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Sökning: AMNE:(MEDICIN OCH HÄLSOVETENSKAP) AMNE:(Annan medicin och hälsovetenskap) AMNE:(Övrig annan medicin och hälsovetenskap) > Karolinska Institutet

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1.
  • Beernaert, Kim, et al. (författare)
  • Distrust in the End-of-Life Care Provided to a Parent and Long-Term Negative Outcomes Among Bereaved Adolescents : A Population-Based Survey Study
  • 2017
  • Ingår i: Journal of Clinical Oncology. - : American Society of Clinical Oncology. - 0732-183X .- 1527-7755. ; 35:27, s. 3136-3142
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose Previous research shows that the death of a parent places children at risk for a number of negative outcomes. The role of trust in health care at the end of life has been acknowledged as crucial for patients and adult family members. However, the consequences of children's distrust in the care provided to their parents remain unknown. Therefore, we investigated the negative long-term outcomes of cancer-bereaved sons' and daughters' distrust in the care that was provided to a dying parent. Methods We used a population-based nationwide survey to investigate self-reported distrust in the care provided and possible negative outcomes in 622 (73%) participants who had lost a parent as a result of cancer 6 to 9 years earlier, at ages 13 to 16 years. All participants were 18 years or older at the time of the survey. Results In those who reported no or little trust (ie, distrust) in the health care provided to their dying parents, we found statistically significantly higher risks of various negative outcomes at the time of survey: bitterness toward health care professionals for not having done everything that was possible (crude risk ratio [RR], 3.5; 95% CI, 2.3 to 5.1) and for having stopped treatment (RR, 3.4; 95% CI, 2.1 to 6.0), self-destructiveness (eg, self-injury [RR, 1.7; 95% CI, 1.2 to 2.4]), and psychological problems (eg, moderate to severe depression according to the Patient Health Questionnaire-9 [RR, 2.3; 95% CI, 1.5 to 3.5]). Conclusion In cancer-bereaved former adolescents, distrust in the health care provided to the dying parent is associated with a higher risk of negative long-term outcomes. The health care professionals involved in this care might play an important role in safeguarding the trust of adolescents.
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2.
  • Lövgren, Malin, et al. (författare)
  • Clock time and embodied time experienced by patients with inoperable lung cancer
  • 2010
  • Ingår i: Cancer Nursing. - Philadelphia : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 14, s. S45-S45
  • Tidskriftsartikel (refereegranskat)abstract
    • In this study, we explore how patients with inoperable lung cancer (LC) discuss their experiences of time, based on content analysis of open interviews with 35 patients 1 year after diagnosis, using Davies' distinction between "clock time" and "embodied time" as sensitizing concepts. Two interrelated themes were derived: (1) aspects related to the healthcare system, with 3 subthemes: waiting times in the healthcare system, limited time for patient-professional contact, and limited time for coordination of services, and (2) existential aspects, with subthemes: the future with LC and managing an uncertain and finite life with LC. Time could be experienced as problematic for these patients, when limited or lacking or through long periods of waiting, especially when these periods occurred without adequate preparation or information. This contributed to exacerbation of these patients' existing sense of uncertainty, their perception of care as impersonal and insecure, and their need to remain alert and act on their own behalf. Awareness of the seriousness of their disease and the prospect of a limited lifetime was described as increasing uncertainty about dying and fear of certain death. People also described efforts to constructively deal with their situation by reprioritizing their remaining time, having increased appreciation of some aspects of daily life, and living consciously in the present. This analysis suggests a collision between clock time, which steers the healthcare system, and embodied time, as experienced by individuals. Greater attention to psychosocial needs is suggested as one means of positively affecting patients' experiences of time and uncertainty.
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3.
  • Rovner, Graciela, 1959, et al. (författare)
  • Chronic pain and sex-differences; women accept and move, while men feel blue.
