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  • 1.
    Beernaert, Kim
    et al.
    Belgien.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Fürst, Carl Johan
    Lunds universitet.
    Nyberg, Tommy
    Karolinska institutet; University of Cambridge, United Kingdom.
    Steineck, Gunnar
    Karolinska institutet; Sahlgrenska akademin, Göteborgs universitet.
    Bylund-Grenklo, Tove
    Karolinska institutet; Linnéuniversitetet.
    Distrust in the End-of-Life Care Provided to a Parent and Long-Term Negative Outcomes Among Bereaved Adolescents: A Population-Based Survey Study2017In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 35, no 27, p. 3136-3144Article in journal (Refereed)
    Abstract [en]

    Purpose: Previous research shows that the death of a parent places children at risk for a number of negative outcomes. The role of trust in health care at the end of life has been acknowledged as crucial for patients and adult family members. However, the consequences of children’s distrust in the care provided to their parents remain unknown. Therefore, we investigated the negative long-term outcomes of cancer-bereaved sons’ and daughters’ distrust in the care that was provided to a dying parent.

    Methods: We used a population-based nationwide survey to investigate self-reported distrust in the care provided and possible negative outcomes in 622 (73%) participants who had lost a parent as a result of cancer 6 to 9 years earlier, at ages 13 to 16 years. All participants were 18 years or older at the time of the survey.

    Results: In those who reported no or little trust (ie, distrust) in the health care provided to their dying parents, we found statistically significantly higher risks of various negative outcomes at the time of survey: bitterness toward health care professionals for not having done everything that was possible (crude risk ratio [RR], 3.5; 95% CI, 2.3 to 5.1) and for having stopped treatment (RR, 3.4; 95% CI, 2.1 to 6.0), self-destructiveness (eg, self-injury [RR, 1.7; 95% CI, 1.2 to 2.4]), and psychological problems (eg, moderate to severe depression according to the Patient Health Questionnaire–9 [RR, 2.3; 95% CI, 1.5 to 3.5]).

    Conclusion: In cancer-bereaved former adolescents, distrust in the health care provided to the dying parent is associated with a higher risk of negative long-term outcomes. The health care professionals involved in this care might play an important role in safeguarding the trust of adolescents.

  • 2.
    Berg, Linda
    et al.
    Sahlgrenska akademin, Göteborgs universitet.
    Nolbris, Margaretha Jenholt
    Sahlgrenska akademin, Göteborgs universitet.
    Koinberg, Ingalill
    Sahlgrenska akademin, Göteborgs universitet.
    Melin-Johansson, Christina
    Sahlgrenska akademin, Göteborgs universitet.
    Möller, Anders
    Ersta Sköndal University College, Department of Social Sciences. Sahlgrenska akademin, Göteborgs universitet.
    Öhlen, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC. Sahlgrenska akademin, Göteborgs universitet.
    Characterisation of cancer support and rehabilitation programmes: a Swedish multiple case study.2014In: Open Nursing Journal, ISSN 1874-4346, E-ISSN 1874-4346, Vol. 8, article id TONURSJ-8-1Article in journal (Refereed)
    Abstract [en]

    Cancer support and rehabilitation are suggested to be an integral part of cancer care strategies. This study focuses on comparativeness of cancer support and rehabilitation programmes. The aim of this study was to analyse available cancer support and rehabilitation programmes in Sweden presented as complementary to cancer rehabilitation at cancer clinics. A multiple case study design was chosen in order to inquire the small number of existing supportive and rehabilitative cancer programmes. Based on the structures, processes and outcomes of the nine included programmes, three types of cancer support and rehabilitation programmes were identified: multimodal rehabilitation, comprehensive cancer support and art therapy. Cancer support and rehabilitation programmes offer a variety of activities and therapies which are highly valuable and relevant for people with cancer. The typology of cancer support and rehabilitation programmes and comparability between programmes need further inquiry.

