| 1. |
- Ahlstrand, Inger, et al.
(author)
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Health-promoting factors among students in higher education within health care and social work : a cross-sectional analysis of baseline data in a multicentre longitudinal study
- 2022
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In: BMC Public Health. - London : BioMed Central. - 1471-2458. ; 22:1
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Journal article (peer-reviewed)abstract
- Background: Educational environments are considered important in strengthening students’ health status and knowledge, which are associated with good educational outcomes. It has been suggested to establish healthy universities based on a salutogenic approach – namely, health promotion. The aim of this study was to describe health-promoting resources and factors among first-semester students in higher education in healthcare and social work.Methods: This cross-sectional study is based on a survey distributed among all students in seven healthcare and social work programmes at six universities in southern Sweden. The survey was carried out in 2018 using a self-reported, web-based questionnaire focussing on general health and well-being, lifestyle factors together with three validated instruments measuring health-promoting factors and processes: the Sense of Coherence (SOC) scale, Salutogenic Health Indicator Scale (SHIS) and Occupational Balance Questionnaire (OBQ).Results: Of 2283 students, 851 (37.3%) completed the survey, of whom 742 (87.1%) were women; 722 (84.8%) were enrolled on healthcare programmes, and 129 (15.2%) were enrolled on social work programmes. Most reported good general health and well-being (88.1% and 83.7%, respectively). The total mean scores for the SOC scale, SHIS and OBQ were, respectively, 59.09 (SD = 11.78), 44.04 (SD = 9.38) and 26.40 (SD = 7.07). Well-being and several healthy lifestyles were related to better general health and higher SOC, SHIS and OBQ scores. Multiple linear and logistic regressions showed that perceived well-being and no sleeping problems significantly predicted higher general health and higher SOC, SHIS and OBQ scores. Being less sedentary and non-smoking habits were significant predictors of higher SOC.Conclusions: Swedish students in higher education within the healthcare and social work sector report good general health and well-being in the first semester, as well as health-promoting resources (i.e. SOC, SHIS and OBQ), and in some aspects, a healthy lifestyle. High-intensity exercise, no sleeping problems and non-smoking seem to be of importance to both general health and health-promotive resources. This study contributes to knowledge about the health promotive characteristics of students in the healthcare and social work fields, which is of importance for planning universities with a salutogenic approach.
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| 2. |
- Astell, A. J., et al.
(author)
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INLIFE - Independent Living Support Functions for the Elderly: Technology and Pilot Overview
- 2018
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In: INTELLIGENT ENVIRONMENTS 2018. - 9781614998747 - 9781614998730 ; , s. 526-535
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Book chapter (other academic/artistic)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. |
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| 4. |
- Derbring, Sandra, et al.
(author)
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Effects of a digital reminiscing intervention on people with dementia and their care-givers and relatives
- 2023
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In: Ageing & Society. - 0144-686X .- 1469-1779. ; 43:9, s. 1983-2000
-
Journal article (peer-reviewed)abstract
- Dementia is a source of growing concern globally, and often impacts on social and communicative functioning. INdependent LIving Support Functions for the Elderly (IN LIFE) was a project carried out within the European Commission Research and Innovation programme Horizon 2020 that resulted in the development of two digital communication aids for reminiscence intervention for elderly people with dementia and their communication partners. The purpose of this intervention study was to investigate the effects on quality of life for people with dementia when using these aids. People with dementia (N = 118) and their formal care-givers (N = 187) and relatives (N = 9) were given the communication aids for a period of 4–12 weeks. To assess a range of outcomes, questionnaires developed within the project were used along with the EQ-5D (European Quality of Life – 5 Dimensions) and QoL-AD (Quality of Life in Alzheimer's Disease) questionnaires. Quality of life improved among people with dementia when measured using EQ-5D (p < 0.05). There was also a correlation between the impact on the participants’ health and wellbeing, the carers’ rating of the usefulness of the digital communication aids and the care-givers’ satisfaction with using technology (p < 0.05). These results indicate that digital communication aids may be useful in social interaction where one partner has dementia.
