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  • 51.
    Pestoff, R.
    et al.
    Linkoping Univ Hosp, Dept Clin Genet, Linkoping, Sweden.;Linkoping Univ, Dept Clin & Expt Med, Linkoping, Sweden..
    Moldovan, R.
    Babes Bolyai Univ, Dept Psychol, Cluj Napoca, Romania..
    Cordier, C.
    Synlab Genet, Dept Genet, Lausanne, Switzerland..
    Serra-Juhe, C.
    Univ Pompeu Fabra Hosp Mar Res Inst IMIM, Genet Unit, Barcelona, Spain.;Inst Salud Carlos III, Ctr Invest Biomed Red Enfermedades Raras CIBERER, Madrid, Spain..
    Paneque, M.
    Univ Porto, I3S Inst Invest & Inovacao Saude, Porto, Portugal.;Univ Porto, Inst Mol & Cell Biol, Ctr Predict & Prevent Genet CGPP, IBMC, Porto, Portugal..
    Ingvoldstad, Charlotta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Obstetrisk och reproduktiv hälsoforskning. Karolinska Inst, Dept Clin Sci Intervent & Technol, Stockholm, Sweden.
    How practical experiences, educational routes and multidisciplinary teams influence genetic counselors' clinical practice in Europe2018Ingår i: Clinical Genetics, ISSN 0009-9163, E-ISSN 1399-0004, Vol. 93, nr 4, s. 891-898Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The main objective of our study was to explore whether, and to what extent, genetic counselors' characteristics impact on their tasks in practice. Specifically, we explored the complementariness between genetic counselors and medical geneticists and therefore looked at the most relevant tasks of genetic counselors, according to genetic counselors themselves and according to the medical geneticists they work with. A total of 104 genetic counselors and 29 medical geneticists from 15 countries completed a purposefully designed questionnaire. Results showed that most genetic counselors in Europe perform similar tasks, irrespective of their backgrounds. When looking at the factors influencing genetic counselors' roles data showed that the type of tasks performed by genetic counselors is associated with the years of experience in the field, not with their background or education. Of particular interest was the consensus between genetic counselors and medical geneticists regarding the genetic counselor's role. Not surprisingly, tasks with more psychosocial implications were seen as genetic counselors' eligibility while tasks with more medical implications were seen as medical geneticists' attribution. Our study shows that most genetic counselors work in tune with international recommendations and seem to be supportive of multidisciplinary teams. Corroborating our data with previous research, we discuss potential implications for practice and training in genetic counseling.

  • 52.
    Rissanen, Ritva
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Arving, Cecilia
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Ahlgren, Johan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centrum för klinisk forskning, Gävleborg.
    Cernvall, Martin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Cognitive processing in relation to psychological distress in women with breast cancer: a theoretical approach2014Ingår i: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, nr 2, s. 222-228Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    OBJECTIVE:

    To evaluable a cognitive procession model developed by Creamer and colleagues, this study examined the longitudinal relationship between intrusion and psychological distress, via avoidance, in women with breast cancer.

    METHODS:

    Participants included 189 patients who were newly diagnosed with breast cancer. The longitudinal association between intrusion, avoidance and psychological distress and the mediating role of avoidance between intrusion and psychological distress were examined. Intrusion was measured at inclusion (T1), avoidance at 3 months post-inclusion (T2) and psychological distress at 12 months post-inclusion (T3).

    RESULTS:

    Results suggested that avoidance at T2 did not mediate the relationship between intrusions at T1 and psychological distress at T3.

    CONCLUSION:

    The results did not provide support for Creamer's model in an early-stage breast cancer population, which suggests that early-stage breast cancer patient's process trauma differently from late-stage cancer patients. Therefore, it might be suggested that early-stage and late-stage cancer patients require different types of support and treatment for the distress experienced.

  • 53.
    Rissanen, Ritva
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Ahlgren, Johan
    Department of Oncology, University Hospital of Örebro, Sweden.
    Arving, Cecilia
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    A stepped care stress management intervention on cancer-related traumatic stress symptoms among breast cancer patients: A randomized study in group vs. individual setting2015Ingår i: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 24, nr 9, s. 1028-1035Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objective

    To evaluate the mode of delivery of a stress management intervention, in a group or individual setting, on self-reported cancer-related traumatic stress symptoms. A secondary aim was to evaluate a stepped care approach.