  • 2017
  • Ingår i: PloS one. - : Public Library of Science (PLoS). - 1932-6203. ; 12:4
  • Tidskriftsartikel (refereegranskat)abstract
    • The aim of this study is to explore differences between male and female patients entering a rehabilitation program at a pain clinic in order to gain a greater understanding of different approaches to be used in rehabilitation.1371 patients referred to a specialty pain rehabilitation clinic, completed sociodemographic and pain related questionnaires. They rated their pain acceptance (CPAQ-8), their kinesiophobia (TSK), the impact of pain in their life (MPI), anxiety and depression levels (HAD) and quality of life scales: the SF-36, LiSat-11, and the EQ-5D. Because of the large sample size of the study, the significance level was set at the p ≤.01.Analysis by t-test showed that when both sexes experience the same pain severity, women report significantly higher activity level, pain acceptance and social support while men report higher kinesiophobia, mood disturbances and lower activity level.Pain acceptance (CPAQ-8) and kinesiophobia (TSK) showed the clearest differences between men and women. Pain acceptance and kinesiophobia are behaviorally defined and have the potential to be changed.
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4.
  • Toschke, Audré M., et al. (författare)
  • Paternal smoking is associated with a decreased prevalence of type 1 diabetes mellitus among offspring in two national British birth cohort studies (NCDS and BCS70)
  • 2007
  • Ingår i: Journal of Perinatal Medicine. - Berlin : Walter de Gruyter. - 0300-5577 .- 1619-3997. ; 35:1, s. 43-7
  • Tidskriftsartikel (refereegranskat)abstract
    • AB Aims: An association between paternal age and type 1 diabetes (IDDM) among their offspring was recently reported as well as transgenerational responses in humans. This paper aims to assess the association of markers for prenatal exposures with IDDM. Methods: We analysed data from two birth cohorts in Great Britain on 5214 cohort members from the National Child Development Study (NCDS) and 6068 members of the 1970 British Birth Cohort Study (BCS70) with full information on IDDM and explanatory variables using multivariate logistic regression. Results: IDDM prevalence was 0.7% (95% CI 0.5-1.0%; n = 38) in the NCDS and 0.4% (95% CI 0.3-0.6%; n = 27) in the BCS70 cohort. Paternal age was not associated with IDDM possibly due to lack of sample power. Unex-pectedly, a lowered prevalence of IDDM was observed among offspring of smoking fathers in both cohorts, with a combined odds ratio of 0.44 (95% CI 0.25-0.75). This association could not be explained by maternal smoking prior to, during or after pregnancy, number of siblings, parental social class, maternal and paternal age, or cohort. Maternal smoking in pregnancy did not alter the IDDM prevalence among offspring. Conclusions: This unexpected finding may be explained by germ-line mutations or other mechanisms associated with paternal smoking. This phenomenon should be investigated and these results should not be used as a justification for smoking. Paternal exposures may be important in determining IDDM risk.
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5.
  • Peny-Dahlstrand, Marie, 1953, et al. (författare)
  • Patterns of participation in school-related activities and settings in children with spina bifida
  • 2013
  • Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 35:21, s. 1821-1827
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: To evaluate how children with spina bifida (SB) participate in school-related activities and to explore if their motor and process skills in task performance were related to their level of active participation in school. Method: Fifty children from a geographical cohort of children with SB (aged 6-14 years) and their teachers rated the children's frequency of participation in school-related activities using a Swedish adaptation of the Availability and Participation Scale. The teachers also rated each child's level of active participation with the School Function Assessment, part one. Each child's motor and process skills were evaluated with the Assessment of Motor and Process Skills. The relation between levels of active participation and motor and process skills was subjected to binary logistic regression analysis. Results: The children participated very frequently in school activities, but their level of active participation was restricted, particularly in the recess/playground setting. There was a highly significant relation between full active participation in most school settings and the children's motor and process skills. Conclusion: Children with SB need support to become more actively involved, particularly in unstructured peer activities. The school staff need to be informed that not only the motor skills but also the process skills have an impact on the children's active participation.
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6.
