| 1. |
- Björk, Maria, et al.
(författare)
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The consequences of deafblindness rules the family : Parents' lived experiences of family life when the other parent has deafblindness
- 2022
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Ingår i: The British Journal of Visual Impairment. - : Sage Publications. - 0264-6196 .- 1744-5809. ; 40:1, s. 18-28
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 2. |
- de Verdier, Kim, 1973-
(författare)
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Inclusion in and out of the classroom : A longitudinal study of students with visual impairments in inclusive education
- 2016
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Ingår i: The British Journal of Visual Impairment. - : SAGE Publications. - 0264-6196 .- 1744-5809. ; 34:2, s. 132-142
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Tidskriftsartikel (refereegranskat)abstract
- This longitudinal study examined psychological well-being and social relations in school for six students with blindness or severe visual impairment (VI) in Swedish inclusive education. The students were followed through compulsory school, with data collection in Grades 1, 2, 3, and 9. A total of 151 interviews were conducted with the students, teachers, and parents during these years. At the end of ninth grade, the Strengths and Difficulties Questionnaire (SDQ) was also administered to all informants. The results revealed several challenges regarding social inclusion, with a majority of families being critical of the social situation in the schools. During lower school years, many examples of educational interventions aiming to facilitate social inclusion were described. However, as the children grew older, the parents’ and teachers’ possibilities to influence the group dynamics and create organized social arenas diminished drastically. Regarding the students’ general psychological well-being, the SDQ ratings showed minor or no differences compared to sighted norms. However, the interviews revealed that a majority of the students were stressed about school work and keeping up with their sighted peers and described feelings of loneliness. Some displayed emotional symptoms of which parents and teachers were not always aware. Three students had additional disabilities besides their VI. These students reported more overt psycho-social problems than the students with only VI. The students developed different strategies to handle the social challenges, for example, focusing on school work and getting good grades, or withdrawing and seeking friends with VI outside school. The conclusion is that students with visual impairments are a heterogeneous group comprising individuals with different needs, and that many of these students face social challenges in school. Interventions on different levels are necessary in order to improve the possibilities for these students’ social inclusion.
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| 3. |
- Santos, Diana, et al.
(författare)
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Influence of the use of cane on the gait cycle of individuals who are blind
- 2018
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Ingår i: The British Journal of Visual Impairment. - : Sage Publications. - 0264-6196 .- 1744-5809. ; 36:3, s. 251-261
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to perform a biomechanical characterization of the gait cycle in individuals who are blind. Five individuals with ages between 16 and 19 years participated in this study. The task consisted of walks of 12m measured in two conditions: (1) with cane and (2) wihtout cane; a total of 20 walks in each condition were performed. During walks, participants were monitored with a Vicon 3D-motion capture system. Spatialtemporal, kinematic, kinetic, and dynamic parameters were recorded and compared between the two conditions. We observed an interaction between the condition and ankle angular measures (p = .003); the interaction was due to differences induced by condition in instants ‘opposite toe off’ (p = .045) and ‘opposite initial contact’ (p = .019). We also obtained a significant difference in the negative ankle-joint-power measures between conditions (p = .044). This study showed that the use of cane changes the gait pattern in individuals who are blind. The subtle changes in ankle behaviour when walking with a cane, compared with no cane, suggest better application of the force during the initial stages of support leading to a more comfortable gait. This type of assessment of gait may be important to improve mobility training and rehabilitation strategies.
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| 4. |
- Wahlqvist, Moa, 1979-, et al.
(författare)
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Physical and Psychological Health, Social Trust and Financial Situation for persons with Usher syndrome type 1
- 2016
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Ingår i: The British Journal of Visual Impairment. - London, United Kingdom : Sage Publications. - 0264-6196 .- 1744-5809. ; 34:1, s. 15-25
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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