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  • 1. Bylund Grenklo, Tove
    et al.
    Kreicbergs, Ulrika
    Sophiahemmet University.
    Valdimarsdóttir, Unnur A
    Nyberg, Tommy
    Steineck, Gunnar
    Fürst, Carl Johan
    Self-injury in youths who lost a parent to cancer: nationwide study of the impact of family-related and health-care-related factors2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 9, p. 989-997Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Self-injury, a manifestation of severe psychological distress, is increased in cancer-bereaved youths. Little is known about the potential influence on the risk for self-injury of factors that could be clinically relevant to and modifiable by the health-care professionals involved in the care of the dying parent.

    METHODS: In a nationwide population-based anonymous study, 622 (73.1%) youths (aged 18-26) who, 6 to 9 years earlier at ages 13 to 16, had lost a parent to cancer answered study-specific questions about self-injury and factors related to the family and parental health care.

    RESULTS: Univariable analyses showed that the risk for self-injury was increased among cancer-bereaved youths who reported poor family cohesion the years before (relative risk [RR], 3.4, 95% confidence interval [CI], 2.5-4.6) and after the loss (RR, 3.3, 95% CI, 2.4-4.4), distrust in the health care provided to the dying parent (RR, 1.7, 95% CI, 1.2-2.4), perceiving poor health-care efforts to cure the parent (RR 1.5, 95% CI, 1.1-2.1) and poor efforts to prevent suffering (RR, 1.6, 95% CI, 1.1-2.4), that at least one of their parents had been depressed or had troubles in life (RR, 1.5, CI, 1.1-2.1) and believing 3 days before the loss that the treatment would probably cure the parent (RR, 1.6, CI, 1.1-2.3). In the total multivariable models, only poor family cohesion before and after the loss remained statistically significantly associated with self-injury.

    CONCLUSION: Poor family cohesion before and after the loss of a parent to cancer is associated with an increased risk of self-injury in teenage children. Copyright © 2014 John Wiley & Sons, Ltd.

  • 2.
    Eilegård, Alexandra
    et al.
    Sophiahemmet University.
    Steineck, Gunnar
    Nyberg, Tommy
    Kreicbergs, Ulrika
    Sophiahemmet University.
    Bereaved siblings' perception of participating in research: a nationwide study2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 2, p. 411-416Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The objective of the present study is to examine bereaved siblings' perception of research participation. METHODS: A Swedish nationwide study on avoidable and modifiable health care-related factors in paediatric oncology among bereaved siblings who lost a brother or sister to cancer between the years 2000 and 2007 was conducted. Data are presented as proportions, and the differences between groups were statistically tested at the 5% significant level using Fisher's exact test. RESULTS: Out of 240 eligible siblings, 174 responded (73 %). None of the siblings (0/168) thought their participation would affect them negatively in the long term. However, 13% (21/168) stated it was a negative experience to fill out the questionnaire, whereas 84% (142/169) found it to be a positive experience. Women were more likely to report their participation as positive in a long-term perspective compared with men (p = 0.018). CONCLUSIONS: None of the bereaved siblings in this Swedish nationwide study anticipated any long-term negative effect from their research participation. A majority reported it as positive to revisit their needs and experiences throughout their brother or sister's illness and death 2-9 years following the loss. We believe that the stepwise approach used in this study contributed to the high acceptance. Copyright © 2011 John Wiley & Sons, Ltd.

  • 3.
    Eilegård, Alexandra
    et al.
    Sophiahemmet University.
    Steineck, Gunnar
    Nyberg, Tommy
    Kreicbergs, Ulrika
    Sophiahemmet University.
    Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 3, p. 683-691Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The objective of this study was to assess long-term psychological distress in siblings who lost a brother or sister to cancer 2 to 9 years earlier, as compared with a control group of non-bereaved siblings from the general population. METHODS: During 2009, we conducted a nationwide follow-up study in Sweden by using an anonymous study-specific questionnaire. Siblings who had lost a brother or sister to cancer between the years 2000 and 2007 and also a control group of non-bereaved siblings from the general population were invited to participate. The Hospital Anxiety and Depression Scale (HADS) was used to measure psychological distress, and to test for differences in the ordinal outcome responses between the groups, we used Wilcoxon-Mann-Whitney rank-sum test. RESULTS: Among the bereaved siblings, 174/240 (73%) participated and 219/293 (75%) among the non-bereaved. Self-assessed low self-esteem (p = 0.002), difficulties falling asleep (p = 0.005), and low level of personal maturity (p = 0.007) at follow-up were more prevalent among bereaved siblings. However, anxiety (p = 0.298) and depression (p = 0.946), according to HADS, were similar. CONCLUSION: Bereaved siblings are at increased risk of low self-esteem, low level of personal maturity and difficulties falling asleep as compared with non-bereaved peers. Yet, the bereaved were not more likely to report anxiety or depression. Copyright © 2012 John Wiley & Sons, Ltd.

