Interventions for children with deafblindness-An integrative review.

BACKGROUND: Deafblindness is a rare condition, and its prevalence has been reported to be approximately 1 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. Because 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 and 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 6268 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 are 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.

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.

Living an ordinary life - yet not: the everyday life of children and adolescents living with a parent with deafblindness.

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.

Experiences of rehabilitation services from the perspective of older adults with dual sensory loss - a qualitative study.

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.

Device abandonment in deafblindness: a scoping review of the intersection of functionality and usability through the International Classification of Functioning, Disability and Health lens.

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.

The lived experiences of work and health of people living with deaf-blindness due to Usher syndrome type 2.

Purpose: This study aimed to explore lived experiences with working life from the perspective of people with deafblindness due to Usher syndrome type 2 (USH2). Background: A limited number of studies have explored working life of people with Usher syndrome. One study of individuals with USH2 showed that work active reported significantly better psychological health compared to non-working individuals. Methods: Seven participants aged 38-50 years with USH2 participated in interviews analysed by interpretative phenomenological analysis. Results: The analyses yielded four themes showing that work is a source of satisfaction and a commitment that needs to be balanced. It is also associated with facing limitations and feelings of uncertainty. Conclusion: Based on the psychology of work model we have demonstrated that work is associated with social connectedness, self-determination and a source of improved health outcomes. There are however also potential health hazards in people with USH2, indicating a need for balance between individual needs and resources, and an adapted environment, for maintaining or regaining health for actively working people with USH2.

Similarities and Differences in Health, Social Trust, and Financial Situation in People With Usher Syndrome, a Bio-Psychosocial Perspective.

PURPOSE: The primary aim was to describe the similarities and differences among the general health, physical health, psychological health, social trust, and financial situations of people with Usher syndrome (USH) types 1, 2, and 3. A second aim was to explore whether age, gender, clinical diagnosis, visual field, visual acuity, and degree of hearing impairment were associated with the general health, physical health, psychological health, social trust, and financial situations of people with USH. METHODS: In this study, 162 people with USH living in Sweden were included, and all three types of the disease were represented. Data concerning vision, hearing, and genetics were retrieved from the Swedish Usher database. Group comparison using frequencies, χ2-tests and Kruskal-Wallis tests for group comparison were used. To examine the effect of independent variables on poor health outcomes, a logistic regression analysis was conducted. RESULTS: Problems with poor health, social trust, and finances were found for all three types; however, more similarities than differences were found. The results of the regression model were ambiguous; it is not clear which independent measures contributed the most to poor outcomes. People with USH3 tended to report the most problems regarding the dependent outcome measures. CONCLUSION: The observations of the associations between the independent variables and poor health, social trust and finances made in the present study are important to bear in mind in a rehabilitation setting; however, they do not fully explain how people with USH actually feel or rate their health. More research is needed to confirm the knowledge that exists within the clinical setting and the life stories told by the people with USH to merge existing knowledge into a rehabilitation setting based on evidence.

Prevalence, diagnoses and rehabilitation services related to severe dual sensory loss (DSL) in older persons: a cross-sectional study based on medical records.

OBJECTIVE: To estimate the prevalence of severe dual sensory loss (DSL) among older persons (aged ≥65 years) in the Swedish population, to identify the diagnoses that cause severe DSL, and to identify rehabilitation services in which the participants have been involved. DESIGN: A cross-sectional design was applied. Medical records from Audiological, Low Vision, and Vision clinics from two Swedish counties were used. STUDY SAMPLE: 1257 adults, aged ≥65 years with severe hearing loss (HL) (≥70 dB HL) were included, whereof 101 had decimal visual acuity ≤0.3. RESULTS: Based on the population size in the two counties (≥65 years, n = 127,638), the prevalence of severe DSL was approximately 0.08% in the population. Within the group having DSL (n = 101), 61% were women and 71% were aged ≥85 years. Common diagnoses were cataract and/or age-related macular degeneration (AMD) in combination with HL. The rehabilitation services offered were mainly hearing aids and various magnifiers. CONCLUSIONS: The study confirmed previous results, indicating that the prevalence of severe DSL increases with age and that sensorineural HL and cataract, AMD or glaucoma coexist. The identified rehabilitation services mainly focussed on either vision loss or HL but not on severe DSL as a complex health condition.

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.

Health, work, social trust, and financial situation in persons with Usher syndrome type 1.

BACKGROUND: Research has demonstrated that persons with Usher syndrome type 1 (USH1) have significantly poorer physical and psychological health compared to a reference group. PURPOSE: To explore the relation between work, health, social trust, and financial situation in USH1 compared to a reference group. MATERIAL: Sixty-six persons (18-65 y) from the Swedish Usher database received a questionnaire and 47 were included, 23 working and 24 non-working. The reference group comprised 3,049 working and 198 non-working persons. METHODS: The Swedish Health on Equal Terms questionnaire was used and statistical analysis with multiple logistic regression was conducted. RESULTS: The USH1 non-work group had a higher Odds ratio (95% CI) in poor psychological and physical health, social trust, and financial situation compared to the USH1 work group and reference groups. Age, gender, hearing, and vision impairment did not explain the differences. The relation between the USH1 work and non-work groups showed the same pattern as the reference groups, but the magnitude of problems was significantly higher. CONCLUSIONS: Both disability and unemployment increased the risk of poor health, social trust and financial situation in persons with USH1, but having an employment seemed to counteract the risks related to disability.