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  • 1.
    Bylund-Grenklo, Tove
    et al.
    Karolinska Institutet; Linnéuniversitetet.
    Fürst, C J
    Lunds universitet.
    Nyberg, T
    Karolinska Institutet.
    Steineck, G
    Karolinska Institutet; Göteborgs universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Unresolved grief and its consequences: A nationwide follow-up of teenage loss of a parent to cancer 6-9 years earlier2016In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, no 7, p. 3095-3103Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The early loss of a parent is a tragedy and a serious life event. This study investigated grief resolution and morbidity in cancer-bereaved teenagers 6 to 9 years after the loss of a parent to cancer.

    METHODS: In a nationwide population-based study of 622 of 851 (73 %) youths who as teenagers 6 to 9 years earlier had lost a parent to cancer, we explored the magnitude of unresolved grief and its association with psychological and physiological morbidity. Participants answered a study-specific anonymous questionnaire including questions about if they had worked through their grief and about their current health.

    RESULTS: Six to nine years post-loss 49 % reported unresolved grief (8 % no and 41 % a little grief resolution). They had, in comparison with youths reporting resolved grief, statistically significantly elevated risks, e.g. for insomnia (sons' relative risk (RR) 2.3, 95 % CI 1.3-4.0; daughters' RR 1.7, 95 % CI 1.1-2.7), fatigue (sons' RR 1.8, 95 % CI 1.3-2.5; daughters' RR 1.4, 95 % CI 1.1-1.7) and moderate to severe depression, i.e. score >9, PHQ-9 (sons' RR 3.6, 95 % CI 1.4-8.8; daughters' RR 1.8, 95 % CI 1.1-3.1). Associations remained for insomnia in sons, exhaustion in daughters and fatigue in both sons and daughters when depression, negative intrusive thoughts and avoiding reminders of the parents' disease or death were included in a model.

    CONCLUSIONS: Approximately half of cancer-bereaved youth report no or little grief resolution 6 to 9 years post-loss, which is associated with fatigue, sleeping problems and depressive symptoms.

  • 2.
    Engvall, Gunn
    et al.
    Uppsala universitet.
    Skolin, Inger
    Karolinska institutet.
    Mattsson, Elisabet
    Uppsala universitet.
    Hedström, Mariann
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Are nurses and physicians able to assess which strategies adolescents recently diagnosed with cancer use to cope with disease- and treatment-related distress?2011In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 19, no 5, p. 605-611Article in journal (Refereed)
    Abstract [en]

    PURPOSE: It was examined whether nurses and physicians are able to identify whether adolescents with cancer have used certain strategies to cope with disease- and treatment-related distress. METHOD: Adolescents (N = 48) were asked whether they had used a number of strategies to cope with disease- and treatment-related distress and, if so, the extent to which they had used these. Nurses and physicians were asked to answer the same questions on behalf of a certain adolescent. RESULTS: Nurses overestimate the extent to which adolescents use strategies to cope with distress, and neither nurses nor physicians, physicians somewhat more, are successful in identifying the extent to which certain adolescents use strategies. CONCLUSION: Health-care staff’s possibilities to assess how patients cope with disease- and treatment-related distress should be increased. A number of changes in education and the organization of clinical care, especially with regard to assessing patients’ needs, are suggested.

  • 3.
    Godskesen, Tove
    et al.
    Uppsala universitet.
    Nygren, Peter
    Uppsala universitet.
    Nordin, Karin
    Uppsala universitet, Universitetet i Bergen.
    Hansson, Mats
    Uppsala universitet.
    Kihlbom, Ulrik
    Uppsala universitet.
    Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation2013In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, no 11, p. 3137-3142Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: In cancer, phase 1 clinical trials on new drugs mostly involve patients with advanced disease that is unresponsive to standard therapy. The purpose of this study was to explore the difficult ethical problems related to patient information and motives for participation in such trials.

    METHOD: A descriptive and explorative qualitative design was used. Fourteen cancer patients from three different phase 1 trials in end-stage cancer were interviewed. The interviews were analysed using qualitative content analysis.

    RESULTS: The patients expressed unrealistic expectations of therapeutic benefit and inadequate understanding of the trials' purpose, so-called therapeutic misconception. However, they reported a positive attitude towards participation. Thus, the patients valued the close and unique medical and psychological attention they received by participating. Participation also made them feel unique and notable.

    CONCLUSIONS: Patients with end-stage cancer participating in phase 1 clinical trials are unaware of the very small potential for treatment benefit and the risk of harm. Trial participation may offer hope and social-emotional support and a strategy for coping with the emotional stress associated with advanced cancer and may, consequently, improve emotional well-being.

