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  • 1. Browall, M
    et al.
    Persson, L-O
    Ahlberg, K
    Karlsson, P
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Daily assessment of stressful events and coping among post-menopausal women with breast cancer treated with adjuvant chemotherapy2009In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 18, no 5, p. 507-516Article in journal (Refereed)
    Abstract [en]

    The purpose of the study was twofold: to examine what type of daily stressful events post-menopausal woman with breast cancer experience during adjuvant chemotherapy and how bothersome these are and to identify coping strategies used by these women used to manage such stressful events. The patient group comprised 75 consecutively invited women (≥55 years of age) at two university hospitals and one county hospital in Sweden. The Daily Coping Assessment was used to collect data over time. Data were analysed both qualitatively and quantitatively. Six categories of stressful events were identified: `nausea and vomiting', `fatigue', `other symptoms', `isolation and alienation', `fear of the unknown' and `being controlled by the treatment'. The first three categories were subsumed under the domain physical problems and the latter three under psychosocial problems. Almost 30% of the diary entries recorded no stressful event. Physical problems were three times as frequent as psychosocial problems. `Nausea/vomiting' was the most frequently observed stressful event (21.6%). `Isolation and alienation' and `fear of the unknown' were less frequent, but when they occurred they were rated as the most distressing. Several coping strategies were used to manage each stressful event. The most common strategies were acceptance, relaxation and distraction. Religion was rarely used as a coping strategy.

  • 2.
    Devik Andreasen, Siri
    et al.
    Nord Universitetet, Norge.
    Hellzen, Ove
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Enmarker, Ingela
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Nord Univ, Dept Hlth Sci, Ctr Care Res, Steinkjer, Norway; Högskolan i Gävle.
    Bereaved family members' perspectives on suffering among older rural cancer patients in palliative home nursing care: A qualitative study2017In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 26, no 6, article id e12609Article in journal (Refereed)
    Abstract [en]

    Little is known about experiences with receiving home nursing care when old, living in a rural area, and suffering from end-stage cancer. The aim of this study was thus to investigate bereaved family members' perceptions of suffering by their older relatives when receiving palliative home nursing care. Qualitative semi-structured interviews were conducted with 10 family members, in Norway during autumn 2015, and directed content analysis guided by Katie Eriksson's theoretical framework on human suffering was performed upon the data. The two main categories identified reflected expressions of both suffering and well-being. Expressions of suffering were related to illness, to care and to life and supported the theory. Expressions of well-being were related to other people (e.g. familiar people and nurses), to home and to activity. The results indicate a need to review and possibly expand the perspective of what should motivate care. Nursing and palliative care that become purely disease and symptom-focused may end up with giving up and divert the attention to social and cultural factors that may contribute to well-being when cure is not the goal.

  • 3.
    Melin Johansson, Titti
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Axelsson, Bertil
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Caregivers' perceptions about terminally ill family members' quality of life2007In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 16, no 4, p. 338-345Article in journal (Refereed)
    Abstract [en]

    Caregivers' perceptions on terminally ill family members' quality of life is rarely described. The aim of this study was to describe caregivers' perceptions about terminally ill family members' quality of life when suffering from cancer. Four caregivers participated in repeated focus group, and the data were analysed using qualitative content analysis. The findings were presented through five themes: 'living a normal life', 'being relieved from burdens', 'having a sense of belonging', 'being a symbol of incurable illness' and 'having a sense of dignity'. We found that to manage daily life it was significant to keep up a normal life and participate in social life. One new insight in this study was that caregivers contributed to an extending understanding to the term meaning in which the sense of belonging was fundamental. An obstacle for the sense of belonging was illuminated as the visible signs of incurable illness that stigmatized the ill person, and influenced the dignity. This study highlights the importance of supportive actions from significant others and healthcare professionals for terminally ill family members' quality of life.

  • 4.
    Melin-Johansson, Christina
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Axelson, Bertil
    Gaston-Johansson, F
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Significant improvement in quality of life of patients with incurable cancer after designation to a palliative homecare team2010In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 19, no 2, p. 243-250Article in journal (Other academic)
    Abstract [en]

    The aims of this study were to describe and compare quality of life (QOL) before and after designation to a palliative homecare team (PHT) in patients with different cancer diagnoses and to identify pre-designation predictors of post-designation global QOL. We measured patients� QOL one week before designation and 11 days (median time) after with the Assessment of Quality of life at the End of Life (AQEL). Of 163 eligible patient 63 participated without attrition. Patients� QOL improved in the physical, psychological, medical and global areas. Six items significantly improved: hours recumbent during the day (p=.009), nausea (p=.008), anxiety (p=.007), getting hold of staff (p=.000), received care (p=.003) and global QOL (p=.023). Depression/low in mood (r=.55) and meaningfulness (r=.70) associated to global QOL. Furthermore, pain (p=.028) and meaningfulness (p=.028) predicted global QOL. In the existential area, it is important to further explore how meaningfulness is associated to and predicts global QOL.

