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  • Lövgren, Malin, et al. (författare)
  • Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families
  • 2016
  • Ingår i: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 33:4, s. 297-305
  • Tidskriftsartikel (refereegranskat)abstract
    • Introduction: Siblings of children with cancer experience psychosocial distress during the illness and after bereavement, but often stand outside the spotlight of attention and care. This study explored bereaved siblings' advice to health care professionals (HCPs) working with children with cancer and their families. Materials and Methods: In a nationwide Swedish survey of bereaved siblings, 174/240 (73%) participated. Of these, 108 answered an open-ended question about what advice they would give to HCPs working with children with cancer and their families. In this study, responses to this single question were analyzed using content analysis. Results: The most common advice, suggested by 56% of siblings, related to their own support. One third suggested giving better medical information to siblings. Some siblings wanted to be more practically involved in their brother's/sister's care and suggested that HCPs should give parents guidance on how to involve siblings. Other common advice related to psychosocial aspects, such as the siblings' wish for HCPs to mediate hope, yet also realism, and the importance of asking the ill child about what care they wanted. Conclusion: Information, communication, and involvement should be emphasized by HCPs to support siblings' psychosocial needs in both the health care setting and within the family.
  • Bylund Grenklo, Tove, et al. (författare)
  • Self-injury in youths who lost a parent to cancer : nationwide study of the impact of family-related and health-care-related factors.
  • 2014
  • Ingår i: Psycho-Oncology. - : John Wiley and Sons. - 1057-9249 .- 1099-1611. ; 23:9, s. 989-997
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
  • Eilegård Wallin, Alexandra, 1975-, et al. (författare)
  • Bereaved siblings' perception of participating in research : a nationwide study
  • 2013
  • Ingår i: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 22:2, s. 411-416
  • Tidskriftsartikel (refereegranskat)abstract
    • ObjectiveThe objective of the present study is to examine bereaved siblings' perception of research participation.MethodsA 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.ResultsOut 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).ConclusionsNone 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.
  • Eilegård Wallin, Alexandra, 1975-, et al. (författare)
  • Insufficient communication and anxiety in cancer-bereaved siblings : A nationwide long-term follow-up
  • 2016
  • Ingår i: Palliative & Supportive Care. - Cambridge : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 14:5, s. 488-494
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: The purpose of this study was to examine siblings' long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life.Method: A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI 95%).Results: Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2-4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3-4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings' risk of reporting anxiety at follow-up (RR = 2.2(1.1-4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5-18.2)). No such differences were seen when the ill brother or sister was cared for at home.Significance of results: Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.
  • Eilegård Wallin, Alexandra, 1975-, et al. (författare)
  • Risk of parental dissolution of partnership following the loss of a child to cancer : A population-based long-term follow-up
  • 2010
  • Ingår i: Archives of Pediatrics & Adolescent Medicine. - Chicago : American Medical Association. - 1072-4710 .- 1538-3628. ; 164:1, s. 100-101
  • Tidskriftsartikel (refereegranskat)abstract
    • A common belief is that bereaved parents are more likely to separate than others, but previous research has been unable to settle this issue owing to conflicting findings. Parents of a child with cancer are at increased risk of psychological distress and possibly also marital strain. Sirki et al studied parents who lost a child during active cancer treatment or terminal care and found that divorce was significantly more common among couples with a child in terminal care compared with a child in active cancer therapy. No conclusive studies on long-term marital status in parents having lost a child to cancer have been conducted. Therefore, we assessed parental dissolution of a partnership 4 to 9 years following the loss of a child to cancer compared with parents from the general population.
  • Falk, Megan W., et al. (författare)
  • Psychological symptoms in widowed parents with minor children, 2-4 years after the loss of a partner to cancer
  • 2021
  • Ingår i: Psycho-Oncology. - : WILEY. - 1057-9249 .- 1099-1611. ; 30:7, s. 1112-1119
  • Tidskriftsartikel (refereegranskat)abstract
    • ObjectivesThis study aimed to explore psychological symptoms in widowed parents with minor children, 2–4 years after the death of their partner. A second aim was to examine the associations between psychological symptoms and nonmodifiable and modifiable illness and healthcare-related factors.MethodsA cross-sectional survey study on widowed parents with minor children after the loss of a partner to cancer. In total, 42 parents completed an online questionnaire including instruments for assessing symptoms of anxiety, depression, grief rumination, prolonged grief, and posttraumatic stress. Descriptive statistics, Spearman's correlation coefficients, Mann–Whitney U tests and Kruskal–Wallis tests were used to analyze differences in symptomology based on modifiable and nonmodifiable factors.ResultsParents reported moderate–severe symptoms of anxiety, posttraumatic stress, and depression. Reporting having received more information during the partner's illness regarding how the illness could affect the partner's somatic and psychological health and where to turn for support were associated with fewer psychological symptoms.ConclusionsA substantial proportion of widowed parents with minor children reported a moderate–severe symptom burden regarding depression, anxiety, and posttraumatic stress, and less so with prolonged grief symptoms. This study also highlighted the value of receiving information from healthcare personnel regarding the somatic and psychological effects of a partner's illness and where widowed parents can turn for support.