  • 4.
    Kisch, Annika M
    et al.
    Skånes universitetssjukhus; Lunds universitet.
    Bergkvist, Karin
    Karolinska institutet; Sophiahemmet högskola.
    Adalsteinsdóttir, Sólveig
    Karolinska universitetssjukhuset.
    Wendt, Christel
    Skånes universitetssjukhus.
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Winterling, Jeanette
    Karolinska institutet; Karolinska universitetssjukhuset.
    A person-centred intervention remotely targeting family caregivers' support needs in the context of allogeneic hematopoietic stem cell transplantation: A feasibility study2022In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 30, no 11, p. 9039-9047Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Allogeneic hematopoietic stem cell transplantation (HSCT) is an intensive curative treatment that increases family caregivers' burden. The aim of this study was to explore the feasibility of remotely assessing and addressing family caregivers' support needs in terms of demand and acceptability using the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the HSCT context.

    METHODS: CSNAT-I consists of an evidence-based tool and a five-stage person-centred process. The intervention was performed remotely by two designated nurses from two HSCT centres, one before HSCT and the second 6 weeks after (November 2020 to March 2021). To capture the experiences of using CSNAT-I, interviews were conducted with family caregivers and reflections were gathered from the designated nurses.

    RESULTS: Of 34 eligible family caregivers, 27 participated, 70% were partners and the rest children, siblings or other relatives. The main support needs were knowing what to expect in the future and dealing with your feelings and worries. The most frequent support actions according to CSNAT-I were psychological support and medical information. Four categories summarised family caregivers and designated nurses' experiences: CSNAT-I was relevant and became an eye opener; nurses' experiences were important for enabling trustful CSNAT-I conversations; CSNAT-I provided family caregivers with support and a sense of security; and CSNAT-I gave family caregivers insight and enabled change.

    CONCLUSION: Both family caregivers and designated nurses experienced that using CSNAT-I in an HSCT context was feasible and had the potential to provide valuable support for most of the participating family caregivers.

  • 5.
    Kisch, Annika M.
    et al.
    Lunds universitet.
    Bergkvist, Karin
    Karolinska institutet; Sophiahemmet högskola.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Årestedt, Kristofer
    Linnéuniversitetet; Forskningssektionen, Region Kalmar län.
    Winterling, Jeanette
    Karolinska institutet; Karolinska universitetssjukhuset.
    Family caregivers' support needs during allo-HSCT: a longitudinal study2020In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 29, no 6, p. 3347-3356Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The study aimed to explore family caregivers' support needs prior to allo-HSCT, how these change over time and whether they are associated with demographic factors and caregiver outcome.

    METHODS: This longitudinal repeated measure study included 87 family caregivers of allo-HSCT recipients: 63% were partners, 74% women, 65% lived with the recipient, and their mean age was 54 years. They completed the 14-item Carer Support Needs Assessment Tool (CSNAT) and caregiver outcome measures (caregiver burden, anxiety, depression, preparedness for caregiving and general health) prior to allo-HSCT and 3, 6 and 16 weeks later.

    RESULTS: The two top support needs prior to allo-HSCT were 'knowing what to expect in the future' (79%) and 'dealing with your own feelings' (70%). Several support needs were associated with younger age and not being a partner, while higher needs implied worse caregiver outcomes for at least one of the outcomes prior to transplantation. Most support needs remained the same at the last follow-up.

    CONCLUSION: The findings that high support needs are often associated with worse caregiver outcomes and most support needs do not diminish over time indicate that more attention should be placed on the situation of family caregivers.

  • 6.
    Lashani, Fatemeh
    et al.
    Shahid Beheshti University of Medical Sciences, Iran.
    Rohani, Camelia
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Shahid Beheshti University of Medical Sciences, Iran.
    Estebsari, Fatemeh
    Shahid Beheshti University of Medical Sciences, Iran.
    Nasiri, Malihe
    Shahid Beheshti University of Medical Sciences, Iran.
    Exploring the relationship between sexual function, sense of coherence, and well-being in a sample of Iranian breast cancer survivors2021In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 29, no 6, p. 3191-3199Article in journal (Refereed)
    Abstract [en]

    PURPOSE: This study was aimed at exploring the type and role of relationships between sexual function, sense of coherence (SOC), and well-being in a sample of Iranian breast cancer survivors.

    METHODS: In this cross-sectional study with correlational design, data were collected from 181 survivors by consecutive sampling. They answered demographic and clinical information sheet, the SOC scale, the Female Sexual Function Index (FSFI), and the Health Index (HI). The data were analyzed using SPSS version 20.

