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  • 1.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Bergman, Gunnar
    Karolinska institutet.
    Melander Marttala, Ulla
    Uppsala universitet.
    Wadensten, Barbro
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Information following a Diagnosis of Congenital Heart Defect: Experiences among Parents to Prenatally Diagnosed Children2015In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 10, no 2Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Prenatal screening of pregnant women in Sweden has improved the detection of major congenital heart defects (CHD). The aim was to explore parental experiences and need for information following a prenatal diagnosis of CHD. METHODS: Semi-structured interviews conducted with six fathers and five mothers to seven prenatally diagnosed children. Data were analyzed through content analysis. RESULTS: Three themes and 9 categories emerged. Theme 1, Grasping the facts today while reflecting on the future, containing five categories: Difficulties sorting out information when in emotional chaos; Respectful information regarding termination of pregnancy; Early information is crucial; Understanding the facts regarding the anomaly; Preparing for the future. Theme 2, Personal contact with medical specialists who give honest and trustworthy information is valued, containing two categories: Trust in information received from medical specialists and Truth and honesty is valued. Theme 3, An overwhelming amount of information on the Internet, containing two categories: Difficulties in finding relevant information and Easy to focus on cases with a poor outcome when searching the Internet. CONCLUSION: Early and honest information in line with individual preferences is crucial to support the decisional process regarding whether to continue or terminate the pregnancy. The use of illustrations is recommended, as a complement to oral information, as it increases comprehension and satisfaction with obtained information. Furthermore, the overwhelming amount of information on the Internet calls for compilation of easily accessible and reliable information sources via the Internet.

  • 2.
    Engvall, Gunn
    et al.
    Uppsala universitet.
    Cernvall, Martin
    Uppsala universitet.
    Larsson, Gunnel
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Cancer during adolescence: negative and positive consequences reported three and four years after diagnosis2011In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 6, no 12Article in journal (Refereed)
    Abstract [en]

    Persons diagnosed with cancer during adolescence have reported negative and positive cancer-related consequences two years after diagnosis. The overall aim was to longitudinally describe negative and positive cancer-related consequences reported by the same persons three and four years after diagnosis. A secondary aim was to explore whether reports of using vs. not using certain coping strategies shortly after diagnosis are related to reporting or not reporting certain consequences four years after diagnosis. Thirty-two participants answered questions about coping strategies shortly after diagnosis and negative and positive consequences three and four years after diagnosis. Answers about consequences were analysed with content analysis, potential relations between coping strategies and consequences were analysed by Fisher’s exact test. The great majority reported negative and positive consequences three and four years after diagnosis and the findings indicate stability over time with regard to perceived consequences during the extended phase of survival. Findings reveal a potential relation between seeking information shortly after diagnosis and reporting a more positive view of life four years after diagnosis and not using fighting spirit shortly after diagnosis and not reporting good self-esteem and good relations four years after diagnosis. It is concluded that concomitant negative and positive cancer-related consequences appear stable over time in the extended phase of survival and that dialectical forces of negative and positive as well as distress and growth often go hand-in-hand after a trauma such as cancer during adolescence.

  • 3.
    Fängström, Karin
    et al.
    Uppsala Universitet.
    Salari, Raziye
    Uppsala Universitet.
    Eriksson, Maria
    Ersta Sköndal Bräcke University College, Department of Social Sciences.
    Sarkadi, Anna
    Uppsala Universitet.
    The computer-assisted interview In My Shoes can benefit shy preschool children's communication2017In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 12, no 8Article in journal (Refereed)
  • 4.
    Hedelin, Maria
    et al.
    Göteborgs universitet.
    Skokic, Viktor
    Göteborgs universitet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    Ahlin, Rebecca
    Göteborgs universitet.
    Bull, Cecilia
    Göteborgs universitet.
    Sjöberg, Fei
    Göteborgs universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Bergmark, Karin
    Göteborgs universitet.
    Stringer, Andrea
    Australien.
    Steineck, Gunnar
    Göteborgs universitet, Karolinska institutet.
    Intake of citrus fruits and vegetables and the intensity of defecation urgency syndrome among gynecological cancer survivors.2019In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 14, no 1, article id e0208115Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Despite the experimental evidence that certain dietary compounds lower the risk of radiation-induced damage to the intestine, clinical data are missing and dietary advice to irradiated patients is not evidence-based.