    Methods

    All study participants (n  = 425), who were female, newly diagnosed with breast cancer and receiving standard oncological care were offered Step I of the stepped care approach, a stress management education (SME). Thereafter, they were screened for cancer-related traumatic stress symptoms, and, if present (n = 304), were invited to join Step II, a more intense intervention, derived from cognitive behavioral therapy, to which they were randomized to either a group (n = 77) or individual (n  = 78) setting. To assess cancer-related traumatic stress symptoms, participants completed the Impact of Event Scale and the Hospital Anxiety and Depression Scale at the time of inclusion, three-months post-inclusion and approximately 12-months post-inclusion.

    Results

    The SME did not significantly decrease any of the cancer-related traumatic stress symptoms. No statistically significant differences were found between the group and the individual setting interventions. However, only 54% of the participants attended the group setting compared to 91% for the individual setting.

    Conclusion

    The mode of delivery had no effect on the cancer-related traumatic stress symptoms; however, the individual setting was preferred. In future studies, a preference-based RCT design will be recommended for evaluating the different treatment effects.

  • 54.
    Roshanai, Afsaneh Hayat
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap.
    Ingvoldstad, Charlotta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Lindgren, Peter
    Fetal ultrasound examination and assessment of genetic soft markers in Sweden: are ethical principles respected?2015Ingår i: Acta Obstetricia et Gynecologica Scandinavica, ISSN 0001-6349, E-ISSN 1600-0412, Vol. 94, nr 2, s. 141-147Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    ObjectiveTo explore procedures for providing information, assessment and documentation about ultrasound soft markers in Sweden. DesignDescriptive, quantitative, cross-sectional survey. SampleEighty-two percent of all obstetric ultrasound clinics in Sweden (covering >90% of routine fetal ultrasound examinations). MethodsPostal questionnaire survey between December 2010 and January 2011. Main outcome measuresItems about provision of information, risk estimation, and follow-up strategies in relation to observed ultrasound soft markers. ResultsMore than 96% of all fetal routine ultrasound examinations were performed at 15-21 gestational weeks, primarily by midwives. Half of the clinics replying wanted prospective parents to be provided with information, but 38 (78%) of the clinics did not routinely inform about assessment of soft markers before the examination. Follow up and decisions on whether to give information when soft markers were found were based on the number and type of the observed markers, whether other structural deviations existed, and on the woman's age and anxiety level. Only at eight clinics (17%) were parents informed about all soft marker findings. At 13 clinics (28%) observed markers were documented/recorded, even though the women were not informed. ConclusionsInformation regarding the assessment and importance of observed soft markers seems to be inconsistent and insufficient. Provision of information and documentation of findings appear to be handled differently at obstetric ultrasound clinics. This suggests that Swedish ethical principles relating to healthcare and ultrasound examinations are incompletely followed and national guidelines appear to be necessary.

  • 55.
    Roshanai, Afsaneh Hayat
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap.
    Lindgren, Peter
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Ingvoldstad, Charlotta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Obstetrik & gynekologi.
    Swedish University Students' Opinion Regarding Information About Soft Markers2016Ingår i: Journal of Genetic Counseling, ISSN 1059-7700, E-ISSN 1573-3599, Vol. 25, nr 1, s. 146-156Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The aim of this study was to investigate the opinions of Swedish university students about information regarding soft markers, when observed at second trimester ultrasound screening. A cross-sectional survey, where 85 Swedish university students completed a study specific questionnaire containing eleven hypothetical scenarios, involving various parameters (disease/syndromes/malformations with different characteristics), and location of the markers. Almost all participants indicated that they would wish to be informed, prior to the ultrasound examination, about the assessment and significance of soft markers. However, the number of respondents who requested information about a potential actual finding was considerably less. Several participants wanted to be informed about detected markers associated to serious conditions but not when the marker indicated an increased risk for a treatable disease. Also, the specific location of the marker was of importance to the participants. The majority of respondents wished to be informed about the soft markers if they were observed in the heart or the brain of the foetus, compared to if they were located in the intestine or the skeleton. The students' opinion, in this study, implicate the importance of pre-examination information to enable expectant parents to make informed choice regarding the second trimester ultrasound screening as well as on reciving information of actual findings.

