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  • 1.
    Andersson, Camilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Röing, Marta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Ehrsson, Ylva Tiblom
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Otolaryngology and Head and Neck Surgery.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    It's a question of endurance: patients with head and neck cancer experiences of 18F-FDG PET/CT in a fixation mask2017In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 29, p. 85-90, article id S1462-3889(17)30082-0Article in journal (Refereed)
    Abstract [en]

    PURPOSE: This study aimed to explore how patients with head and neck cancer experienced undergoing an (18)F-fluoro-deoxy-glucose positrons emissions tomography/computed tomography ((18)F-FDG PET/CT) examination in a fixation mask.

    METHOD: Interviews were conducted with nine patients with known or suspected head and neck cancer who were scheduled for the examination for the first time. The phenomenological method according to van Manen and his four lifeworld existentials; lived space, lived body, lived time, and lived relation was used to analyse the interviews.

    RESULTS: The thoughts and feelings of the patients during the PET/CT examination varied, some found it very difficult, while others did not. However, for all the patients, it was an experience that required some form of coping to maintain composure for example distraction.

    CONCLUSIONS: PET/CT examnation in a fixation mask may be strenuous for some patients. Patients need more detailed information, including suggestions for coping behaviours, prior to the examination, as well as higher level of support during and after the examination. The results of this study may be used to improve patient care and optimize the procedure of PET/CT examination in a fixation mask.

  • 2. Browall, M.
    et al.
    Athlin, Åsa Muntlin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Cardiovascular epidemiology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Wengstrom, Y.
    Conroy, T.
    Kitson, A.
    Experiences of Fundamentals of Care (FOC) for people with a cancer diagnosis - striving for normality and regaining control: striving for normality and regaining control2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no S1, p. S12-S12Article in journal (Other academic)
  • 3. Browall, Maria
    et al.
    Carlsson, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Horvath, György
    Information needs of women with recently diagnosed ovarian cancer: a longitudinal study.2004In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 8, no 3, p. 200-207Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate the information needs among patients with ovarian cancer and whether these information needs change over time. The information needs were evaluated three times, through structured interviews, and were based on the paired comparison approach developed by Degner and colleagues. A consecutive sample of patients (n = 82) with recently diagnosed ovarian cancer was asked to participate. Sixty-four patients (78%) chose to participate. The three different measurements of participants' information needs revealed only small changes in these needs. The three most important information needs, in all measurements, were information about the likelihood of cure, information about the stage and spreading of the disease, and information about different treatment options. Information regarding sexual attractiveness was the lowest ranked item in all measurements. Regarding subgroups (age, education) the only significant difference throughout all measurements was that younger patients rated issues of sexual attractiveness higher than older patients (p = 0.005). In this longitudinal study patients with ovarian cancer ranked information about the disease and its treatment (i.e. likelihood of cure, stage of disease, and treatment options) highest, and information about psychosocial aspects and self-care lowest. These findings are in accordance with the results from studies of women diagnosed with other types of cancer, which used the same methodology.

  • 4.
    Carlsson, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy.
    Cancer patients seeking information from sources outside the health care system: change over a decade2009In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 13, no 4, p. 304-305Article in journal (Refereed)
  • 5.
    Ekedahl, MarieAnne
    et al.
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Theology, Department of Theology.
    Wengström, Yvonne
    Department of Neurobiology, Care science and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden.
    Nurses in canceer care - Stress when encountering existential issues2007In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 11, p. 228-237Article in journal (Refereed)
  • 6.
    Ekedahl, MarieAnne
    et al.
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Theology, Department of Theology.
    Wengström, Yvonne
    Department of Neurobiology, Care science and Society, Division of Nursing, Karolinska Institutet, Huddinge Sweden.
    Nurses in cancer care - coping strategies when encountering existential issues.2006In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 10, p. 128-139Article in journal (Refereed)
    Abstract [en]

    This paper is a presentation of general/secular coping strategies and strategies related to the caritas orientation that nurses in cancer care use when encountering stress. As a concept, caritas indicates the will to do good. The paper tries to provide an answer to the quesion of which functional and dysfunctional coping strategies nurses use when coping with work-related stress. The study is qualitative and hypothesis-generating. The material analysed consists of 15 interviews with Swedish registered nurses and is based on a life-story approach. Pargament´s coping theory related to the psychology of religion has been applied for interpretation purposes. The nurses use several coping strategies with the dominant strategy being a general boundary demarcation. Other strategies that were used for coping included emotional outlets, caritas-oblivion and periodically changing activity. The strategies can be used in a functional or dysfunctional way; e.g. dysfunctional coping was present when there was a lack of human support and boundary demarcation.