  • 5. Persson, C
    et al.
    Wennman-Larsen, A
    Sundin, Karin
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Gustavsson, P
    Assessing informal caregivers' experiences: a qualitative and psychometric evaluation of the Caregiver Reaction Assessment Scale2008In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 17, no 2, p. 189-199Article in journal (Refereed)
    Abstract [en]

    With the aim to evaluate the Swedish version of the Caregiver Reaction Assessment Scale (CRA), informal caregivers (n = 209) to individuals with a malignant disease, dementia or a physical impairment were recruited. The CRA was developed in the USA and is a self-rating questionnaire consisting of five subscales, measuring family members' reactions to the experience of caring for a relative with mental or physical illnesses. Data were analysed using psychometric and qualitative methods. Findings indicated good internal consistency, and a factor analysis confirmed the structure with five subscales; however, an overlap of items between the subscales was found. A content analysis of respondents' comments indicated that there were problems due to presuppositions inherent in the questions and with the meaning of words. Problems regarding inclusion/exclusion aspects in some concepts were also found. Two aspects of caregiver reactions were found to be missing or only partly covered: worrying and positive experiences. Results from this study suggest that the Swedish version is useful for assessment of caregiver reactions but needs further refinement.

  • 6.
    Udo, Camilla
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Health Care Sciences Post Graduate School Karolinska Institute Stockholm Sweden .
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Henoch, Ingela
    Institute of Health and Care Sciences The Sahlgrenska Academy University of Gothenburg Gothenburg Sweden.
    Axelsson, Bertil
    Department of General Surgery Östersund Hospital Östersund Sweden .
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Institute of Health and Care Sciences The Sahlgrenska Academy University of Gothenburg Gothenburg Sweden .
    Surgical nurses’ attitudes towards caring for patients dying of cancer: a pilot study of an educational intervention on existential issues2014In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 23, no 4, p. 426-440Article in journal (Refereed)
    Abstract [en]

    This is a randomised controlled pilot study using a mixed methods design. The overall aim was to test an educational intervention on existential issues and to describe surgical nurses' perceived attitudes towards caring for patients dying of cancer. Specific aims were to examine whether the educational intervention consisting of lectures and reflective discussions, affects nurses' perceived confidence in communication and to explore nurses' experiences and reflections on existential issues after participating in the intervention. Forty-two nurses from three surgical wards at one hospital were randomly assigned to an intervention or control group. Nurses in both groups completed a questionnaire at equivalent time intervals: at baseline before the educational intervention, directly after the intervention, and 3 and 6 months later. Eleven face-to-face interviews were conducted with nurses directly after the intervention and 6 months later. Significant short-term and long-term changes were reported. Main results concerned the significant long-term effects regarding nurses' increased confidence and decreased powerlessness in communication, and their increased feelings of value when caring for a dying patient. In addition, nurses described enhanced awareness and increased reflection. Results indicate that an understanding of the patient's situation, derived from enhanced awareness and increased reflection, precedes changes in attitudes towards communication.

  • 7.
    Wasteson, Elisabeth
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Social Sciences.
    Sandelin, Kerstin
    Karolinska Inst, Dept Mol Med & Surg, Stockholm, Sweden .
    Brandberg, Y
    Karolinska Inst, Dept Pathol & Oncol, Stockholm, Sweden.
    Wickman, M
    Molecular Medicine and Surgery, Karolinska Institutet, Stockholm.
    Arver, B
    Department of Oncology and Pathology, Karolinska Institutet, Stockholm, Sweden.
    High satisfaction rate ten years after bilateral prophylactic mastectomy - a longitudinal study2011In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 20, no 4, p. 508-513Article in journal (Refereed)
    Abstract [en]

    High satisfaction rate ten years after bilateral prophylactic mastectomy - a longitudinal study Women from families with an increased risk for breast/ovarian cancer have undergone bilateral prophylactic mastectomy (BPM) since the early 1990s at the Karolinska University Hospital in Sweden. Perceptions of BPM as reported by the first women who underwent the procedure have previously been evaluated on a short-term basis (1-3 years). The present study aims to evaluate the long-term (10 years) physical and psychological consequences of BPM in the same cohort of women. Some of the very first women to undergo BPM participated in the present interview study (n= 13). The semi-structured interviews focused on the women's long-term experiences related to BPM and immediate breast reconstruction. Overall, the women were satisfied with their decision to undergo BPM and perceived a negligible remaining risk of getting breast cancer. For most women, the operation had not resulted in changes in family life or lifestyle (n= 8), although some described that the relationship with their spouse was affected (8/13), either in a negative (n= 5) or positive (n= 3) way. The cosmetic results were mainly positive (n= 10). Recurrent counselling and support during the whole process of decision, treatment and follow up is recommended.

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