  • 3.
    Bergius, Anki
    et al.
    Drottning Silvias barn- och ungdomssjukhus, Göteborg.
    Palmqvist, Gunilla
    Sahlgrenska universitetssjukhuset, Göteborg.
    Holm, Ann-Kristin
    Göteborgs universitet, Sahlgrenska universitetssjukhuset.
    Öhlén, Joakim
    Göteborgs universitet, Karolinska institutet.
    Stödverksamhet för barn som förlorat en förälder: En litteraturstudie2004In: Vård i Norden, ISSN 0107-4083, E-ISSN 1890-4238, Vol. 24, no 4, p. 41-44Article, review/survey (Other academic)
    Abstract [en]

    The aim with this literature review was to describe content, objectives, design, and outcomes of support groups for parentally bereaved children three to twelve years of age. In a support group with children in similar situation the children's thoughts, experiences and feelings will be normalised through different activities. Pedagogical methods include creative activities of different kinds, e.g. painting, writing letters and poems, reading stories, play and games. The purposes of the methods are to accept and understand the reality of the loss, to understand and work through the grieving, to enhance family communication, and to keep the memory of the death and go on living. Organisation and structure are described in relation to development levels and ages of children and youths. Outcomes of groups are characterized by clinical observations and a dearth of evaluative studies. All bereaved children should have the opportunity to participate in a support group when a parent, sibling or other relative dies. Well developed services for bereaved children should be a matter of health care policy and quality.

  • 4.
    Björkdahl, Ann
    et al.
    Ersta Sköndal University College, Department of Social Sciences. Göteborgs universitet.
    Esbjörnsson, Eva
    Göteborgs Universitet.
    Ljungqvist, Johan
    Göteborgs Universitet.
    Skoglund, Thomas
    Göteborgs Universitet.
    Stibrant Sunnerhagen, Katharina
    Göteborgs Universitet.
    Decline in cognitive function due to diffuse axonal injury does not necessarily imply a corresponding decline in ability to perform activities2016In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 38, no 10, p. 1006-1015Article in journal (Refereed)
    Abstract [en]

    Purpose: The study explored the direction of change (decline vs. improvement) after diffuse axonal injury (DAI) in the domains of the ICF: body structure, body function, and activity.

    Methods: Thirteen patients with DAI were assessed by using diffusion tensor imaging (DTI) to measure body structure, the Barrow Neurological Institute Screen for Higher Cerebral Functions (BNIS) to measure body function, and the Assessment of Motor and Process Skills (AMPS) to measure activity. The DTI, BNIS, and AMPS were applied at the acute phase (A1), and at 6 and 12 months post-injury (A2 and A3). Visual and statistical analyses were conducted to explore time-dependent changes in the ICF domains.

    Results: Improvements were observed for most patients in all ICF domains from injury until six months. Thereafter, the results diverged, with half of the subjects showing a decline in DTI and BNIS scores between A2–A3, and all but one of the patients exhibiting identical or better A2–A3 AMPS process skill scores.

    Conclusions: From 6 to 12 months post-injury, some patients underwent an ongoing degenerative process, causing a decline in cognitive function. The same decline was not observed in the activity measure, which might be explained by the use of compensatory strategies.

    • Implications for rehabilitation
    • In rehabilitation it is essential to be aware that in some cases with TBI, an ongoing degenerative process in the white matter can be expected, causing an adverse late effect on cognitive function.

    • The cognitive decline, caused by DAI, does not necessarily mean a concurrent decrease in activity performance, possibly explained by the use of compensatory strategies. This suggests that, after the post-acute phase, rehabilitation offering strategy training may be beneficial to enhance every-day functioning.

    • Strategy use requires awareness, which imply the need to assess level of awareness in order to guide rehabilitation.

  • 5.
    Bylund Grenklo, Tove
    et al.
    Karolinska Institutet, Stockholms Sjukhem.
    Kreicbergs, Ulrika
    Karolinska Institutet, Sophiahemmet.
    Hauksdóttir, Arna
    Island. Göteborgs universitet, Sverige..
    Valdimarsdóttir, Unnur A
    Island.
    Nyberg, Tommy
    Karolinska Institutet.
    Steineck, Gunnar
    Karolinska Institutet, Göteborgs universitet.
    Fürst, Carl Johan
    Karolinska Institutet, