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  • 1.
    Andreassen Devik, Siri
    et al.
    Centre for Care Research Mid-Norway, Steinkjer, Norway; Department of Health Sciences, Mid-Sweden University, Sundsvall, Sweden.
    Enmarker, Ingela
    Centre for Care Research Mid-Norway, Steinkjer, Norway; Nord Trøndelag University College, Namsos, Norway.
    Bitnes Wiik, Guri
    Nord Trøndelag University College, Namsos, Norway.
    Hellzén, Ove
    Centre for Care Research Mid-Norway, Steinkjer, Norway; Department of Health Sciences, Mid-Sweden University, Sundsvall, Sweden; Nord Trøndelag University College, Namsos, Norway.
    Meanings of being old, living on one's own and suffering from incurable cancer in rural Norway2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 6, p. 781-787Article in journal (Refereed)
    Abstract [en]

    Purpose

    The aim of this study was to explore and understand the lived experience of older people living alone and suffering from incurable cancer in rural Norway.

    Methods and sample

    Narrative interviews were conducted with five older people with incurable cancer (three women and two men, aged 71–79), receiving outpatient and life-prolonging chemotherapy and living alone in their homes in rural areas. A phenomenological hermeneutical approach was used to interpret the meaning of the lived experience.

    Key results

    Four main themes were found: enduring by keeping hope alive, becoming aware that you are on your own, living up to expectations of being a good patient and being at risk of losing one's identity and value. Enduring this situation means struggling with terminal illness and facing death in a brave manner, and replacing former ways of living. The process of providing treatment may threaten dignity and cause additional distress.

    Conclusions

    These results show a complex and comprehensive situation where physical symptoms and emotions are interwoven. Further the results describe how the ways of suffering caused by the manner in which care is delivered, suffering related to the cancer disease and existential suffering, may increase each other's impact. The social and rural context calls for special attention as the patients may lack recourses to gain sufficient care. Their comfort depends to a large extent on the health professionals' sensitivity.

  • 2.
    Hamberg Levedahl, Kerstin
    et al.
    Uppsala universitet.
    Nilsson, Annika
    University of Gävle, Faculty of Health and Occupational Studies, Department of Caring Science, Caring Science.
    Ungerstedt, Johanna
    Karolinska University Hospital, and Hematology and Regenerative Medicine Center.
    Hedström, Marianne
    Uppsala university.
    Living with systemic mastocytosis: balancing between vulnerability and resilience: A qualitative study2022In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 60, article id 102172Article in journal (Refereed)
    Abstract [en]

    Purpose Systemic mastocytosis (SM) is a rare group of hematological malignancies with heterogeneous symptoms from various organs, and overall survival ranges from normal for indolent SM (ISM) to 2–4 years for advanced SM subtypes (Adv SM). There is limited knowledge about the experience of living with SM. Thus, the purpose of this study was to describe the experiences of everyday life among persons diagnosed with ISM or Adv SM. 

    Methods In this descriptive qualitative study, data were collected through purposive sampling and semi-structured interviews with 16 participants diagnosed with ISM (n = 9) or Adv SM (n = 7). Data were subsequently analysed with content analysis. 

    Results Three main categories were identified. The persistent presence of the disease includes findings of how the symptoms affected the participants, how they handled its limitations, and the adaptions and medication management required. Struggling against ignorance illustrates contact with both healthcare professionals and strangers. The participants described being forced to be experts on SM due to a general lack of knowledge. An illness or wellness perspective encompasses the participants’ feelings of vulnerability and alienation, but also how various strategies were used to gain emotional control.

    Conclusions 

    The disease has a considerable impact on everyday life, with constant efforts required to manage symptoms and medication side effects. The complexity and rarity of the disease complicated relationships with healthcare professionals and contributed to feelings of marginalisation and alienation. The participants described feeling vulnerable but used a multitude of strategies in their striving for resilience. Trusting relationships with healthcare professionals, family members and friends promoted a wellness perspective. 

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  • 3.
    Lundberg, Tina
    et al.
    Department of Neurobiology, Care Sciences and Society/Division of Social Work, Karolinska Institutet, Huddinge, Sweden; Department of Health Care Sciences/Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden; Function Area in Social Work and Health, Karolinska University Hospital, Stockholm, Sweden.
    Forinder, Ulla
    University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work. Department of Neurobiology, Care Sciences and Society/Division of Social Work, Karolinska Institutet, Huddinge, Sweden; Function Area in Social Work and Health, Karolinska University Hospital, Stockholm, Sweden.
    Olsson, Mariann
    Department of Neurobiology, Care Sciences and Society/Division of Social Work, Karolinska Institutet, Huddinge, Sweden; Function Area in Social Work and Health, Karolinska University Hospital, Stockholm, Sweden; Stockholms Sjukhem Foundation, Stockholm, Sweden.
    Fürst, Carl Johan
    Department of Neurobiology, Care Sciences and Society/Division of Social Work, Karolinska Institutet, Huddinge, Sweden; .
    Årestedt, Kristofer
    Faculty of Health and Life Science, Linnaeus University, Kalmar, Sweden; Department of Medical and Health Sciences, Linköping University, Linköping, Sweden; Kalmar County Council, Kalmar, Sweden.
    Alvariza, Anette
    Department of Health Care Sciences/Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden; Capio Palliative Care Unit, Dalen Hospital, Enskededalen, Stockholm, Sweden.
    Bereavement stressors and psychosocial well-being of young adults following the loss of a parent – A cross-sectional survey2018In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 35, p. 33-38Article in journal (Refereed)
    Abstract [en]

