To Örebro University

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Introduction: To live with deafblindness can be challenging for many reasons and its implications for communication and information exchange with the surrounding environment can be vast. People with Usher syndrome (USH) constitute the largest group of individuals under the umbrella term of deafblindness. People with USH have a congenital hearing loss to varying degrees and a progressive eye disease, balance is also affected for some. The progressive course of USH means that over the life course the individual needs to adjust to new everyday life situations which could have implications for their health. Aim: The aim was to describe the health of people with Usher syndrome Method: The empirical material employed was based on an extensive survey in which 171 people with USH answered two questionnaires concerning health, anxiety, depression, social trust, financial situation. Results: People with USH in comparison with a cross-section of the Swedish population, reported high frequencies of fatigue, headache, different kinds of pain in back, neck and shoulders, suicide thoughts and suicide attempts. Social problems in terms of being afraid to go out alone, lack of general trust, having no one to share innermost feelings and confide in and having no one to ask for help when needed was revealed. Conclusion: The health of people with USH needs to be understood in a biopsychosocial context, if not there is a risk of reducing the complexity of living with a progressive condition such as USH and a risk of not taking the whole individual into account.

The present thesis concerns people with Usher syndrome (USH) and their health. People with USH have a congenital hearing loss of various degrees and an eye disease with a progressive course; for some, the balance is also affected. Three clinical groups have been identified 1, 2 and 3, and 13 genes have currently been identified. USH is the most common cause of deafblindness. Clinical knowledge and the limited research that exists have shown that people with deafblindness can experience difficulties in everyday life. Depression, anxiety and social withdrawal have been described.

The general aim of the present thesis was to describe the health of people with USH. The empirical material employed was based on an extensive survey in which people with USH answered two questionnaires concerning health, anxiety, depression, social trust, work, health-care, financial situation, and alcohol and drug use. The focus of the present thesis is on general health, physical health and psychological health, social trust and finance. Three studies in the present theses focus on USH1, 2 and 3, respectively; finally, the fourth study provides an in-group comparison of people with USH. The results of studies I and III are compared with a crosssection of the Swedish population. The results revealed poor physical and psychological health, a lack of social trust and a strained financial situation regardless of clinical diagnosis. The discussion stresses the importance of taking a biopsychosocial approach when describing the health of people with USH, in which previous research is lacking. Additional research should focus on the mechanisms at different levels that affect people with USH and their health from a life- course perspective. Furthermore, research should include a salutogenic perspective to explore the resources and strengths of people with USH.

To live with deafblindness can be challenging for many reasons and its implications for interaction with others and with the surrounding environment can be vast. People with Usher syndrome (USH) constitute the largest group of individuals under the umbrella term of deafblindness. People with USH have a congenital hearing loss to varying degrees and a progressive eye disease, balance is also affected in some persons. Three clinical groups of Usher syndrome have been identified named 1, 2 and 3, and 13 genes have been disclosed. The progression of Usher syndrome means that over the life course there is a need to adjust to new everyday life situations. Clinical knowledge and limited research that exists have shown that people with deafblindness experience difficulties in everyday living, including problems with anxiety, depression, social withdrawal and communication breakdowns. The aim of the workshop is to discuss the importance of a biopsychosocial approach when describing health for people with USH. \r\n\r\nThe empirical material employed was based on an extensive survey in which people with USH, all three types included, answered two questionnaires concerning health, anxiety, depression, social trust, work, health-care, financial situation, and alcohol and drug use. The focus was on general health, physical health and psychological health, social trust and finance.\r\nThe results revealed poor physical and psychological health, a lack of social trust and a strained financial situation regardless of clinical diagnosis and in comparison with a reference, a cross-section of the Swedish population. People with Usher syndrome reported high frequencies of fatigue, headache, different kinds of pain in back, neck and shoulders, suicide thoughts and suicide attempts. Furthermore social problems in terms of being afraid to go out alone, lack of general trust, having no one to share innermost feelings and confide in and having no one to ask for help when needed was revealed.\r\n\r\nAt the presentation different theoretical perspectives of health will be addressed and the discussion will stress the importance of taking a biopsychosocial approach when describing the health of people with USH, in which previous research is lacking. If a biopsychosocial approach is not considered there is a risk of reducing the complexity of living with a progressive condition such as Usher syndrome.

