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  • 1.
    Bylund-Grenklo, Tove
    et al.
    Karolinska institutet.
    Kreicbergs, Ulrika
    Uggla, Charlotta
    Valdimarsdóttir, Unnur A
    Nyberg, Tommy
    Steineck, Gunnar
    Fürst, Carl Johan
    Teenagers want to be told when a parent's death is near: A nationwide study of cancer-bereaved youths' opinions and experiences.2015In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 54, no 6, p. 944-50Article in journal (Refereed)
    Abstract [en]

    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.

  • 2.
    Koyi, Hirsh
    et al.
    Department of Respiratory Medicine, Gävle Hospital, Gävle, Sweden; Karolinska Institutet, Stockholm, Sweden; Centre for Research and Development, Uppsala University/County Council of Gävleborg, Gävle, Sweden.
    Hillerdal, Gunnar
    Department of Respiratory Medicine and Allergy, Karolinska University Hospital, Solna, Stockholm, Sweden.
    Andersson, Olov
    Department of Respiratory Medicine and Allergy, Karolinska University Hospital, Solna, Stockholm, Sweden.
    Högberg, Hans
    University of Gävle, Faculty of Health and Occupational Studies, Department of Health and Caring Sciences, Caring science.
    Brandén, Eva
    Department of Respiratory Medicine, Gävle Hospital, Gävle, Sweden; Karolinska Institutet, Stockholm, Sweden; Centre for Research and Development, Uppsala University/County Council of Gävleborg, Gävle, Sweden.
    Lung cancer among native and foreign-born Swedes: histopathology, treatment, and survival2016In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 55, no 11, p. 1344-1348Article in journal (Refereed)
    Abstract [en]

    Background: Lung cancer (LC) is the leading cause of cancer-related death worldwide, including Sweden. Several studies have shown that socioeconomic status affects the risk, treatment, and survival of LC. Due to immigration after Second World War, foreign-born people constitute 12.5% of the Swedish population. We wanted to investigate if there were any differences in LC management, treatment and survival among the foreign-born Swedes (FBS) compared to the native Swedish population (NatS) in Stockholm. Material and methods: A retrospective analysis of all patients diagnosed with non-small cell lung cancer (NSCLC) at the Department of Respiratory Medicine and Allergy, Karolinska University Hospital, Solna from 1 January 2003 to 31 December 2008 was made. In all, 2041 cases of LC were diagnosed, thereof 1803 with NSCLC. Of these, 211 (11.7%) were FBS. Results: The mean age of NatS and FBS patients was 69.9 years, median 70 (range 26–96) and 66.0 years, median 66 (range 38–94), respectively (p < 0.001). In all, 89.8% of NatS and 90.0% of FBS were either smokers or former smokers. Adenocarcinoma was the most common subtype in both groups (NatS 54.7%, FBS 48.3%). In 140 (8.8%) of the NatS and 17 (8.1%) of the FBS the diagnosis was clinical only. There were no significant differences in stage at diagnosis, nor in performance status (PS) or different therapies between the groups. The median overall survival time for the NatS was 272 days and for FBS 328 days, again no significant difference. However, the median overall survival time for female NatS was 318 days and for female FBS 681 days (p = 0.002). Conclusion: FBS patients were significantly younger than NatS at diagnosis, and female FBS lived longer than female NatS, but otherwise there were no significant differences between NatS and FBS patients with LC regarding diagnosis, treatment, and survival. 

  • 3.
    Roshanai, Afsaneh Hayat
    et al.
    Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Rosenquist, Richard
    Lampic, Claudia
    University of Gävle, Department of Caring Sciences and Sociology, Ämnesavdelningen för vårdvetenskap. Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Nordin, Karin
    Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden; Department of Genetics and Pathology, Uppsala University, Sweden.
    Does enhanced information at cancer genetic counseling improve counselees knowledge, risk perception, satisfaction and negotiation of information to at-risk relatives?: a randomized study2009In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 48, no 7, p. 999-1009Article in journal (Refereed)
    Abstract [en]

    Purpose. The aim of the present randomized intervention study was to investigate the effect of receiving extended cancer genetic information on counselees' knowledge, risk perception, information sharing and satisfaction with the service. Methods. In total, 147 counselees, affected by cancer and/or a family history of cancer, were randomized to extended or standard information. The levels of counselees' knowledge and personal risk estimations were measured at four time points. In addition, counselees' satisfaction with the counseling and sharing of the information to at-risk relatives was assessed. The intervention included meeting a specialist nurse, learning the breaking bad news method, receiving written material and video-taped counseling sessions. Results. A significant increase in the level of knowledge in participants in the "breast cancer group" regardless of the randomization was observed over time. The correct estimation of personal risk increased significantly in both groups after two weeks, but declined at the eight month follow-up. Most of the participants had informed at-risk relatives about their visit at the cancer genetic clinic. The majority of respondents in both groups were highly satisfied with the counseling. The only observed effects of the intervention were that counselees in the intervention group were significantly more satisfied with the content of the given information and with the way of informing relatives. Conclusion. Apparently, the current genetic counseling is managed properly and extended information does not seem necessary in all cases. However, some counselees need additional sessions.

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