    RESULTS: The mean age of survivors was 47.04 ± 9.05 years. Most survivors were menopausal (51.9%) and underwent mastectomy (69.1%), and 12 months or more had passed since their treatment ended (71.2%). Sexual function was positively correlated with the level of SOC (r = 0.20) and the HI (r = 0.33). Also, there was a positive correlation between the level of SOC and the HI (r = 0.51). The results of logistic regression analyses showed the protective role of the SOC (OR: 0.95; 95% CI: 0.92-0.97) and the HI (OR: 0.87; 95% CI: 0.79-0.96) for women's sexual function. According to these results, the mediating role of the SOC was assessed between the variables of the HI and the FSFI. The SOC revealed a complete mediating effect in this relationship.

    CONCLUSIONS: The mediator role of the SOC between survivors' well-being and their sexual function helps nurses and clinicians to understand how the SOC can be used as a screening test to detect survivors who are at risk of sexual problems and to plan for salutogenic interventions.

  • 7.
    Lindgren, Anna
    et al.
    Region Östergötland; Linköpings universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Steineck, Gunnar
    Karolinska institutet; Göteborgs universitet.
    Bergmark, Karin
    Göteborgs universitet.
    Enblom, Anna
    Region Östergötland; Linköpings universitet.
    Identifying female pelvic cancer survivors with low levels of physical activity after radiotherapy: women with fecal and urinary leakage need additional support2020In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 28, no 6, p. 2669-2681Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To investigate the frequency of physical activity among female pelvic cancer survivors (i.e., gynecological, rectal, and anal cancer survivors) and to investigate if survivors who practiced physical activity less than once a week differed from survivors practicing physical activity at least once a week with respect to urinary and fecal leakage, clinical and sociodemographic characteristics, quality of life (QoL), and depressed and anxious mood.

    METHODS: Female pelvic cancer survivors (n = 578, mean age 64 years) answered a questionnaire 6-48 months after radiotherapy. A multivariable regression model analyzed factors covarying with frequency of physical activity. We compared QoL and depressed and anxious mood between women practicing physical activity at least or less than once a week.

    RESULTS: Of 568 women delivering data, 186 (33%) practiced physical activity less than once a week while 382 (67%) practiced physical activity at least weekly. Women who leaked a large or all volume of stools (p = 0.01), had just elementary school level of education (p < 0.001), smokers (p = 0.049), or had lymphedema without receiving lymphedema treatment (p = 0.030) were more likely to practice physical activity less than weekly (50%, 45%, 45%, and 37%, respectively) compared with other women. Women practicing physical activity at least weekly reported better QoL (p < 0.001) and lower frequency of depressed mood (p = 0.044) compared with the others.

    CONCLUSIONS: Female cancer survivors experiencing fecal leakage were less likely to practice weekly physical activity than survivors without leakage. The survivors practicing weekly physical activity experienced better QoL and experienced depressed mood less frequently than the others.

  • 8.
    Lundh Hagelin, Carina
    et al.
    Stiftelsen Stockholms sjukhem, Karolinska institutet.
    Seiger, Ake
    Stiftelsen Stockholms sjukhem, Karolinska institutet.
    Fürst, C J
    Stiftelsen Stockholms sjukhem, Karolinska institutet.
    Quality of life in terminal care--with special reference to age, gender and marital status.2006In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 14, no 4, p. 320-8Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: This study was conducted to explore symptoms, other quality of life (QoL) aspects and impact of age, gender, marital status, cancer diagnosis and time of survival in patients with advanced cancer admitted to palliative care.

    PATIENTS AND METHODS: A cross-sectional study of 278 cancer patients completing the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 at referral to palliative care.

    MAIN RESULTS: Gynaecological and gastro-intestinal tract cancers were the most common. Mean age was 67 years; 62% were female. Median survival was 43 days and 39% lived less than 30 days. Patients reported impaired general QoL and high occurrence of symptoms (44 and 100% for diarrhoea and fatigue, respectively). Fatigue, appetite loss and dyspnoea were reported as most severe (mean values of 80, 59 and 51, respectively, 0-100 scales). Married/cohabiting patients and younger patients reported lower functional abilities and more symptoms. No impact of diagnoses on QoL parameters was found. Patients closest to death did not differ significantly from those with longer time to live in social functioning.

    CONCLUSION: Young and married patients may be at higher risk for perceived low quality of life at the end of life. EORTC QLQ-C30 could be used as a clinical tool for screening of symptoms and reduced functioning in palliative care, but may not be appropriate for use in the most severely ill patients. Limitations of the instrument and the need for robust measurements of patient mix are discussed. Proxy ratings of physical symptoms and nurse responsibility to include QoL assessment in daily practice would increase attrition and decrease selection bias.

  • 9.
    Lundh Hagelin, Carina
    et al.
    Stiftelsen Stockholms sjukhem.
    Wengström, Yvonne
    Fürst, Carl Johan
    Patterns of fatigue related to advanced disease and radiotherapy in patients with cancer-a comparative cross-sectional study of fatigue intensity and characteristics.2009In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 17, no 5, p. 519-26Article in journal (Refereed)
    Abstract [en]

    GOALS OF WORK: This cross-sectional comparative study was designed to explore and describe the prevalence and patterns of cancer-related fatigue in patients with advanced cancer as well as patients undergoing curative radiotherapy. Another aim was to explore the association of anxiety and depression with fatigue.