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| 5. |
- Israelsson-Skogsberg, Åsa, 1968-, et al.
(author)
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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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In: Journal of Child Health Care. - : SAGE Publications. - 1367-4935 .- 1741-2889. ; 22:1, s. 6-18
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Journal article (peer-reviewed)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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| 6. |
- Israelsson-Skogsberg, Åsa, 1968-, et al.
(author)
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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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In: Journal of Family Nursing. - : SAGE Publications. - 1074-8407 .- 1552-549X.
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Journal article (peer-reviewed)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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| 7. |
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| 8. |
- Ahlberg, Emilia, 1983, et al.
(author)
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Perceived changes in communication as an effect of STN surgery in Parkinson's disease: a qualitative interview study.
- 2011
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In: Parkinson's disease. - : Hindawi Limited. - 2090-8083 .- 2042-0080.
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Journal article (peer-reviewed)abstract
- The aim of the present study was to explore four individuals' perspective of the way their speech and communication changed as a result of subthalamic nucleus deep brain stimulation treatment for Parkinson's disease. Interviews of two men and two women were analyzed using qualitative content analysis. Three themes emerged as a result of the analysis. The first theme included sub-themes describing both increased and unexpected communication difficulties such as a more vulnerable speech function, re-emerging stuttering and cognitive difficulties affecting communication. The second theme comprised strategies to improve communication, using different speech techniques and communicative support, as well as trying to achieve changes in medical and stimulation parameters. The third theme included descriptions of mixed feelings surrounding the surgery. Participants described the surgery as an unavoidable dramatic change, associated both with improved quality of life but also uncertainty and lack of information, particularly regarding speech and communication changes. Despite negative effects on speech, the individuals were generally very pleased with the surgical outcome. More information before surgery regarding possible side effects on speech, meeting with a previously treated patient and possibly voice and speech therapy before or after surgery are suggested to facilitate the adjustment to the new speech conditions.
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| 9. |
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| 10. |
- Behrns, Ingrid, 1961, et al.
(author)
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Riktlinjer för bibehållen integritet och god etik vid användningen av patientbaserade inspelningar i interaktivt lärande
- 2012
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In: NU 2012, 17–19 oktober, Göteborg.
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Conference paper (peer-reviewed)abstract
- Syftet med projektet är att dra upp riktlinjer för god etik och bibehållen integritet vid användande av inspelat patientmaterial i undervisningen. Frågeställningar. (1) Vad sätter gränserna tekniskt, etiskt och juridiskt vid användandet av patientbaserade inspelningar i undervisningen? (2) Vilka verktyg och metoder kan vi använda för utveckling av undervisning med patientbaserat material? Tekniken har gjort det möjligt att utveckla nya undervisningssätt. Men detta leder också till att vi ställs inför nya frågor. Projektet tar upp frågeställningar som rör skärningspunkten mellan pedagogik, teknik, juridik och etik. Projektet har utgått från utbildning av logopeder, men området är aktuellt för all undervisning som använder digitala media. Logopedprogrammet är en flervetenskaplig professionsutbildning och ger kunskap om kommunikation och vad som händer vid kommunikationsstörningar http://www.neurophys.gu.se/sektioner/klinisk_neurovetenskap_och_rehabilitering/logopedi/utbildning/grundutb_logopedi/. I det kommande yrkeslivet krävs en förståelse för det komplexa sammanhang som en kommunikationsstörning innebär för patienten. För att bilda sig en helhetsbild av en patients svårigheter behövs stor praktisk erfarenhet (Norman, 2005). Ett sätt för studenten att få den praktiska erfarenheten är att få tillgång till inspelat