| 1. |
- Aafjes-van Doorn, Katie, et al.
(författare)
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Patients’ Affective Processes Within Initial Experiential Dynamic Therapy Sessions
- 2017
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Ingår i: Psychotherapy. - : American Psychological Association (APA). - 0033-3204 .- 1939-1536. ; 54:2, s. 175-183
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Tidskriftsartikel (refereegranskat)abstract
- Research has indicated that patients’ in-session experience of previously avoided affects may be important for effective psychotherapy. The aim of this study was to investigate patients’ in-session levels of affect experiencing in relation to their corresponding levels of insight, motivation, and inhibitory affects in initial Experiential Dynamic Therapy (EDT) sessions. Four hundred sixty-six 10-min video segments from 31 initial sessions were rated using the Achievement of Therapeutic Objectives Scale. A series of multilevel growth models, controlling for between-therapist variability, were estimated to predict patients’ adaptive affect experiencing (Activating Affects) across session segments. In line with our expectations, higher within-person levels of Insight and Motivation related to higher levels of Activating Affects per segment. Contrary to expectations, however, lower levels of Inhibition were not associated with higher levels of Activating Affects. Further, using a time-lagged model, we did not find that the levels of Insight, Motivation, or Inhibition during one session segment predicted Activating Affects in the next, possibly indicating that 10-min segments may be suboptimal for testing temporal relationships in affective processes. Our results suggest that, to intensify patients’ immediate affect experiencing in initial EDT sessions, therapists should focus on increasing insight into defensive patterns and, in particular, motivation to give them up. Future research should examine the impact of specific inhibitory affects more closely, as well as between-therapist variability in patients’ in-session adaptive affect experiencing.
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| 2. |
- Abbass, Allan, et al.
(författare)
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Intensive Short-Term Dynamic Psychotherapy Trial Therapy Effectiveness and Role of Unlocking the Unconscious
- 2017
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Ingår i: Journal of Nervous and Mental Disease. - 0022-3018 .- 1539-736X. ; 205:6, s. 453-457
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Tidskriftsartikel (refereegranskat)abstract
- This study examined the effects of trial therapy interviews using intensive short-term dynamic psychotherapy with 500 mixed sample, tertiary center patients. Furthermore, we investigated whether the effect of trial therapy was larger for patients who had a major unlocking of the unconscious during the interview compared with those who did not. Outcome measures were the Brief Symptom Inventory (BSI) and the Inventory of Interpersonal Problems (IIP), measured at baseline and at 1-month follow-up. Significant outcome effects were observed for both the BSI and the IIP with small to moderate preeffect/posteffect sizes, Cohen's d = 0.52 and 0.23, respectively. Treatment effects were greater in patientswho had a major unlocking of the unconscious comparedwith thosewho did not. The trial therapy interview appears to be beneficial, and its effects may relate to certain therapeutic processes. Further controlled research is warranted.
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| 3. |
- Abbass, Allan, et al.
(författare)
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On Paolo Migione's "What Does Brief Mean?"
- 2014
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Ingår i: Journal of the American Psychoanalytic Association. - : SAGE Publications. - 0003-0651 .- 1941-2460. ; 62:5, s. NP18-NP22
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
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| 4. |
- Abdelzadeh, Ali, 1981-, et al.
(författare)
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Det demokratiska utanförskapets geografi
- 2022
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Ingår i: Demokratin och delaktigheten. - Stockholm : Kommittén demokratin 100 år. ; , s. 34-60
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 5. |
- Abdelzadeh, Ali, 1981-, et al.
(författare)
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En arena för tillit och tolerans?
- 2016
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Ingår i: Föreningen, jaget och laget. - Stockholm : Centrum för idrottsforskning. - 9789198183375 ; , s. 27-46
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Bokkapitel (populärvet., debatt m.m.)
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| 6. |
- Abdelzadeh, Ali, 1981-, et al.
(författare)
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Solid or Flexible? : Social Trust from Early Adolescence to Young Adulthood
- 2017
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Ingår i: Scandinavian Political Studies. - : Wiley. - 0080-6757 .- 1467-9477. ; 40:2, s. 207-227
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Tidskriftsartikel (refereegranskat)abstract
- The belief that people are generally fair and trustworthy has generated plenty of scholarly attention in recent decades, particularly in the Scandinavian countries, which are often known for high levels of social trust. This article draws attention to the current discussion in the literature on whether social trust is a stable cultural trait marked by persistence or is based on experiences and subject to change throughout life. Based on unique longitudinal data from five different cohorts of young people in Sweden, ranging in age from 13 to 28 years, this article provides an empirical contribution on how social trust develops over time. The results show that there is a greater degree of instability in social trust between 13 and 15 years of age than in other age groups, and that social trust appears to stabilize with age. Findings also indicate that there are substantial inter-individual differences in social trust among young people within the same age group, both in initial levels and in the rates of change over time. The article concludes that although social trust is relatively stable it tends to crystallize in early adulthood, highlighting the relevance of the impressionable-years hypothesis.
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| 7. |
- Abdelzadeh, Ali, 1981-, et al.
(författare)
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Tolerance and other citizen competencies
- 2017
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Ingår i: Mechanisms of tolerance. - Stockholm : Forum för levande historia. - 9789186261634 ; , s. 149-176
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 8. |
- Abdelzadeh, Ali, 1981-, et al.
(författare)
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Tolerans och andra medborgarkompetenser
- 2017
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Ingår i: Toleransens mekanismer. - Stockholm : Forum för levande historia. - 9789186261610 ; , s. 145-170
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 9. |
- Abdelzadeh, Ali, 1981-, et al.
(författare)
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Ungas röst : En studie om ungdomars valdeltagande 2018 och deras egna tankar om att delta i val
- 2022
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- Valdeltagandet är högt bland unga och följer ganska väl befolkningen i stort. Det finns dock en oroväckande klyfta i samhället, alla unga upplever inte att de har lika möjligheter att göra sin röst hörd. Unga med sämre socioekonomiska förutsättningar deltar i lägre utsträckning i val. Under samtal med unga träder också en allvarlig bild fram av att unga inte upplever att samhället finns till för dem eller att politiska företrädare inte lyssnar. De känner sig inte inkluderade.Den här rapporten visar att det spelar roll var unga växer upp och bor. Ungas socioekonomiska förutsättningar är tätt sammankopplade med valdeltagande. Det finns betydande skillnader i valdeltagande mellan olika områden i kommunerna i hela landet. Det visar att skillnader i social jämlikhet riskerar att leda till politisk ojämlikhet. De geografiska skillnaderna i valdeltagande pekar på att det finns behov av insatser som utjämnar skillnader i uppväxt- och levnadsvillkor. Alla unga ska ges likvärdiga förutsättningar, det ska inte spela någon roll var de bor.
