unique individual I am. The theme constitutes the foundation of the nine other themes identified to be able to live an active everyday life. Support offered must be tailored to the current needs and situation. Positive and negative experiences of emotional and practical support was described. The mobile phone was expressed as the most important aid. A shared communication was expressed as a need within the theme of family support, also a need for more knowledge about deafblindness for family members. Peer support was described as essential to the participants. The results shared by the participants indicate that the support from society needs to be tailored to a greater extent than what is done today. The participants want to be encountered by interested professionals that have knowledge of deafblindness and its consequences as well as their whole life situation. This will be further elaborated on at the presentation.

BACKGROUND: Deafblindness is a rare condition, and its prevalence has been reported to be approximately one in 27,000 new-borns worldwide. For individuals with deafblindness, lifelong interventions and support are needed to be able to develop communication, be active and preserve a good quality of life. Since little is known about what kind of support and interventions can be offered to children with deafblindness, the aim was to summarize and disseminate research findings regarding this topic.

METHODS: Integrative review principles were employed. Systematic searches in eight databases and additional manual searches were conducted. The inclusion criteria were as follows: original studies published between 2000 and 2021 examining either interventions for children between 0-18 years of age with deafblindness or interventions aimed at children with deafblindness but offered to their relatives or professionals working with them. Studies on support for family members were also sought. Study characteristics were described, and key findings were synthesized into categories based on their similarities.

RESULTS: Of the 6,268 identified original studies, 32 were included. The key outcomes from the included studies were synthesized into three categories, with two 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). Social interaction and communication was the dominant category, covering 24 of the 32 included studies.

CONCLUSIONS: This review concludes that there is a limited number of evaluated interventions for children with deafblindness. In many cases, the interventions were adapted to the individual child's needs, and most of them were found within the area of social interaction and communication. More research is needed to strengthen the level of evidence for interventions for children with deafblindness.

PURPOSE: To describe the rehabilitation service experiences of older adults with dual sensory loss (DSL).

METHODS: Twenty older adults aged ≥65 years with DSL participated in semistructured interviews. Inductive qualitative content analysis was conducted.

RESULTS: The participants' experiences were classified into three main categories: 1. Maintaining and regaining function included experiences regarding interventions compensating for loss of function and medical corrections; 2. Mastering the situation described the individuals' competence of DSL, skills acquisition and taking control; and 3. Delivery of rehabilitation services included experiences of encounters with professionals, their attitudes and the organizational impact on accessibility and collaboration.

CONCLUSIONS: It was important for participants to regain function and compensate for loss in function and to meet others in group rehabilitation. The professionals' attitudes were an important factor that affected the participants' approach to rehabilitation services. Rehabilitation services mainly focused on either VL or HL, not DSL. Based on the participants' experiences, the rehabilitation services seemed to contribute to the older adults' well-being, participation in activities and life roles, which is consistent with the WHO's definition of healthy ageing. The findings can contribute to the development of rehabilitation services for older adults with DSL to meet the diversity of these individuals' needs.

Purpose: To describe the rehabilitation service experiences of older adults with dual sensoryloss (DSL).

Methods: Twenty older adults aged ≥65 years with DSL participated in semistructuredinterviews. Inductive qualitative content analysis was conducted.

Results: The participants’ experiences were classified into three main categories: 1.Maintaining and regaining function included experiences regarding interventions compensat-ing for loss of function and medical corrections; 2. Mastering the situation described theindividuals’ competence of DSL, skills acquisition and taking control; and 3. Delivery ofrehabilitation services included experiences of encounters with professionals, their attitudesand the organizational impact on accessibility and collaboration.

Conclusions: It was important for participants to regain function and compensate for loss infunction and to meet others in group rehabilitation. The professionals’ attitudes were animportant factor that affected the participants’ approach to rehabilitation services.Rehabilitation services mainly focused on either VL or HL, not DSL. Based on the participants’experiences, the rehabilitation services seemed to contribute to the older adults’ well-being,participation in activities and life roles, which is consistent with the WHO’s definition ofhealthy ageing. The findings can contribute to the development of rehabilitation services forolder adults with DSL to meet the diversity of these individuals’ needs.