  • 56. Skirton, Heather
    et al.
    Cordier, Christophe
    Ingvoldstad, Charlotta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Taris, Nicolas
    Benjamin, Caroline
    The role of the genetic counsellor: a systematic review of research evidence2015Ingår i: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 23, nr 4, s. 452-458Artikel, forskningsöversikt (Refereegranskat)
    Abstract [en]

    In Europe, genetic counsellors are employed in specialist genetic centres or other specialist units. According to the European Board of Medical Genetics, the genetic counsellor must fulfil a range of roles, including provision of information and facilitation of psychosocial adjustment of the client to their genetic status and situation. To evaluate the extent to which genetic counsellors fulfil their prescribed roles, we conducted a systematic review of the published relevant scientific evidence. We searched five relevant electronic databases (Medline, CINAHL, SocIndex, AMED and PsychInfo) using relevant search terms and handsearched four subject-specific journals for research-based papers published in English between 1 January 2000 and 30 June 2013. Of 419 potential papers identified initially, seven satisfied the inclusion criteria for the review. Themes derived from the thematic analysis of the data were: (i) rationale for genetic counsellors to provide care, (ii) appropriate roles and responsibilities and (iii) the types of conditions included in the genetic counsellor caseload. The findings of this systematic review indicate that where genetic counsellors are utilised in specialist genetic settings, they undertake a significant workload associated with direct patient care and this appears to be acceptable to patients. With the burden on genetic services, there is an argument for the increased use of genetic counsellors in countries where they are under-utilised. In addition, roles undertaken by genetic counsellors in specialist genetic settings could be adapted to integrate genetic counsellors into multidisciplinary teams in other specialisms.

  • 57.
    Tegler, Helena
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Icke-talande barn med svår CP och utvecklingsstörning kan få en röst tack vare högteknologiska samtalsapparater2018Konferensbidrag (Refereegranskat)
    Abstract [sv]

    Bakgrund: Icke-talande barn med svår CP och utvecklingsstörning kan få en röst tack vare högteknologiska samtalsapparater. I Sverige är det företrädelsevis logopeder som förskriver samtalsapparater och som informerar, instruerar, tränar och följer upp användning av samtalsapparaten. Logopeden ger direkta insatser till barnet och indirekta insatser till kommunikationspartnern (såsom vårdnadshavare, lärare och assistenter). Ett hinder för kommunikation med stöd av samtalsapparaten är för lite och även bristfällig professionell support till kommunikationspartners, vilket kan leda till underanvändning. Den professionella supporten omfattar tex. val av vokabulär, programmering, målformulering samt direkt och indirekt träning av kommunikation med stöd av samtalsapparaten. Syfte: Att undersöka logopeders, vårdnadshavares, lärares och assistenters praktiska erfarenheter och uppfattning av kommunikation med stöd av högteknologisk samtalsapparat. Metod: Enkät till logopeder, vårdnadshavare, lärare och assistenter till barn med svår CP (GMFCS IV-V) och utvecklingsstörning. Deskriptiv och jämförande statistik samt deduktiv innehållsanalys med komponenter ur ICF-CF. Resultat: Deltagare (n=64) från hela Sverige besvarade enkäterna. Logopederna hade få besök med barnet respektive kommunikationspartnern. De använde muntliga instruktioner och modell, sällan feedback för att instruera kommunikationspartnern. Personalen (lärare och assistenter) fick mer support och använde kommunikationsstödjande strategier mer än vårdnadshavarna. Barnens dagliga användning av samtalsapparaten var högre med personal än med vårdnadshavare. Personalen upplevde att samtalsapparaten underlättade barnets delaktagande i undervisningen. Vårdnadshavare rapporterade optimism, tidsbrist och orkeslöshet. Rapporterade hinder var relaterade till barnet samt till omgivande faktorer (samtalsapparaten, support från professionella samt kommunikationspartnern). Slutsats: Barn med svår CP och utvecklingsstörning kan ha stor nytta av högteknologisk samtalapparat, men stödet från logopeder till kommunikationspartners behöver förbättras. 

     

  • 58.
    Tegler, Helena
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Kommunikation med stöd av högteknologiska samtalsapparater -: logopeders, vårdnadshavares, lärares och assistenters erfarenhet2018Konferensbidrag (Refereegranskat)
  • 59.
    Tegler, Helena
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Turn-in-interaction including an eye gaze accessed speech generating device2019Konferensbidrag (Refereegranskat)
    Abstract [en]

    The preconditions for communication with eye gaze accessed speech generating device (SGD) is different compared to typical talk-in-interactions. Firstly, gaze practices are needed in the production of the SGD-mediated contribution, which affects the typical use of gaze practices in the face-to-face-interaction. Secondly, the prolonged time producing an SGD-mediated contribution can contribute sequential and temporal challenges for both aided and naturally speaking conversational partners. Consequently, eye gaze accessed SGD-mediated interaction can imply specific challenges for both conversational partners.