    MATERIALS AND METHODS: We have previously identified 28 intestinal health-related symptoms among 623 gynaecological-cancer survivors (three to fifteen years after radiotherapy) and 344 matched population-based controls. The 28 symptoms were grouped into five radiation-induced survivorship syndromes: defecation-urgency syndrome, fecal-leakage syndrome, excessive mucus discharge, excessive gas discharge and blood discharge. The grouping was based on factor scores produced by Exploratory Factor Analysis in combination with the Variable Cutoff Method. Frequency of food intake was measured by a questionnaire. We evaluated the relationship between dietary intake and the intensity of the five syndromes.

    RESULTS: With the exception of excessive mucus discharge, the intensity of all syndromes declined with increasing intake of citrus fruits. The intensity of defecation-urgency and fecal-leakage syndrome declined with combined intake of vegetables and citrus fruits. The intensity of excessive mucus discharge was increased with increasing intake of gluten.

    CONCLUSION: In this observational study, we found an association between a high intake of citrus fruits and vegetables and a lower intensity of the studied radiation-induced cancer survivorship syndromes. Our data suggest it may be worthwhile to continue to search for a role of the diet before, during and after radiotherapy to help the cancer survivor restore her or his intestinal health after irradiation.

  • 5.
    Nyberg, Tommy
    et al.
    Karolinska instituet.
    Hed Myrberg, Ida
    Karolinska institutet.
    Omerov, Pernilla
    Ersta Sköndal University College, Department of Health Care Sciences.
    Steineck, Gunnar
    Karolinska instituet & Sahlgrenska akademin Göteborgs universitet.
    Nyberg, Ullakarin
    Karolinska institutet.
    Depression among Parents Two to Six Years Following the Loss of a Child by Suicide: A Novel Prediction Model2016In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, no 10, article id e0164091Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Parents who lose a child by suicide have elevated risks of depression. No clinical prediction tools exist to identify which suicide-bereaved parents will be particularly vulnerable; we aimed to create a prediction model for long-term depression for this purpose.

    METHOD: During 2009 and 2010 we collected data using a nationwide study-specific questionnaire among parents in Sweden who had lost a child aged 15-30 by suicide in years 2004-2007. Current depression was assessed with the Patient Health Questionnaire (PHQ-9) and a single question on antidepressant use. We considered 26 potential predictors assumed clinically assessable at the time of loss, including socio-economics, relationship status, history of psychological stress and morbidity, and suicide-related circumstances. We developed a novel prediction model using logistic regression with all subsets selection and stratified cross-validation. The model was assessed for classification performance and calibration, overall and stratified by time since loss.

    RESULTS: In total 666/915 (73%) participated. The model showed acceptable classification performance (adjusted area under the curve [AUC] = 0.720, 95% confidence interval [CI] 0.673-0.766), but performed classification best for those at shortest time since loss. Agreement between model-predicted and observed risks was fair, but with a tendency for underestimation and overestimation for individuals with shortest and longest time since loss, respectively. The identified predictors include female sex (odds ratio [OR] = 1.84); sick-leave (OR = 2.81) or unemployment (OR = 1.64); psychological premorbidity debuting during the last 10 years, before loss (OR = 3.64), or more than 10 years ago (OR = 4.96); suicide in biological relatives (OR = 1.54); with non-legal guardianship during the child's upbringing (OR = 0.48); and non-biological parenthood (OR = 0.22) found as protective.

    CONCLUSIONS: Our prediction model shows promising internal validity, but should be externally validated before application. Psychological premorbidity seems to be a prominent predictor of long-term depression among suicide-bereaved parents, and thus important for healthcare providers to assess.

  • 6.
    Omerov, Pernilla
    et al.
    Karolinska institutet.
    Steineck, Gunnar
    Karolinska institutet & Sahlgrenska akademin, Göteborgs universitet.
    Nyberg, Tommy
    Karolinska institutet.
    Runeson, Bo
    Karolinska institutet.
    Nyberg, Ullakarin
    Karolinska institutet.
    Viewing the body after bereavement due to suicide: a population-based survey in Sweden2014In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 9, no 7, p. 1-9, article id e101799Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Research on the assumed, positive and negative, psychological effects of viewing the body after a suicide loss is sparse. We hypothesized that suicide-bereaved parents that viewed their childs body in a formal setting seldom regretted the experience, and that viewing the body was associated with lower levels of psychological morbidity two to five years after the loss.