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| 10. |
- Abrahamsson, Kenneth, et al.
(författare)
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Katekes för ett lärande arbetsliv
- 2007
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Bok (övrigt vetenskapligt/konstnärligt)abstract
- Det här är en bok om en tankeväckande seminarieserie och mötesresa genom arbetsplatslärandets Sverige. Arrangör var forskarnätverket Larena i samarbete med NTG-Lär och Arbetsmiljöforum.Seminarieserien Arbetsplatsen som lärsystem – en utmaning för Sverige började som en idé i en hängmatta. Den blev sedan en nästan tvåårig seminarieserie – en lärstafett – där lärande i arbetslivet belystes utifrån olika teman. Syftet var att samla arbetslivsaktörer och andra intresserade för att genom samtal och reflektioner sätta lärande och kompetensutveckling i fokus för politiker och arbetsmarknadens parter och väcka nytt liv i diskussionen om kompetensutveckling i arbetslivet. Vilka krav ska man till exempel ställa på arbetsorganisation för att främja arbetsplatslärandet? Hur ska sambandet se ut mellan lön och lärande? Kan man certifiera arbetsplatser som främjar lärande? Frågorna var många. I bokens första del berättar arbetslivsjournalisten Gunhild Wallin om hur mötesresan avlöpte. I andra delen utvecklar Kenneth Abrahamsson idéer om hur lärandet i arbetslivet kan främjas i dialog och samverkan mellan arbetsmarknadens parter, staten och den enskilde. (Abstract från förlagets hemsida)
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| 11. |
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| 12. |
- Adolfsson, Karin, et al.
(författare)
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Referral of patients with cancer to palliative care: Attitudes, practices and work-related experiences among Swedish physicians
- 2022
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Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 31:6
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Tidskriftsartikel (refereegranskat)abstract
- Objective This study aimed to explore the attitudes, practices and work-related experiences among Swedish physicians regarding the referral process, integration and transition between oncology care and palliative care (PC). Methods A cross-sectional online survey was performed with a study-specific questionnaire in 2016-2017 in south-eastern Sweden. Physicians working with cancer patients within surgical specialties, medical specialties and paediatric oncology participated. Results The vast majority of the 130 participating physicians (99.2%) stated that PC was beneficial for the patient and were positive about early integration of PC (65.5%). Still, only 27.6% of the participants introduced PC at an early stage of non-curable disease. However, paediatric oncologists had a very early introduction of PC in comparison with medical specialties (p = 0.004). Almost 90% of the study population said they wanted to know that the patient had been taken care of by another care facility. Conclusions Despite the physicians' positive attitude towards early integration and referral to PC, they often acted late in the disease trajectory. This late approach can reduce the patient's opportunity of improving quality of life during severe circumstances. There is a need for in-depth knowledge of the physicians' challenges in order to bridge the gap between intentions and actions.
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| 13. |
- af Winklerfelt Hammarberg, Sandra, et al.
(författare)
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Clinical effectiveness of care managers in collaborative primary health care for patients with depression : 12-and 24-month follow-up of a pragmatic cluster randomized controlled trial
- 2022
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Ingår i: BMC Primary Care. - : Springer Nature. - 2731-4553. ; 23:1
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Tidskriftsartikel (refereegranskat)abstract
- Background In previous studies, we investigated the effects of a care manager intervention for patients with depression treated in primary health care. At 6 months, care management improved depressive symptoms, remission, return to work, and adherence to anti-depressive medication more than care as usual. The aim of this study was to compare the long-term effectiveness of care management and usual care for primary care patients with depression on depressive symptoms, remission, quality of life, self-efficacy, confidence in care, and quality of care 12 and 24 months after the start of the intervention. Methods Cluster randomized controlled trial that included 23 primary care centers (11 intervention, 12 control) in the regions of Vastra Gotaland and Dalarna, Sweden. Patients >= 18 years with newly diagnosed mild to moderate depression (n = 376: 192 intervention, 184 control) were included. Patients at intervention centers co-developed a structured depression care plan with a care manager. Via 6 to 8 telephone contacts over 12 weeks, the care manager followed up symptoms and treatment, encouraged behavioral activation, provided education, and communicated with the patient's general practitioner as needed. Patients at control centers received usual care. Adjusted mixed model repeated measure analysis was conducted on data gathered at 12 and 24 months on depressive symptoms and remission (MADRS-S); quality of life (EQ5D); and self-efficacy, confidence in care, and quality of care (study-specific questionnaire). Results The intervention group had less severe depressive symptoms than the control group at 12 (P = 0.02) but not 24 months (P = 0.83). They reported higher quality of life at 12 (P = 0.01) but not 24 months (P = 0.88). Differences in remission and self-efficacy were not significant, but patients in the intervention group were more confident that they could get information (53% vs 38%; P = 0.02) and professional emotional support (51% vs 40%; P = 0.05) from the primary care center. Conclusions Patients with depression who had a care manager maintained their 6-month improvements in symptoms at the 12- and 24-month follow-ups. Without a care manager, recovery could take up to 24 months. Patients with care managers also had significantly more confidence in primary care and belief in future support than controls.
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| 14. |
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| 15. |
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Against separation : experiences in early intervention for young children with disabilities in Russia and Byelorussia
- 2014
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Samlingsverk (redaktörskap) (övrigt vetenskapligt/konstnärligt)abstract
- This book is a result of a Russian-Swedish cooperation between the St Petersburg Early Intervention Institute and the Department of Social work, Ersta Sköndal University College in Stockholm. The framework of this cooperation has been a project financed by the Swedish International Development Cooperation Agency, Sida. The theme of the book is early intervention for children with disabilities, which is an advancing field of knowledge in Russia and other post-Soviet countries, rapidly catching up with clinical standards in Western Europe and the United States but still facing serious challenges from predominant clinical traditions and general attitudes towards handicapped children.The book provides examples of implementation and development of Early Intervention services in Novgorod, Archangelsk, Minsk and St Petersburg, together with theoretical contributions focusing on subjects like attachment theory, identity development, professional team work, existential and ethical aspects and communication. It also discusses possibilities and dilemmas with practitioners working as researchers in their own field.The book also brings forward some important conclusions for early intervention as a theoretical and practical field. An effective program in the field of early intervention should build on a clinical program, an educational program, knowledge achievement by means of a clinical research program and policymaking activities. We hope this book will be useful, for practitioners struggling with the complex reality related to the implementation of early intervention as well as for academics and students in this field.
