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  • 1. Andershed, Birgitta
    et al.
    Ternestedt, Britt-Marie
    Being a close relative of a dying person: Development of the concepts "Involvement in the light and in the dark"2000In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 23, no 2, p. 151-159Article in journal (Refereed)
  • 2. Andershed, Birgitta
    et al.
    Ternestedt, Britt-Marie
    Involvement of relatives in the care of the dying in different care cultures. Involvement in the dark or in the light?1998In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 21, no 2, p. 106-116Article in journal (Refereed)
  • 3. Blomberg, K
    et al.
    Widmark, C
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Törnberg, S
    Tishelman, Carol
    Karolinska Institutet.
    Between youth and adulthood: Focus-group discussion with 30 year-old women abot cervical cancer and its prevention in urban Sweden2011In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 34, no 3, p. 11-20Article in journal (Refereed)
  • 4.
    Browall, Maria
    et al.
    Jönköping University; Göteborgs universitet.
    Pakpour, Amir H.
    Jönköping University; Qazvin University of Medical Sciences, Iran.
    Melin-Johansson, Christina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Henoch, Ingela
    Göteborgs universitet; Angereds närsjukhus.
    Development and Psychometric Evaluation of a New Short Version of the Swedish Frommelt Attitudes Toward Care of the Dying Scale2021In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 44, no 4, p. 305-313Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The Frommelt Attitudes Toward Care of the Dying (FATCOD) is widely used as a measure of attitudes toward care of dying patients. However, poor factor structure and item redundancy have been reported across the literature.

    OBJECTIVE: A short version of the questionnaire is needed, to facilitate effective assessments of the attitudes of those caring for dying patients. The purpose of this study was to develop a FATCOD-Short Form and to secure its psychometric properties.

    INTERVENTIONS/METHODS: Data gathered from 1000 nurses in previous studies were pooled and reanalyzed. Principal components analysis and confirmatory factor analysis were utilized to assess the factor structure of the FATCOD-30. A Rasch model was used to evaluate the measurement functioning of the scale.

    RESULTS: Of the original 30 items, 9 items of FATCOD were chosen for retention in the short form based on the principal components analysis, floor or ceiling effects, interitem correlations, and item-total correlation. All 9 items had good internal reliability. Both confirmatory factor analysis and Rasch analysis supported the unidimensionality of the FATCOD-Short Form.

    CONCLUSIONS: The 9-item FATCOD-Short Form demonstrates evidence of acceptable validity and reliability to identify nurses' attitudes toward caring for dying persons because of its brevity and comprehensive content.

    IMPLICATIONS FOR PRACTICE: When changing curricula in nursing education or implementing new procedures in nursing practice, it is important to have valid instruments to evaluate the results of the change. Such instruments should not be too lengthy or complicated. FATCOD-Short Form is a brief and valid instrument that can be easily used.

  • 5. Ekwall, Ewa
    et al.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sorbe, Bengt
    Recurrence of ovarian cancer-living in limbo2007In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 30, no 4, p. 270-7Article in journal (Refereed)
    Abstract [en]

    Few studies have shed light on women's life situation after being informed of having recurrent ovarian cancer. The present study aimed to elucidate women's experiences of living with this knowledge. Interviews were conducted with 12 women who were undergoing or had just completed chemotherapy, 5 to 10 months after learning of the recurrence. Data were collected and analyzed based on a life world perspective using a descriptive phenomenological method. The women's experiences are described via 3 key constituents: being denied one's future while simultaneously hoping to be able to delay the cancer's advancement, feeling alienated from both oneself and one's surroundings, and being responsible. The key constituents were integrated into the structure "living in limbo." The women lived on the threshold to the unknown. They were preparing themselves both for a continued life and for death. "Living in limbo" can be described as a phase of a health-illness transition characterized by loneliness. The vulnerable position and existential struggle of these women should be focused upon in nursing. The sensitive dialogue is essential in these cases.