    METHODS AND FINDINGS: We identified 915 suicide-bereaved parents by linkage of nationwide population-based registries and collected data by a questionnaire. The outcome measures included the Patient Health Questionnaire (PHQ-9). In total, 666 (73%) parents participated. Of the 460 parents (69%) that viewed the body, 96% answered that they did not regret the experience. The viewing was associated with a higher risk of reliving the child's death through nightmares (RR 1.61, 95% CI 1.13 to 2.32) and intrusive memories (RR 1.20, 95% CI 1.04 to 1.38), but not with anxiety (RR 1.02, 95% CI 0.74 to 1.40) and depression (RR 1.25, 95% CI 0.85 to 1.83). One limitation of our study is that we lack data on the informants' personality and coping strategies.

    CONCLUSIONS: In this Swedish population-based survey of suicide-bereaved parents, we found that by and large everyone that had viewed their deceased child in a formal setting did not report regretting the viewing when asked two to five years after the loss. Our findings suggest that most bereaved parents are capable of deciding if they want to view the body or not. Officials may assist by giving careful information about the child's appearance and other details concerning the viewing, thus facilitating mental preparation for the bereaved person. This is the first large-scale study on the effects of viewing the body after a suicide and additional studies are needed before clinical recommendations can be made.

  • 7.
    Rovner, Graciela S
    et al.
    Göteborgs universitet, Karolinska institutet.
    Sunnerhagen, Katharina S
    Göteborgs universitet.
    Björkdahl, Ann
    Ersta Sköndal Bräcke University College, Department of Social Sciences. Göteborgs universitete.
    Gerdle, Björn
    Linköpings universitet.
    Börsbo, Björn
    Linköpings universitet, Länssjukhuset Ryhov, Region Jönköpings län.
    Johansson, Fredrik
    Danderyds sjukhus.
    Gillanders, David
    Storbritannien.
    Chronic pain and sex-differences; women accept and move, while men feel blue.2017In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 12, no 4, article id e0175737Article in journal (Refereed)
    Abstract [en]

    PURPOSE: 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.

    METHOD: 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.

    RESULTS: 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.

    CONCLUSION: 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.

  • 8.
    Steineck, Gunnar
    et al.
    Göteborgs universitet, Karolinska institutet.
    Skokic, Viktor
    Göteborgs universitet.
    Sjöberg, Fei
    Göteborgs universitet.
    Bull, Cecilia
    Göteborgs universitet.
    Alevronta, Eleftheria
    Göteborgs universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Bergmark, Karin
    Göteborgs universitet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    Oh, Jung Hun
    USA.
    Deasy, Joseph O
    USA.
    Jörnsten, Rebecka
    Chalmers tekniska högskola .
    Identifying radiation-induced survivorship syndromes affecting bowel health in a cohort of gynecological cancer survivors.2017In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 12, no 2, article id e0171461Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: During radiotherapy unwanted radiation to normal tissue surrounding the tumor triggers survivorship diseases; we lack a nosology for radiation-induced survivorship diseases that decrease bowel health and we do not know which symptoms are related to which diseases.

    METHODS: Gynecological-cancer survivors were followed-up two to 15 years after having undergone radiotherapy; they reported in a postal questionnaire the frequency of 28 different symptoms related to bowel health. Population-based controls gave the same information. With a modified factor analysis, we determined the optimal number of factors, factor loadings for each symptom, factor-specific factor-loading cutoffs and factor scores.

    RESULTS: Altogether data from 623 survivors and 344 population-based controls were analyzed. Six factors best explain the correlation structure of the symptoms; for five of these a statistically significant difference (P< 0.001, Mann-Whitney U test) was found between survivors and controls concerning factor score quantiles. Taken together these five factors explain 42 percent of the variance of the symptoms. We interpreted these five factors as radiation-induced syndromes that may reflect distinct survivorship diseases. We obtained the following frequencies, defined as survivors having a factor loading above the 95 percent percentile of the controls, urgency syndrome (190 of 623, 30 percent), leakage syndrome (164 of 623, 26 percent), excessive gas discharge (93 of 623, 15 percent), excessive mucus discharge (102 of 623, 16 percent) and blood discharge (63 of 623, 10 percent).

    CONCLUSION: Late effects of radiotherapy include five syndromes affecting bowel health; studying them and identifying the underlying survivorship diseases, instead of the approximately 30 long-term symptoms they produce, will simplify the search for prevention, alleviation and elimination.