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| 16. |
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Ageing with disability : a lifecourse perspective
- 2013
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Samlingsverk (redaktörskap) (refereegranskat)abstract
- This is the first book to address the issue of ageing after a long life with disability. It breaks new ground through its particular life course perspective, examining what it means to age with a physical or mental disability and what the implications are of 'becoming old' for people who have had extensive disabilities for many years. These people may have had to leave the labour market early, and the book looks at available care resources, both formal and informal. Ageing with disability challenges set ideas about successful ageing, as well as some of those about disabilities. The life course approach that is used unfolds important insights about the impact of multiple disabilities over time and on the phases of life. The book highlights the meaning of care in unexplored contexts, such as where ageing parents are caregivers or regarding mutual care in disabled couples. These are areas of knowledge which have, to date, been totally neglected.
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| 17. |
- Agius, Josefine, et al.
(författare)
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Kvinnor på skyddade boenden måste kunna ta tillbaka sina liv
- 2022
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Ingår i: Expressen. - 1103-923X. ; :22-02-09
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Tidskriftsartikel (populärvet., debatt m.m.)abstract
- Sveriges myndigheter och kommuner måste sluta nöja sig med att kvinnor förvaras på skyddat boende under obestämd tid. Josefine Agius och Elisabet Mattsson uppmanar Sveriges myndigheter och kommuner att prioritera rätt i regeringens åtgärdspaket.
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| 18. |
- Agius, Josefine, et al.
(författare)
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”Stabil vardag måste ses som en del av traumabehandling”
- 2022
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Ingår i: Dagens medicin. - 1104-7488. ; :2022-04-07
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Tidskriftsartikel (populärvet., debatt m.m.)abstract
- För kvinnor utan fast bostad är det omöjligt att få traumabehandling, eftersom en stabil vardag är ett krav, skriver Josefine Agius, Elisabet Mattsson och Woman Advisory Board.
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| 19. |
- Agius, Josefine, et al.
(författare)
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Trygg kan ingen vara : Elever som lever med skyddade personuppgifter
- 2022
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Ingår i: Skolhälsan. - : Riksföreningen för skolsköterskor. - 0284-284X. ; :4, s. 16-21
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Tidskriftsartikel (populärvet., debatt m.m.)abstract
- I Sverige lever över 10 000 barn med skyddade personuppgifter på grund av hot och våld. För barn och ungdomar som tvingas leva gömda kan skolan vara en tillflyktsort i en annars kaotisk värld.
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| 20. |
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| 21. |
- Agnafors, Sara, et al.
(författare)
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Maternal temperament and character : associations to child behavior at the age of 3 years.
- 2021
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Ingår i: Child and Adolescent Psychiatry and Mental Health. - : Springer Science and Business Media LLC. - 1753-2000. ; 15:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The influence of maternal temperament on child behavior, and whether maternal temperament impact boys and girls differently is not thoroughly studied. The aim was to investigate the impact of maternal temperament and character on child externalizing and internalizing problems at age 3.METHODS: A birth-cohort of 1723 mothers and their children were followed from birth to age 3. At the child's age of 3 months, the mothers filled out standardized instruments on their temperament and character using the Temperament and Character Inventory (TCI) and depressive symptoms using the Edinburgh Postnatal Depression Scale (EPDS). At the child's age of 3 years, the mothers reported on child behavior using the Child Behaviour Checklist (CBCL).RESULTS: Maternal temperamental trait novelty seeking was positively associated with externalizing problems in the total population and in girls. Harm avoidance was positively associated with externalizing problems in the total population and in boys, and with internalizing problems in the total population and boys and girls respectively. Maternal character traits of self-directedness and cooperativeness were negatively associated with both externalizing and internalizing problems in the total population and in boys and girls respectively.CONCLUSIONS: Maternal character traits were more influential on child behavior than were temperamental traits, and thus the opportunities for intervention targeted at parental support are good. Maternal mental health and socioeconomic aspects also increased the risk for child behavior problems, indicating the need for recognition and support in clinical settings.
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| 22. |
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| 23. |
- Ahlqvist, Margary, et al.
(författare)
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Handling of peripheral intravenous cannulae : effects of evidence-based clinical guidelines.
- 2006
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 15:11, s. 1354-61
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Tidskriftsartikel (refereegranskat)abstract
- AIM: This study aimed at evaluating the outcome of implemented evidence-based clinical guidelines by means of surveying the frequency of thrombophlebitis, nurses' care, handling and documentation of peripheral intravenous cannulae. BACKGROUND: Peripheral intravenous cannulae are frequently used for vascular access and, thereby, the patients will be exposed to local and systemic infectious complications. Evidence-based knowledge of how to prevent these complications and how to care for patients with peripheral intravenous cannula is therefore of great importance. Deficient care, handling and documentation of peripheral intravenous cannulae have previously been reported. DESIGN: A cross-sectional survey was conducted by a group of nurses at three wards at a university hospital before and after the implementation of the evidence-based guidelines. METHOD: A structured observation protocol was used to review the frequency of thrombophlebitis, the nurses' care, handling and the documentation of peripheral intravenous cannulae in the patient's record. RESULTS: A total of 107 and 99 cannulae respectively were observed before and after the implementation of the guidelines. The frequency of peripheral intravenous cannulae without signs of thrombophlebitis increased by 21% (P < 0.01) and the use of cannula size 0.8 mm increased by 22% (P < 0.001). Nurses' documentation of peripheral intravenous cannula improved significantly (P < 0.001). CONCLUSION: We conclude that implementation of the guidelines resulted in significant improvements by means of decreased frequency of signs of thrombophlebitis, increased application of smaller cannula size (0.8 mm), as well as of the nurses' documentation in the patient's record. RELEVANCE TO CLINICAL PRACTICE: Further efforts to ameliorate care and handling of peripheral intravenous cannulae are needed. This can be done by means of increasing nurses' knowledge and recurrent quality reviews. Well-informed patients can also be more involved in the care than is common today.
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| 24. |
- Ahlström, Gerd, et al.
