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  • 1.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Capio Palliativ vård Dalen.
    Holm, Maja
    Sophiahemmet högskola.
    Benkel, Inger
    Göteborgs universitet.
    Norinder, Maria
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Ewing, Gail
    Storbritannien.
    Grande, Gunn
    Storbritannien.
    Håkanson, Cecilia
    Göteborgs universitet.
    Öhlen, Joakim
    Göteborgs universitet.
    Årestedt, Kristofer
    Linnéuniversitetet, Landstinget i Kalmar län.
    A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool.2018In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 35, p. 1-8, article id S1462-3889(18)30058-9Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context.

    METHODS: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated.

    RESULTS: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75).

    CONCLUSIONS: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care.

  • 2. Carlsson, E
    et al.
    Pettersson, M
    Hydén, LC
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC. Göteborgs universitet.
    Friberg, Febe
    University of Stavanger.
    Structure and content in consultations with patients undergoing surgery for colorectal cancer.2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 6, p. 820-826Article in journal (Refereed)
    Abstract [en]

    Purpose: To explore the structure and content of pre-planned consultations as part of the care and treatment of patients undergoing surgery for colorectal cancer. Methods: The study was based on 50 transcripts of audio-recorded pre-planned consultations between seven patients and 36 healthcare professionals from the time of diagnosis, pre-operative consultation, discharge consultation and pathology report in a colorectal unit. Results: The spread of consultation time between professions was considerable. Total mean consultation time for patients during the care process (7 consultations/patient) was 111 mm (range 83-191). The mean consultation time for surgeons was 18 min (7-40), anaesthesiologists 12 min (5-18) and nurses 14 min (5-49). Patients took up 40% of the word space, healthcare professionals used 59% and significant others 1%. Word space changed in such a way that the patient became more active towards the final consultation. Neither during the diagnosis consultation nor during the pre-operative consultation did the patients meet the operating surgeon. Six major subjects emerged: general health, diagnosis, surgical procedure, pre-operative preparations, recovery and treatment and follow-up. Conclusions: There is a need for clearer structure in the consultations. Most consultations lacked a clear introduction to the subject of the conversation. The study makes it possible to develop methods and structure for supporting conversations in which the patient is given space to help with the difficult issues present after undergoing surgery for colorectal cancer. The study also contributes to providing knowledge of how to organise surgical consultations in order to optimise person-centeredness, teamwork and clinical efficiency.

  • 3.
    Carlsson, E
    et al.
    Göteborgs universitet.
    Pettersson, M
    Göteborgs universitet.
    Öhlén, J
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Sawatzky, R
    Kanada.
    Smith, F
    Göteborgs universitet.
    Friberg, F
    Göteborgs universitet, Norge.
    Development and validation of the preparedness for Colorectal Cancer Surgery Questionnaire: PCSQ-pre 24.2016In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 25, p. 24-32, article id S1462-3889(16)30081-3Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The aims of the study were to develop and psychometrically evaluate a patient-reported outcome instrument for the measurement of preoperative preparedness in patients undergoing surgery for colorectal cancer.

    METHODS: This study was conducted in two stages: a) instrument development (item generation, construction of items and domains), empirical verification and b) instrument evaluation. A questionnaire with 28 items measuring preparedness for surgery was developed covering four domains and was tested for content validity with an expert panel and with patients. Psychometric testing of the questionnaire was conducted on 240 patients undergoing elective surgery for colorectal cancer.

    RESULTS: The scale content validity index of the preparedness items was 0.97. The final version consisted of 24 items measuring 4 subscales: Searching for and making use of information, Understanding and involvement in the care process, Making sense of the recovery process and Support and access to medical care. Confirmatory factor analysis revealed good model fit with standardized factor loadings ranging from 0.58 to 0.97. A well-fitting second-order factor model provided support for a total preparedness score with second-order factor loadings ranging from 0.75 to 0.93. The ordinal alpha values of the four latent factors ranged from 0.92 to 0.96, indicating good internal consistency. The polyserial correlations with the total score were 0.64 (p < 0.01) for the overall preparedness question and 0.37 (p < 0.01) for overall well-being.