To live with deafblindness can be challenging for many reasons and its implications for interaction with others and with the surrounding environment can be vast. People with Usher syndrome (USH) constitute the largest group of individuals under the umbrella term of deafblindness. People with USH have a congenital hearing loss to varying degrees and a progressive eye disease, balance is also affected in some persons. Three clinical groups of Usher syndrome have been identified named 1, 2 and 3, and 13 genes have been disclosed. The progression of Usher syndrome means that over the life course there is a need to adjust to new everyday life situations. Clinical knowledge and limited research that exists have shown that people with deafblindness experience difficulties in everyday living, including problems with anxiety, depression, social withdrawal and communication breakdowns. The aim of the workshop is to discuss the importance of a biopsychosocial approach when describing health for people with USH.

The empirical material employed was based on an extensive survey in which people with USH, all three types included, answered two questionnaires concerning health, anxiety, depression, social trust, work, health-care, financial situation, and alcohol and drug use. The focus was on general health, physical health and psychological health, social trust and finance.

The results revealed poor physical and psychological health, a lack of social trust and a strained financial situation regardless of clinical diagnosis and in comparison with a reference, a cross-section of the Swedish population. People with Usher syndrome reported high frequencies of fatigue, headache, different kinds of pain in back, neck and shoulders, suicide thoughts and suicide attempts. Furthermore social problems in terms of being afraid to go out alone, lack of general trust, having no one to share innermost feelings and confide in and having no one to ask for help when needed was revealed.

At the presentation different theoretical perspectives of health will be addressed and the discussion will stress the importance of taking a biopsychosocial approach when describing the health of people with USH, in which previous research is lacking. If a biopsychosocial approach is not considered there is a risk of reducing the complexity of living with a progressive condition such as Usher syndrome.

Dövblindhet kan innebära stora utmaningar för den enskilda individen speciellt när det kommer till att interagera och samspela med andra. Personer med Ushers syndrom (USH) är den största gruppen individer under paraply begreppet dövblindhet. USH innebär medfödd hörselnedsättning av varierande grad och en progressiv näthinnesjukdom, balansen kan vara påverkad. Tre kliniska grupper finns beskrivna och 13 gener har identifierats. I ett livsperspektiv innebär USH att personen vid upprepade tillfällen behöver anpassa sig till nya situationer på grund av det progressiva förloppet. Begränsad kunskap inom forskning beskriver problem med ångest, depression och socialt undandragande. Empiriska data bygger på ett omfattande material där personer med USH har svarat på frågeformulär om hälsa, social tillit och ekonomisk situation. Resultatet visar att personer med USH i högre utsträckning än en referensgrupp rapporterar stora problem med trötthet, huvudvärk samt annan typ av värk. Vidare rapporterades självmordstankar, självmordsförsök, generell misstro till andra, rädsla att gå ut ensam samt att sakna någon att vända sig till. Syftet med presentationen är att diskutera vikten av ett biopsykosocialt perspektiv när man beskriver hälsa för personer med USH. Saknas detta finns det en risk att reducera komplexiteten i att leva med en sjukdom som har ett progressivt förlopp.

Introduction: Research has identified that deafblindness implies challenges in daily life. Isolation, depression and poor health are some of the consequences that has been described in research. From a system theory perspective it is reasonable to assume that the entire family could be affected when a parent has deafblindness. However studies focusing on parenting and family life in this context are sparse. Aim: To describe the family situation, family climate, health and wellbeing, from the different perspectives in families where a parent has deafblindness. Methods: Data were collected by means of questionnaires and semi structured interviews. Family members from 16 families participated (14 persons with deafblindness, 6 partners and 18 children). The family members were asked to fill out questionnaires about family climate, health related quality of life and sense of coherence. In the interviews the participants were asked about their experiences of living in a family where a parent has deafblindness, parenting, roles and need for support. Results: The results are preliminary at this stage, but the parents with deafblindness described the parentship and family life as somewhat conditioned. They wanted to take on a parental responsibility, but sometimes they felt forced to abdicate from this responsibility. An adapted environment facilitated, like support from a guide or a professional interpreter with personal knowledge of the family. The partners experienced that the consequences of the deafblindness ruled the family. They expressed a need for rest from responsibility, and a need for support in daily life as a couple, to be able to handle their family life. On group level, the family climate pattern was uniform; the parents with deafblindness, partners and children scored a high level of family closeness. The results from the questionnaires in terms of health related quality of life and sense of coherence indicated an increased risk of poor health related quality of life, and none of the participants qualified to a high sense of coherence. Discussion: At the presentation the experiences of consequences of deafblindness as it affects the entire family will be discussed. Further the risk of poor health related quality of life will be addressed. In order to maintain a healthy family life, the adults empathized a need for support to the individual family members, and for the whole family. The findings can serve as a base for the development of family support interventions needed for families where a parent has deafblindness. Implications: This study has implications for the possibility to develop interventions directed to all members in families where a parent has deafblindness based on what their experiences and needs are. This study provides knowledge both to research and to the professional field about family life when a parent has deafblindness.