     

    This study investigated how classroom interaction was organized when an eye gaze accessed SGD was used by one of the participants. The participant using the SGD, Anna, was 15 years and had physical and cognitive disabilities due to cerebral palsy. She communicated through gaze practice, facial expression, vocalization and the SGD. Anna had no oral speech and could not read or write. Data is from a lesson in general sciences. Apart from Anna, there were five other students, three teaching assistants and one teacher in the classroom. All but Anna and another student were aided speaking and used SGDs.

     

    Data was collected using video recordings at Anna’s school June 2018. Two cameras were used to capture (1) the SGD screen and (2) Anna and her speaking partner. The interactions were transcribed and analysed using the methods and principles of Conversation Analysis (Sidnell 2012; Higginbotham & Engelke 2013).

     

    Overall, data showed that teacher-initiated Initiation-Response-Evaluation sequences (IRE) was frequently used in the classroom. The teacher used naming, pre sequences and reformulations in interaction with Anna. These practises provided a Turn-Relevance-Place in which Anna could respond with the SGD.

  • 60.
    Tegler, Helena
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Demmelmaier, Ingrid
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Blom Johansson, Monica
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Forskning om funktionshinder och habilitering. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Blom Johansson: Logopedi.
    Norén, Niklas
    Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Språkvetenskapliga fakulteten, Institutionen för nordiska språk, Avdelningen för forskning och utbildning i modern svenska (FUMS). Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Fakulteten för utbildningsvetenskaper, Institutionen för pedagogik, didaktik och utbildningsstudier.
    Classroom Interaction Involving Students with Cerebral Palsy using Eye-gaze Accessed Speech-Generating DevicesManuskript (preprint) (Övrigt vetenskapligt)
  • 61.
    Tegler, Helena
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Demmelmaier, Ingrid
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap.
    Blom Johansson, Monica
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Forskning om funktionshinder och habilitering. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Blom Johansson: Logopedi.
    Norén, Niklas
    Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Fakulteten för utbildningsvetenskaper, Institutionen för pedagogik, didaktik och utbildningsstudier. Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Språkvetenskapliga fakulteten, Institutionen för nordiska språk, Avdelningen för forskning och utbildning i modern svenska (FUMS).
    Features of Social Action that Mobilize Response when Professionals Interact with Young Beginner Users of Eye-gaze Accessed Speech Generating devicesManuskript (preprint) (Övrigt vetenskapligt)
  • 62.
    Tegler, Helena
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Uppsala County Council.
    Pless, Mia
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Forskning om funktionshinder och habilitering.
    Blom Johansson, Monica
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Logopedi.
    Sonnander, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Forskning om funktionshinder och habilitering.
    Caregivers’, teachers’, and assistants’ use and learning of partner strategies in communication using high-tech speech-generating devices with children with severe cerebral palsy2019Ingår i: Assistive technology, ISSN 1040-0435, E-ISSN 1949-3614Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Communication with speech generating devices (SGDs) with children with severe physical, communicative and cognitive impairments, such as children with cerebral palsy (CP), can be difficult. Use of partner strategies facilitates the communication and instructional approaches such as feedback and role play facilitate communication partners' learning in how to use partner strategies. To describe communication partners' use and learning about partner strategies in SGD-mediated communication with children with severe CP. Questionnaires (n = 65) were sent to caregivers (n = 30), teachers (n = 17), and teaching or personal assistants (n = 18) of children with severe CP. Response rate was 80%. To ask open-ended questions was the most frequently used partner strategy and aided augmented input the least frequently used partner strategy. Most commonly, participants learned partner strategies from speech and language pathologists (SLPs) who used verbal instructions when teaching partner strategies but seldom or never feedback, role play or video examples. Communication partners' learning about partner strategies in SGD-mediated communication is inadequate and needs to be improved. SLPs, who are the main prescribers of SGDs and responsible for training and support in using them, should consider using instructional approaches when teaching communication partners about partner strategies in communication with an SGD.

