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Sökning: LAR1:lu > Ersta Sköndal Bräcke högskola

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  • Alvariza, Anette, et al. (författare)
  • How to support teenagers who are losing a parent to cancer : Bereaved young adults' advice to healthcare professionals—A nationwide survey
  • 2017
  • Ingår i: Palliative and Supportive Care. - Cambridge University Press. - 1478-9515. ; 15:3, s. 313-319
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective:: The loss of a parent to cancer is considered one of the most traumatic events a teenager can experience. Studies have shown that teenagers, from the time of diagnosis, are already extremely worried about the consequences of a parent's cancer but tend to be left to manage these concerns on their own. The present study aimed to explore young adults' advice to healthcare professionals on how to support teenagers who are losing a parent to cancer. Methods:: This work derives from a Swedish nationwide survey and employs a qualitative approach with a descriptive/interpretive design to obtain answers to an open-ended question concerning advice to healthcare professionals. Of the 851 eligible young adults who had lost a parent to cancer when they were 13–16 years of age within the previous 6 to 9 years, 622 participated in our survey (response rate = 73%). Of these 622 young adults, 481 responded to the open-ended question about what advice to give healthcare professionals. Results:: Four themes emerged: (1) to be seen and acknowledged; (2) to understand and prepare for illness, treatment, and the impending death; (3) to spend time with the ill parent, and (4) to receive support tailored to the individual teenager's needs. Significance of Results:: This nationwide study contributes hands-on suggestions to healthcare staff regarding attitudes, communication, and support from the perspective of young adults who, in their teenage years, lost a parent to cancer. Teenagers may feel better supported during a parent's illness if healthcare professionals take this manageable advice forward into practice and see each teenager as individuals; explain the disease, its treatments, and consequences; encourage teenagers to spend time with their ill parent; and recommend sources of support.
  • Axelsson, Lena, et al. (författare)
  • Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease : A National Registry Study About the Last Week of Life
  • 2018
  • Ingår i: Journal of Pain and Symptom Management. - Elsevier. - 0885-3924. ; 55:2, s. 236-244
  • Tidskriftsartikel (refereegranskat)abstract
    • Context: End-stage kidney disease (ESKD) is characterized by high physical and psychological burden, and therefore, more knowledge about the palliative care provided close to death is needed. Objectives: To describe symptom prevalence, relief, and management during the last week of life, as well as end-of-life communication, in patients with ESKD. Methods: This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected. Results: About 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44%, respectively, were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/inpatient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families. Conclusion: Even if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support.
  • Beck, Ingela, 1965-, et al. (författare)
  • Translation and cultural adaptation of the Integrated Palliative care Outcome Scale including cognitive interviewing with patients and staff
  • 2017
  • Ingår i: BMC Palliative Care. - BioMed Central. - 1472-684X. ; 16:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context. Methods: Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care. Results: The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the questions were experienced as inappropriate, and all questions were judged important. Conclusions: In this study, we translated and culturally adapted the patient and staff versions of IPOS, and demonstrated face and content validity and acceptability of the scale through cognitive interviewing with patients and staff within residential care facility, surgical and specialised palliative home care units. Cognitive interviewing in parallel with patients and staff in rounds, with tentative analysis in between, was a suitable method for identifying and solving challenges with comprehension and evaluation in the pre-final version of IPOS. The Swedish IPOS is now available for use in a variety of clinical care settings.
  • 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. - American Society of Clinical Oncology. - 1527-7755.
  • Tidskriftsartikel (refereegranskat)abstract
    • PURPOSETo 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. METHODSThis 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.ResultsA 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). CONCLUSIONOur 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 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. - John Wiley & Sons. - 1099-1611. ; 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.
  • Bylund-Grenklo, T, et al. (författare)
  • Teenagers want to be told when a parent's death is near: A nationwide study of cancer-bereaved youths' opinions and experiences
  • 2015
  • Ingår i: Acta Oncologica. - Taylor & Francis. - 1651-226X. ; 54:6, s. 250-944
  • Tidskriftsartikel (refereegranskat)abstract
    • Background. We aimed to investigate cancer-bereaved youths' opinions and experiences of being told about a parent's imminent death from cancer and of barriers to this communication. Material and methods. This nationwide population-based survey included 622/851 (73%) youths (aged 18 -26) who at age 13-16, 6-9 years earlier had lost a parent to cancer. Results. In total 595 of 610 (98%) of the participants stated that teenage children should be informed when the parent's death was imminent (i.e. a matter of hours or days, not weeks). 59% stated that they themselves had been told this, 37% by the parents, 7% by parents and healthcare professionals together and 8% by professionals only. Frequent reasons for why the teenager and parents did not talk about imminent death before loss were that one (n = 106) or both (n = 25) of the parents together with the teenage child had pretended that the illness was not that serious, or that none of the parents had been aware that death was imminent (n = 80). Up to a couple of hours before the loss, 43% of participants had not realized that death was imminent. Conclusion. In this population-based study virtually all youth who at ages 13-16 had lost a parent to cancer afterwards stated that teenagers should be told when loss is near, i.e. a matter of hours or days, not weeks. Many stated that they had not been given this information and few were informed by professionals, with implications for future improvements in end-of-life care of patients with teenage children.
