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| 2. |
- Ahlberg, Emilia, 1983, et al.
(författare)
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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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Ingår i: Parkinson's disease. - : Hindawi Limited. - 2090-8083 .- 2042-0080.
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Tidskriftsartikel (refereegranskat)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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- Behrns, Ingrid, 1961, et al.
(författare)
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Riktlinjer för bibehållen integritet och god etik vid användningen av patientbaserade inspelningar i interaktivt lärande
- 2012
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Ingår i: NU 2012, 17–19 oktober, Göteborg.
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Konferensbidrag (refereegranskat)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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- Hartelius, Lena, 1957, et al.
(författare)
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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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Ingår i: International journal of language & communication disorders. - : Wiley. - 1460-6984 .- 1368-2822. ; 45:3, s. 381-393
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Tidskriftsartikel (refereegranskat)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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- Havstam, Christina, 1963, et al.
(författare)
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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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Ingår i: Journal of health psychology. - : SAGE Publications. - 1461-7277 .- 1359-1053. ; 16:1, s. 22-30
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Tidskriftsartikel (refereegranskat)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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| 6. |
- Havstam, Christina, 1963, et al.
(författare)
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Taking Charge of Communication: Adults' Descriptions of Growing up with a Cleft-Related Speech Impairment.
- 2011
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Ingår i: The Cleft palate-craniofacial journal. - : SAGE Publications. - 1545-1569 .- 1055-6656. ; 48:6, s. 717-726
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Tidskriftsartikel (refereegranskat)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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- Kjellén, Emma, 1984, et al.
(författare)
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Experiences of Reading and Writing with Aphasia
- 2013
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Ingår i: 4th Nordic Aphasia Conference, May 2-4 2013, University of Gothenburg, Gothenburg, Sweden.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)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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- Laakso, Katja, 1968, et al.
(författare)
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Communication experience of individuals treated with home mechanical ventilation
- 2011
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Ingår i: International Journal of Language & Communication Disorders. - : Wiley. - 1368-2822 .- 1460-6984. ; 46:6, s. 686-699
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Tidskriftsartikel (refereegranskat)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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- Laakso, Katja, 1968
(författare)
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The challenge of communication during home mechanical ventilation
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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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