  • 6.
    Elmberger, Eva
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Bolund, Christina
    Lützén, Kim
    Men with cancer: Changes in attempts to master the self-image as a man and as a parent2002In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 25, no 6, p. 477-85Article in journal (Refereed)
    Abstract [en]

    Little is known about men's experience of how cancer affects their role as a father. The aim of this study was to gain an understanding of changes in these men's everyday family lives. The study had an interpretative descriptive design, utilizing the concept of transition as a fore structure. Eight men with different types of blood cancer and with children living at home were recruited for the study. Interviews, guided by the main components of the concept of transition, provided qualitative data for analysis. Through the interpretative process, the central theme--change in self-image as a man and as a parent--was generated. This theme consists of the subthemes gaining control, balancing emotions, subjective well-being, being open or not toward the family, and challenges in family life and to family well-being. The time after diagnosis influenced the process of transition. Self-image changes are more obvious shortly after diagnosis. Further study is needed to identify how nurses and other clinicians can assess the family's needs and support the parental role, especially in consideration of the findings of this study.

  • 7.
    Elmberger, Eva
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Bolund, Christina
    Magnusson, Annabella
    Ersta Sköndal University College, Department of Health Care Sciences.
    Lützén, Kim
    Andershed, Birgitta
    Ersta Sköndal University College, Department of palliative care research.
    Being a Mother With Cancer: achieving a Sense of Balance in the Transition Process2008In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 31, no 1, p. 58-66Article in journal (Refereed)
    Abstract [en]

    For women with cancer and with children living at home, the demands of being a good mother while undergoing treatments and recovering from illness have been described as a difficult life process. The aim of this study was to further examine the transition process with focus on women's experience of their responsibility toward their children. Interviews from 2 previous studies investigating the transition process of women with cancer were gathered and were subjected to a qualitative secondary analysis, an analytic expansion of the transition process. The 3 phases in the transition process were used in an interpretive description: ending an earlier life situation, in-between, and new beginning. A main theme that integrated these phases was constructed: "the desire to manage ones responsibility as a parent," within the context of mothering. The women expressed moral concern about not being able to function as "good" mothers yet attempted to find a balance between experiences of exhaustion and other experiences that made it difficult to maintain their responsibility as parents. All of the women included in this study expressed the need for professional support to help them endure treatment procedures as well as to sustain their moral responsibility as good mothers.

  • 8.
    Eriksson, Linda Victoria
    et al.
    Karolinska institutet; Karolinska universitetssjukhuset.
    Holmberg, Katarina
    Karolinska institutet; Sophiahemmet högskola.
    Lundh Hagelin, Carina
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Wengström, Yvonne
    Karolinska institutet; Karolinska universitetssjukhuset.
    Bergkvist, Karin
    Karolinska institutet; Sophiahemmet högskola.
    Winterling, Jeanette
    Karolinska institutet; Karolinska universitetssjukhuset.
    Symptom Burden and Recovery in the First Year After Allogeneic Hematopoietic Stem Cell Transplantation2023In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 46, no 1, p. 77-85Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Patients are affected by various symptoms after allogeneic hematopoietic stem cell transplantation (allo-HSCT) that can affect recovery. Research has mainly focused on symptom occurrence; thus, little is known about patients' overall symptom burden.

    OBJECTIVE: The aim of this study was to examine patient-reported symptom burden in the first year after allo-HSCT and whether a high symptom burden 4 months after allo-HSCT predicts recovery, that is, general health and sick leave, 1 year after transplantation.

    METHODS: Allo-HSCT patients aged 18 to 65 years were included (n = 189). Questionnaire data were collected on admission to the allo-HSCT unit, as well as 4 and 7 months and 1 year after allo-HSCT. Logistic regression evaluated relationships between demographic characteristics, chronic graft-versus-host disease, physical activity, and a high symptom burden.

    RESULTS: Tiredness, susceptibility to infection, disinterest in sex, and physical weakness remained the most frequent symptoms, while distressing symptoms varied during the first year after allo-HSCT.Poor general health 1 year after allo-HSCT was associated with older age, low physical activity, and a high symptom burden 4 months after allo-HSCT. Full-time sick leave 1 year after allo-HSCT was associated with chronic graft-versus-host disease, low physical activity, and a high symptom burden 4 months after transplantation.

    CONCLUSIONS: Experiencing a high symptom burden 4 months after allo-HSCT can affect recovery 1 year after transplantation. Furthermore, low physical activity 4 months after allo-HSCT can predict both general health and sick leave 1 year after transplantation.

    IMPLICATIONS FOR PRACTICE: Repeated symptom assessment, including experienced distress, is central for reducing overall symptom burden and supporting recovery after allo-HSCT.