  • 63.
    Tegler, Helena
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Uppsala County Council.
    Pless, Mia
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Forskning om funktionshinder och habilitering.
    Blom Johansson, Monica
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Logopedi.
    Sonnander, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Forskning om funktionshinder och habilitering.
    Speech and language pathologists' perceptions and practises of communication partner training to support children's communication with high-tech speech generating devices2019Ingår i: Disability and Rehabilitation: Assistive Technology, ISSN 1748-3107, E-ISSN 1748-3115, Vol. 14, nr 6, s. 581-589Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: This study examined speech and language pathologists' (SLPs') perceptions and practices of communication partner training with high-tech speech generating devices (SGDs).

    Method: Fifteen SLPs were recruited throughout Sweden. The SLPs answered a study-specific questionnaire on communication partner training in relation to communication partners to children with severe cerebral palsy and intellectual disability. The results were analysed with descriptive statistics (closed-ended questions, responses on Likert scales) and content analysis (open-ended question) using ICF-CY.

    Results: Twelve SLPs completed the survey. Half had no or one training session with communication partners in the last year. One-third never used documents for goal-setting. Half seldom or never taught communication partner strategies. Three quarters only used verbal instructions. The main obstacles were environmental factors.

    Conclusions: This study contributes valuable knowledge about high-tech SGD interventions targeting communication partners. The high-tech SGD intervention may benefit from goal-setting, extended number of training sessions and a range of instructional approaches.

  • 64.
    Ternby, Ellen
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Obstetrik & gynekologi.
    Ingvoldstad, Charlotta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Obstetrik & gynekologi. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Annerén, Göran
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Medicinsk genetik och genomik.
    Lindgren, Peter
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Obstetrik & gynekologi.
    Axelsson, Ove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centrum för klinisk forskning i Sörmland (CKFD). Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Obstetrik & gynekologi.
    Information and knowledge about Down syndrome among women and partners after first trimester combined testing2015Ingår i: Acta Obstetricia et Gynecologica Scandinavica, ISSN 0001-6349, E-ISSN 1600-0412, Vol. 94, nr 3, s. 329-32Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    We assessed reasons among women and partners for choosing combined ultrasound-biochemistry testing, information and knowledge about Down syndrome and decisions concerning invasive procedures and termination of pregnancy in a prospective cohort study in Uppsala County. In all 105 pregnant women and 104 partners coming for a combined ultrasound-biochemistry test answered a questionnaire. The most common reason for a combined ultrasound-biochemistry test was "to perform all tests possible to make sure the baby is healthy". Internet and midwives were the most common sources of information. Seventy-two percent had not received information on what it means to live with a child with Down syndrome. Many expectant parents perceived information as insufficient. Both women and partners had varying or low levels of knowledge about medical, cognitive and social consequences of Down syndrome. Twenty-five percent had not decided on an invasive test if indicated and only 42% would consider termination of pregnancy with a Down syndrome diagnosis.

  • 65.
    Vassbakk-Brovold, Karianne
    et al.
    Sorlandet Hosp Trust, Ctr Canc Treatment, Postbox 416, N-4604 Kristiansand, Norway;Univ Agder, Dept Hlth & Sport Sci, Kristiansand, Norway.
    Berntsen, Sveinung
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Univ Agder, Dept Hlth & Sport Sci, Kristiansand, Norway.
    Fegran, Liv
    Univ Agder, Dept Hlth & Nursing Sci, Kristiansand, Norway.
    Lian, Henrik
    Sorlandet Hosp Trust, Dept Phys & Prevent Med, Kristiansand, Norway.
    Mjåland, Odd
    Sorlandet Hosp Trust, Dept Surg, Kristiansand, Norway.
    Mjåland, Svein
    Sorlandet Hosp Trust, Ctr Canc Treatment, Postbox 416, N-4604 Kristiansand, Norway.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Univ Agder, Dept Hlth & Sport Sci, Kristiansand, Norway.
    Seiler, Stephen
    Univ Agder, Dept Hlth & Sport Sci, Kristiansand, Norway.
    Kersten, Christian
    Sorlandet Hosp Trust, Ctr Canc Treatment, Postbox 416, N-4604 Kristiansand, Norway.
    Lifestyle changes in cancer patients undergoing curative or palliative chemotherapy: is it feasible?2018Ingår i: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 57, nr 6, s. 831-838Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    INTRODUCTION: This study aimed to explore the feasibility of an individualized comprehensive lifestyle intervention in cancer patients undergoing curative or palliative chemotherapy.