    CONCLUSION: The Swedish Preparedness for Colorectal Cancer Surgery Questionnaire for use in the preoperative phase demonstrated good psychometric properties based on a sound conceptualization of preparedness.

  • 4.
    Ekwall, Eva
    et al.
    Örebro universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet, Stiftelsen Stockholms sjukhem.
    Sorbe, Bengt
    Örebro universitet.
    Hällgren Graneheim, Ulla
    Umeå universitet.
    Patients' perceptions of communication with the health care team during chemotherapy for the first recurrence of ovarian cancer2011In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 15, no 1, p. 53-58Article in journal (Refereed)
    Abstract [en]

    AIM: The aim of this study was to explore what women with recurrent ovarian cancer perceived as important in their communication with the health care team.

    METHOD: Interviews were conducted with 12 women at the end of chemotherapy treatment at a department of gynecological oncology in central Sweden. The interviews were subjected to qualitative content analysis.

    RESULTS: The findings stress the importance for the health care team to offer each woman the opportunity for support in becoming familiar with the disease. This theme of becoming familiar with the disease is underpinned by four sub-themes: being acknowledged as a unique person, getting help to make sense of information regarding the disease and its treatment, having the opportunity to be involved and to share responsibility, and feeling confident that medical expertise was adequate. Becoming familiar with the disease was expressed as a process of understanding and assimilating the whole new situation. To achieve familiarity, the women needed help from the health care team to make sense of the information they received. They stressed the importance of being able to influence encounters with health professionals, in accordance with their own perspectives. Being acknowledged as a unique person was a prerequisite to achieve familiarity. Also important to the women was having the opportunity to share responsibility for their care and lives with someone from the health care team.

    CONCLUSION: Helping women with recurrence of ovarian cancer attain a sense of familiarity with the disease should be an important priority for health care providers.

  • 5.
    Ekwall, Eva
    et al.
    Örebro universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Sorbe, Bengt
    Örebro universitet.
    Sunvisson, Helena
    Örebro universitet.
    Lived experiences of women with recurring ovarian cancer.2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 1, p. 104-109Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Women with recurring ovarian cancer are living longer, due to advances in treatment options. They are now often outpatients, experiencing rapid encounters on treatment days. Whether this shift in care meets women's needs has been scarcely explored scientifically.

    PURPOSE OF THE STUDY: This study aimed to illuminate the phenomenon of living with recurring ovarian cancer as experienced by women in that condition.

    METHODS AND SAMPLE: A descriptive phenomenological method was used. Eight open-ended interviews with four women were performed approximately three and five years after the first recurrence of ovarian cancer. During these years the women had repeated clinically and radiologically verified recurrence requiring chemotherapy.

    KEY RESULTS: The phenomenon of living with recurring ovarian cancer meant that the women felt forced to pay attention to the failing body in order to avoid a potential breakdown. The growing limitation of their intermittent strength meant that strength had to be captured and protected. Sharing their lives with others was difficult, due to the different living conditions. The women found no space to mediate their experiences, either in close relationships or with health care professionals. But, the circumstances they lived under also generated a gratitude for the unexpected extra time.

    CONCLUSIONS: The findings revealed that the four women were grateful to live a while longer, but needed to share their state of being. The findings are indeed directed to health care professionals, who need to provide a more patient-centred care to meet the women's needs.

  • 6.
    Ervik, Bente
    et al.
    University of Tromsø.
    Asplund, Kenneth
    University of Tromsø, Mittuniversitetet.
    Dealing with a troublesome body: A qualitative interview study of men’s experiences living with prostate cancer treated with endocrine therapy2012In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 16, no 2, p. 103-108Article in journal (Refereed)
    Abstract [en]

    Purpose: Endocrine therapy for prostate cancer causes substantial side effects, and previous studies have focused on the impacts on sexuality and masculinity. Little is known about how men experience bodily alterations in everyday life through the course of the prostate cancer and treatment. The aim of this study was to show how men with prostate cancer experience bodily changes and how these alterations influence daily life.

