| 1. |
- Astell, A. J., et al.
(författare)
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INLIFE - Independent Living Support Functions for the Elderly: Technology and Pilot Overview
- 2018
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Ingår i: INTELLIGENT ENVIRONMENTS 2018. - 9781614998747 - 9781614998730 ; , s. 526-535
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Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- In this paper, we present the European H2020 project INLIFE (INdependent LIving support Functions for the Elderly). The project brought together 20 partners from nine countries with the goal of integrating into a common ICT platform a range of technologies intended to assist community-dwelling older people with cognitive impairment. The majority of technologies existed prior to INLIFE and a key goal was to bring them together in one place along with a number of new applications to provide a comprehensive set of services. The range of INLIFE services fell into four broad areas: Independent Living Support, Travel Support, Socialization and Communication Support and Caregiver Support. These included security applications, services to facilitate interactions with formal and informal caregivers, multilingual conversation support, web-based physical exercises, teleconsultations, and support for transport navigation. In total, over 2900 people participated in the project; they included elderly adults with cognitive impairment, informal caregivers, healthcare professionals, and other stakeholders. The aim of the study was to assess whether there was improvement/stabilization of cognitive/emotional/physical functioning, as well as overall well-being and quality of life of those using the INLIFE services, and to assess user acceptance of the platform and individual services. The results confirm there is a huge interest and appetite for technological services to support older adults living with cognitive impairment in the community. Different services attracted different amounts of use and evaluation with some proving extremely popular while others less so. The findings provide useful information on the ways in which older adults and their families, health and social care services and other stakeholders wish to access technological services, what sort of services they are seeking, what sort of support they need to access services, and how these services might be funded.
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| 3. |
- Israelsson-Skogsberg, Åsa, 1968-, et al.
(författare)
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'I'm almost never sick': Everyday life experiences of children and young people with home mechanical ventilation
- 2018
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Ingår i: Journal of Child Health Care. - : SAGE Publications. - 1367-4935 .- 1741-2889. ; 22:1, s. 6-18
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Tidskriftsartikel (refereegranskat)abstract
- Developments in medical technology and treatment have increased the survival rates of children with serious illnesses or injuries, including those receiving home mechanical ventilation, which is a small but growing group. The aim of this study was to explore everyday life experiences of children and young people living with home mechanical ventilation (HMV). Data were obtained through interviews with nine participants. The interviews were supported by photovoice methodology: photographs taken by the participants before or during the interviews were used to facilitate conversation. Interview data were analyzed using qualitative content analysis. The findings revealed that everyday life on a ventilator can be described as including power but simultaneously as characterized by vulnerability to the outside world, comparable to balancing on a tightrope. Various types of technology, both information and communication technology (ICT) and vital medical technology, enabled the participants to engage with the world around them. This study contributes knowledge about the experiences of children and young people with HMV, who depict their lives as good and valuable. The study also underscores, when designing plans and home support, it is necessary to take a sensible approach to personal experiences of what a good life is and what resources are needed to attain and maintain health.
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| 4. |
- Israelsson-Skogsberg, Åsa, 1968-, et al.
(författare)
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Siblings' Lived Experiences of Having a Brother or Sister With Home Mechanical Ventilation: A Phenomenological Hermeneutical Study
- 2019
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Ingår i: Journal of Family Nursing. - : SAGE Publications. - 1074-8407 .- 1552-549X.
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Tidskriftsartikel (refereegranskat)abstract
- Over the past few decades, there has been an increase in the number of children receiving home mechanical ventilation (HMV), and in many ways, families have taken responsibility for the required advanced homecare, which has placed considerable time demands on the family unit. Little is known about the life situation of the siblings of HMV-assisted children; their own voices and an insider perspective are missing. The aim of this study was to illuminate the everyday life experiences of siblings of HMV-assisted children. Data were obtained via interviews with 10 siblings with a median age of 9 years. Data were analyzed using a phenomenological hermeneutical method inspired by the French philosopher Ricoeur. Four themes emerged, all of which suggest that a complex and profound intertwined sibling bond develops that links the past, present, and future. The findings of this study provide valuable information from an insider's perspective about the meaning of having an HMV-assisted sibling. Family-focused care with particular attention and support for siblings of HMV-assisted children can encourage the development of internal strengths, self-confidence, and resilience.
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| 5. |
- Carlsson, Emilia, 1983, et al.
(författare)
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Negotiating knowledge: parents’ experience of the neuropsychiatric diagnostic process for children with autism
- 2016
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Ingår i: International journal of language and communication disorders. - : Wiley. - 1368-2822. ; 51:3, s. 328-338
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Tidskriftsartikel (refereegranskat)abstract
- Background: Parents often recognize problems in their child’s development earlier than health professionals do and there is new emphasis on the importance of involving parents in the diagnostic process. In Gothenburg, Sweden, over 100 children were identified as having an autism spectrum disorder (ASD) in 2009–11 through a general population language and autism screening of 2.5 year olds at the city’s child healthcare centres. Aims: To increase understanding of parents’ lived experience of the neuropsychiatric diagnostic process, i.e. the period from the initial screening at age 2.5 years to the 2-year follow-up of the ASD diagnosis. Methods & Procedures: A qualitative design, a phenomenological hermeneutic method, was used. Interviews were conducted with parents of 11 children who were diagnosed with ASD 2 years prior. The parents were interviewed about their experiences of the neuropsychiatric diagnostic process, i.e. the time before the screening, the time during the neuropsychiatric multidisciplinary evaluation and the time after diagnosis. The interviews lasted for 45–130 min, and an interview guide with set questions was used. Most of the interviews were conducted at the parents’ homes. Outcomes & Results: The essence that emerged from the data was negotiating knowledge, and the three themes capturing the parents’ experiences of going through the process of having their child diagnosed with ASD were seeking knowledge, trusting and challenging experts, and empowered but alone. Conclusions & Implications: The parents expected intervention to start directly after diagnosis but felt they had to fight to obtain the resources their child needed. After the process, they described that they felt empowered but still alone, i.e. although they received useful and important information about their child, they were left to manage the situation by themselves. As for clinical implications, the study points to the necessity of developing routines to support the parents during and after the diagnostic process. Recommended measures include developing a checklist outlining relevant contacts and agencies, establishing a coordinator responsible for each child, dividing the summary meeting at the clinic into two parts, making more than one visit to the preschool, and providing a parental training programme.
