| 1. |
- Eilertsen, M. E. B., et al.
(author)
-
Impact of Social Support on Bereaved Siblings' Anxiety: A Nationwide Follow-Up
- 2013
-
In: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 30:6, s. 301-310
-
Journal article (peer-reviewed)abstract
- Purpose:To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up. Method: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety. Results: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively. Conclusion: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.
|
|
| 2. |
- Sveen, Josefin, et al.
(author)
-
They still grieve : a nationwide follow‐up of young adults 2–9 years after losing a sibling to cancer
- 2014
-
In: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 23:6, s. 658-664
-
Journal article (peer-reviewed)abstract
- 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. Keywords: bereavement; cancer; grief; oncology; sibling loss; young adult loss.
|
|
| 3. |
- Eilegård Wallin, Alexandra, 1975-, et al.
(author)
-
Bereaved siblings' perception of participating in research : a nationwide study
- 2013
-
In: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 22:2, s. 411-416
-
Journal article (peer-reviewed)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.
|
|
| 4. |
- Eilegård Wallin, Alexandra, 1975-, et al.
(author)
-
Insufficient communication and anxiety in cancer-bereaved siblings : a nationwide long-term follow-up
- 2016
-
In: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; October, s. 488-494
-
Journal article (peer-reviewed)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.
|
|
| 5. |
- Lövgren, Malin, et al.
(author)
-
Clock time and embodied time experienced by patients with inoperable lung cancer
- 2010
-
In: Cancer Nursing. - Philadelphia : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 14, s. S45-S45
-
Journal article (peer-reviewed)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.
|
|
| 6. |
- Kamsvåg, Tove, 1986-, et al.
(author)
-
Prevention of oral mucositis with cryotherapy in children undergoing hematopoietic stem cell transplantations-a feasibility study and randomized controlled trial
- 2020
-
In: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339.
-
Journal article (peer-reviewed)abstract
- Purpose To evaluate the feasibility of oral cryotherapy (OC) in children and to investigate if OC reduces the incidence of severe oral mucositis (OM), oral pain, and opioid use in children undergoing hematopoietic stem cell transplantation (HSCT). Methods Fifty-three children, 4-17 years old, scheduled for HSCT in Sweden were included and randomized to OC or control using a computer-generated list. OC instructions were to cool the mouth with ice for as long as possible during chemotherapy infusions with an intended time of >= 30 min. Feasibility criteria in the OC group were as follows: (1) compliance >= 70%; (2) considerable discomfort during OC < 20%; (3) no serious adverse events; and (4) ice administered to all children. Grade of OM and oral pain was recorded daily using the WHO-Oral Toxicity Scale (WHO-OTS), Children's International Oral Mucositis Evaluation Scale, and Numerical Rating Scale. Use of opioids was collected from the medical records. Results Forty-nine children (mean age 10.5 years) were included in analysis (OC = 26, control = 23). The feasibility criteria were not met. Compliance was poor, especially for the younger children, and only 15 children (58%) used OC as instructed. Severe OM (WHO-OTS >= 3) was recorded in 26 children (OC = 15, control = 11). OC did not reduce the incidence of severe OM, oral pain, or opioid use. Conclusion The feasibility criteria were not met, and the RCT could not show that OC reduces the incidence of severe OM, oral pain, or opioid use in pediatric patients treated with a variety of conditioning regimens for HSCT.
|
|
| 7. |
- Udo, Camilla, et al.
(author)
-
Surgical nurses' work-related stress when caring for severely ill and dying patients in cancer after participating in an educational intervention on existential issues.