audio- och video material och analysera kommunikationen ifrån olika perspektiv (Howard, Perkins & Martland, 2001; Hoben, Varley & Cox, 2007). Men med ökad tillgänglighet ökar också kraven på hantering av analysmaterialet så att patientens integritet bevaras. Utbildningen behöver därför ta hänsyn till offentlighetslagstiftningen och personuppgiftslagen. Vi har undersökt forskningsfrågorna från olika personperspektiv: patientens, studentens och lärarens. Projektets första steg var att göra en inventering av hur patientinspelningar hanteras på logopedutbildningarna i Sverige. Vi har skapat kontakter med jurist, filosof och experter på digital lagring och utrett möjligheter och begränsningar i användingen av patientbaserat material. Under projektets gång har vi konkretiserat riktlinjer för hantering av den här typen av känsliga personuppgifter. Vi har utvecklat självinstruerande laborationer på logopedprogrammet vid GU i enlighet med riktlinjerna. Vidare har personerna som spelats in intervjuats om deras egna upplevelser av inspelningssituationen och tankarna om användandet av inspelningen. Vi har tagit fram exempel på blanketter för skriftligt medgivande, riktlinjer för avväganden som måste göras i den tekniska tillämpningen. Under arbetet har vi konstaterat att tekniska möjligheter och juridik och etik kommer i konflikt. Inventeringen har visat att det råder osäkerhet kring hur patientbaserade inspelningar bör användas. Vi har insett behov av att fokusera på etik och professionellt förhållningssätt redan tidigt under utbildningen av logopeder. I arbetet med projektet har vi haft anledning att reflektera över vår egen lärandeprocess där fokus i projektet skiftat från tekniska till etiska frågeställningar. Referenser Hoben, K., Varley, R. and Cox, R. (2007). Clinical reasoning skills of speech and language therapy students. International Journal of Language and Communication Disorders, S1: 123-135. Howard, S., Perkins, M. and Martland, P. (2001). An integrated multi-media package för learning clinical phonetics and linguistics. International Journal of Language and Communication Disorders, 1: 327-332. Norman, G.R. (2005). Research in clinical reasoning. Past history and current trends. Medical Education, 39: 418-427.
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| 11. |
- Berg, Elvira, et al.
(author)
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High-level language difficulties in Parkinson´s disease
- 2003
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In: Clinical linguistics & phonetics. - 0269-9206. ; 17:1, s. 63-80
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Journal article (peer-reviewed)abstract
- Twenty-six subjects with idiopathic Parkinson's disease (PD) and normal cognitive status (as measured by the Mini-Mental State Examination) were examined with a battery of tests selected to reveal subtle and/or high-level language impairments. The test battery included 'repetition of long sentences', 'recreating sentences', 'making inferences', 'comprehension of logico-grammatical sentences', 'comprehension of ambiguous sentences' and 'comprehension of metaphors', 'word definitions', 'word fluency', 'naming', 'sentence analysis' and 'morphological completion'. Comparisons were made between the PD subjects and 26 control subjects matched for age, gender and level of education. Significant differences in performance between the PD subjects and the control subjects were found in the ability to make inferences and to analyse sentences (state the correct number of words in a read sentence). An additional four subjects with different degrees of cognitive dysfunction were also investigated and were found to have particular problems in making inferences, recreating sentences and comprehending metaphors and ambiguities. The results suggest that processing implied information might be a specific problem in this group and that the task of making inferences could be a particularly sensitive test of high-level language dysfunction.
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| 12. |
- Carlsson, Emilia, 1983, et al.
(author)
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Negotiating knowledge: parents’ experience of the neuropsychiatric diagnostic process for children with autism
- 2016
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In: International journal of language and communication disorders. - : Wiley. - 1368-2822. ; 51:3, s. 328-338
-
Journal article (peer-reviewed)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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| 13. |
- Hartelius, Lena, 1957, et al.
(author)
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Communication and Huntington's disease: qualitative interviews and focus groups with persons with Huntington's disease, family members, and carers.
- 2010
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In: International journal of language & communication disorders. - : Wiley. - 1460-6984 .- 1368-2822. ; 45:3, s. 381-393
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Journal article (peer-reviewed)abstract
- Background: As an effect of the cognitive, emotional and motor symptoms associated with Huntington's disease, communicative interaction is often dramatically changed. No study has previously included the subjective reports on this subject from individuals with Huntington's disease. Aims: To explore the qualitative aspects of how communication is affected by Huntington's disease from a triangular perspective represented by individuals with Huntington's disease, family members and professional carers. Methods & Procedures: Eleven persons with Huntington's disease, seven family members and ten carers were interviewed in focus groups or individually, using a semi-structured interview guide. The interviews were transcribed verbatim and analysed using thematic content analysis, resulting in a number of free codes concerning communication. The codes describing related phenomena were merged into categories. Categories were analysed and reanalysed resulting in three major themes, common to the three groups of participants. Outcomes & Results: The themes found were: Communication has changed; Factors that influence communication negatively; and Factors that influence communication positively. Subcategories differed between the three groups. All participants seemed to acknowledge the variability and lack of initiative in communication. The persons without Huntington's disease focused on the changes in terms of speech, language comprehension, the lack of depth in conversation and the need to make adjustments, while the persons with Huntington's disease focused on the effort and concentration demanded to communicate. They described the change they perceived in their communicative ability in terms of loss. All participants thought that an emotional load had a negative impact on communication. Furthermore, individuals with Huntington's disease stressed that other people's speed of communication had a negative impact, while family members and carers stressed that things such as personality changes in persons with Huntington's disease and lack of eye contact with them influenced communication negatively. All participants acknowledged the need for increased participation in social life in order to enhance communication. Conclusions & Implications: In brief, persons with Huntington's disease expressed a need for a richer social life and more (adjusting) conversation partners, family members expressed a need for more support and professional carers wanted more information about Huntington's disease. The triangular perspective utilized in the present study completed the picture of the communicative consequences of Huntington's disease. In particular, it became clear, that the insights of persons with Huntington's disease can and has to be included in communicative assessments and plans for intervention.
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| 14. |
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| 15. |
- Havstam, Christina, 1963, et al.
(author)
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Making sense of the cleft: Young adults' accounts of growing up with a cleft and deviant speech.
- 2011
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In: Journal of health psychology. - : SAGE Publications. - 1461-7277 .- 1359-1053. ; 16:1, s. 22-30
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Journal article (peer-reviewed)abstract
- Individuals born with a cleft lip and palate risk developing a deviant appearance and speech during childhood and sometimes also as adults. In this study, 13 young adults born with a cleft (lip and) palate, who had had deviant speech in adolescence, participated in semistructured interviews. The core category Making sense of the cleft, comprising the two categories Shaping one's attitude to the cleft and Dealing with being different with seven subcategories, describes the processes of developing self-image in relation to the cleft. The findings are believed to be relevant for individuals born with a cleft, their parents and caregivers.
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| 16. |
- Havstam, Christina, 1963, et al.
(author)
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Taking Charge of Communication: Adults' Descriptions of Growing up with a Cleft-Related Speech Impairment.
- 2011
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In: The Cleft palate-craniofacial journal. - : SAGE Publications. - 1545-1569 .- 1055-6656. ; 48:6, s. 717-726
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Journal article (peer-reviewed)abstract
- Objective: To obtain descriptions of the experience of growing up with a cleft-related speech impairment and how it was dealt with. Design: Semistructured interviews were tape-recorded, transcribed verbatim, and analyzed using a qualitative approach inspired by grounded theory methodology. Setting: Interviews took place at participants' homes or workplaces or at the university. Participants: Thirteen young adults (25 to 34 years of age) born with cleft palate with or without cleft lip. Results: The analysis resulted in the core category Taking charge of communication, which comprised three main categories: Forming an idea of one's speech, Learning about one's communication, and Taking responsibility for communication. The first main category was made up of three subcategories and the other two had two. The categories emerged as parallel processes in the understanding and active handling of communicative interaction. Conclusions: The participants described the processes that had enabled them to take charge of their communication. Seeing things from the listener's perspective and being open about the cleft and the speech disorder emerged as important parts of taking active responsibility for communication, as well as accepting their present speech and communication. Communicative participation should be assessed more thoroughly to understand the individual needs of people born with a cleft who have a speech impairment into adolescence.