  • 9.
    Sveen, Josefin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Bergh Johannesson, Kerstin
    Uppsala universitet.
    Cernvall, Martin
    Uppsala universitet.
    Arnberg, Filip K
    Uppsala universitet, Stockholms universitet.
    Trajectories of prolonged grief one to six years after a natural disaster.2018In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 13, no 12, p. 1-15, article id e0209757Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The long-term trajectories of prolonged grief are poorly understood. The aims were to examine the course of grief among bereaved disaster survivors up to six years post loss and factors predicting worse bereavement outcome. A third aim was to explore differences in grief indicators between trajectories.

    METHODS: Bereaved Swedish tourists who survived the 2004 Indian Ocean tsunamis responded to surveys including the Inventory of Complicated Grief 1 to 6 years after the disaster. Latent growth mixture modeling was used to identify longitudinal trajectories of grief. Multinomial logistic regression analysis was used to examine predictors of class membership.

    RESULTS: Three trajectories were identified: resilient (41% of the sample), recovering (48%), and chronic (11%). The strongest predictor of chronic grief was the loss of one's child. When examining grief indicators, the chronic trajectory was characterized by not accepting the loss, while yearning was common in all trajectories.

    CONCLUSIONS: This study highlights the importance of considering how traumatically bereaved individuals can be affected by loss for several years after a disaster, especially after losing one's child. An inability to accept the loss, more so than yearning, appears to characterize bereaved survivors at risk of a chronic trajectory of grief.

  • 10.
    Sveen, Josefin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Eisma, Maarten C
    Nederländerna.
    Rumination in bereaved parents: Psychometric evaluation of the Swedish version of the Utrecht Grief Rumination Scale (UGRS).2019In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 14, no 3, article id e0213152Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Bereaved parents may be at higher risk to develop persistent, severe and disabling grief, termed prolonged grief. Grief rumination, repetitive thinking about the causes and consequences of the loss, is a malleable cognitive process that maintains prolonged grief. Grief rumination can be measured with the Utrecht Grief Rumination Scale (UGRS). The present study aimed to examine the psychometric properties of the new Swedish version of the UGRS in a sample of bereaved parents.

    METHODS: A Swedish nationwide postal survey including measures of demographic and loss-related variables, grief rumination (UGRS), and symptoms of prolonged grief, posttraumatic stress, anxiety, depression, and insomnia, was completed by 226 parents (133 mothers and 93 fathers) who lost a child to cancer in the past five years. Psychometric properties of the UGRS were examined through confirmatory factor analyses (CFA), reliability analyses, and assessment of UGRS score associations with symptoms of prolonged grief, posttraumatic stress, depression, anxiety, and insomnia.

    RESULTS: The internal consistency of the Swedish UGRS was good. The CFA yielded an acceptable fit for a two-factor hierarchical model with five sub-factors. Grief rumination was positively associated with all psychopathology symptom measures. Higher scores on UGRS were found in parents with possible prolonged grief disorder compared to those without (d = 1.47). Moreover, the Swedish UGRS was associated with prolonged grief symptoms over and above loss-related and demographic variables and other psychopathology symptoms.

    CONCLUSIONS: The Swedish UGRS demonstrated good psychometric properties, which supports its use as a measure to assess grief rumination in Swedish bereaved parents in research and practice.

  • 11.
    Sveen, Josefin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Öhlén, Joakim
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Sandberg, Jonas
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan i Jönköping.
    Brandänge, Kristina
    Ersta sjukhus, Stockholm.
    Gustavsson, Petter
    Karolinska Institutet.
    Posttraumatic stress among not-exposed traumatically bereaved relatives after the MS Estonia disaster2016In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203Article in journal (Refereed)
    Abstract [en]

    Background: Little is known about posttraumatic stress (PTS) reactions in bereaved individuals following loss in disaster who were not directly exposed to disaster. The aim of the present study was to examine the course of PTS up to three years after losing relatives in the MS Estonia ferry disaster, one of the worst maritime disasters in modern times.

    Methods: Seven postal surveys were sent out over three years post-disaster. The respondents were invited and added consecutively during the three years and 938 relatives participated in one or more of the surveys, representing 89% of the MS Estonia's Swedish victims. The survey included the Impact of Event Scale (IES) to measure PTS. Latent growth curve modeling was used to analyze PTS over time.

    Results: The majority of bereaved individuals had high levels of PTS. At three years post-loss, 62% of the respondents scored above the recommended cut-off value on the IES. Over time, PTS symptoms declined, but initially high symptoms of PTS were associated with a slower recovery rate.

    Conclusion: The present finding suggests that being an indirectly-exposed disaster-bereaved close-relative can lead to very high levels of PTS which are sustained for several years.

1 - 11 of 11
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