  • 7. Enskär, Karin
    et al.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Prevalence of aspects of distress, coping, support and care among adolescents and young adolescents undergoing and being off cancer treatment2007In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 11, no 5, p. 400-408Article in journal (Refereed)
    Abstract [en]

    The overall aim is to describe the prevalence of physical and psychosocial distress, coping, support and care among adolescents and young adults who are both undergoing and off cancer treatment, and who find life satisfying or less satisfying. Prevalence of distress, coping, support and care were investigated using the Life Situation Scale for Adolescents (LSS-A) answered by 15 adolescents and young adults undergoing cancer treatment and 39 adolescents and young adults off cancer treatment. More adolescents and young adults receiving treatment reported problems with fatigue, eating, hair toss, taking medications/ tablets and having to plan everything according to hospital visits than those adolescents and young adults off treatment. Fewer adolescents and young adults who reported finding Life satisfying reported problems with fatigue, eating, not having any influence on their own Life, often being sad and problems with school/work than those finding life less satisfying. Whether adolescents and young adults find life satisfying or not is not related to whether they are undergoing or off cancer treatment. The findings indicate the importance for those working with adolescent cancer victims to be alert of the fact that the treatment period is connected with more problems related to physical distress than the period after treatment, whereas aspects of psychosocial distress are as prevalent during the treatment period as they are after.

  • 8. Hedayati, Elham
    et al.
    Alinaghizadeh, Hassan
    Schedin, Anna
    Nyman, Håkan
    Albertsson, Maria
    Effects of adjuvant treatment on cognitive function in women with early breast cancer.2012In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 16, no 3Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Whether adjuvant therapy impairs cognitive function in women with breast cancer (BC) is unclear. We determined the effects of adjuvant therapy on cognitive function in women with early BC.

    METHODS: We consecutively and prospectively enrolled women aged 40-69 years who had a positive radiographic finding from the mammography screening program at Stockholm South General Hospital. All women completed the Headminder Web-based neuropsychological battery Cognitive Stability Index (CSI) for response speed, processing speed, memory, and attention before diagnosis (T1), after surgery and before adjuvant treatment (T2), 6 months after start of adjuvant treatment (T3), and after another 3 months of follow-up (T4). Women with BC were divided into those receiving chemotherapy, hormone therapy, or no adjuvant medical therapy. Women without a diagnosis of BC served as healthy controls.

    RESULTS: Of the 146 women enrolled, 77 had BC of whom 18 received chemotherapy; 45, hormone therapy, and 14, no adjuvant medical therapy; 69 were healthy controls. Memory scores for women with BC were significantly lower than those for controls over time, even after controlling for age and education. Memory and response speed scores were lower after chemotherapy than before (P<0.01 for both). Processing speed and attention improved significantly over time in all groups, a result consistent with a practice effect.

    CONCLUSION: Our results indicate subtle changes related to time course and treatment. Especially, that chemotherapy may impair memory and response speed in women with BC, consistent with those reported by BC survivors after adjuvant medical treatment.

  • 9.
    Hedström, Mariann
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Skolin, Inger
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Distressing and positive experiences and important aspects of care for adolescents treated for cancer: adolescent and nurse perceptions2004In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 8, no 1, p. 6-17Article in journal (Refereed)
    Abstract [en]

    Distressing and positive experiences for adolescents with cancer with regard to being told the diagnosis, receiving chemotherapy and being admitted to the ward, and important aspects of care for adolescents with cancer was investigated. Data were gathered through semi-structured interviews with 23 adolescents and 21 nurses, and analysed by content analysis. The findings indicate that cancer during adolescence is connected with a range of negative experiences such as fears of alienation, fears of altered appearance, fears of dying, and various physical concerns. Positive experiences include positive relations to staff and being well cared for. Important care for adolescents treated for cancer consists mainly of meeting nice, friendly, supportive, and competent staff, who provide them with age-appropriate information. The findings indicate that adolescents with cancer experience a range of negative and positive experiences related to disease and treatment and that good care for adolescents with cancer is a broad, complex, and multidimensional phenomenon.