(författare)
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Ageing people with intellectual disabilities and the association between frailty factors and social care : A Swedish national register study
- 2022
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Ingår i: Journal of Intellectual Disabilities. - Thousand Oaks, CA : Sage Publications. - 1744-6295 .- 1744-6309. ; 26:4, s. 900-918
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to describe the social care provided for different age groups of people with intellectual disability, 55 years or above, and to investigate the association between such care and frailty factors for those with diagnosed level of intellectual disabilities. Descriptive and logistic regression analyses were used. Commonest forms of social care among the 7936 people were Residential care, Daily activities and Contact person. Home help and Security alarm increased with age. The frailty factors significantly associated with increased social care were age, polypharmacy and severe levels of intellectual disabilities. Persons most likely to be in residential care were in the age group 65–79 with polypharmacy and severe disability. The results indicate a need for further research of how frailty factors are considered in social care and longstanding medication, especially then severe intellectual disability hinders communication. A national strategic plan for preventive interventions should be developed to ensure the best possible healthy ageing. © The Author(s) 2021.
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| 25. |
- Ahmadi, Mehrnaz, et al.
(författare)
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Sense of coherence or self-efficacy as predictors of health-related quality of life in sickle cell disease patients
- 2023
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Ingår i: Annals of Hematology. - : Springer. - 0939-5555 .- 1432-0584. ; 102, s. 519-528
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Tidskriftsartikel (refereegranskat)abstract
- Patients with sickle cell disease (SCD) suffer from impaired health-related quality of life (HRQoL). This study aimed to determine the level of HRQoL, sense of coherence (SOC), and self-efficacy (SE) in a sample of SCD patients, and to explore predictors of their physical and mental HRQoL. A cross-sectional descriptive study was conducted on 83 SCD patients of one university hospital. The data of the study was collected through Persian versions of the Short-Form Health Survey SF-36 (RAND 36-item), the Sense of Coherence Scale (SOC-13), and the Sickle Cell Self-Efficacy Scale (SCSES). The mean age of the patients was 26.34 ± 8.19 years old. Patients' mean scores for the Physical Component Summary (PCS), Mental Component Summary (MCS), SOC, and SCSES were 40.57 ± 17.18 (range: 0-100), 50.44 ± 17.95 (range: 0-100), 52.40 ± 15.35 (range: 13-91), 26.40 ± 6.96 (range: 9-45), respectively. Regression models showed that the level of the patients' SOC, was the main predictor of the MCS (β = 0.37, p < 0.001). However, the level of the patients' SE was the main predictor of the PCS (β = 0.30, p = 0.004). Also, "blood transfusion history" in patients was a common predictor for both the PCS (β = - 0.28, p = 0.008) and the MCS (β = - 0.29, p = 0.003). These results can assist nurses and clinicians to plan clinical interventions for SCD patients by focusing on increasing the level of the SOC and SE and improving SCD patients' HRQoL. Furthermore, measuring the level of the SOC and self-efficacy as screening tests are useful to find patients with a greater risk of impaired HRQoL.
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| 26. |
- Akkawi El Edelbi, Ranaa, et al.
(författare)
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Parents' experiences of handling oral anticancer drugs at home : 'It all falls on me …'
- 2023
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Ingår i: Journal of Evaluation In Clinical Practice. - : Wiley-Blackwell. - 1356-1294 .- 1365-2753. ; 29:1, s. 94-100
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The aim of this study was to describe the experiences of parents handling oral anticancer drugs in a home setting.METHODS: Parents of children with cancer were recruited from a paediatric oncology ward in Sweden to participate in an interview. The interviews were transcribed verbatim and subjected to qualitative content analysis.RESULTS: We found the following categories and subcategories: parents' views on the provided information-lack of, too little or contradictory information, and parents' preferences for information delivery; safety over time; correct drug dose; and drug administration. As time passed, most parents adapted to their child's illness, felt safer and found it easier to take in and process any given information. Parents preferred information in different formats (written, movie clips and orally) and in their mother tongue. Many parents were aware of the importance of giving an accurate dose to their child and described the process of drug administration as overwhelming.CONCLUSION: Parents need to be provided with accurate, timely, nonconflicting and repeated information-in different forms and in their mother tongue-on how to handle oral anticancer drugs at home.
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| 27. |
- Al-Baldawi, Riyadh, et al.
(författare)
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Underskatta inte religiös extremism
- 2018
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Ingår i: Svenska Dagbladet. - 1101-2412. ; :2018-01-08, s. 4-4
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Tidskriftsartikel (populärvet., debatt m.m.)abstract
- En del av det svenska biståndets insatser planerade för Mellanöstern kan bli omöjliga att genomföra. Sidas analytiker har inte tagit tillräcklig hänsyn till en ökande religiös våldsbejakande extremism och dess genomslag i hela området.
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| 28. |
- Alafuzoff, I, et al.
(författare)
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A comparison of multiplex and simplex families with Alzheimer's disease/senile dementia of Alzheimer type within a well defined population.
- 1994
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Ingår i: Journal of neural transmission. Parkinson's disease and dementia section. - 0936-3076. ; 7:1, s. 61-72
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Tidskriftsartikel (refereegranskat)abstract
- A study was made on 150 clinically demented patients presenting at autopsy at Umeå University Hospital in Sweden. In 90 of the cases dementia was considered to be primary in nature and of these forty six per cent (41 cases), fulfilled both the clinical and histopathological criteria for the diagnosis of Alzheimer's disease/Senile dementia of Alzheimer type (AD/SDAT). The families of these 41 AD/SDAT cases were then studied, and a family history obtained through interviews with multiple family informants and from civil and medical records. Additional diseased family members suffering from progressive dementia (multiplex families) were observed in 12 probands out of 41 (29%). Multiplex families exhibited similar clinical and histopathological characteristics as simplex families containing a single affected individual. The secondary cases in the multiplex families exhibited similar demographic and clinical characteristics as the probands. 39% of the multiplex and 14% of the simplex cases had an early age of onset of the disease, that was under 65 years. The overall prevalence of progressive dementia disorders in the 41 families was 5.9%. The prevalence of a progressive dementia disorder was 11% in the multiplex families (14% for the early onset cases) and 3.5% in the simplex families (2% for the early onset cases). The prevalence of progressive dementia disorder for family members who had passed the mean age of the onset of the disease for their family, was 45% for multiplex and 18% for simplex families. Furthermore the incidence rate for dementia was significantly higher (p < 0.005) in multiplex families (5.5 per 1,000 person years) when compared to simplex families (2.5 per 1,000 person years). No differences could be seen in parental age at birth of the diseased when comparing the two sets of families. However in multiplex families the duration of the disease was significantly (p < 0.025) shorter, in subjects with parental age at birth over 35 years compared to those with a parental age under 35 years. The multiplex families contained significantly (p < 0.025) larger sibships; and showed a significantly lower age of onset for the disease (p < 0.001), and a significantly longer duration of disease (p < 0.05) compared to the simplex families. A significant intra familial correlation of age at disease onset was observed in both sets of the families.