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| 17. |
- Henriksson, Ingrid, 1961, et al.
(author)
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Book talk and aphasia: the power of a book
- 2020
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In: International Journal of Language & Communication Disorders. - : Wiley. - 1368-2822 .- 1460-6984. ; 55:1, s. 136-148
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Journal article (peer-reviewed)abstract
- Background Reading is most often affected in aphasia and this has an impact on most aspects of everyday life. Being able to read makes a significant difference to how well a person can participate in society. In this study, people with aphasia recount their experiences of being in a book club. Aims This small scale, exploratory study employs a qualitative approach to investigate how persons with aphasia (PWA) and a librarian experience participating in a book club. The aim was to explore their overall experiences of participation, including their views regarding the design of the book club. The research questions were: How did participants experience participating in a book club? How did participants experience the structure and the content of the book club? Methods & Procedures Three men and one woman with aphasia took part in a book club, which was led by a librarian and met once a week for 9 weeks. The group read a book that had been adapted to suit adults who are not very skilled readers or who have a poor knowledge of the Swedish language; it was also available in an audio version. Data were collected through observations, interviews and field notes, and were analysed thematically to find patterns across data and across participants. Outcomes & Results The analysis showed that, despite their language difficulties, the participants experienced the book club as highly rewarding, possibly because the focus was on the content of the book and not on each individual's reading ability. The overarching theme identified in the data was 'Empowerment through a joint reading experience'. This encompassed three sub-themes: 'Structure and flexibility', 'Enjoyment of reading' and 'Fruitful discussions'. Conclusions & Implications The PWA experienced the activity as positive and encouraging despite their language difficulties. What yielded the positive experience were the joint literary discussions. The project also showed that a dedicated group leader (here the librarian) and a flexible structure based on the situation and abilities of each individual were crucial for the encouraging findings.
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| 18. |
- Karlsson, Fredrik, Docent, 1975-, et al.
(author)
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Assessment of speech impairment in patients with Parkinson's disease from acoustic quantifications of oral diadochokinetic sequences
- 2020
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In: Journal of the Acoustical Society of America. - : Acoustical Society of America (ASA). - 0001-4966 .- 1520-8524. ; 147:2, s. 839-851
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Journal article (peer-reviewed)abstract
- This investigation aimed at determining whether an acoustic quantification of the oral diadochokinetic (DDK) task may be used to predict the perceived level of speech impairment when speakers with Parkinson's disease (PD) are reading a standard passage. DDK sequences with repeated [pa], [ta], and [ka] syllables were collected from 108 recordings (68 unique speakers with PD), along with recordings of the speakers reading a standardized text. The passage readings were assessed in five dimensions individually by four speech-language pathologists in a blinded and randomized procedure. The 46 acoustic DDK measures were merged with the perceptual ratings of read speech in the same recording session. Ordinal regression models were trained repeatedly on 80% of ratings and acoustic DDK predictors per dimension in 10-folds, and evaluated in testing data. The models developed from [ka] sequences achieved the best performance overall in predicting the clinicians' ratings of passage readings. The developed [pa] and [ta] models showed a much lower performance across all dimensions. The addition of samples with severe impairments and further automation of the procedure is required for the models to be used for screening purposes by non-expert clinical staff.
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| 19. |
- Kjellén, Emma, 1984, et al.
(author)
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Aphasia and literacy - the insider's perspective
- 2017
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In: International Journal of Language and Communication Disorders. - : Wiley. - 1368-2822 .- 1460-6984. ; 52:5, s. 573-584
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Journal article (peer-reviewed)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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| 20. |
- Kjellén, Emma, 1984, et al.