    Method: The study was conducted via qualitative interviews with a phenomenological hermeneutic approach. We interviewed ten men (aged 58-83) with prostate cancer who received endocrine therapy as the primary treatment method.

    Results: The results showed that five themes were important for the men’s experiences of their bodily alterations throughout the course of the illness: "something is ’wrong’", "when the body becomes troublesome", "to be well or to be ill", "dealing with the alterations" and "to talk about cancer and the intimate details" Initially, the shock of receiving a cancer diagnosis and the physical changes in their bodies were at the forefront of many patients’ minds. Eventually, the impact of the side effects became more evident, which caused problems in everyday life. Yet, the men were able to reflect on the impact of treatment on their everyday lives.

    Conclusion: This study showed that hormone treatment has a significant influence, both directly and indirectly, on the bodies of prostate cancer patients. The experiences of men with prostate cancer may lead to feelings of loss of identity on an existential level. © 2011 Elsevier Ltd.

  • 7.
    Henoch, Ingela
    et al.
    Göteborgs universitet.
    Lövgren, Malin
    Högskolan Dalarna.
    The influence of symptom clusters and the most distressing concerns regarding quality of life among patients with inoperable lung cancer.2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 3, p. 236-241Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To explore the influence of symptom clusters and the most distressing concerns on global rating of quality of life (QoL) among patients with inoperable lung cancer (LC) over a three-month period following diagnosis.

    METHODS: Data were derived from a longitudinal study dealing with the symptom experiences of 400 patients with LC at three time points: close to diagnosis and one and three months later. The symptom clusters were derived from a QoL questionnaire using factor analysis, which resulted in three clusters: the Respiratory cluster, the Pain cluster and the Mood cluster. The most distressing concerns were derived from responses to a free listing question ('What is most distressing at present') and were categorised under three dimensions: Bodily distress, Life situation with LC and Iatrogenic distress. Cross-sectional, multivariate regression analyses with QoL as a dependent variable were used to determine predictors (symptom clusters and most distressing concerns) at the three time points.

    RESULTS: All three symptom clusters predicted QoL at each time point. Close to diagnosis, none of the dimensions of most distressing concerns predicted QoL, while the dimension Bodily distress was a significant predictor of QoL after one month. The Life situation with LC dimension was a significant predictor of QoL three months after diagnosis.

    CONCLUSIONS: Symptom clusters are important to LC patients' QoL and need to be acknowledged by healthcare professionals. The present study shows the importance of patients' descriptions of key concerns, which vary from diagnosis onwards, and urges healthcare professionals to be vigilant to such changes.

  • 8.
    Holm, Maja
    et al.
    Sophiahemmet högskola.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio palliativ vård Dalens sjukhus Stockholm, Karolinska institutet.
    Fürst, Carl-Johan
    Lunds universitet.
    Wengström, Yvonne
    Karolinska institutet.
    Årestedt, Kristofer
    Linnéuniversitetet.
    Öhlen, Joakim
    Göteborgs universitet.
    Goliath, Ida
    Karolinska institutet.
    Recruiting participants to a randomized controlled trial testing an intervention in palliative cancer care - The perspectives of health care professionals.2017In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 31, p. 6-11, article id S1462-3889(17)30205-3Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The recruitment of participants to randomized controlled trials (RCTs) in palliative cancer care by health care professionals is often unsuccessful, which could result in failure to achieve study power. The purpose of this paper is to describe how health care professionals experienced recruiting patients and family caregivers to an RCT in palliative cancer care.

    METHODS: The study had a qualitative explorative design. Ten palliative home care settings were involved in the RCT and data were generated through focus group discussions and interviews with health care professionals who were responsible for the recruitment. The transcripts were analyzed with interpretive descriptive principles.

    RESULTS: The experiences of the health care professionals reveal that communicating the RCT-design to patients and family caregivers was a challenging part of the recruitment but was considered a process of learning over time. The delicate situation that participants were living under added to the challenge and health care professionals believed that the randomized design was contrary to their normal approach to always offer the best possible support.

    CONCLUSIONS: The results contribute valuable knowledge for future trials in palliative cancer care. To promote successful recruitment, health care professionals may be in need of more training to improve their communication skills and it may be necessary to consider other research designs than the RCT.