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| 29. |
- Alevronta, Eleftheria, et al.
(författare)
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Dose-response relationships of intestinal organs and excessive mucus discharge after gynaecological radiotherapy
- 2021
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Ingår i: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203 .- 1932-6203. ; 16:4 April
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Tidskriftsartikel (refereegranskat)abstract
- Background The study aims to determine possible dose-volume response relationships between the rectum, sigmoid colon and small intestine and the ‘excessive mucus discharge’ syndrome after pelvic radiotherapy for gynaecological cancer. Methods and materials From a larger cohort, 98 gynaecological cancer survivors were included in this study. These survivors, who were followed for 2 to 14 years, received external beam radiation therapy but not brachytherapy and not did not have stoma. Thirteen of the 98 developed excessive mucus discharge syndrome. Three self-assessed symptoms were weighted together to produce a score interpreted as ‘excessive mucus discharge’ syndrome based on the factor loadings from factor analysis. The dose-volume histograms (DVHs) for rectum, sigmoid colon, small intestine for each survivor were exported from the treatment planning systems. The dose-volume response relationships for excessive mucus discharge and each organ at risk were estimated by fitting the data to the Probit, RS, LKB and gEUD models. Results The small intestine was found to have steep dose-response curves, having estimated dose-response parameters: γ : 1.28, 1.23, 1.32, D : 61.6, 63.1, 60.2 for Probit, RS and LKB respectively. The sigmoid colon (AUC: 0.68) and the small intestine (AUC: 0.65) had the highest AUC values. For the small intestine, the DVHs for survivors with and without excessive mucus discharge were well separated for low to intermediate doses; this was not true for the sigmoid colon. Based on all results, we interpret the results for the small intestine to reflect a relevant link. Conclusion An association was found between the mean dose to the small intestine and the occurrence of ‘excessive mucus discharge’. When trying to reduce and even eliminate the incidence of ‘excessive mucus discharge’, it would be useful and important to separately delineate the small intestine and implement the dose-response estimations reported in the study.
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| 30. |
- Alevronta, Eleftheria, et al.
(författare)
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Dose-response relationships of the sigmoid for urgency syndrome after gynecological radiotherapy.
- 2018
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Ingår i: Acta oncologica (Stockholm, Sweden). - 1651-226X .- 0284-186X. ; 57:10, s. 1352-1358
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Tidskriftsartikel (refereegranskat)abstract
- To find out what organs and doses are most relevant for 'radiation-induced urgency syndrome' in order to derive the corresponding dose-response relationships as an aid for avoiding the syndrome in the future.From a larger group of gynecological cancer survivors followed-up 2-14years, we identified 98 whom had undergone external beam radiation therapy but not brachytherapy and not having a stoma. Of those survivors, 24 developed urgency syndrome. Based on the loading factor from a factor analysis, and symptom frequency, 15 symptoms were weighted together to a score interpreted as the intensity of radiation-induced urgency symptom. On reactivated dose plans, we contoured the small intestine, sigmoid colon and the rectum (separate from the anal-sphincter region) and we exported the dose-volume histograms for each survivor. Dose-response relationships from respective risk organ and urgency syndrome were estimated by fitting the data to the Probit, RS, LKB and gEUD models.The rectum and sigmoid colon have steep dose-response relationships for urgency syndrome for Probit, RS and LKB. The dose-response parameters for the rectum were D50: 51.3, 51.4, and 51.3Gy, γ50=1.19 for all models, s was 7.0e-09 for RS and n was 9.9×107 for LKB. For Sigmoid colon, D50 were 51.6, 51.6, and 51.5Gy, γ50 were 1.20, 1.25, and 1.27, s was 2.8 for RS and n was 0.079 for LKB.Primarily the dose to sigmoid colon as well as the rectum is related to urgency syndrome among gynecological cancer survivors. Separate delineation of the rectum and sigmoid colon in order to incorporate the dose-response results may aid in reduction of the incidence of the urgency syndrome.
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| 31. |
- Aléx, Lena, et al.
(författare)
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Balancing within various discourses--the art of being old and living as a Sami woman.
- 2006
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Ingår i: Health Care for Women International. - : Informa UK Limited. - 0739-9332 .- 1096-4665. ; 27:10, s. 873-92
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this part of the Umeå 85+ Study was to explore how indigenous women narrate their lives and their experience of being old as Sami women. Interviews with 9 old Sami women were analyzed using grounded theory. The categories identified were "reindeer as the basis of life," "longing for significant Sami values," "feeling valued as a Sami woman," and "changing for survival;" these evolved into the core category: "balancing within various discourses-the art of being old and living as a Sami woman." Knowing how to balance provided the ability to make use of available opportunities.
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| 32. |
- Aléx, Lena, 1948-, et al.
(författare)
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Construction of masculinities among men aged 85 and older in the north of Sweden.
- 2008
-
Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 17:4, s. 451-9
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The aim was to analyse the construction of masculinities among men aged 85 and older. BACKGROUND: All societies have a gender order, constructed from multiple ideas of what is seen as feminine and masculine. As the group of men aged 85 and older is increasing in size and their demand for care will increase, we must recognize the importance of studying these men and various discourses of masculinities. DESIGN: Qualitative explorative. METHODS: Qualitative content analysis was used to analyse thematic narratives. Masculinity theories provided the point of departure for the analysis. RESULTS: The analysis coalesced into three masculinities. 'Being in the male centre', developed from subthemes as: taking pride in one's work and economic situation; being in the centre in relation to others; regarding women as sexual objects; and belonging to a select group. 'Striving to maintain the male facade' developed from subthemes as: emphasizing 'important' connections; having feelings of loss; striving to maintain old norms and rejecting the fact of being old. 'Being related' was formulated from subthemes as: feeling at home with domestic duties; being concerned; accepting one's own aging; and reflecting on life. CONCLUSIONS: Our study indicates the importance of being aware of the existence of multiple masculinities, in contrast to the generally unproblematic and unsubtle particular healthcare approaches which consider men as simply belonging to one masculinity. Relevance to clinical practice. Diverse masculinities probably affect encounters between men and healthcare providers and others who work with an older population and therefore our results are of importance in a caring context.
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| 33. |
- Aléx, Lena, et al.
(författare)
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Constructions of various femininities among the oldest old women.