  • Bylund-Grenklo, Tove, et al. (författare)
  • Unresolved grief and its consequences : A nationwide follow-up of teenage loss of a parent to cancer 6-9 years earlier
  • 2016
  • Ingår i: Supportive Care in Cancer. - 0941-4355. ; 24:7, s. 3095-3103
  • Tidskriftsartikel (refereegranskat)abstract
    • PurposeThe early loss of a parent is a tragedy and a serious life event. This study investigated grief resolution and morbidity in cancer-bereaved teenagers 6 to 9 years after the loss of a parent to cancer.MethodsIn a nationwide population-based study of 622 of 851 (73 %) youths who as teenagers 6 to 9 years earlier had lost a parent to cancer, we explored the magnitude of unresolved grief and its association with psychological and physiological morbidity. Participants answered a study-specific anonymous questionnaire including questions about if they had worked through their grief and about their current health. Results Six to nine years post-loss 49 % reported unresolved grief (8 % no and 41 % a little grief resolution). They had, in comparison with youths reporting resolved grief. statistically significantly elevated risks, e.g. for insomnia (sons' relative risk (RR) 2.3, 95 % CI 1.3-4.0; daughters' RR 1.7, 95 % CI 1.1-2.7), fatigue (sons' RR 1.8, 95 % CI 1.3-2.5; daughters' RR 1.4, 95 % CI 1.1-1.7) and moderate to severe depression, i.e. score >9, PHQ-9 (sons' RR 3.6, 95 % CI 1.4-8.8; daughters' RR 1.8, 95 % CI 1.1-3.1). Associations remained for insomnia in sons, exhaustion in daughters and fatigue in both sons and daughters when depression, negative intrusive thoughts and avoiding reminders of the parents' disease or death were included in a model. Conclusions Approximately half of cancer-bereaved youth report no or little grief resolution 6 to 9 years post-loss, which is associated with fatigue, sleeping problems and depressive symptoms.
  • Christiansson, Elisabeth (författare)
  • Kyrklig och social reform : : motiveringar till diakoni 1845-1965
  • 2006
  • Doktorsavhandling (övrigt vetenskapligt)abstract
    • The main purpose of this dissertation is to see how proponents of diaconia justified the establishment of three Swedish diaconal institutions: Diaconissanstalten 1851 (The Institution for Deaconesses, Stockholm, now Ersta diakonissällskap/Ersta Association for Diaconal Work), Stockholms Stadsmission 1853 (The Stockholm City Mission) and Svenska Diakonanstalten 1898 (The Swedish institution for Deacons, first in Gävle, from 1905 in Stockholm, now Stiftelsen Stora Sköndal/The Stora Sköndal Foundation). Included is also a study of how diaconal work was justified in Sweden in the post-war period, a time when religious neutrality within health care and education was high on the political agenda. An additional purpose is to discuss how these justifications are related to the modern discourse of social work. The primary source material consists of journals that voiced the opinions of the aforementioned diaconal institutions, Parliamentary records and newspaper articles. This material is culled for justificatory arguments. The set of justifications found in each setting is discussed from three angles: theology, ideology and gender roles. The dissertation shows that justifications for diaconal institutions have varied over time, but that all the initiatives have reformism in common. Diaconal institutions are vindicated as projects for social and ecclesial improvement and not merely as instruments for the material or spiritual well-being of individuals. This reformist stance contrasts with how responsibility for one's neighbour was justified in pre-industrial Sweden: as a duty performed within a static society. Reformism in diaconia is in this dissertation looked upon as an early example of modernisation. The justifications of diaconal work found in the source material are the following. In the 1850s diaconal work was justified theologically as a means of revival and evangelism. The ideological stance of its proponents was social conservative. Female diaconia was propagated because women were regarded as particularly apt for nursing and caring. Around the year 1900 diaconal work was mainly a question of reinforcing the Church of Sweden as the spiritual and moral foundation of Swedish society. Ideologically, diaconia (both male and female) was still social conservative. The justification of male diaconia was that supposedly male characteristics could be made useful in a lay ministry at the service of the Church of Sweden. In post-war Sweden the basis for justifications shifted to social liberalism and a theology of stewardship.
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