  • 9.
    Ervik, Bente
    et al.
    University of Tromso.
    Nordoy, Tone
    University of Tromso.
    Asplund, Kenneth
    Mittuniversitetet, University of Tromso, .
    Hit by Waves: Living With Local Advanced or Localized Prostate Cancer Treated With Endocrine Therapy or Under Active Surveillance2010In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 33, no 5, p. 382-389Article in journal (Refereed)
    Abstract [en]

    Background: Previous studies of living with prostate cancer have shown that the illness and the treatment cause physical as well as psychosocial problems.

    Objective: The aim of this study was to illuminate men's experiences living with localized or local advanced prostate cancer when curative treatment such as surgery or radiation therapy is not an option at the time of diagnosis.

    Methods: The study was conducted via qualitative interviews, using a phenomenological hermeneutic approach. Ten men treated with endocrine therapy or under active surveillance were interviewed.

    Results: Being diagnosed with prostate cancer was described as a shock, with different aspects of the illness revealed gradually. The limited amount of time available for meeting with health care providers contributed to patients' feelings of being left alone with difficulty getting information and help. Sexual and urinary problems were perceived as a threat to their manhood. The spouses provided the closest everyday support.

    Conclusion: The life situation of these patients can be understood as living in a "state of readiness," expecting something to happen regarding their illness, and not always knowing where to get help. Implications for Practice: The results confirm existing knowledge of patient's experiences in living with prostate cancer regarding the initial shock perceived by the patients, the bodily alterations, and the important role of their spouses. Nurses, as well as general practitioners, must play a more active role in follow-up to ensure that the men and their spouses receive better help and support.

  • 10.
    Ervik, Bente
    et al.
    University of Tromsø, Norway; University Hospital of North Norway, Tromsø, Norway.
    Nordøy, Tone
    University of Tromsø, Norway; University Hospital of North Norway, Tromsø, Norway.
    Asplund, Kenneth
    University of Tromsø, Norway; Department of Health Science, Mid Sweden University, Sundsvall.
    In the middle and on the sideline: The experience of spouses of men with prostate cancer2013In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 36, no 3, p. 7-14Article in journal (Refereed)
    Abstract [en]

    Background: Spouses play an important role in how well patients with prostate cancer manage their illness. Whereas earlier studies mostly included both patients and spouses, this study focuses on the spouses' experiences during the course of the illness.

    Objective: The objective of this study was to explore how the daily life of female spouses is affected by their husband's prostate cancer.

    Methods: Qualitative interviews were conducted with 9 spouses of men receiving potential curative treatment for prostate cancer.

    Results: Prostate cancer in men had significant impact on spouses' everyday life. The results showed that spouses strived to achieve a balance between focusing on their own needs and meeting their husbands' needs along the course of the illness. Four themes emerged: strong and optimistic versus vulnerable and overstrained, maintaining the partner's sense of manhood, being on the sideline, and the need for relationships outside the immediate family.

    Conclusion: Being a spouse to a man with prostate cancer is emotionally and practically demanding. There is a danger of the spouses suppressing their own needs in the process of supporting their husbands. Those spouses living in the situation over a period of years expressed fatigue and a shift in focus from their husbands' needs to their own needs for support.

    Implications för practice: Healthcare providers should provide support for spouses during the course of the illness, encourage spouses to participate in seminars for couples living with prostate cancer, and be aware of the potential for situational fatigue in spouses many years after the diagnosis.

  • 11. Henoch, Ingela
    et al.
    Browall, Maria
    Melin-Johansson, Christina
    Mittuniversitetet.
    Danielson, Ella
    Udo, Camilla
    Johansson Sundler, Annelie
    Björk, Maria
    Ek, Kristina
    Hammarlund, Kina
    Bergh, Ingrid
    Strang, Susann
    The Swedish version of the Frommelt Attitude Toward Care of the Dying scale: aspects of validity and factors influencing nurses' and nursing students' attitudes.2014In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 37, no 1, p. E1-11Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Nurses' attitudes toward caring for dying persons need to be explored. The Frommelt Attitude Toward Care of the Dying (FATCOD) scale has not previously been used in Swedish language.

    OBJECTIVES: The objectives of this study were to compare FATCOD scores among Swedish nurses and nursing students with those from other languages, to explore the existence of 2 subscales, and to evaluate influences of experiences on attitudes toward care of dying patients.

