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  • Bylund Grenklo, Tove, et al. (författare)
  • Communication and trust in the care provided to a dying parent: a nationwide study of cancer-bereaved youths.
  • 2013
  • Ingår i: Journal of clinical oncology : official journal of the American Society of Clinical Oncology. - 1527-7755. ; 31:23, s. 2886-94
  • Tidskriftsartikel (refereegranskat)abstract
    • PURPOSE: To assess children's trust in the care provided to a dying parent during the final week of life in relation to end-of-life medical information about disease, treatment, and death.METHODS: This nationwide population-based survey included 622 (73%) of 851 youths who, 6 to 9 years earlier, at age 13 to 16 years, lost a parent to cancer. We asked about the children's reception of end-of-life professional information and trust in the care provided. We also asked about depression and several potential risk factors of distrust in the care provided.RESULTS: A majority (82%) reported moderate/very much trust in the care provided. Compared with children who received end-of-life medical information before their loss, the risk of distrust in the care provided was higher in those who received no information (risk ratio [RR], 2.5; 95% CI, 1.5 to 4.1), in those who only received information afterward (RR, 3.2; 95% CI, 1.7 to 5.9), and in those who did not know or remember if end-of-life medical information was provided (RR, 1.7; 95% CI, 1.1 to 2.5). Those reporting distrust in the care provided had an RR of 2.3 (95% CI, 1.5 to 3.5) for depression. Furthermore, the risk of distrust in the care provided was higher among children reporting poor efforts to cure (RR, 5.1; 95% CI, 3.6 to 7.3), and/or a poor relationship with the surviving parent (RR, 2.9; 95% CI, 2.0 to 4.1).CONCLUSION: Our study suggests that children's trust in the care provided to a dying parent was highest when they received end-of-life medical information before their loss.
  • Bylund Grenklo, Tove, et al. (författare)
  • Self-injury in teenagers who lost a parent to cancer: a nationwide, population-based, long-term follow-up.
  • 2013
  • Ingår i: JAMA pediatrics. - 2168-6211. ; 167:2, s. 133-40
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVE: To investigate the risk of self-injury in parentally cancer-bereaved youth compared with their nonbereaved peers.DESIGN: Population-based study of cancer-bereaved youth and a random sample of matched population controls.SETTING: Sweden in 2009 and 2010.PARTICIPANTS: A total of 952 youth (74.8%) confirmed to be eligible for the study returned the questionnaire: 622 (73.1%) of 851 eligible young adults who lost a parent to cancer between the ages of 13 and 16 years, in 2000 to 2003, and 330 (78.4%) of 451 nonbereaved peers.MAIN EXPOSURE: Cancer bereavement or nonbreavement during the teenage years.MAIN OUTCOME MEASURES: Unadjusted and adjusted odds ratios (ORs) of self-injury after January 1, 2000.RESULTS: Among cancer-bereaved youth, 120 (19.5%) reported self-injury compared with 35 (10.6%) of their nonbereaved peers, yielding an OR of 2.0 (95% CI, 1.4-3.0). After controlling for potential confounding factors in childhood (eg, having engaged in self-destructive behavior, having been bullied, having been sexually or physically abused, having no one to share joys and sorrows with, and sex), the adjusted OR was 2.3 (95% CI, 1.4-3.7). The OR for suicide attempts was 1.6 (95% CI, 0.8-3.0).CONCLUSIONS: One-fifth of cancer-bereaved youth reported self-injury, representing twice the odds for self-injury in their nonbereaved peers, regardless of any of the adjustments we made. Raised awareness on a broad basis in health care and allied disciplines would enable identification and support provision to this vulnerable group.
  • Eilegård, Alexandra, et al. (författare)
  • Bereaved siblings' perception of participating in research : a nationwide study
  • 2013
  • Ingår i: Psycho-Oncology. - 1057-9249. ; 22:2, s. 411-416
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVE: The objective of the present study is to examine bereaved siblings' perception of research participation. METHODS: A Swedish nationwide study on avoidable and modifiable health care-related factors in paediatric oncology among bereaved siblings who lost a brother or sister to cancer between the years 2000 and 2007 was conducted. Data are presented as proportions, and the differences between groups were statistically tested at the 5% significant level using Fisher's exact test. RESULTS: Out of 240 eligible siblings, 174 responded (73 %). None of the siblings (0/168) thought their participation would affect them negatively in the long term. However, 13% (21/168) stated it was a negative experience to fill out the questionnaire, whereas 84% (142/169) found it to be a positive experience. Women were more likely to report their participation as positive in a long-term perspective compared with men (p = 0.018). CONCLUSIONS: None of the bereaved siblings in this Swedish nationwide study anticipated any long-term negative effect from their research participation. A majority reported it as positive to revisit their needs and experiences throughout their brother or sister's illness and death 2-9 years following the loss. We believe that the stepwise approach used in this study contributed to the high acceptance. 