(author)
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Experiences of Reading and Writing with Aphasia
- 2013
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In: 4th Nordic Aphasia Conference, May 2-4 2013, University of Gothenburg, Gothenburg, Sweden.
-
Conference paper (other academic/artistic)abstract
- Introduction In the present-day information society, literacy is more important than ever, even in everyday life. While there is some research into acquired reading and writing difficulties, there are not many studies in which persons with aphasia have been interviewed about their experience of reading and writing (Behrns, 2009). This is the focus of the present study. Research questions What does literacy mean to persons with aphasia? What are their reading and writing habits of today? How do they handle the consequences of reading and writing difficulties in daily life? How do they feel about reading and writing treatment? Methods Seven persons aged 53–76 years with mild to moderate aphasia were interviewed initially. The interviews were recorded, transcribed and preliminary analysed using Qualitative Content Analysis (Kvale, 1997, Graneheim & Lundman, 2004). Data saturation was not achieved and the data acquisition continued. Five other persons aged 39–65 years with mild to moderate aphasia were interviewed. Work on a second analysis (including all twelve interviews) is in progress. Preliminary findings The preliminary analysis yielded three main categories: A changed reading experience, A changed writing experience and Adjusting to new conditions. The most striking finding was that the informants felt that their literacy practices had changed in terms of what and how they read and write. Compared with before, the informants read and write less often and the texts they read and write are shorter and less complex. The strategies they use to handle the changes include applying different reading techniques, obtaining help from significant others and making use of assistive technology. The informants felt that reading and writing treatment should be stimulating, joyful and varied. While reading and writing could still meet a purpose and give them pleasure in daily life, they hoped that their ability would improve. Discussion Persons with aphasia have different needs and priorities as regards reading and writing. The preliminary findings also indicate that treatment should be designed on an individual basis. The informants have access to alternative ways of reading and writing, but there seem to be a lack of appropriate aids specially designed for this group. The informants’ strategies could be used as ‘good examples’ for other persons with aphasia. Since significant others are often called upon to help, they should be involved in treatment and should be given information and guidance. References Behrns, I. (2009). Aphasia and the challenge of writing. PhD thesis. Göteborgs universitet: Sahlgrenska akademin. Graneheim, U.H., & Lundman, B. (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105–112. Kvale, S. (1997). Den kvalitativa forskningsintervjun. Lund: Studentlitteratur.
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| 21. |
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| 22. |
- Laakso, Katja, 1968, et al.
(author)
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Communication and health-related quality of life in individuals receiving home mechanical ventilation
- 2009
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In: International Journal of Therapy and Rehabilitation. - 1741-1645. ; 16:12, s. 648-655
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Journal article (peer-reviewed)abstract
- Aims: While in clinical reality many ventilator-supported individuals have been observed to experience difficulties with their communication, research in this area is still scarce. The article aims to address this gap by looking at communicative activity and participation and health-related quality of life (HRQL) in individuals receiving home mechanical ventilation (HMV). The study focuses on how patients themselves experience their communicative participation and HRQL, and whether there might be a relationship between demographic factors, HRQL, and communicative activity and participation. Methods: Nineteen individuals receiving HMV via tracheostomy (n=17) or non-invasive means (n=2) participated in the study. Three different questionnaires were used: the generic Sickness Impact Profile, the disease-specific Severe Respiratory Insufficiency questionnaire, and the Living with Dysarthria questionnaire measuring communicative participation. Communicative activity was assessed in terms of speech intelligibility. Findings: The study found that speech intelligibility is decreased in individuals receiving HMV and that these individuals experience high levels of dysfunction in their communication. Still, communicative participation was not severely impaired. The study did not demonstrate any significant correlation between quality of life measures and communicative participation or intelligibility. Conclusions: Communication was one of the areas of HRQL with which the participants experienced difficulties. Nevertheless, the results of the study show that communicative participation and intelligibility levels do not contribute independently to the reduced HRQL.
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| 24. |
- Laakso, Katja, 1968, et al.