  • 10. Jakobsson, Sofie
    et al.
    Taft, Charles
    Östlund, Ulrika
    Ahlberg, Karin
    Performance of the Swedish version of the Revised Piper Fatigue Scale.2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 6, p. 808-13, article id S1462-3889(13)00080-XArticle in journal (Refereed)
    Abstract [en]

    PURPOSE: The Revised Piper Fatigue scale is one of the most widely used instruments internationally to assess cancer-related fatigue. The aim of the present study was to evaluate selected psychometric properties of a Swedish version of the RPFS (SPFS).

    METHODS: An earlier translation of the SPFS was further evaluated and developed. The new version was mailed to 300 patients undergoing curative radiotherapy. The internal validity was assessed using Principal Axis Factor Analysis with oblimin rotation and multitrait analysis. External validity was examined in relation to the Multidimensional Fatigue Inventory-20 (MFI-20) and in known-groups analyses.

    RESULTS: Totally 196 patients (response rate = 65%) returned evaluable questionnaires. Principal axis factoring analysis yielded three factors (74% of the variance) rather than four as in the original RPFS. Multitrait analyses confirmed the adequacy of scaling assumptions. Known-groups analyses failed to support the discriminative validity. Concurrent validity was satisfactory.

    CONCLUSION: The new Swedish version of the RPFS showed good acceptability, reliability and convergent and- discriminant item-scale validity. Our results converge with other international versions of the RPFS in failing to support the four-dimension conceptual model of the instrument. Hence, RPFS suitability for use in international comparisons may be limited which also may have implications for cross-cultural validity of the newly released 12-item version of the RPFS. Further research on the Swedish version should address reasons for high missing rates for certain items in the subscale of affective meaning, further evaluation of the discriminative validity and assessment of its sensitivity in detecting changes over time.

  • 11. Koinberg, Inga-Lill
    et al.
    Langius-Eklöf, Ann
    Holmberg, Lars
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Endocrine Surgery.
    Fridlund, Bengt
    The usefulness of a multidisciplinary educational programme after breast cancer surgery: A prospective and comparative study2006In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 10, no 4, p. 273-282Article in journal (Refereed)
    Abstract [en]

    The aim of the study was to compare and evaluate a multidisciplinary educational programme with traditional follow-up visits to a physician after breast cancer surgery in terms of well-being, aspects of self-care and coping ability 1 year after diagnosis. A reduction in the intensity of follow-up after breast cancer surgery is recommended. New follow-up models are being debated and could be of interest. The study design was non-randomised and comparative. Ninety-six consecutively selected women with newly diagnosed breast cancer, classified as stage I or stage II, participated in either a multidisciplinary educational programme (n=50), or traditional follow-up by a physician (n=46). Three questionnaires were used: Functional Assessment of Cancer Therapy-General (FACT-G), a study specific questionnaire regarding self-care aspects (SCA) and Sense of Coherence (SOC). With the exception of physical well-being at baseline there was no significant difference between the groups. The women in the multidisciplinary educational programme increased their physical and functional well-being (P<0.01). The women in traditional follow-up by a physician increased their functional well-being while social/family well-being (P<0.01) decreased over time. There was a statistically significant difference in SOC (P<0.001) in the traditional follow-up by a physician between baseline (mean=74.4, SD=12.4) and the 1-year follow up (mean=67.7, SD=11.4). Thus, women in the traditional follow-up by a physician scored lower in the area of SOC 1 year after diagnosis. A multidisciplinary educational programme may be an alternative to traditional follow-up by a physician after breast cancer surgery, but more research is needed about the financial benefits and effectiveness of such a programme.