- 2006
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Ingår i: Health Care for Women International. - Washington, D.C. : Informa UK Limited. - 0739-9332 .- 1096-4665. ; 27:10, s. 853-72
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Tidskriftsartikel (refereegranskat)abstract
- This study forms part of the Umeå 85+ Study, and the aim was to explore various gendered constructions of femininities among the oldest old women. Femininities are seen as various ways of shaping oneself as a woman in relation to the impact of historical, social, and cultural circumstances. Thematic narratives were analyzed using qualitative content analysis. Through interpreting these narratives in the light of gender theories, we were able to discern four femininities: "being connected," "being an actor," "living in the shadow of others," and "being alienated." The oldest old women displayed complex outlooks on femininities, and no femininity was interpreted as being in the center related to the other femininities. Further research is needed in order to disclose the complexity of femininities related to factors such as social class, ethnicity, and financial situation among the oldest old, and to acquire a greater knowledge of various femininities.
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| 34. |
- Alexandersson, Pär, et al.
(författare)
-
Omsorgskonst
- 2021
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Ingår i: Kvalitet i äldreomsorgen. - Lund : Studentlitteratur AB. - 9789144141992 ; , s. 174-182
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 35. |
- Alexandersson, Pär, et al.
(författare)
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Omsorgstagaren som medberättare
- 2021
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Ingår i: Kvalitet i äldreomsorgen. - Lund : Studentlitteratur AB. - 9789144141992 ; , s. 149-157
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 36. |
- Alexandersson, Pär
(författare)
-
Socialtjänstens värdegrunder : Etik i förarbeten och lagar om fattigvård, socialvård och socialtjänst
- 2018
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- I denna studie beskrivs och analyseras den svenska fattigvårdens, socialvårdens och socialtjänstens ”värdehistoria”. Det är berättelsen om hur mellanmänskliga värden har använts för offentliga lösningar byggda på dygder, plikter och nyttoidéer.Värdefrågor har alltid varit grundläggande i lagar och förarbeten inom området, men det är ovanligt med uttalat etiska analyser, reflektioner och ställningstaganden i statliga utredningar, propositioner och betänkanden från riksdagsutskott. Det gäller både i äldre tid och under de senaste decennierna.Människosynen i lagar och förarbeten om socialtjänsten betonar den enskildes individualitet, möjligheter och behov. Det finns ett tydligt fokus på individuellt oberoende samtidigt som socialtjänstlagens ”portalparagraf” bär spår av en gemenskapsmoral med rötter i akademisk diskussion.I dag finns det tecken på skillnader i värden mellan olika grupper, såsom rättigheter för barn och människor med funktionsnedsättningar och en mer traditionellt etisk värdegrund för äldreomsorgen.
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| 37. |
- Alexius, Katarina, et al.
(författare)
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Forskare: Ge socialtjänsten rätt verktyg
- 2015
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Ingår i: Svenska dagbladet. - Stockholm. - 1101-2412. ; :2015-12-11
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Tidskriftsartikel (populärvet., debatt m.m.)abstract
- Att socialtjänstens personal kan hantera och tolka nyckelbegrepp som ”barnets bästa” och ”god vård” är helt avgörande för förstärkningar av barns reella rättigheter, skriver forskare vid Stockholms universitet och Ersta Sköndal högskola.
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| 38. |
- Alexius, Susanna, et al.
(författare)
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Vad har ni för värden på kontot?
- 2017
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Ingår i: Kurage. - Stockholm : Idealistas förlag. - 2001-175X. ; :23
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Tidskriftsartikel (populärvet., debatt m.m.)
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| 39. |
- Alizadeh, Zahra, et al.
(författare)
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Transitional Cancer Care Program from Hospital to Home in the Health Care System of Iran
- 2021
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Ingår i: Asian Pacific journal of cancer prevention : APJCP. - 2476-762X. ; 22:4, s. 1231-1237
-
Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: Transitional care program refers to the health care continuity during transferring from one health care setting to another or to home. This is an essential program for cancer patients and reduces the risk of unnecessary hospital admissions as well as the complications of the disease. The aim of this study was to develop a transitional cancer care program from hospital to home in the health care system of Iran.METHODS: This study is a health policy and system research. It was conducted in four stages from October 2019 to January 2020. The first stage was a qualitative study. The qualitative data were collected through semi-structured interviews with 24 participants and a focus group with eight experts. In the second stage, a literature review of transitional care models was carried out. The initial version of the transitional cancer care program was developed based on the qualitative results and the literature review in the third stage. The validity and feasibility of the program were assessed using the Delphi study in the fourth stage.RESULTS: Six major categories were extracted from the qualitative results, consisting of "integrated services for the continuity of care", "holistic care", "care standardization", "the use of telemedicine", "the transparency of rules" and "the care process provision". Using these results and extracted the three common models of transitional care, the initial program was developed in three phases of pre-discharge, post-discharge, and transitional care with six protocols. The content validity of the program (98.7%) and its feasibility (95.8%) were approved by experts in the Delphi rounds.CONCLUSIONS: It is necessary to revise hospitals' discharge program, and home health care center's plan for admission and delivering health care services for cancer patients. Also, a pilot program is necessary to find the system advantages and disadvantages..
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| 40. |
- Allvin, Renée, 1956-, et al.
(författare)
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Self-assessed competence and need for further training among registered nurses in somatic hospital wards in Sweden : a cross-sectional survey
- 2020
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Ingår i: BMC Nursing. - : BMC. - 1472-6955. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Professional competence and continuous professional development is essential for ensuring high quality and safe nursing care, and it might be important for motivating nurses to stay in the profession. Thus, there is a need to identify the developmental process of nursing competency. Assessment of competence and need for further training helps to identify areas for quality improvement, and to design interventions in order to facilitate continuous competence development in different work contexts. The current study aimed to 1) describe registered nurses' self-assessment of clinical competence as well as the need for further training, and 2) explore possible differences between registered nurses with varying lengths of professional experience as a nurse (<= 0,5 year, > 0,5-5 years, and >= 6 years). Methods A cross-sectional survey design was applied, using the Professional Nurse Self-Assessment Scale of clinical core competencies II. Registered nurses (n = 266) working in medical and surgical contexts in hospitals in Sweden responded (response rate 51%). Independent student t-test and analysis of variance were carried out. Results Registered nurses assessed their competence highest in statements related to cooperation with other health professionals; taking full responsibility for own activities; and acting ethically when caring for patients. They assessed their need for further training most for statements related to assessing patients' health needs by telephone; giving health promotion advice and recommendations to patients by telephone; as well as improving a creative learning environment for staff at the workplace. For self-assessed competence and need for further training, differences between the groups for 35 and 46 items respectively, out of 50 were statistically significant. Conclusions Although the registered nurses assessed their competence high for important competence components expected of professionals such as cooperation with other healthcare professionals, it is problematic that knowledge of interactions and side-effects of different types of medication were reported as having the highest need of training. Longitudinal follow up of newly graduated nurses regarding their continuous development of competence as well as further training is needed.