  • 4. El Malla, Hanan
    et al.
    Kreicbergs, Ulrika
    Sophiahemmet University.
    Steineck, Gunnar
    Wilderäng, Ulrica
    El Sayed Elborai, Yasser
    Ylitalo, Nathalie
    Parental trust in health care: a prospective study from the Children's Cancer Hospital in Egypt2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 3, p. 548-554Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Patient-physician communication and patient satisfaction are important elements of cancer care. Trust is considered to be crucial for the patient-physician relationship, yet little is to be found in the literature regarding what factors may influence trust. METHODS: We assessed predictors of trust in health-care professionals and in the medical care by administering two questionnaires, one at start of chemotherapy treatment and one at the time of the third chemotherapy cycle, to 304 parents of children with newly diagnosed cancer at the Children's Cancer Hospital in Cairo, Egypt. RESULTS: Parents' trust in the medical care at the time of the child's third chemotherapy cycle was significantly associated with the following at the start of treatment: having received at least moderate information about the disease (relative risk (RR) 13.2; 95% CI 7.8-22.3) and the treatment (RR 17.2; 95% CI 9.5-31.4), having the opportunity to communicate with the child's physicians (RR 21.3; 95% CI 11.7-38.8), being satisfied with the physicians conversation style (RR 30.6; 95% CI 14.4-64.9), having the emotional needs met (RR 22.2; 95% CI 11.8-41.9), and being met with care by the child's physicians (RR 32.0; 95% CI 15.2-67.7). After multivariable model selection, the strongest predictor of trust at the time of the third chemotherapy cycle was to be met with care at the start of treatment. CONCLUSION: Parents being met with care by the child's physicians at the beginning of the child's chemotherapy treatment develop an increased trust in the medical care. Copyright © 2012 John Wiley & Sons, Ltd.

  • 5. El Malla, Hanan
    et al.
    Steineck, Gunnar
    Ylitalo Helm, Nathalie
    Wilderäng, Ulrika
    El Sayed Elborai, Yasser
    Elshami, M
    Kreicbergs, Ulrika
    Sophiahemmet University.
    Cancer disclosure-account from a pediatric oncology ward in Egypt2017In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, ISSN 1057-9249, Vol. 26, no 5, p. 679-685Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Informing the child about his/her diagnosis and treatment plan is essential; research has shown that it is related to the patient's quality of life and adherence to medication.

    METHODS: For 7 months during 2008 (February to September), 2 study-specific questionnaires were constructed and administered to 304 parents of children diagnosed with cancer at the Children's Cancer Hospital Egypt.

    RESULTS: Among the 313 eligible parents of children diagnosed with cancer, 304 (97%) answered the first questionnaire and 281 (92%) answered the second questionnaire. We found that nearly three-quarters (72%) of the parents had their child's cancer diagnosis communicated by the physician. Among the 72%, the rate of the children present with the parent or parents during the disease disclosure conversation was 39% (n = 85/219). The majority of the children were in the age group 5-18 years (55%).

    CONCLUSIONS: Our findings indicate that cancer disclosure at the Children's Cancer Hospital is to a certain degree common; yet even when disclosure does take place, it is mainly in the absence of the child. Moreover, the information provided during the conversation may not be fully comprehended by the parent or the child because of the physician's misleading use of terms when disclosing the disease. Therefore, better practice should be developed for disease disclosure, and proper communication should be established between the patients and the provider; patient autonomy should also have an influence in the clinical practice.

  • 6. Nilsson, Marie I
    et al.
    Olsson, Mariann
    Wennman-Larsen, Agneta
    Petersson, Lena-Marie
    Alexanderson, Kristina
    Women's reflections and actions regarding working after breast cancer surgery - a focus group study2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 7, p. 1639-44Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: To better understand processes affecting return to work (RTW) after breast cancer, more knowledge from the perspective of sickness absentees is warranted. Still, research based on women's own reasoning and actions in RTW is very scarce. This study aims to elucidate how women with breast cancer reflect and act on work-related issues.

    MATERIAL AND METHODS: Thematic analyses of data from four focus group interviews with 23 women who had had breast cancer surgery in the previous 3-13 months were carried out.

    RESULTS: The five following themes of reflections regarding RTW were identified: 'health and functioning', 'self-esteem/integrity', 'value of work', 'relationships at work', and 'social circumstances'. These reflections were associated with the three identified themes of actions taken by the women: 'to work or to be sickness absent', 'to adjust work according to own needs or not', and 'to disclose or to hide one's cancer'. There was a distinct difference between women who experienced work as a source of well-being and those who needed a respite from work.

    CONCLUSION: This study adds knowledge to the process of RTW after breast cancer and focuses on factors that lead the women to an active role in this process. We point to the interplay between women's own preferences, perceived competence, outer opportunities, and the actions each woman take with regard to RTW, which need to be recognized by all stakeholders involved. Furthermore, it continues to be essential to address the specific issue of disclosure in the workplace because this may be distressing for women.