  • 12.
    Lindahl Norberg, Annika
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Pöder, Ulrika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Early avoidance of disease- and treatment-related distress predicts post-traumatic stress in parents of children with cancer2011In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 15, no 1, p. 80-84Article in journal (Refereed)
    Abstract [en]

    Purpose of the research: It has previously been demonstrated that parents of children with cancer often exhibit symptoms of post-traumatic stress (PTSS) even though the child's treatment is successfully completed. For the development of interventions we need to identify predictors of PTSS, which are possible to influence. Based on contemporary learning theory, it was hypothesized that early avoidance of disease- and treatment-related distress would predict the development of parental post-traumatic stress after completion of the child's cancer treatment. Methods and sample: Parents' cognitive and behavioural avoidance of disease- and treatment-related distressing stimuli during and immediately after a child's cancer treatment and PTSS one year after the end of treatment was investigated. Data was collected with the PTSD Checklist Civilian Version (PCL-C) from 111 mothers and 109 fathers. Key results: As hypothesized, avoidance during (T1-T3) and immediately after (T4) the child's treatment predicted PTSS among parents one year after (T6) completion of the child's treatment. Moreover, avoidance early on during the child's treatment seemed to be a greater risk factor for PTSS and post-traumatic stress disorder (PTSD) for bereaved than non-bereaved parents. Conclusions: Avoiding reminders of stressful experiences related to a child's cancer disease during and immediately after the child's treatment seems to increase the risk for parents, mothers and fathers alike, of experiencing symptoms of post-traumatic stress later. Interventions based on cognitive behavioural therapy with elimination of avoidance as a central component may be of use in this population.

  • 13. Rollison, Britta
    et al.
    Carlsson, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Evaluation of advanced home care (AHC): the next-of-kin`s experiences.2002In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 6, no 2, p. 100-106Article in journal (Refereed)
    Abstract [en]

    This project studied next-of-kin’s experiences of advanced home care (AHC) during the palliative care and death of a family member. The aim of the study was to evaluate how next of-kin experienced information provided, care, symptom relief, and care-giving burden.

    A self-questionnaire with 24 questions was sent to all next-of-kin (n=82) who had had a family member cared for at home during one year.

    Seventy-five (91%)responded. Next-of-kin were generally more satisfied with emotional support and care than with information provided. Symptom relief was sufficient in most cases. Next-of-kin’s experiences of burden were: 45% felt homebound, 26% felt isolated at home and 51% reported a sleep deficit. Women felt homebound (Po 0.01) to a higher degree than men. However, 87% stated that they would choose AHC again, in a similar situation.

    AHC provided ‘quite good’ symptom relief and ‘good’ emotional support to patients and their next-of-kin during the terminal phase leading to death. Information provided needs to be improved and the situation and needs of informal caregivers requires more assessment.

  • 14.
    Sundberg, Kay
    et al.
    Karolinska Institutet, NVS.
    Lampic, Claudia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Arvidson, Johan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Björk, Olle
    Wettergren, Lena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    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.

  • 15.
    Svanberg, Anncarin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Haematology.
    Öhrn, Kerstin
    Birgegård, Gunnar
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Haematology.
    Caphosol® mouthwash gives no additional protection against oral mucositis compared to cryotherapy alone in stem cell transplantation: A pilot study2015In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 19, p. 50-53Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To investigate if adding Caphosol(®), a mouthwash solution, to oral cryotherapy (OC) further protects against oral mucositis (OM), a toxic painful complication to high dose chemotherapy.

    METHOD: The study was a randomised, controlled, study design. Patients ≥16 years scheduled for allogeneic stem cell transplantation were included consecutively and randomised to experimental group receiving OC combined with Caphosol(®) (n = 20) or control group receiving OC only (n = 20). OC was given from start to end of HDCT. Caphosol(®), from day 0 to day 21.

    RESULT: There were no significant differences regarding age or gender between the groups. Mucositis was assessed with the World Health Organisation (WHO) grading scale. Pain was assessed with a 10 cm visual analogue scale (VAS) from 0 = no pain to 10 = worst imaginable pain. Start and duration of therapy with pain relieving drugs, serum C-reactive protein values, and number of days of hospitalisation were collected from the medical records. Data on OM, oral pain, use of i.v. opioids and total parenteral nutrition were collected during 22 days. There was no significant difference between the groups on OM, oral pain, use of i.v. opioids or TPN between the groups.