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.

INTRODUCTION: The family life of people living with one family member with deafblindness has been sparsely described.

PURPOSE: The aim of the study was to explore how children experience their everyday family life when having a parent with deafblindness.

METHODS: An explorative study in which data have been collected by qualitative interviews of children. Qualitative content analysis has been used for analysing the data.

RESULTS: Overall theme; Living an ordinary life-yet not, is based on four categories with subcategories. A family like any other describes: Having the same family life as their friends, Acting like other children and It is what it is. Different everyday life describes: Acknowledging differences, Adjusting to the parent's needs and Financial strain. Being there for the parent describes: Helping the parent and Protecting the parent from harm. Being emotionally affected describes: Feelings of frustration, Feelings of compassion and Need for support.

CONCLUSION: Children as relatives of parents with deafblindness have been given a voice. The children live an ordinary life, but at the same time a different ordinary life. Professionals need to take the child and their needs into account when support is given.

Deafblindness is a combined vision and hearing disability that restricts communication, access to information, and mobility, thus limiting a person's activities and full participation in society. Literature on how this might affect the lives of family members is sparse. The aim of this study is to describe the lived experience of family life from the perspective of one parent when the other has deafblindness. Six partners of deafblind parents, four men and two women, agreed to participate. Three were deaf and communicated in Swedish sign language. Qualitative interviews were conducted and analysed using interpretative phenomenological analysis. Seven themes were identified during the analysis. When one parent has deafblindness, communication within the family and with people outside the family is affected. The non-deafblind partners tried to integrate deafblindness into everyday family life and constantly strove to compensate for the losses caused by deafblindness. They tried to enhance participation and engagement in everyday family life for the parent with deafblindness by facilitating communication and taking a greater part in some areas of their shared responsibilities at home. The results reveal that these partners often put themselves in second place. They and their families needed support to manage family life. Deafblindness affects the life of the entire family, and the non-deafblind partner has to take considerable responsibility for everyday life. Everyday life can be facilitated by an adapted environment and appropriate support, which should be offered to the entire family.

OBJECTIVES: Abandonment of vision, hearing or mobility aids suggests common barriers and facilitators to ongoing device use. However, the possible interactive effects of combined hearing and vision disabilities on device use by those living with deafblindness are unclear. Here we summarise existing knowledge on variables influencing assistive technology use from the perspective of persons living with deafblindness. We used the WHO's International Classification of Functioning, Disability and Health (ICF) framework to contextualise the findings, asking 'What is currently known about variables influencing the (non-)use of assistive devices recommended for persons with deafblindness?'

DESIGN: A scoping review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews Checklist.

DATA SOURCES: PubMed; ProQuest: ERIC; ProQuest Dissertation; ProQuest: Sociological Thesaurus; Web of Science; Scientific Electronic Library Online; Bielefeld Academic Search Engine; Pascal & Francis; APA PsycINFO and Ebsco for CINAHL were searched through 9 November 2020.

ELIGIBILITY CRITERIA: We included peer-reviewed studies that reported on assistive technology, device abandonment/utilisation and provided data from persons living with deafblindness.

DATA EXTRACTION AND SYNTHESIS: Four team members independently scored 83 studies for eligibility.

RESULTS: Ten articles were chosen for data extraction. The emerging variables replicated established categories of barriers and facilitators: personal, device-related, environmental and intervention variables. The use of the ICF highlighted how an intermediate variable (eg, device acceptability) was necessary in order for a variable to become a barrier or a facilitator to device use.

CONCLUSIONS: The variables influencing device use by persons with deafblindness followed the same categories described for single impairments. Usability was challenged in devices that rely on the 'other' sense. Haptic and tactile aids are rarely studied. The limited available information and the dire need for assistive technologies for people with deafblindness emphasises the urgency of research and technology development for this marginalised population.