  • 7. Nilsson, Marie I
    et al.
    Petersson, Lena-Marie
    Wennman-Larsen, Agneta
    Sophiahemmet University.
    Olsson, Mariann
    Vaez, Marjan
    Alexanderson, Kristina
    Adjustment and social support at work early after breast cancer surgery and its associations with sickness absence2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 12, p. 2755-62Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: As half of the women with breast cancer are of working ages and usually survive, knowledge is needed on how to support them early regarding work-related problems caused by treatments. Most previous studies have focused on individual and disease-related factors, whereas few have focused on work-related factors such as work adjustment and social support. The aim of this study was to investigate received and perceived social support from supervisor and colleagues as well as work adjustments, and their associations with sickness absence, among women who recently had had breast cancer surgery.

    METHOD: Inclusion criteria were as follows: women aged 20-63 years, living in Stockholm County, treated surgically for a first diagnosis of breast cancer, literate in Swedish, without pre-surgical chemotherapy or known distant metastases. Included in the study were 605 women who worked at diagnosis and that had answered a questionnaire within eight weeks of inclusion. Descriptive statistics, univariate, and multivariable logistic regression analyses were applied to estimate odds ratios (OR) with 95% confidence intervals (CI) for the likelihood of being sickness absent.

    RESULTS: Most women perceived and received social support and work adjustment after breast cancer surgery. Low adjustment (OR = 2.14; 95% CI, 1.45-3.18) and less social support (OR = 1.80; 95% CI, 1.16-2.78) were significantly associated with being sickness absent. Adjusting for sociodemographics, strenuous work posture, and treatment did not attenuate these associations.

    CONCLUSION: Adjustment at work and social support from employer are associated with sickness absence and needs to be explored in discussions on return to work after breast cancer surgery. Copyright © 2013 John Wiley & Sons, Ltd.

  • 8. Saboonchi, Fredrik
    et al.
    Petersson, Lena-Marie
    Alexanderson, Kristina
    Bränström, Richard
    Wennman-Larsen, Agneta
    Sophiahemmet University.
    Expecting the best and being prepared for the worst: structure, profiles, and 2-year temporal stability of dispositional optimism in women with breast cancer2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no 8, p. 957-963Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Dispositional optimism is viewed as a key personality resource for resiliency and has been linked to adjustment among women with breast cancer. The aim was to examine (a) the psychometric proprieties of Life Orientation Test-Revised (LOT-R), (b) the potential independence and co-occurrence of positive and negative dimensions of future outcome expectancies, (c) the longitudinal invariance of LOT-R and the temporal stability of dispositional optimism over 2 years following surgery, and (d) the predictive impact of optimism and pessimism on emotional distress among women with breast cancer.

    METHODS: Data from a prospective study (n = 750) of women with breast cancer were acquired shortly after surgery, and the women were followed up for 2 years. Assessments of LOT-R, Hospital Anxiety and Depression Scale, treatment-related, and demographic variables were subjected to structural equation modeling analysis.

    RESULTS: A bidimensional and temporarily invariant structure of LOT-R displayed acceptable fit indices. Three profiles of future expectancies consisting of optimists, pessimists, and ambiguous were identified. Temporal stability in optimism and pessimism over 2 years was established. Women with higher education displayed higher degrees of pessimism. Baseline dispositional optimism inversely predicted emotional distress at 2 years.

    CONCLUSIONS: The LOT-R should be approached as a bidimensional measure. Co-occurrence of optimism and pessimism may indicate a cautious defensive coping effort in women with breast cancer. The importance of systematic efforts to enhance optimism as well as the capacity to acknowledge both positive and negative future expectancies is emphasized. Copyright © 2015 John Wiley & Sons, Ltd.

  • 9. Sveen, Josefin
    et al.
    Eilegård, Alexandra
    Sophiahemmet University.
    Steineck, Gunnar
    Kreicbergs, Ulrika
    Sophiahemmet University.
    They still grieve - a nationwide follow-up of young adults 2-9 years after losing a sibling to cancer2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 6, p. 658-664Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: The aims of this study were to assess the prevalence of unresolved grief in bereaved young adult siblings and examine possible contributing factors.

    METHODS: The study was a Swedish population-based study of young adults who had lost a brother or sister to cancer, 2-9 years earlier. Of 240 eligible siblings, 174 (73%) completed a study-specific questionnaire. This study focused on whether the respondents had worked through their grief over the sibling's death and to what extent.

    RESULTS: A majority (54%) of siblings stated that they had worked through their grief either 'not at all' or 'to some extent' at the time of investigation. In multiple regression analyses with unresolved grief as the dependent variable, 21% of the variance was explained by lack of social support and shorter time since loss.

    CONCLUSION: The majority of bereaved young adults had not worked through their grief over the sibling's death. A small group of siblings reported that they had not worked through their grief at all, which may be an indicator of prolonged grief. Lack of social support and more recent loss were associated with not having worked through the grief over the sibling's death. Copyright © 2013 John Wiley & Sons, Ltd.

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