(author)
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Communication experience of individuals treated with home mechanical ventilation
- 2011
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In: International Journal of Language & Communication Disorders. - : Wiley. - 1368-2822 .- 1460-6984. ; 46:6, s. 686-699
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Journal article (peer-reviewed)abstract
- Background: Mechanical ventilatory support seriously affects speaking and communication, and earlier studies show that many ventilator-supported patients experience difficulties and frustration with their speech and voice production. Since there is a growing number of individuals who require mechanical ventilatory support and there is a paucity of studies that examine ventilator-supported communication, this research area needs to be developed to ensure adequate health services for this population. The present study focused on ventilator-supported communication from the point of view of individuals receiving home mechanical ventilation (HMV). Aims: The specific aim was to examine the communication experience of individuals receiving HMV. Methods & Procedures: A qualitative approach was adopted for this study, and data were collected by means of semi-structured interviews. Qualitative content analysis was used to structure, condense and interpret the data. The participants were recruited from the National Respiratory Centre (NRC) in Sweden, and included 19 individuals receiving HMV. Outcomes & Results: The main theme A long and lonely struggle to find a voice and six subthemes detailing different facets of it emerged fromdata analysis:Managing changed speech conditions, Prioritising voice, A third party supporting communication, Using communication to get things done, Depending on technology, and Facing ignorance. Important aspects influencing the ventilator-supported individuals’ communicative performance (speech, support from others and technological solutions) are discussed. Conclusions & Implications: The study revealed that healthcare practitioners involved in the care of individuals receiving HMV need to improve their understanding and knowledge of issues related to ventilator-supported communication. Individuals receiving HMV encounter a needlessly long and lonely struggle to achieve effective communication. They face numerous challenges regarding their communication, and they need to be heard in both literal and figurative senses. To overcome these challenges they need support from competent healthcare practitioners and personal assistants, and continuous follow-up by speech and language therapists tailoring communicative solutions to fit individual needs.
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| 25. |
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| 26. |
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| 27. |
- Laakso, Katja, 1968
(author)
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The challenge of communication during home mechanical ventilation
- 2011
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Doctoral thesis (other academic/artistic)abstract
- The overall aim of this thesis was to explore and describe experience of communication during home mechanical ventilation (HMV) in adults, thereby contributing to increased knowledge and awareness of issues related to ventilator-supported communication. Mechanical ventilatory support seriously affects speaking and communication. Earlier studies have shown that many ventilator-supported patients experience difficulty and frustration with their speech and voice production. A mixed-method research approach guided the research design of the thesis, which includes four studies. Study I was a qualitative case study exploring experience of communication of both an intensive care unit nurse and an individual receiving HMV. Participants in Studies II-IV were recruited from the National Respiratory Centre (NRC) and comprised 19 individuals receiving HMV, as well as their key communication partners (CPs). Study II included analyses of the following quantitatively measured variables; speech intelligibility, health-related quality of life and communicative participation. Studies III-IV were qualitative interview studies, exploring the experience of communication of both individuals receiving HMV and their key CPs. One of the main findings in the first study was that ventilator-supported communication was perceived as time consuming, strenuous and requiring training. The second, larger study investigated individuals who are treated with HMV and revealed low average intelligibility scores and an impact on both HRQL and communicative participation. However, these aspects did not appear to be closely correlated. The third study concluded that individuals receiving HMV experience a long and lonely struggle to find a voice and lack support from health professionals. Six subthemes detailed different facets of their experience: Managing changed speech conditions, Prioritising voice, A third party supporting communication, Using communication to get things done, Depending on technology and Facing ignorance. The fourth and final study found that CPs encounter a number of communication limitations in the ventilator-supported individual’s speech and communication, such as a weak voice and interrupted speech flow. CPs used different functional communication strategies to improve communication and assumed the role of a communication facilitator. CPs also described insecurity managing these roles, which evoked emotional reactions, but they also showed an ability to grow with experience. In overall terms, the findings characterise aspects of communication during HMV, including the challenges facing both the individuals receiving HMC and their CPs. The findings revealed that communicative issues were a major concern for individuals receiving HMV and that CPs played an important role in communicative success. Further, it was concluded that there is a lack of knowledge about issues related to communication during HMV, from the point of view of ventilator-supported individuals, communication partners and health care professionals. It is to be hoped that the findings from the studies can be applied to raise awareness and create training programmes relating to the skills and competence needed to be an effective CP and to optimise the communication of individuals receiving HMV.