    CONCLUSION: The study showed no additional effect of combining Caphosol(®) with OC.

  • 16.
    Swenne, Christine Leo
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Cederholm, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences.
    Gustafsson, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences.
    Arakelian, Erebouni
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Education in Nursing.
    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.

  • 17.
    Thalén-Lindström, Annika
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Larsson, Gunnel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Hellbom, Maria
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Validation of the Distress Thermometer in a Swedish population of oncology patients: accuracy of changes during six months2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 5, p. 625-631Article in journal (Refereed)
    Abstract [en]

    Purpose

    To validate the Swedish version of the Distress Thermometer (DT) against the Hospital Anxiety and Depression Scale (HADS) for screening of distress and to explore how well DT measures changes of distress during six months in a population of heterogeneous oncology patients.

    Methods

    The DT was translated into Swedish according to the forward- and back-translation procedure. HADS total score ≥15 was used as gold standard. Consecutive patients were invited to participate at their first visit to the Oncology department. The HADS and the DT were completed at baseline and after 1, 3 and 6 months.

    Results

    462 baseline and 321 six-month assessments were completed. The patients had a variety of cancer diagnoses (n = 42). Most patients (95%) received active treatment. The DT compared favourably with the HADS. The area under the curve was 0.86 (95% CI, 0.82–0.90). DT ≥ 4 showed a sensitivity of 87%, a specificity of 73%, a positive predictive value (PPV) of 52% and a negative predictive value (NPV) of 95% at baseline. The results from the 1, 3 and 6 months assessments were equivalent baseline results. The DT means changed in the same direction as HADS at all points of assessment. Patients with distress reported statistically significantly more problems in all categories on the associated ‘Problem List’ compared to non-distressed patients.

    Conclusion

    The Swedish version of the DT with a score ≥4 is valid for screening of distress in heterogeneous oncology patients. Its ability to measure changes in distress over time is comparable to HADS.

  • 18.
    von Essen, Louise
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Enskär, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Skolin, Inger
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Important aspects of care and assistance for parents of children, 0-18 years of age, on or off treatment for cancer. Parent and nurse perceptions.2001In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 5, no 4, p. 254-264Article in journal (Refereed)
    Abstract [en]

    Important aspects of care and assistance for parents of children (0-18 years) diagnosed with cancer were investigated. Parents (N=114) and nurses (N=121) were asked the following questions: 'What caring aspects are important for you/the parent to feel cared for?' and 'What help, if any, do you/the parent need outside the hospital?' Nurses were asked to answer for a certain parent. Data were analyzed by content analysis. The following aspects of care were identified: accessible care, clinical competence, continuity, emotional support, information, participation in care, participation in decision making, physical ambience, shift in parenting roles, social competence, temporary assistance, own child is well cared for, and time. Most parents mentioned the importance of social competence and information, most nurses mentioned the importance of information and emotional support. The following aspects of assistance were identified: accessible care, emotional support, financial support, instrumental support, and support to live a normal family/social life. A third of the parents and a fourth of the nurses were of the opinion that the parent did not need any assistance. Most parents who mentioned a need of assistance mentioned a need for emotional and instrumental support. Most nurses mentioned a parental need for emotional support and accessible care.

  • 19.
    Weber, Megan
    et al.
    Ersta Skondal Bracke Univ Coll, Dept Caring Sci, Palliat Res Ctr, Stockholm, Sweden.
    Alvariza, Anette
    Ersta Skondal Bracke Univ Coll, Dept Caring Sci, Palliat Res Ctr, Stockholm, Sweden;Dalen Hosp, Capio Palliat Care, Stockholm, Sweden.
    Kreicbergs, Ulrika
    Ersta Skondal Bracke Univ Coll, Dept Caring Sci, Palliat Res Ctr, Stockholm, Sweden;Karolinska Inst, Dept Women & Childs Hlth, Stockholm, Sweden.
    Sveen, Josefin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital. Ersta Skondal Bracke Univ Coll, Dept Caring Sci, Palliat Res Ctr, Stockholm, Sweden.
    Communication in families with minor children following the loss of a parent to cancer2019In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 39, p. 41-46Article in journal (Refereed)
    Abstract [en]

    Purpose:

    Family communication is a known protective factor for minor children's psychological health following the death of a parent, but there is little research describing communication within such families specifically from the perspective of the children. The purpose of this study was therefore to explore communication in parentally bereaved families from the perspective of the children and surviving parent.

