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  • 1.
    Birgisdóttir, Dröfn
    et al.
    Faculty of Medicine, Department of Clinical Sciences Lund, Oncology and Pathology, Institute for Palliative Care, Lunds University, Lund, Sweden.
    Bylund-Grenklo, Tove
    University of Gävle, Faculty of Health and Occupational Studies, Department of Caring Science, Caring Science. Clinical Cancer Epidemiology, Department of Oncology-Pathology, Karolinska Institute, Stockholm, Sweden.
    Nyberg, Tommy
    Clinical Cancer Epidemiology, Department of Oncology-Pathology, Karolinska Institute, Stockholm, Sweden; Centre for Cancer Genetic Epidemiology, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK; Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Kreicbergs, Ulrika
    Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden; Department of Caring Sciences, Palliative Research Center, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
    Steineck, Gunnar
    The Sahlgrenska Academy, Department of Oncology, Division of Clinical Cancer Epidemiology, University of Gothenburg Institute of Clinical Sciences, Gothenburg, Sweden.
    Fürst, Carl J.
    Faculty of Medicine, Department of Clinical Sciences Lund, Oncology and Pathology, Institute for Palliative Care, Lunds University, Lund, Sweden.
    Losing a parent to cancer as a teenager: Family cohesion in childhood, teenage, and young adulthood as perceived by bereaved and non-bereaved youths2019In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 28, no 9, p. 1845-1853Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of this study was to investigate levels of perceived family cohesion during childhood, teenage years, and young adulthood in cancer-bereaved youths compared with non-bereaved peers.

    METHODS: In this nationwide, population-based study, 622 (73%) young adults (aged 18-26) who had lost a parent to cancer 6 to 9 years previously, when they were teenagers (aged 13-16), and 330 (78%) non-bereaved peers from a matched random sample answered a study-specific questionnaire. Associations were assessed using multivariable logistic regression.

    RESULTS: Compared with non-bereaved youths, the cancer-bereaved participants were more likely to report poor family cohesion during teenage years (odds ratio [OR] 1.6, 95% CI, 1.0-2.4, and 2.3, 95% CI, 1.5-3.5, for paternally and maternally bereaved youths, respectively). This was also seen in young adulthood among maternally bereaved participants (OR 2.5; 95% CI, 1.6-4.1), while there was no difference between paternally bereaved and non-bereaved youths. After controlling for a number of covariates (eg, year of birth, number of siblings, and depression), the adjusted ORs for poor family cohesion remained statistically significant. In a further analysis stratified for gender, this difference in perceived poor family cohesion was only noted in females.

    CONCLUSION: Teenage loss of a parent to cancer was associated with perceived poor family cohesion during teenage years. This was also noted in young adulthood among the maternally bereaved. Females were more likely to report poor family cohesion. Our results indicate a need for increased awareness of family cohesion in bereaved-to-be families with teenage offspring, with special attention to gender roles.

  • 2.
    Bylund-Grenklo, Tove
    et al.
    University of Gävle, Faculty of Health and Occupational Studies, Department of Caring Science, Caring Science. Department of Oncology Pathology, Karolinska Institutet, Stockholm, Sweden.
    Werkander-Harstäde, Carina
    Department of Health and Caring Sciences, Linnaeus University, Växjö; Center for Collaborative Palliative Care, Växjö, Sweden; Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Sandgren, Anna
    Department of Health and Caring Sciences, Linnaeus University, Växjö; Center for Collaborative Palliative Care, Växjö, Sweden; Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Benzein, Eva
    Department of Health and Caring Sciences, Linnaeus University, Kalmar; Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden .
    Östlund, Ulrika
    Centre for Research and Development, Uppsala University/Region Gävleborg, Gävle; Faculty of Medicine and Health, School of Health Sciences, Örebro University; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden .
    Dignity in life and care: The perspectives of Swedish patients in a palliative care context2019In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 25, no 4, p. 193-201Article in journal (Refereed)
    Abstract [en]

    Background: How patients preserve their sense of dignity in life is an important area of palliative care that remains to be explored. Aims: To describe patients' perspectives of what constitutes a dignified life within a palliative care context. Methods: Twelve palliative care patients were interviewed about their views on living with dignity. Data were analysed using qualitative content analysis. Results: What constitutes a dignified life during end-of-life care was captured by the theme 'I may be ill but I am still a human being' and presented under the categories 'preserving my everyday life and personhood', 'having my human value maintained by others through 'coherence' and 'being supported by society at large'. Conclusion: Patients' sense of dignity can be preserved by their own attitudes and behaviours, by others and through public support. Health professionals need to adopt a dignity-conserving approach, for which awareness of their own attitudes and behaviours is crucial. 

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