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| 28. |
- Laakso, Katja, 1968, et al.
(author)
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Ventilator-supported communication – a case study of patient and staff experiences
- 2009
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In: Journal of Medical Speech - Language Pathology. - 1065-1438. ; 17:4, s. 153-164
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Journal article (peer-reviewed)abstract
- Communicative abilities and opportunities are affected by ventilator care. The purpose of this case study was to investigate both a nurse's and a ventilator-supported patient's experiences of communication during ventilator care, with the overall aim of contributing to increased knowledge and awareness of issues related to communication with a ventilator-supported patient. An explorative/descriptive embedded single-case study design was applied, and a qualitative approach guided data collection and analysis. Initially, field observations were carried out in an intensive care unit (ICU) setting, and led to the development of the case (ventilator-supported communication) and the units of analysis. This was followed by semistructured interviews with the participants: an individual receiving home mechanical ventilation (HMV) and a nurse from an ICU setting. Interviews were analyzed according to thematic content analysis. Five main categories emerged from the analysis: (1) to understand and to make oneself understood is important, (2) allowing communication to take time, (3) it takes practice to learn how to speak on a ventilator, (4) different situations require different communicative strategies and (5) knowing a person facilitates communication. The findings are discussed in relation to communicative participation, and suggestions for future research are given.
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| 29. |
- Persson, Christina, 1959, et al.
(author)
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Signs of dysarthria in adults with 22q11.2 deletion syndrome
- 2017
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In: American Journal of Medical Genetics, Part A. - : Wiley. - 1552-4825 .- 1552-4833. ; 173:3, s. 618-626
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Journal article (peer-reviewed)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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| 30. |
- Sixt Börjesson, Malin, et al.
(author)
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Communicative Participation in People with Amyotrophic Lateral Sclerosis
- 2021
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In: Folia Phoniatrica et Logopaedica. - : S. Karger AG. - 1021-7762 .- 1421-9972. ; 73:2, s. 101-108
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Journal article (peer-reviewed)abstract
- Background: Communication is affected in most people with amyotrophic lateral sclerosis (ALS); up to 80–95% will reach a point where they are no longer able to meet their communicative needs with natural speech. The deterioration of speech and communicative abilities presumably has an impact on communicative participation. However, little is known about how these factors relate to each other in this population of patients. Objective: This study aimed to investigate the association between communicative participation, functional deficits, and severity of dysarthria in individuals with ALS. Method: Thirty people with ALS were rated for (1) communicative participation, using the Communicative Participation Item Bank (CPIB, Swedish); and (2) disability related to the disease, using the Revised ALS Functional Rating Scale (Swedish). An expert listening panel assessed intelligibility and severity of dysarthria based on recorded text readings and sentences from the Swedish Test of Intelligibility. Results: CPIB scores were significantly lower for participants with moderate/severe dysarthria than for those with no/mild dysarthria and correlated with bulbar function and intelligibility. Conclusion: The study found that the CPIB provides a means to rate and discuss communicative participation with persons with ALS, which could assist in the planning of further efforts/services.
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| 31. |
- Sundqvist, Maria, 1978, et al.
(author)
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Syllable Repetition vs. Finger Tapping: Aspects of Motor Timing in 100 Healthy Adults.
- 2016
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In: Motor control. - : Human Kinetics. - 1087-1640 .- 1543-2696. ; 20:3, s. 233-54
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Journal article (peer-reviewed)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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