    Purpose: The knowledge about young adults who have lost a parent to cancer is limited, and to reach a broader understanding about this group, this study used the Dual Process Model of Coping with Bereavement (Stroebe and Schut, 1999) as a theoretical framework. The purpose of this study was to describe loss- and restoration-oriented bereavement stressors and psychosocial wellbeing of young adults following the loss of a parent to cancer. Method: This survey used baseline data from a longitudinal study. Young adults, aged 16–28 years, who lost a parent to cancer more than two months earlier and agreed to participate in support groups held at three palliative care services in Sweden, responded to a comprehensive theory-based study-specific questionnaire. Results: Altogether, 77 young adults (64 women and 13 men) answered the questionnaire an average of five-to-eight months after the loss. Twenty percent (n = 15) had not been aware of their parent's impending death at all or only knew a few hours before the death, and 65% (n = 50) did not expect the death when it occurred. The young adults reported low self-esteem (n = 58, 76%), mild to severe anxiety (n = 55, 74%), mild to severe depression (n = 23, 31%) and low life satisfaction. Conclusion: Young adults reported overall poor psychosocial wellbeing following bereavement. The unexpectedness and unawareness of the parent's imminent death, i.e., loss-oriented bereavement stressors, might influence psychosocial wellbeing. Despite these reports, restoration-oriented stressors, such as support from family and friends, helped them to cope with the loss.

  • 4.
    Sundberg, Kay
    et al.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    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.
    Björk, Olle
    Department of Women and Child Health, Karolinska Institutet, Stockholm, Sweden.
    Arvidsson, Johan
    Department of Women's and Children's Health, Uppsala University Children's Hospital, Uppsala, Sweden.
    Wettergren, Lena
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Positive and negative consequences of childhood cancer influencing the lives of young adults2009In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 13, no 3, p. 164-170Article in journal (Refereed)
    Abstract [en]

    The aim of the study was to describe how young adults who have survived childhood cancer consider their present life to be influenced by the cancer experience. A cohort of 246 long-term survivors were approached a median of 16 years after diagnosis. Semi-structured telephone interviews were conducted based on the Swedish version of the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW). Interviews were analysed using content analyses. When asked if cancer negatively or positively currently affected their lives, 68% reported at least one negative consequence and 53% at least one positive consequence. The most frequently reported negative consequences include a variety of physical impairments and limitations in participating in activities; positive consequences describe a more positive view of life and of self. Women more often than men reported negative psychological impact, a changed body appearance and positive interaction with others. CNS tumours and combined treatment were somewhat associated to a higher extent of negative consequences. Overall, the results indicate that long-term survivors of childhood cancer are getting along quite well despite shortcomings.

  • 5.
    Swenne, Christine Leo
    et al.
    Uppsala universitet, Vårdvetenskap.
    Cederholm, Karin
    Uppsala universitet, Institutionen för kirurgiska vetenskaper.
    Gustafsson, Maria
    Uppsala universitet, Institutionen för kirurgiska vetenskaper.
    Arakelian, Erebouni
    Uppsala universitet, Klinisk psykologi i hälso- och sjukvård.
    Postoperative health and patients' experiences of efficiency and quality of care after cytoreductive surgery and hyperthermic intraperitoneal chemotherapy, two to six months after surgery2015In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 19, no 2, p. 191-197Article in journal (Refereed)
    Abstract [en]

    Purpose: To study post-discharge health after Cytoreductive Surgery (CRS) and Hyperthermic Intraperitoneal Chemotherapy (HIPEC), and to. analyse patients' experiences of in-hospital efficiency and quality of care. Methods: In-depth individual telephone interviews using an interview guide with open-ended questions were performed with 19 patients with peritoneal carcinomatosis between April and October, 2012. Data were analysed with systematic text condensation. Results: Four themes were identified: 1) Coming home was an essential step in the recovery process and the focus was on getting well physically despite mental stress, uncertainty about the medical rehabilitation plan and the future. 2) Health was affected negatively by postoperative chemotherapy and its side effects. 3) Stoma - a necessary evil affecting the patient's social life. 4) Quality of care and efficiency were defined in patient-centred terms and inter-personal care from the patient's perspectives on Micro level. Despite all, 32% of the patients described being fully recovered and had started to study or work two months after surgery. Conclusions: The study gives insights into some real-life experiences described by patients. The study results can be used to prepare written information, to design a postoperative rehabilitation plan for future patients with Peritoneal Carcinomatosis (PC) and to create a home-page through which patients can receive support from both health care professionals and other fellow patients.

  • 6.
    Wennman-Larsen, Agneta
    et al.
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Persson, Carina
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Ostlund, Ulrika
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Wengström, Yvonne
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Gustavsson, J Petter
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Development in quality of relationship between the significant other and the lung cancer patient as perceived by the significant other2008In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 12, no 5, p. 430-5Article in journal (Refereed)
    Abstract [en]

    Aim: To prospectively explore the quality of the relationship between significant others and patients during lung cancer. based on the perceptions of the significant others. Method: In a sample of 91 significant others, longitudinal data were collected during the first year after diagnosis, and explored on group level and as individual patterns over time. Results: Relational quality was skewed towards high quality, although 30% of the significant others reported low levels close to diagnosis. Forty-eight percent reported stability in the quality of their relationship during the disease trajectory. Within this group, 36% reported low levels of relational quality. Fifty-two percent reported change in quality of relationship and four typical patterns of change were identified. Two showed approximate linear changes in either a positive direction (15%) or a negative direction (49%), and two showed non-linear changes with a temporary ascending curve (11%) or a descending curve (26%). This implies that a change towards low levels of relational quality was most common. Conclusion: The present results show that illness may be a trigger for change in relational quality, which may have implications for future family-centred practice and research, since previously high relational quality has been linked to improved emotional well-being.

1 - 6 of 6
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