    MATERIALS AND METHODS: Patients with an advanced stage of disease (n = 228) and patients receiving radiotherapy (n = 81) completed the Borg Category Ratio Scale, the Multidimensional Fatigue Inventory and the Hospital Anxiety and Depression Scale.

    MAIN RESULTS: Patients with advanced disease had an increased probability of experiencing all aspects of fatigue except for mental fatigue as compared to patients undergoing radiation, e.g., odds ratio 11.5 (CI 5.8-22.7) for physical fatigue. Higher scores for depression than for anxiety were reported when patients had high levels of fatigue, with 23% of the patients classified as anxious and 39% depressed.

    CONCLUSIONS: The present study was carried out in order to address a gap in research by comparing the multidimensional aspects of fatigue in different groups of cancer patients. It is the intensity of fatigue that seems to be related to the underlying exposure to radiation or to the level of disease burden rather than the different fatigue profiles, such as the relation between physical and mental aspects.

  • 10.
    Seiger Cronfalk, Berit
    et al.
    Ersta Sköndal University College, Department of palliative care research.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Strang, Peter
    Friedrichsen, Maria
    The existential experiences of receiving soft tissue massage in palliative home care: an intervention2009In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 17, no 9, p. 1203-1211Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Soft tissue massage is currently used in palliative care for the relief of anxiety and pain. Only few studies have focused on patients' deeper experience of receiving the massage.

    AIM: The purpose of this study was to explore how patients with cancer in palliative home care experienced soft tissue massage.

    MATERIALS AND METHODS: Twenty-two patients received soft tissue massage (hand or foot) nine times over a period of 2 weeks. Each session lasted for 25 min. Following the last massage session, a qualitative interview was conducted. The analysis was performed using a hermeneutic approach.

    FINDINGS: Soft tissue massage generated feelings of existential respite with perceptions of being released from illness for a while. Two categories constituted the basis of the experiences: (1) "an experience of thoughtful attention" and (2) "a sensation of complete tranquility" resulting in the overarching theme "A time of existential respite."

    CONCLUSION: The patients experienced the massage to give meaning and to be important as it generated feelings of an inner respite.

    RELEVANCE TO CLINICAL PRACTICE: Soft tissue massage appears to be an appreciated source of support to dying patients in palliative home care. The method is easy to comprehend and relatively short (25 min) which may imply that it is a suitable complement in nursing care for this patient group.

  • 11.
    Åkeflo, Linda
    et al.
    Göteborgs universitet.
    Elmerstig, Eva
    Malmö universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Skokic, Viktor
    Göteborgs universitet.
    Arnell, Amanda
    Göteborgs universitet.
    Bergmark, Karin
    Göteborgs universitet.
    Sexual health and wellbeing after pelvic radiotherapy among women with and without a reported history of sexual abuse: important issues in cancer survivorship care2021In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 29, no 11, p. 6851-6861Article in journal (Refereed)
    Abstract [en]

    AIMS: Sexual abuse is a women's health concern globally. Although experience of sexual abuse and cancer may constitute risk factors for sexual dysfunction and low wellbeing, the effects of sexual abuse have received little attention in oncology care. This study aims to explore sexual health and wellbeing in women after pelvic radiotherapy and to determine the relationship between sexual abuse and sexual dysfunction, and decreased wellbeing.

    METHODS: Using a study-specific questionnaire, data were collected during 2011-2017 from women with gynaecological, anal, or rectal cancer treated with curative pelvic radiotherapy in a population-based cohort and a referred patient group. Subgroup analyses of data from women with a reported history of sexual abuse were conducted, comparing socio-demographics, diagnosis, aspects of sexual health and wellbeing.

    RESULTS: In the total sample of 570 women, 11% reported a history of sexual abuse and among these women the most common diagnosis was cervical cancer. More women with than without a history of sexual abuse reported feeling depressed (19.4% vs. 9%, p = 0.007) or anxious (22.6% vs. 11.8%, p = 0.007) and suffering genital pain during sexual activity (52% vs. 25.1%, p = 0.011, RR 2.07, CI 1.24-3.16). In the total study cohort, genital pain during sexual activity was associated with vaginal shortness (68.5% vs. 31.4% p ≤ 0.001) and inelasticity (66.6% vs. 33.3%, p ≤ 0.001).

    CONCLUSIONS: Our findings suggest that a history of both sexual abuse and pelvic radiotherapy in women are associated with increased psychological distress and sexual impairment, challenging healthcare professionals to take action to prevent retraumatisation and provide appropriate interventions and support.

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