    MATERIAL AND METHODS: At one cancer center, serving a population of 180,000, 100 consecutive of 161 eligible newly diagnosed cancer patients starting curative or palliative chemotherapy entered a 12-month comprehensive, individualized lifestyle intervention. Participants received a grouped startup course and monthly counseling, based on self-reported and electronically evaluated lifestyle behaviors. Patients with completed baseline and end of study measurements are included in the final analyses. Patients who did not complete end of study measurements are defined as dropouts.

    RESULTS: More completers (n = 61) vs. dropouts (n = 39) were married or living together (87 vs. 69%, p = .031), and significantly higher baseline physical activity levels (960 vs. 489 min.wk-1, p = .010), more healthy dietary choices (14 vs 11 points, p = .038) and fewer smokers (8 vs. 23%, p = .036) were observed among completers vs. dropouts. Logistic regression revealed younger (odds ratios (OR): 0.95, 95% confidence interval (CI): 0.91, 0.99) and more patients diagnosed with breast cancer vs. more severe cancer types (OR: 0.16, 95% CI: 0.04, 0.56) among completers vs. dropouts. Improvements were observed in completers healthy (37%, p < 0.001) and unhealthy dietary habits (23%, p = .002), and distress (94%, p < .001). No significant reductions were observed in physical activity levels. Patients treated with palliative intent did not reduce their physical activity levels while healthy dietary habits (38%, p = 0.021) and distress (104%, p = 0.012) was improved.

    DISCUSSION: Favorable and possibly clinical relevant lifestyle changes were observed in cancer patients undergoing curative or palliative chemotherapy after a 12-month comprehensive and individualized lifestyle intervention. Palliative patients were able to participate and to improve their lifestyle behaviors.

  • 66.
    Wallin, Emma
    et al.
    Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Samhällsvetenskapliga fakulteten, Institutionen för psykologi.
    Mattsson, Susanne
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Olsson, Erik
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    The Preference for Internet-Based Psychological Interventions by Individuals Without Past or Current Use of Mental Health Treatment Delivered Online: A Survey Study With Mixed-Methods Analysis2016Ingår i: JMIR mhealth and uhealth, E-ISSN 2291-5222, Vol. 3, nr 2, artikel-id e25Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: The use of the Internet has the potential to increase access to evidence-based mental health services for a far-reaching population at a low cost. However, low take-up rates in routine care indicate that barriers for implementing Internet-based interventions have not yet been fully identified.

    Objective: The aim of this study was to evaluate the preference for Internet-based psychological interventions as compared to treatment delivered face to face among individuals without past or current use of mental health treatment delivered online. A further aim was to investigate predictors of treatment preference and to complement the quantitative analyses with qualitative data about the perceived advantages and disadvantages of Internet-based interventions.

    Methods: Two convenience samples were used. Sample 1 was recruited in an occupational setting (n=231) and Sample 2 consisted of individuals previously treated for cancer (n=208). Data were collected using a paper-and-pencil survey and analyzed using mixed methods.

    Results: The preference for Internet-based psychological interventions was low in both Sample 1 (6.5%) and Sample 2 (2.6%). Most participants preferred psychological interventions delivered face to face. Use of the Internet to search for and read health-related information was a significant predictor of treatment preference in both Sample 1 (odds ratio [OR] 2.82, 95% CI 1.18-6.75) and Sample 2 (OR 3.52, 95% CI 1.33-9.29). Being born outside of Sweden was a significant predictor of preference for Internet-based interventions, but only in Sample 2 (OR 6.24, 95% CI 1.29-30.16). Similar advantages and disadvantages were mentioned in both samples. Perceived advantages of Internet-based interventions included flexibility regarding time and location, low effort, accessibility, anonymity, credibility, user empowerment, and improved communication between therapist and client. Perceived disadvantages included anonymity, low credibility, impoverished communication between therapist and client, fear of negative side effects, requirements of computer literacy, and concerns about confidentiality.

    Conclusions: Internet-based interventions were reported as the preferred choice by a minority of participants. The results suggest that Internet-based interventions have specific advantages that may facilitate help-seeking among some individuals and some disadvantages that may restrict its use. Initiatives to increase treatment acceptability may benefit from addressing the advantages and disadvantages reported in this study.

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