  • Grenklo, Tove Bylund, et al. (författare)
  • Communication and Trust in the Care Provided to a Dying Parent: A Nationwide Study of Cancer-Bereaved Youths.
  • 2013
  • Ingår i: Journal of Clinical Oncology. - : American Society of Clinical Oncology. - 1527-7755 .- 0732-183X.
  • Tidskriftsartikel (refereegranskat)abstract
    • PURPOSETo assess children's trust in the care provided to a dying parent during the final week of life in relation to end-of-life medical information about disease, treatment, and death. METHODSThis nationwide population-based survey included 622 (73%) of 851 youths who, 6 to 9 years earlier, at age 13 to 16 years, lost a parent to cancer. We asked about the children's reception of end-of-life professional information and trust in the care provided. We also asked about depression and several potential risk factors of distrust in the care provided.ResultsA majority (82%) reported moderate/very much trust in the care provided. Compared with children who received end-of-life medical information before their loss, the risk of distrust in the care provided was higher in those who received no information (risk ratio [RR], 2.5; 95% CI, 1.5 to 4.1), in those who only received information afterward (RR, 3.2; 95% CI, 1.7 to 5.9), and in those who did not know or remember if end-of-life medical information was provided (RR, 1.7; 95% CI, 1.1 to 2.5). Those reporting distrust in the care provided had an RR of 2.3 (95% CI, 1.5 to 3.5) for depression. Furthermore, the risk of distrust in the care provided was higher among children reporting poor efforts to cure (RR, 5.1; 95% CI, 3.6 to 7.3), and/or a poor relationship with the surviving parent (RR, 2.9; 95% CI, 2.0 to 4.1). CONCLUSIONOur study suggests that children's trust in the care provided to a dying parent was highest when they received end-of-life medical information before their loss.
  • Lövgren, Malin, et al. (författare)
  • Clock time and embodied time experienced by patients with inoperable lung cancer
  • 2010
  • Ingår i: Cancer Nursing. - Philadelphia : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 33:1, s. 55-63
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
  • Lövgren, Malin, et al. (författare)
  • Time spans from first symptom to treatment in patients with lung cancer : The influence of symptoms and demographic characteristics
  • 2008
  • Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 47:3, s. 397-405
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Cancer stage at diagnosis is the most important prognostic factor for lung cancer (LC), but most patients are diagnosed with advanced disease with many and intense symptoms. This study explores relationships between LC patients' first symptoms, symptoms triggering health care system (HCS) contact, demographic/clinical characteristics, and time spans in the care trajectory from first symptom(s) to treatment start.MATERIALS AND METHODS: Medical records were examined from all 314 patients diagnosed with primary LC in 2003 at a Department of Respiratory Medicine, in Stockholm Sweden. Descriptive analysis was used to examine symptoms and time spans in the care trajectory. Cox regression analysis was conducted to explore the influence of symptoms and demographic/clinical characteristics on the time spans.RESULTS: Tumor-specific symptoms led to HCS visits to a greater extent than did systemic symptoms, despite reports of weight loss, fatigue and appetite loss as common first symptoms. Minor differences between women and men were found regarding specific symptoms. The study confirms that the time spans from first symptoms reported to treatment start are extensive, exceeding Swedish national recommendations. A lump/resistance, neurological symptoms, appetite loss, hemoptysis and non-thoracic related pain were associated with significantly shorter time spans in the care trajectory. People >74 years old risked longer time span from first HCS visit to treatment start.CONCLUSION: This study indicates a need for a more efficient LC care trajectory. Elderly patients could be particularly vulnerable for longer time spans.
  • Rexhepi, Hanife, 1984-, et al. (författare)
  • Online electronic healthcare records : Comparing the views of cancer patients and others
  • 2020
  • Ingår i: Health Informatics Journal. - : Sage Publications. - 1460-4582 .- 1741-2811. ; 26:4, s. 2915-2929
  • Tidskriftsartikel (refereegranskat)abstract
    • This study investigates differences in attitudes towards, and experiences with, online electronic health records between cancer patients and patients with other conditions, highlighting what is characteristic to cancer patients. A national patient survey on online access to electronic health records was conducted, where cancer patients were compared with all other respondents. Overall, 2587 patients completed the survey (response rate 0.61%). A total of 347 respondents (13.4%) indicated that they suffered from cancer. Results showed that cancer patients are less likely than other patients to use online electronic health records due to general interest (p < 0.001), but more likely for getting an overview of their health history (p = 0.001) and to prepare for visits (p < 0.001). Moreover, cancer patients rate benefits of accessing their electronic health records online higher than other patients and see larger positive effects regarding improved communication with and involvement in healthcare. 
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