  • Eilegård, Alexandra, et al. (författare)
  • Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier
  • 2013
  • Ingår i: Psycho-Oncology. - 1057-9249. ; 22:3, s. 683-691
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: The objective of this study was to assess long-term psychological distress in siblings who lost a brother or sister to cancer 2 to 9 years earlier, as compared with a control group of non-bereaved siblings from the general population. METHODS: During 2009, we conducted a nationwide follow-up study in Sweden by using an anonymous study-specific questionnaire. Siblings who had lost a brother or sister to cancer between the years 2000 and 2007 and also a control group of non-bereaved siblings from the general population were invited to participate. The Hospital Anxiety and Depression Scale (HADS) was used to measure psychological distress, and to test for differences in the ordinal outcome responses between the groups, we used Wilcoxon-Mann-Whitney rank-sum test. RESULTS: Among the bereaved siblings, 174/240 (73%) participated and 219/293 (75%) among the non-bereaved. Self-assessed low self-esteem (p = 0.002), difficulties falling asleep (p = 0.005), and low level of personal maturity (p = 0.007) at follow-up were more prevalent among bereaved siblings. However, anxiety (p = 0.298) and depression (p = 0.946), according to HADS, were similar. CONCLUSION: Bereaved siblings are at increased risk of low self-esteem, low level of personal maturity and difficulties falling asleep as compared with non-bereaved peers. Yet, the bereaved were not more likely to report anxiety or depression. 
  • Eilertsen, M. E. B., et al. (författare)
  • Impact of Social Support on Bereaved Siblings' Anxiety: A Nationwide Follow-Up
  • 2013
  • Ingår i: Journal of Pediatric Oncology Nursing. - 1043-4542. ; 30:6, s. 301-310
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose:To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up. Method: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety. Results: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively. Conclusion: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.
  • Erlandsson, Kerstin, et al. (författare)
  • Mothers' experiences of the time after the diagnosis of an intrauterine death until the induction of the delivery : a qualitative Internet-based study
  • 2011
  • Ingår i: Journal of obstetrics and gynaecology research. - 1341-8076. ; 37:11, s. 1677-84
  • Tidskriftsartikel (refereegranskat)abstract
    • AIM: This study aims to describe how mothers spend the period of time between being diagnosed with a dead baby in utero and the induction of the delivery.MATERIAL AND METHODS: Data were collected using a web questionnaire. Five hundred and fifteen women who had experienced a stillbirth after the 22nd week of gestation answered the open question: 'What did you do between the diagnosis of the child's death and the beginning of the delivery?' A qualitative content analysis method was used.RESULTS: The results show that some mothers received help to adapt to the situation, while for others, waiting for the induction meant further stress and additional psychological trauma in an already strained situation.CONCLUSION: There is no reason to wait with the induction unless the parents themselves express a wish to the contrary. Health care professionals, together with the parents, should try to determine the best time for the induction of the birth after the baby's death in utero. That time may vary, depending on the parents' preferences.
  • Erlandsson, Kerstin, et al. (författare)
  • Women's' premonitions prior to the death of their baby in utero and how they deal with the feeling that their baby may be unwell.
  • 2012
  • Ingår i: Acta Obstetricia et Gynecologica Scandinavica. - Wiley-Blackwell Publishing, Inc. - 1600-0412. ; 91:1, s. 28-33
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective. To identify if mothers to stillborn babies had had a premonition that their unborn child might not be well and how they dealt with that premonition. Design. A mixed method approach. Setting: 1 034 women answered a web questionnaire. Sample: 614 women fulfilled the inclusion criteria of having a stillbirth after the 22(nd) gestational week and answered questions about premonition. Methods. Qualitative content analysis was used for the open questions and descriptive statistics for questions with fixed alternatives. Main Outcome.Measure: The premonition of an unwell unborn baby. Results. In all 392/614 (64%) of the women had had a premonition that their unborn baby might be unwell; 274/614 (70%) contacted their clinic and were invited to come in for a check-up, but by then it was too late as the baby was already dead. A further 88/614 (22%) decided to wait until their next routine check-up, believing that the symptoms were part of the normal cycle of pregnancy, and that the fetus would move less towards the end of a pregnancy. Thirty women (8%) contacted their clinic, but were told that everything appeared normal without an examination of the baby. Conclusion. Women need to know that a decrease in fetal movements is an important indicator of their unborn baby´s health. Health care professionals should not delay an examination if a mother-to-be is worried of her unborn baby´s wellbeing.