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| 6. |
- Kjellén, Emma, 1984, et al.
(författare)
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Aphasia and literacy - the insider's perspective
- 2017
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Ingår i: International Journal of Language and Communication Disorders. - : Wiley. - 1368-2822 .- 1460-6984. ; 52:5, s. 573-584
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Tidskriftsartikel (refereegranskat)abstract
- © 2016 The Authors International Journal of Language & Communication Disorders published by John Wiley & Sons Ltd on behalf of Royal College of Speech and Language Therapists.Background: Few studies have investigated how people with aphasia (PWA) experience literacy skills. Taking the insider's perspective is a way to increase understanding of the individual experiences of literacy among PWA, which may have clinical implications. Aims: To describe how literacy, i.e., reading and writing, is experienced in everyday life by PWA and to gain insight into the part played by literacy skills in their lives. Methods & Procedures: A qualitative descriptive research approach was taken. In-depth interviews were conducted with 12 PWA (six women and six men) who had all lived with aphasia for at least 6 months post-stroke. The interviews were analysed using qualitative content analysis. Outcomes & Results: One overarching theme emerged from the data: literacy as an ongoing recovery process. Based on this overarching theme, two subthemes were identified: changes in conditions for literacy (experiences of reading and writing initially post-onset compared with experiences at the time of the interview); and facing expectations about literacy (participants' own and other people's expectations of them in terms of literacy). Conclusions & Implications: The findings are important at a general level in that they indicate that PWA are able to articulate their individual experiences and thoughts about literacy, i.e., reading and writing. Specifically, PWA in this study experience literacy as playing an essential part in their lives and the findings imply that personal experiences are important in the design of reading and writing interventions in speech and language therapy.
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| 7. |
- Persson, Christina, 1959, et al.
(författare)
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Signs of dysarthria in adults with 22q11.2 deletion syndrome
- 2017
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Ingår i: American Journal of Medical Genetics, Part A. - : Wiley. - 1552-4825 .- 1552-4833. ; 173:3, s. 618-626
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Tidskriftsartikel (refereegranskat)abstract
- © 2016 Wiley Periodicals, Inc.The aim of the study was to investigate how adults with 22q11.2 deletion syndrome (22q11DS) performed on dysarthria and intelligibility tests compared with a control group. Ten participants with confirmed 22q11.2 deletion, five males and five females with a mean age of 31 years (range: 19-49), were compared with a control group matched for gender and age (five males and five females, mean age: 32 years, range: 19-49). Assessment of non-verbal and verbal tasks reflecting respiration, phonation, oral motor function, velopharyngeal function, articulation, and prosody was performed as well as the Swedish Test of Intelligibility (STI). All assessments were made by two raters; inter-rater and intra-rater reliability was acceptable. The participants with 22q11DS had significantly more problems than the control group on all investigated dimensions except the STI. Overall, the severity of their speech deviation was rated as mild to moderate. The largest difficulties were found regarding speech respiration, phonation, oral motor function, and velopharyngeal function. The results of the present study suggest that a neurological etiology could be added to the previously described structural etiology explaining the speech difficulties found in 22q11DS. Signs of difficulties in both speech motor planning and speech motor programming were found. Further studies are needed to confirm the results, as are studies of the association between structural brain abnormalities and neurological speech symptoms. For clinical purposes, it is important that clinicians have knowledge about the variable speech symptoms that may occur in individuals with 22q11DS and that they be aware of the complexity of the etiology of such speech symptoms.
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| 8. |
- Sundqvist, Maria, 1978, et al.
(författare)
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Syllable Repetition vs. Finger Tapping: Aspects of Motor Timing in 100 Healthy Adults.
- 2016
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Ingår i: Motor control. - : Human Kinetics. - 1087-1640 .- 1543-2696. ; 20:3, s. 233-54
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Tidskriftsartikel (refereegranskat)abstract
- In this study we systematically compared syllable repetition and finger tapping in healthy adults, and explored possible impacts of tempi, metronome, musical experience, and age on motor timing ability. One hundred healthy adults used finger-tapping and syllable repetition to perform an isochronous pulse in three different tempi, with and without a metronome. Results showed that the motor timing was more accurate with finger tapping than with syllable repetition in the slowest tempo, and the motor timing ability was better with the metronome than without. Persons with musical experience showed better motor timing accuracy than persons without such experience, and the timing asynchrony increased with increasing age. The slowest tempo 90 bpm posed extra challenges to the participants. We speculate that this pattern reflects the fact that the slow tempo lies outside the 3-8 Hz syllable rate of natural speech, which in turn has been linked to theta-based oscillations in the brain.
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