    Methods:

    Interviews with four parents and four children from four families were analyzed using inductive content analysis. Interviews took place in the family's home or at the research center based on the family's wishes 4-14 months after a parent had died. Interviews had an open approach and were based on an interview guide. Each interview was between 60 and 120 min long.

    Results:

    Four categories emerged which were related to family members' experiences of family communication while adjusting to their new circumstances as bereaved: the importance of open and honest communication in the family; new challenges in the family which affect communication; communicating the need for help; and talking about and remembering the deceased parent.

    Conclusions:

    This study illuminates the connection between family communication and adjustments to new circumstances following the death of a parent. The results suggest that the relationship between family adjustment and communication may be circular whereby the family's ability to adjust to their new circumstances is affected by how the family communicates. Similarly, family communication may be affected by the family's coping strategies and ability to adjust to their new circumstances.

  • 20.
    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.
    Östlund, 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.

  • 21. Östlund, Ulrika
    Family nursing in oncology care--do we need a paradigm shift?2010In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 14, no 3, p. 181-2Article in journal (Refereed)
  • 22. Östlund, Ulrika
    et al.
    Brown, Hilary
    Johnston, Bridget
    Dignity conserving care at end-of-life: a narrative review.2012In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 16, no 4, p. 353-67Article in journal (Refereed)
    Abstract [en]

    PURPOSE OF THE RESEARCH: This narrative literature review uses systematic principles to define evidence regarding dignity conserving care at end-of-life from published research on dignity or distress in end-of-life care.

    METHODS: The Chochinov model of dignity was used as a pre-defined framework. Articles were reviewed using thematic analysis to produce a synthesis of findings. A total of 39 articles (26 qualitative and 13 quantitative) fulfilled the inclusion criteria and were found to give suggestions on care actions.

    KEY RESULTS: Several care actions were identified related to all themes contained within the Dignity Model, except aftermath concerns. Examples include: controlling symptoms; listening to the patient and taking them seriously; providing advice concerning how to cope on a daily basis; treating patients as equals and with respect, and; encouraging the family members' presence.

    CONCLUSIONS: Evidence for supporting palliative care services has previously been found to be weak in determining solutions to meet individual's important needs. Drawing together primary research, as in this study, is therefore of importance. The suggested care actions will be used to develop a dignity care pathway for end-of-life care, which is currently being evaluated by the authors. The intention is to provide more valid evidence for the effectiveness of the care actions suggested.

  • 23. Östlund, Ulrika
    et al.
    Gustavsson, Petter
    Fürst, Carl-Johan
    Translation and cultural adaptation of the Piper Fatigue Scale for use in Sweden.2007In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 11, no 2, p. 133-40Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to translate and culturally adapt the revised Piper Fatigue Scale to Swedish. For translation, guidelines for cross-cultural adaptation were used. Two teams independently translated the instrument and two other teams produced back-translations, after which a multidisciplinary committee decided on a Swedish version. In pre-test interviews, ten cancer patients were encouraged to think out loud while completing the Swedish version. Their verbal responses were analysed and used for a second revision. The initial translations varied in words, expressions and grammar, shown in a lack of equivalence to the original instrument after back-translation. In order to establish semantic equivalence, the committee changed some grammatical constructions, and some words were replaced for experiential and conceptual equivalence. When analysing the pre-test, obscurities due to the phrasing of some items were revealed and dealt with in the second revision. This study does not fulfil the process of validation for a translated instrument but offers a sound basis for further accumulation of evidence for validity, and facilitates the choice of an appropriate instrument for studying cancer-related fatigue in Sweden.

1 - 23 of 23
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