Introduction: The consequences of living with deafblindness can be vast and have been described as concerning difficulties with communication, restrictions in the activities of daily living and a lack of independence. Deafblindness has also been associated with poor health-related quality of life. Little is known about parenting when having deafblindness or how the health and family climate of families in which a parent has deafblindness are affected.

Aim: The aim of the study was to describe the health-related quality of life, sense of coherence and family climate in families where a parent has a deafblindness.

Methods: A total of 38 individuals, of which 14 were parents with deafblindness and 6 were partners to the parent with deafblindness, and 18 children, were included. The participants answered questionnaires about their health-related quality of life, family climate and sense of coherence (comprehensibility, manageability, and meaningfulness). The Swedish age-relevant versions of the questionnaires were used. Due to the small number of participants, descriptive statistics were used to explore the results from the questionnaires.

Results: The results revealed a pattern indicating that the health-related quality of life was affected, parents with deafblindness reported the poorest health-related quality of life. Sense of coherence was reported by all the family members as either moderate or low. The Family climate questionnaire revealed the positive aspect of closeness across family members, however negative aspects of chaos and expressiveness in the families were reported, mainly by, but not restricted to, the parents with deafblindness.

Discussion: This study includes a small sample, too small to draw far-reaching conclusions. However, some interesting results need to be highlighted and discussed. When considering the family as a system, it is reasonable to assume that the family members contribute in different ways to how health and wellbeing is experienced in the family. Deafblindness is a unique disability that affects not only the individual but also the whole family. This fact needs to be considered when support is offered to individuals with deafblindness. All members of families where a parent has deafblindness have to be asked about their needs and about how they experience the situation.

Deafblindness is a distinct and rare disability. The official Nordic definition states that deafblindness is a combined vision and hearing impairment, which limits activities of a person and restrict full participation in society to such degree that society is required to facilitate specific services, environmental alterations and/or technology. Deafblindness has different etiologies, onset and course, which means that the group is very heterogeneous. National authorities argue that there is a lack of guidelines of how to provide adequate evidence based support for persons with deafblindness, and deafblind organizations have specifically pointed out that there is a need for research regarding the family situation. The project aims towards a first step to set a base for evidence based guidelines within the field of family health in deafblindness.

The aim was to explore the family situation from different perspectives, including the parent with deafblindness, the other parent and the children, in families where one parent has deafblindness. Experiences of daily life, including aspects such as strengths and need of support as well as self-reported health and family climate were explored.

Trough convenience sampling method families where one parent had deafblindness was recruited. They were asked to answer questionnaires measuring quality of life, sense of coherence and family climate. Swedish version of questionnaires were used and version for children. Further the families were asked to participate in individual qualitative interviews. In all 14 parents with deafblindness, 6 partners and 18 children between 6-18 years were included. The members in the family had to be living together for at least 50% of the time.

At the presentation preliminary results from the questionnaires concerning quality of life, sense of coherence and family climate from the participants will be presented. Results will be presented at group level. Preliminary results indicate that the participants report poor quality of life, low sense of coherence. For the family climate questionnaire it is a mixed picture that appears indicating both closeness and distance. Comparison between the different perspectives, parent with deafblindness, the other parent and children will be discussed at the presentation.

Introduction: The aim of this study was to describe health and social trust in persons with Usher syndrome type 3 (USH3) in relation to hearing and visual impairment.

Methods: Participants were recruited from the Swedish Usher database. Twenty-one persons with USH3 received two questionnaires, which covered a wide range of domains related to health and social trust. Fifteen individuals, 4 men and 11 women aged 19-71 years, responded. Each outcome measure within every domain reported by the individual was structured into a matrix, which included auditory and visual findings.

Results: Severe problems with health and social trust were apparent for persons with USH3. Differences in the number of reported problems were suggested. Three persons had cochlear implants, and they reported far fewer problems with physical health, mental health, and social trust than the others.

Discussion: Three major patterns emerged. The first was that the group was heterogeneous with regard to the problems reported in the biopsychosocial dimensions; that is, general health, physical health, and mental health, as well as social trust. The second was that none of the biopsychosocial dimensions could be disregarded when describing health among persons with USH3. The third major pattern was that a cochlear implant might benefit the health of persons with USH3.

Implications for practitioners: The results suggested poor physical and mental health and severe social trust problems for people with USH3. Interdisciplinary strategies are required to facilitate the rehabilitation of persons with USH3 throughout their lifespan.

Introduction: The objectives of the study reported here were to describe the physical and psychological health of persons with Usher syndrome Type II (USH2) and to explore any differences in terms of gender.