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| 41. |
- Almqvist, E, et al.
(författare)
-
Ancestral differences in the distribution of the delta 2642 glutamic acid polymorphism is associated with varying CAG repeat lengths on normal chromosomes : insights into the genetic evolution of Huntington disease.
- 1995
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Ingår i: Human Molecular Genetics. - : Oxford University Press (OUP). - 0964-6906 .- 1460-2083. ; 4:2, s. 207-14
-
Tidskriftsartikel (refereegranskat)abstract
- This study addresses genetic factors associated with normal variation of the CAG repeat in the Huntington disease (HD) gene. To achieve this, we have studied patterns of variation of three trinucleotide repeats in the HD gene including the CAG and adjacent CCG repeats as well as a GAG polymorphism at residue 2642 (delta 2642). We have previously demonstrated that variation in the CCG repeat is associated with variation of the CAG repeat length on normal chromosomes. Here we show that differences in the GAG trinucleotide polymorphism at residue 2642 is also significantly correlated with CAG size on normal chromosomes. The B allele which is associated with higher CAG repeat lengths on normal chromosomes is markedly enriched on affected chromosomes. Furthermore, this glutamic acid polymorphism shows significant variation in different ancestries and is absent in chromosomes of Japanese, Black and Chinese descent. Haplotype analysis of both the CCG and delta 2642 polymorphisms have indicated that both are independently associated with differences in CAG length on normal chromosomes. These findings lead to a model for the genetic evolution of new mutations for HD preferentially occurring on normal chromosomes with higher CAG repeat lengths and a CCG repeat length of seven and/or a deletion of the glutamic acid residue at delta 2642. This study also provides additional evidence for genetic contributions to demographic differences in prevalence rates for HD.
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| 42. |
- Almqvist, E, et al.
(författare)
-
Geographical distribution of haplotypes in Swedish families with Huntington's disease.
- 1994
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Ingår i: Human Genetics. - 0340-6717 .- 1432-1203. ; 94:2, s. 124-8
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Tidskriftsartikel (refereegranskat)abstract
- This study was planned to determine the number of origins of the mutation underlying Huntington's disease (HD) in Sweden. Haplotypes were constructed for 23 different HD families, using six different polymorphisms [(CCG)n, GT70, 674, BS1, E2 and 4.2], including two within the gene. In addition, extensive genealogical investigations were performed, and the geographical origin of the haplotypes was studied. Ten different haplotypes were observed suggesting multiple origins for the HD mutation in Sweden. Analysis of the two polymorphic markers within the HD gene (the CCG repeat and GT70) indicates that there are at least three origins for the HD mutation in Sweden. One of these haplotypes (7/A) accounts for 89% of the families, suggesting that the majority of the Swedish HD families are related through a single HD mutation of ancient origin. Furthermore, three of the families that were previously considered to be unrelated could be traced to a common ancestor in the 15th century, a finding that is consistent with this hypothesis.
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| 43. |
- Almqvist, E, et al.
(författare)
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Risk reversals in predictive testing for Huntington disease.
- 1997
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Ingår i: American Journal of Human Genetics. - : Elsevier BV. - 0002-9297 .- 1537-6605. ; 61:4, s. 945-52
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Tidskriftsartikel (refereegranskat)abstract
- The first predictive testing for Huntington disease (HD) was based on analysis of linked polymorphic DNA markers to estimate the likelihood of inheriting the mutation for HD. Limits to accuracy included recombination between the DNA markers and the mutation, pedigree structure, and whether DNA samples were available from family members. With direct tests for the HD mutation, we have assessed the accuracy of results obtained by linkage approaches when requested to do so by the test individuals. For six such individuals, there was significant disparity between the tests. Three went from a decreased risk to an increased risk, while in another three the risk was decreased. Knowledge of the potential reasons for these changes in results and impact of these risk reversals on both patients and the counseling team can assist in the development of strategies for the prevention and, where necessary, management of a risk reversal in any predictive testing program.
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| 44. |
- Almqvist, E, et al.
(författare)
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Screening of amyloid precursor protein gene mutation (APP 717 Val-->Ile) in Swedish families with Alzheimer's disease.
- 1993
-
Ingår i: Journal of neural transmission. Parkinson's disease and dementia section. - 0936-3076. ; 6:2, s. 151-6
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Tidskriftsartikel (refereegranskat)abstract
- Screening for the APP 717 Val-->Ile mutation in the amyloid precursor protein (APP) gene in 34 Swedish families with familial Alzheimer's disease (FAD), 16 sporadic cases of Alzheimer's disease and five patients with Down's syndrome (DS) failed to identify further cases of the mutation. These results suggests that the mutation is rare among Swedish families with Alzheimer's disease. In addition, we summarize present reports of the frequency of the mutation.
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| 45. |
- Almqvist, Elisabeth W., 1958-
(författare)
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A randomized, placebo-controlled trial of coenzyme Q10 and remacemide in Huntington's disease
- 2001
-
Ingår i: Neurology. - : Ovid Technologies (Wolters Kluwer Health). - 0028-3878 .- 1526-632X. ; 57:3, s. 397-404
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To determine whether chronic treatment with coenzyme Q10 or remacemide hydrochloride slows the functional decline of early Huntington's disease (HD).METHODS: The authors conducted a multicenter, parallel group, double-blind, 2 x 2 factorial, randomized clinical trial. Research participants with early HD (n = 347) were randomized to receive coenzyme Q10 300 mg twice daily, remacemide hydrochloride 200 mg three times daily, both, or neither treatment, and were evaluated every 4 to 5 months for a total of 30 months on assigned treatment. The prespecified primary measure of efficacy was the change in total functional capacity (TFC) between baseline and 30 months. Safety measures included the frequency of clinical adverse events.RESULTS: Neither intervention significantly altered the decline in TFC. Patients treated with coenzyme Q10 showed a trend toward slowing in TFC decline (13%) over 30 months (2.40- versus 2.74-point decline, p = 0.15), as well as beneficial trends in some secondary measures. There was increased frequency of nausea, vomiting, and dizziness with remacemide and increased frequency of stomach upset with coenzyme Q10.CONCLUSIONS: Neither remacemide nor coenzyme Q10, at the dosages studied, produced significant slowing in functional decline in early HD.