    METHODS: A descriptive, cross-sectional, and predictive design was used. The FATCOD scores of Swedish nurses from hospice, oncology, surgery clinics, and palliative home care and nursing students were compared with published scores from the United States, Israel, and Japan. Descriptive statistics, t tests, and factor and regression analyses were used.

    RESULTS: The sample consisted of 213 persons: 71 registered nurses, 42 enrolled nurses, and 100 nursing students. Swedish FATCOD mean scores did not differ from published means from the United States and Israel, but were significantly more positive than Japanese means. In line with Japanese studies, factor analyses yielded a 2-factor solution. Total FATCOD and subscales had low Cronbach α's. Hospice and palliative team nurses were more positive than oncology and surgery nurses to care for dying patients.

    CONCLUSIONS: Although our results suggest that the Swedish FATCOD may comprise 2 distinct scales, the total scale may be the most adequate and applicable for use in Sweden. Professional experience was associated with nurses' attitudes toward caring for dying patients.

    IMPLICATION FOR PRACTICE: Care culture might influence nurses' attitudes toward caring for dying patients; the benefits of education need to be explored.

  • 12.
    Holm, Maja
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Årestedt, Kristofer
    Linköpings universitet; Linnéuniversitetet.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Wengström, Yvonne
    Karolinska Institutet; Örebro universitet.
    Öhlen, Joakim
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Alvariza, Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet; Capio Dalen sjukhus, Stockholm.
    Characteristics of the Family Caregivers Who Did Not Benefit From a Successful Psychoeducational Group Intervention During Palliative Cancer Care: A Prospective Correlational Study.2017In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 40, no 1, p. 76-83Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Although there has been a steady increase in intervention studies aimed toward supporting family caregivers in palliative cancer care, they often report modest effect sizes and there is a lack of knowledge about possible barriers to intervention effectiveness.

    OBJECTIVE: The aim of this study is to explore the characteristics of family caregivers who did not benefit from a successful psychoeducational group intervention compared with the characteristics of those who did.

    INTERVENTION/METHODS: A psychoeducational intervention for family caregivers was delivered at 10 palliative settings in Sweden. Questionnaires were used to collect data at baseline and following the intervention. The Preparedness for Caregiving Scale was the main outcome for the study and was used to decide whether or not the family caregiver had benefited from the intervention (Preparedness for Caregiving Scale difference score ≤ 0 vs ≥ 1).

    RESULTS: A total of 82 family caregivers completed the intervention and follow-up. Caregivers who did not benefit from the intervention had significantly higher ratings of their preparedness and competence for caregiving and their health at baseline compared with the group who benefited. They also experienced lower levels of environmental burden and a trend toward fewer symptoms of depression.

    CONCLUSIONS: Family caregivers who did not benefit from the intervention tended to be less vulnerable at baseline. Hence, the potential to improve their ratings was smaller than for the group who did benefit.

    IMPLICATIONS FOR PRACTICE: Determining family caregivers in cancer and palliative care who are more likely to benefit from an intervention needs to be explored further in research.

  • 13.
    Johansson, Christina Melin
    et al.
    Göteborgs universitet.
    Axelsson, Bertil
    Danielson, Ella
    Living with incurable cancer at the end of life--patients' perceptions on quality of life.2006In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 29, no 5, p. 391-9Article in journal (Refereed)
    Abstract [en]

    This study describes incurably ill cancer patients' perceptions of the quality of life at the end of life. Purposeful sampling was used to get as comprehensive descriptions as possible about quality of life. Five patients participated in repeated focus groups. Content analysis showed that the patients emphasized what they could perform and enjoy in daily life, not their shortcomings. Five themes were developed: "valuing ordinariness in life," "maintaining a positive life," "alleviated suffering," "significant relations," and "managing life when ill." The themes describe that the patients could participate in daily and social life despite cancer. Relation with family and palliative team deepened during the progress of illness in such that a resonance developed in communication. Other important findings were that patients' memories helped them to maintain a positive life and that the patients used individual strategies to relieve pain by emotional and physical distractions. For the patients, managing life as ill meant taking actions with creative thinking in solving problems as a way to cope and achieve quality of life. These positive findings from the focus groups have led to continued research regarding how patients with incurable cancer perceive quality of life.