  • Lavesson, Ann, et al. (författare)
  • Development of a language screening instrument for Swedish 4-year-olds
  • 2018
  • Ingår i: International journal of language and communication disorders. - : Wiley. - 1368-2822 .- 1460-6984. ; 53:3, s. 605-614
  • Tidskriftsartikel (refereegranskat)abstract
    • BackgroundThe Swedish Program for health surveillance of preschool children includes screening of language and communication abilities. One important language screening is carried out at age 4 years as part of a general screening conducted by health nurses at child health centres. The instruments presently in use for this screening mainly focus on expressive phonology. This may result in both over-referral of children with phonological difficulties and under-referral of children with language disorders (LDs), involving difficulties with vocabulary, grammar and/or language comprehension. Previous research has proposed non-word repetition as a clinical marker for LD. It has also been found that higher predictive power is achieved when non-word repetition is combined with the assessment of lexical/semantic skills. Taking these findings into account, the construction of a language screening instrument may yield more adequate referrals to speech-language therapists (SLTs). AimsTo construct a new standardized language screening instrument for 4-year-olds and to test its properties. Methods & ProceduresAn instrument was developed and revised after piloting. A population of 352 children was screened at the regular 4-year check-up by 11 health nurses. The final sample consisted of 328 children aged 46-53 months (23% multilingual). Children performing below a preliminary cut-off were referred to an SLT (n = 52). Five SLTs carried out an assessment on average within 5 weeks using a gold standard language test battery. Children who screened negatively were followed up with a parent questionnaire at age 5;6. Outcomes & ResultsThirty-one true-positives and 11 false-positives were identified after SLT assessment. A further six children were identified as false-negatives (two through referral to an SLT and four through parent questionnaire at age 5;6). A receiver-operating characteristics curve with a C statistic of .94 was calculated. Based on optimal cut-off, the sensitivity of the screening instrument was found to be .84, and specificity was .96. Multilingual children performed similar to monolingual children; boys performed significantly lower than girls; and children with a family history of language-related problems performed lower than those without. Interrater reliability was high, as was Cronbach's alpha. Conclusions & ImplicationsThe screening instrument seems sufficiently valid for its purpose to identify children who need further assessment by an SLT. A follow-up study including SLT assessment for all children to check for false-negatives would be interesting in future, as would studies comparing results from the 4-year screening with those from earlier screens.
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7.
  • Manchaiah, Vinaya, et al. (författare)
  • Problems and Life Effects Experienced by Tinnitus Research Study Volunteers : An Exploratory Study Using the ICF Classification
  • 2018
  • Ingår i: Journal of american academy of audiology. - Reston, VA, United States : American Academy of Audiology. - 1050-0545 .- 2157-3107. ; 29:10, s. 936-947
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Tinnitus is one of the most distressing hearing-related symptoms. It is often associated with a range of physiological and psychological complications, such as depression, anxiety, and insomnia. Hence, approaching tinnitus from a biopsychological perspective may be more appropriate than from purely a biomedical model.Objective: The present studywas aimed at determining the relationship between tinnitus and the problems and life effects experienced by UK-based tinnitus research study volunteers. Open-ended questions were used. Responses were classified using the International Classification of Functioning, Disability and Health (ICF) framework to understand the impact of tinnitus in a multidimensional manner using a biopsychosocial perspective.Research Design: A cross-sectional survey design was used.Study Sample: Study sample included a sample of 240 adults with tinnitus who were interested in undertaking an Internet-based intervention for tinnitus.Data Collection and Analysis: The data were collated using two open-ended questions. The first focused on problems related to having tinnitus and the second to life effects as a result of tinnitus. Responses were analyzed using a simplified content analysis approach to link concepts to ICF categories in accordance with established linking rules. A Wilcoxon signed-rank test was performed to compare the number of responses between the two questions. The most frequent responses related to body function involved ‘‘emotional functions’’ (b152), ‘‘sleep functions’’ (b134), ‘‘hearing functions’’ (b230), ‘‘sustaining attention’’ (b1400), and ‘‘energy level’’ (b1300). For activity limitations and participation restrictions they were ‘‘communicating with—receiving—spokenmessages’’ (d310), ‘‘socialization’’ (d9205), ‘‘handling stress and other psychological demands’’ (d240), and ‘‘recreation and leisure’’ (d920). The most frequently occurring responses related to environmental factors were ‘‘sound intensity’’ (e2500), ‘‘sound quality’’ (e2501), and ‘‘general products and technology for communication’’ (e1250). ‘‘Coping styles’’ was the most frequently occurring personal factor.Conclusions: The study highlights the use of open-ended questions in gathering useful information about the impact of tinnitus. The responses coded to ICF show that tinnitus impacts many domains, not only particularly body function, but also activity limitations and participation restrictions. The results demonstrate the heterogeneous nature of the impact of tinnitus on people affected.Results: There were 764 responses related to problems identified, 797 responses associated with life effects due to tinnitus, and 37 responses that did not fit into any ICF category. No significant differences were observed in the number of responses between the two questions. In addition, no significant association between the number of responses reported and demographic variables was found. Most of the problems and life effects experienced by tinnitus sufferers were related to body function, followed by activity limitations, and participation restrictions. Only a few responses were related to environmental and personal factors.