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| 46. |
- Almqvist, E W, et al.
(författare)
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A worldwide assessment of the frequency of suicide, suicide attempts, or psychiatric hospitalization after predictive testing for Huntington disease.
- 1999
-
Ingår i: American Journal of Human Genetics. - 0002-9297 .- 1537-6605. ; 64:5, s. 1293-304
-
Tidskriftsartikel (refereegranskat)abstract
- Prior to the implementation of predictive-testing programs for Huntington disease (HD), significant concern was raised concerning the likelihood of catastrophic events (CEs), particularly in those persons receiving an increased-risk result. We have investigated the frequency of CEs-that is, suicide, suicide attempt, and psychiatric hospitalization-after an HD predictive-testing result, through questionnaires sent to predictive-testing centers worldwide. A total of 44 persons (0.97%) in a cohort of 4,527 test participants had a CE: 5 successful suicides, 21 suicide attempts, and 18 hospitalizations for psychiatric reasons. All persons committing suicide had signs of HD, whereas 11 (52.4%) of 21 persons attempting suicide and 8 (44.4%) of 18 who had a psychiatric hospitalization were symptomatic. A total of 11 (84.6%) of 13 asymptomatic persons who experienced a CE during the first year after HD predictive testing received an increased-risk result. Factors associated with an increased risk of a CE included (a) a psychiatric history
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| 47. |
- Almqvist, Elisabeth W., 1958-
(författare)
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Dosage effects of riluzole in Huntington's disease : a multicenter placebo-controlled study.
- 2003
-
Ingår i: Neurology. - : Ovid Technologies (Wolters Kluwer Health). - 0028-3878 .- 1526-632X. ; 61:11, s. 1551-6
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Riluzole retards striatal glutamate release and pathologic consequences in neurotoxic animal models of Huntington's disease (HD).OBJECTIVE: To determine the dosage-related impact of riluzole on chorea in HD.METHODS: An 8-week double-blind dose-ranging multicenter study of riluzole was conducted in 63 subjects (32 women, 31 men) with HD who were randomized to receive placebo, riluzole 100 mg/day, or riluzole 200 mg/day. The prespecified outcome measure was change in the total maximal chorea score of the Unified Huntington's Disease Rating Scale (UHDRS).RESULTS: Fifty-six (89%) subjects completed the study. A reduction (p < 0.01) in chorea at 8 weeks was found using a linear trend test with dose. Comparing the groups individually, the reduction in chorea for the riluzole 200-mg/day group (-2.2 +/- 3.3) was different (p = 0.01) from placebo (+0.7 +/- 3.4), but the riluzole 100-mg/day group (-0.2 +/- 2.9) was not. Riluzole did not improve other motor, cognitive, behavioral, or functional components of the UHDRS. Alanine aminotransferase was elevated in a dosage-dependent fashion (p = 0.01).CONCLUSIONS: Over 8 weeks of treatment, riluzole 200 mg/day ameliorated chorea intensity in HD without improving functional capacity or other clinical features of illness. Riluzole 200 mg/day was attended by reversible liver transaminase abnormalities that would require monitoring in long-term studies.
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| 48. |
- Almqvist, E W, et al.
(författare)
-
High incidence rate and absent family histories in one quarter of patients newly diagnosed with Huntington disease in British Columbia.
- 2001
-
Ingår i: Clinical Genetics. - 0009-9163 .- 1399-0004. ; 60:3, s. 198-205
-
Tidskriftsartikel (refereegranskat)abstract
- The advent of the direct mutation test for Huntington disease (HD) has made it possible to identify a previously unrecognized symptomatic population of HD, including those with an atypical presentation or patients without a family history of HD. The present study investigated the uptake of this test in the province of British Columbia (BC), Canada and assessed the incidence rate and rate of identification of new mutations for HD. All symptomatic individuals residing in BC who were referred for the genetic test for HD between 1993 and 2000 (n=205) were analyzed for CAG expansion, baseline demographics and clinical data, and a family history of HD. A total of 141 (or 68.8%) had a CAG expansion > or =36. Of these, almost one-quarter (24.1%) did not have a family history of HD. An extensive chart review revealed that 11 patients (or 7.8%) had reliable information on both parents (who lived well into old age) and therefore possibly could represent new mutations for HD. This indicates a three to four times higher new mutation rate than previously reported. Our findings also show that the yearly incidence rate for HD was 6.9 per million, which is two times higher than previous incidence studies performed prior to the identification of the HD mutation. We also identified five persons with a clinical presentation of HD but without CAG expansion (genocopies) (2.4%).
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| 49. |
- Almqvist, E W, et al.
(författare)
-
Psychological consequences and predictors of adverse events in the first 5 years after predictive testing for Huntington's disease.
- 2003
-
Ingår i: Clinical Genetics. - : Wiley. - 0009-9163 .- 1399-0004. ; 64:4, s. 300-9
-
Tidskriftsartikel (refereegranskat)abstract
- The promise of genetic medicine is to provide information, based on genotype, to persons not yet sick about their risk of future illness. However, little is known of the long-term psychological effects for asymptomatic persons learning their risk of having a serious disease. Predictive genetic testing for Huntington's disease (HD) has been offered for the longest time for any disease. In the present study, the psychological consequences of predictive testing were assessed prospectively in individuals at risk for HD during seven visits over 5 years. Questionnaires of standard measures of psychological distress (the General Severity Index of the Symptom Check List-90-Revised), depression (the Beck Depression Inventory), and general well-being (the General Well-Being Scale) were administered to the participants. A significant reduction in psychological distress was observed for both result groups throughout 2 years (p < 0.001) and at 5 years (p = 0.002). Despite the overall improvement of the psychological well-being, 6.9% (14 of 202) of the participants experienced an adverse event during the first 2 years after predictive testing that was clinically significant. The frequency of all defined adverse events in the participants was 21.8%, with higher frequency in the increased risk group (p = 0.03) and most occurring within 12 months of receiving results.
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| 50. |
- Alvariza, Anette, et al.
(författare)
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A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool
- 2018
-
Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 35, s. 1-8
-
Tidskriftsartikel (refereegranskat)abstract
- Purpose: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context. Methods: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated. Results: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75). Conclusions: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care. © 2018 Elsevier Ltd
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