  • 14.
    Lövgren, Malin
    et al.
    Karolinska Institutet, Högskolan Dalarna.
    Hamberg, Katarina
    Umeå universitet.
    Tishelman, Carol
    Stockholms Sjukhem, Karolinska institutet, University of Manchester, Storbritannien.
    Clock time and embodied time experienced by patients with inoperable lung cancer.2010In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 33, no 1, p. 55-63Article in journal (Refereed)
    Abstract [en]

    In this study, we explore how patients with inoperable lung cancer (LC) discuss their experiences of time, based on content analysis of open interviews with 35 patients 1 year after diagnosis, using Davies' distinction between "clock time" and "embodied time" as sensitizing concepts. Two interrelated themes were derived: (1) aspects related to the healthcare system, with 3 subthemes: waiting times in the healthcare system, limited time for patient-professional contact, and limited time for coordination of services, and (2) existential aspects, with subthemes: the future with LC and managing an uncertain and finite life with LC. Time could be experienced as problematic for these patients, when limited or lacking or through long periods of waiting, especially when these periods occurred without adequate preparation or information. This contributed to exacerbation of these patients' existing sense of uncertainty, their perception of care as impersonal and insecure, and their need to remain alert and act on their own behalf. Awareness of the seriousness of their disease and the prospect of a limited lifetime was described as increasing uncertainty about dying and fear of certain death. People also described efforts to constructively deal with their situation by reprioritizing their remaining time, having increased appreciation of some aspects of daily life, and living consciously in the present. This analysis suggests a collision between clock time, which steers the healthcare system, and embodied time, as experienced by individuals. Greater attention to psychosocial needs is suggested as one means of positively affecting patients' experiences of time and uncertainty.

  • 15.
    Schildmeijer, Kristina
    et al.
    Linnéuniversitetet.
    Frykholm, Oscar
    Karolinska institutet.
    Kneck, Åsa
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Ekstedt, Mirjam
    Linnéuniversitetet; Karolinska institutet.
    Not a Straight Line: patients' Experiences of Prostate Cancer and Their Journey Through the Healthcare System2019In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 42, no 1, p. E36-E43Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Cancer and its treatment can severely impact quality of life, giving rise to complex needs with respect to follow-up care. To support patient needs and increase efficiency of care with limited resources, the Swedish government has launched national reforms to redesign cancer care pathways.

    OBJECTIVE: The aim of this study was to explore how prostate cancer patients experience their journey through the healthcare system when their care is provided according to the standardized care pathway, as described in healthcare policy documents.

    METHODS: A qualitative, descriptive approach with individual interviews was used. A template of a standardized prostate cancer pathway, created together with healthcare professionals, was used during interviews. Fourteen interviews were conducted with prostate cancer patients all operated on at a midsized hospital in southeast Sweden between October 2015 and April 2016. The interviews were analyzed with qualitative content analysis and illustrated in a patient journey map.

    RESULTS: We identified an overall theme, "walking a tightrope," consisting of 4 categories: "waiting," "becoming familiar with a troublesome body," "adjusting to a different life," and "information challenges."

    CONCLUSIONS: The clinical implementation of the standardized care pathway is described as a straight path through care, but patients described their experiences as walking a tightrope. Lack of information, especially about cancer treatment and its adverse effects, was the most common experience.

    IMPLICATIONS FOR PRACTICE: Our findings indicate areas where further healthcare tools could improve patient experiences of cancer treatment. This could include offering individualized information and tools to increase patient empowerment, as well as patient/caregiver collaboration (co-care).

  • 16.
    Öhlén, Joakim
    et al.
    Göteborgs universitet.
    Bengtsson, J
    Skott, C
    Segesten, K
    Being in a Lived Retreat - Embodied Meaning of Alleviated Suffering2002In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 25, no 4, p. 318-25Article in journal (Refereed)
  • 17.
    Öhlén, Joakim
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Institute of Health Care Sciences, Sahlgrenska Academy at the University of Gothenburg; University of Gothenburg Centre for Person-Centred Care.
    Wallengren Gustafsson, C
    Institute of Health Care Sciences, Sahlgrenska Academy at the University of Gothenburg.
    Friberg, Febe
    Institute of Health Care Sciences, Sahlgrenska Academy at the University of Gothenburg; University of Gothenburg Centre for Person-Centred Care; Department of Health, Faculty of Social Sciences, University of Stavanger, Norway.
    Making sense of receiving palliative treatment: Its significance to palliative cancer care communication and information provision2013In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 36, no 4, p. 265-73Article in journal (Refereed)
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