  • 9. Kenne Sarenmalm, E
    et al.
    Odén, A
    Öhlén, Joakim
    Göteborgs universitet.
    Gaston-Johansson, F
    Holmberg, S
    Bernhard, J
    Changes in health-related quality of life may predict recurrent breast cancer2009In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 13, no 5, p. 323-9Article in journal (Refereed)
  • 10.
    Lundberg, Tina
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Forinder, Ulla
    Karolinska institutet, Högskolan i Gävle.
    Olsson, Mariann
    Karolinska institutet, Stiftelsen Stockholms sjukhem.
    Fürst, Carl Johan
    Lunds universitet.
    Årestedt, Kristofer
    Linnéuniversitetet, Linköpings universitet, Landstinget i Kalmar län.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    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. 33-38, article id S1462-3889(18)30069-3Article 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.

  • 11.
    Lövgren, Malin
    et al.
    Karolinska institutet, Högskolan Dalarna, Stockholms Sjukhem.
    Wilde-Larsson, B
    Karlstad universitet, Hedmark University College, Norway.
    Hök, J
    Karolinska institutet.
    Leveälahti, H
    Stockholms Sjukhem.
    Tishelman, C
    Karolinska institutet, Stockholms Sjukhem.
    Push or pull?: Relationships between lung cancer patients' perceptions of quality of care and use of complementary and alternative medicine2011In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 15, no 4, p. 311-317Article in journal (Refereed)
    Abstract [en]

    PURPOSE: This study examines CAM-use among patients with LC in Sweden, associations between QoC and CAM-use among these patients, and reported aspects of LC-care perceived as particularly positive and negative by patients, as well as suggestions for improving QoC.

    METHODS: Survey data from 94 patient members of the Swedish LC patient organization about CAM-use and QoC as measured by the instrument "Quality from the patient's perspective" were analyzed.

    RESULTS: Fifty (53%) LC-patients used CAM, with 40 of the CAM-users reporting that CAM helped them. The most common CAMs used were dietary supplements and natural remedies, followed by prayer. Significantly more patients reported using prayer and meditation for cure than was the case for other types of CAM used. Less than half the CAM-users reported having spoken with staff from the biomedical health care system about their CAM-use. Patients provided numerous suggestions for improving LC-care in a variety of areas, aiming at a more effective and cohesive care trajectory. No differences in QoC were found between CAM-users and non-CAM-users, but differences in CAM-use i.e. type of CAM, reasons for using CAM, and CAM-provider consulted could be associated with different experiences of care.

    CONCLUSIONS: It is important to recognize that CAM-users are not a homogeneous group but might seek different types of CAMs and CAM-providers in different situations depending on experiences of care.

  • 12.
    Ventura, F
    et al.
    University of Gothenburg, Sahlgrenska Academy, Institute of Health & Care Sciences.
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Koinberg, I
    Göteborgs universitet, Inst vårdvetenskap och hälsa, Sahlgrenska akademin.
    An integrative review of supportive e-health programs in cancer care2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 4, p. 498-507Article in journal (Refereed)
  • 13. Westman, B
    et al.
    Bergenmar, M
    Andersson, Lars
    Ersta Sköndal University College, Department of Health Care Sciences.
    Life, illness and death—Existential reflections of a Swedish sample of patients who have undergone curative treatment for breast or prostatic cancer2006In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 10, no 3, p. 169-176Article in journal (Refereed)
  • 14.
    Öhlén, Joakim
    et al.
    Göteborgs universitet.
    Carling Elofsson, L
    Hydén, L-C
    Friberg, F
    Exploration of communicative patterns of consultation in palliative cancer care2008In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 12, no 1, p. 44-52Article in journal (Refereed)
  • 15.
    Öhlén, Joakim
    et al.
    Göteborgs universitet.
    Holm, A-K
    Karlsson, B
    Ahlberg, K
    Evaluation of a counselling program in cancer care2005In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 9, p. 64-73Article in journal (Refereed)
1 - 15 of 15
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