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8.
  • Pestoff, Rebecka, et al. (författare)
  • Genetic counsellors in Sweden : their role and added value in the clinical setting.
  • 2016
  • Ingår i: European Journal of Human Genetics. - : Nature Publishing Group. - 1018-4813 .- 1476-5438. ; 24:3, s. 350-355
  • Tidskriftsartikel (refereegranskat)abstract
    • Genetic testing is becoming more commonplace in general and specialist health care and should always be accompanied by genetic counselling, according to Swedish law. Genetic counsellors are members of the multi-disciplinary team providing genetic counselling. This study examined the role and added value of genetic counsellors in Sweden, using a cross-sectional on-line survey. The findings showed that the genetic counsellors added value in the clinical setting by acting as the 'spider-in-the-web' regarding case management, having a more holistic, ethical and psychological perspective, being able to offer continuous support and build a relationship with the patient, and being more accessible than medical geneticists. The main difference between a genetic counsellor and medical geneticist was that the doctor had the main medical responsibility. Thus genetic counsellors in Sweden contribute substantially to the care of patients in the clinical genetic setting.
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9.
  • Bergqvist, L., et al. (författare)
  • Seeing through the blind! : ability of hospital staff to differentiate morphine from placebo, in neonates at a placebo controlled trial
  • 2007
  • Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 96:7, s. 1004-1007
  • Tidskriftsartikel (refereegranskat)abstract
    • AIM: To investigate whether professional training and/or clinical experience affect the ability of caregiver to assess clinical signs of pre-emptive morphine analgesia. METHODS: In the Neurological Outcomes & Pre-emptive Analgesia In Neonates trial preterm infants undergoing mechanical ventilation were randomized to receive continuous infusion, either of morphine or placebo blinded. Staff from centres in Sweden (Stockholm and Orebro) completed an assessment form. RESULTS: A total of 360 assessment forms were collected from 52 neonates. In 59% of the cases, caregivers correctly identified patients group. Comparable proportion of answers were correct between physicians, nurses and assistant nurses (63, 60 and 54%, respectively, p = 0.60). Staff with Neonatal intensive care unit experience <1 year identified 63%, as compared to 65% for working 1-5 year, and 55% that has been working >5 years (p = 0.28). Staff's ability to correctly identify group assignment was reduced by amount of additional morphine (p < 0.01) and severity of illness (p = 0.01). CONCLUSIONS: Clinical medical staffs, including neonatologists, have great difficulties in assessing the presence and severity of pain. Further studies should focus on the methods for assessment of prolonged pain in preterm neonates, define the effects of adequate analgesia, and investigate the clinical factors that may alter neonatal responses to acute and prolonged pain.
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10.
  • Eilegård Wallin, Alexandra, 1975-, et al. (författare)
  • Insufficient communication and anxiety in cancer-bereaved siblings : a nationwide long-term follow-up
  • 2016
  • Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; October, s. 488-494
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: The purpose of this study was to examine siblings’ long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life.Method: A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI 95%).Results: Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2–4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3–4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings’ risk of reporting anxiety at follow-up (RR = 2.2(1.1–4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5–18.2)). No such differences were seen when the ill brother or sister was cared for at home.Significance of results: Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.
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