  • Grenklo, Tove Bylund, et al. (författare)
  • Self-injury in youths who lost a parent to cancer: nationwide study of the impact of family-related and health-care-related factors
  • 2014
  • Ingår i: Psycho-Oncology. - Wiley-Blackwell. - 1057-9249. ; 23:9, s. 989-997
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Self-injury, a manifestation of severe psychological distress, is increased in cancer-bereaved youths. Little is known about the potential influence on the risk for self-injury of factors that could be clinically relevant to and modifiable by the health-care professionals involved in the care of the dying parent. Methods: In a nationwide population-based anonymous study, 622 (73.1%) youths (aged 18-26) who, 6 to 9 years earlier at ages 13 to 16, had lost a parent to cancer answered study-specific questions about self-injury and factors related to the family and parental health care. Results: Univariable analyses showed that the risk for self-injury was increased among cancer-bereaved youths who reported poor family cohesion the years before (relative risk [RR], 3.4, 95% confidence interval [CI], 2.5-4.6) and after the loss (RR, 3.3, 95% CI, 2.4-4.4), distrust in the health care provided to the dying parent (RR, 1.7, 95% CI, 1.2-2.4), perceiving poor health-care efforts to cure the parent (RR 1.5, 95% CI, 1.1-2.1) and poor efforts to prevent suffering (RR, 1.6, 95% CI, 1.1-2.4), that at least one of their parents had been depressed or had troubles in life (RR, 1.5, CI, 1.1-2.1) and believing 3 days before the loss that the treatment would probably cure the parent (RR, 1.6, CI, 1.1-2.3). In the total multivariable models, only poor family cohesion before and after the loss remained statistically significantly associated with self-injury. Conclusion: Poor family cohesion before and after the loss of a parent to cancer is associated with an increased risk of self-injury in teenage children. Copyright (C) 2014 John Wiley & Sons, Ltd.
  • Kreicbergs, Ulrika, et al. (författare)
  • Hematopoietic stem cell transplantation in children with cancer and the risk of long-term psychological morbidity in the bereaved parents
  • 2011
  • Ingår i: Bone Marrow Transplantation. - 0268-3369. ; 46:8, s. 1063-70
  • Tidskriftsartikel (refereegranskat)abstract
    • We have investigated whether hematopoietic stem cell transplantation (HSCT) before the death of children with cancer has a long-term effect on the physical and psychological well-being of the parents. A nationwide questionnaire was sent out to all bereaved parents in Sweden who had lost a child due to a malignancy from 1992 to 1997. Self-reported levels of anxiety, depression and quality of life as well as overall psychological and physical well-being in bereaved parents of children who underwent HSCT were compared with bereaved parents whose children did not receive a transplant. Bereaved parents whose children underwent HSCT had, according to a visual digital scale, an increased relative risk (RR) of long-term anxiety (RR 1.5; 95% confidence interval (CI) 1.0-2.1), poor psychological well-being (RR1.3; 95% CI 1.1-1.5), low quality of life (RR 1.4; 95% CI 1.2-1.7) and poor physical health (RR 1.3; 95% CI 1.1-1.5), whereas the State-Trait Anxiety Inventory and 'The Göteborg Quality of Life Instrument' were non-significantly increased (RR 1.3; 95% CI 0.8-2.3 and RR 1.7; 95% CI 0.9-3.3, respectively). The risks of these consequences were further augmented in case of multiple HSCT. We suggest that bereaved parents of children undergoing HSCT may be at greater risk of decreased psychological well-being than other bereaved parents of children with cancer.Bone Marrow Transplantation advance online publication, 22 November 2010; doi:10.1038/bmt.2010.287.
  • Lindgren, Helena, 1965-, et al. (författare)
  • Transfer in planned home births in Sweden - effects on the experience of birth : A nationwide population-based study
  • 2011
  • Ingår i: Sexual & Reproductive HealthCare. - 1877-5756. ; 2:3, s. 101-105
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: More than 10% of all planned home births in high-income countries are completed in the hospital. The aim of this study was to compare the birth experiences among women who planned to give birth at home and completed the birth at home and women who were transferred to hospital during or immediately after the birth. Methods: All women in Sweden who had a planned home birth between 1998 and 2005 (n = 671) were invited to participate in the study. The women who agreed to participate received one questionnaire for each planned home birth. Mixed methods were used for the analysis. Results: Women who had been transferred during or immediately after the planned home birth had a more negative birth experience in general. In comparison with women who completed the birth at home, the odds ratio for being less satisfied was 13.5, CI 8.1-22.3. Reasons for being dissatisfied related to organizational factors, the way the women were treated or personal ability. Conclusion: Being transferred during a planned home birth negatively affects the birth experience. Treatments as well as organizational factors are considered to be obstacles for a positive birth experience when transfer is needed. Established links between the home birth setting and the hospital might enhance the opportunity for a positive birth experience irrespective of where the birth is completed. © 2011.
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