Methods: The participants were recruited from the Swedish Usher database. In the first step, 122 persons received the questionnaire by mail, and 96 (aged 18–84, with a mean age of 55, 53% of whom were female) agreed to participate. The Health on Equal Terms questionnaire was used, which covered such items as health, living conditions, and social relationships. Results for the participants with USH2 were compared to those of a reference group of 5,738 persons who were drawn from a random sample of the Swedish population retrieved from the Swedish Public Health Institute. The odds ratio (adjusted for gender and age), and its 95% confidence interval were calculated.

Results: The participants with USH2 reported that their physical and psychological health was significantly poorer than that of the Swedish reference group. They revealed major problems involving headache, fatigue, depression, suicidal thoughts, and suicide attempts. For the male participants, the psychological differences were even more marked than those of the male reference group.

Discussion: The identification of factors associated with physical and psychological health and well-being is important for the design of future rehabilitation strategies for people with USH2. Special focus must be placed on the psychological well-being of men with USH2.

Implications for practitioners: The management of rehabilitation services for persons with USH2 calls for interdisciplinary teamwork to provide adequate resources to cope with the physical and psychological health issues demonstrated in this study.

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, chi(2)-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.

The article describes physical health, psychological health, social trust, and financial situation in persons with deafblindness due to Usher syndrome type 1 (USH1) in comparison with a cross-section of the Swedish population. Persons with USH1 were recruited through the Swedish Usher database. Totally, 87 adults received the Health on Equal Terms (HET) questionnaire. The HET was adjusted, thus the questions were translated into Swedish sign language, and a large font size, better contrast, and a structure compatible with the Braille script reader were also provided. The questionnaire comprises a wide range of domains related to health and wellbeing. In all, 60 persons responded (60% women, mean age: 49 years, range: 21-79 years). The persons with USH1 were compared to a cross section of the Swedish population that included 5738 individuals (56% women, mean age: 49 years, range: 16-84 years). Significant differences in physical health, psychological health, social trust, and financial situation as well as the odds ratio adjusted for sex and age, and its 95% confidence interval are reported. The psychological health, social trust, and financial situation of persons with USH1 were significantly poorer compared to the reference group although this was not the case for physical health. Persons with USH1 only expressed significantly more problems with headache compared to the cross section of the Swedish population. The respondents revealed major problems with fatigue, loss of confidence, and suicide thoughts and attempts. Major social trust and financial problems were reported in terms of refraining going out alone, not receiving help, having no one with whom to share thoughts, and confide in and being unable to obtain 15.000 SEK (approximately US$1.724 or (sic)1.544) in the case of an unforeseen situation. To identify factors associated with physical health, psychological health, social trust, and financial situation is important in the design of future rehabilitation strategies for persons with USH1. The high level of psychological distress and lack of social trust reported could be related to ontological insecurity, as well as lack of recognition from others. Special attention must be devoted to suicide behavior.

The article describes physical health, psychological health, social trust, and financial situation in persons with deafblindness due to Usher syndrome type 1 (USH1) in comparison with a crosssection of the Swedish population. Persons with USH1 were recruited through the Swedish Usher database. Totally, 87 adults received the Health on Equal Terms (HET) questionnaire. The HET was adjusted, thus the questions were translated into Swedish sign language, and a large font size, better contrast, and a structure compatible with the Braille script reader were also provided. The questionnaire comprises a wide range of domains related to health and wellbeing. In all, 60 persons responded (60% women, mean age: 49 years, range: 21–79 years). The persons with USH1 were compared to a cross section of the Swedish population that included 5738 individuals (56% women, mean age: 49 years, range: 16–84 years). Significant differences in physical health, psychological health, social trust, and financial situation as well as the odds ratio adjusted for sex and age, and its 95% confidence interval are reported. The psychological health, social trust, and financial situation of persons with USH1 were significantly poorer compared to the reference group although this was not the case for physical health. Persons with USH1 only expressed significantly more problems with headache compared to the cross section of the Swedish population. The respondents revealed major problems with fatigue, loss of confidence, and suicide thoughts and attempts. Major social trust and financial problems were reported in terms of refraining going out alone, not receiving help, having no one with whom to share thoughts, and confide in and being unable to obtain 15.000 SEK (approximately US$1.724 or €1.544) in the case of an unforeseen situation. To identify factors associated with physical health, psychological health, social trust, and financial situation is important in the design of future rehabilitation strategies for persons with USH1. The high level of psychological distress and lack of social trust reported could be related to ontological insecurity, as well as lack of recognition from others. Special attention must be devoted to suicide behavior.

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.

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.