- 2013
-
In: European journal of oncology nursing : the official journal of European Oncology Nursing Society. - : Elsevier BV. - 1532-2122 .- 1462-3889. ; 17:5, s. 546-553
-
Journal article (peer-reviewed)abstract
- AIM: The aim of this study was to describe surgical nurses' perceived work-related stress in the care of severely ill and dying patients with cancer after participating in an educational intervention on existential issues. METHODS AND SAMPLE: This article reports a mixed methods pilot study of an education programme consisting of lectures and supervised discussions conducted in 2009-2010 in three surgical wards in a county hospital in Sweden. The concurrent data collections consisted of repeated interviews with eleven nurses in an educational group, and questionnaires were distributed to 42 nurses on four occasions. RESULTS: Directly after the educational intervention, the nurses described working under high time pressure. They also described being hindered in caring because of discrepancies between their caring intentions and what was possible in the surgical care context. Six months later, the nurses described a change in decision making, and a shift in the caring to make it more in line with their own intentions and patients' needs rather than the organizational structure. They also reported decreased feelings of work-related stress, decreased stress associated with work-load and feeling less disappointed at work. CONCLUSIONS: Results indicate that it may be possible to influence nurses' work-related stress through an educational intervention. According to nurses' descriptions, reflecting on their ways of caring for severely ill and dying patients, many of whom had cancer, from an existential perspective, had contributed to enhanced independent decision making in caring. This in turn appears to have decreased their feelings of work-related stress and disappointment at work.
|
|
| 8. |
- Lövgren, Malin, et al.
(author)
-
Care at end of life influences grief : A nationwide long-term follow-up among young adults who lost a brother or sister to childhood cancer
- 2018
-
In: Journal of Palliative Medicine. - Larchmont, New York : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 21:2, s. 156-162
-
Journal article (peer-reviewed)abstract
- BACKGROUND: A majority of cancer-bereaved siblings report long-term unresolved grief, thus it is important to identify factors that may contribute to resolving their grief.OBJECTIVE: To identify modifiable or avoidable family and care-related factors associated with unresolved grief among siblings two to nine years post loss.DESIGN: This is a nationwide Swedish postal survey.MEASUREMENTS: Study-specific questions and the standardized instrument Hospital Anxiety and Depression Scale. Primary outcome was unresolved grief, and family and care-related factors were used as predictors.SETTING/PARTICIPANTS: Cancer-bereaved sibling (N = 174) who lost a brother/sister to childhood cancer during 2000-2007 in Sweden (participation rate 73%). Seventy-three were males and 101 females. The age of the siblings at time of loss was 12-25 years and at the time of the survey between 19 and 33 years.RESULTS: Several predictors for unresolved grief were identified: siblings' perception that it was not a peaceful death [odds ratio (OR): 9.86, 95% confidence interval (CI): 2.39-40.65], limited information given to siblings the last month of life (OR: 5.96, 95% CI: 1.87-13.68), information about the impending death communicated the day before it occurred (OR: 2.73, 95% CI: 1.02-7.33), siblings' avoidance of the doctors (OR: 3.22, 95% CI: 0.75-13.76), and lack of communication with family (OR: 2.86, 95% CI: 1.01-8.04) and people outside the family about death (OR: 5.07, 95% CI: 1.64-15.70). Depressive symptoms (OR: 1.27, 95% CI: 1.12-1.45) and time since loss (two to four years: OR: 10.36, 95% CI: 2.87-37.48 and five to seven years: OR: 8.36, 95% CI: 2.36-29.57) also predicted unresolved grief. Together, these predictors explained 54% of the variance of unresolved grief.CONCLUSION: Siblings' perception that it was not a peaceful death and poor communication with family, friends, and healthcare increased the risk for unresolved grief among the siblings.
|
|
| 9. |
- Henoch, Ingela, 1956, et al.
(author)
-
The influence of symptom clusters and the most distressing concerns regarding quality of life among patients with inoperable lung cancer
- 2014
-
In: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 18:3, s. 236-241
-
Journal article (peer-reviewed)abstract
- 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 latrogenic 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. (C) 2013 Elsevier Ltd. All rights reserved.
|
|
| 10. |
- Lövgren, Malin, et al.
(author)
-
Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families
- 2016
-
In: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 33:4, s. 297-305
-
Journal article (peer-reviewed)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.
|
|
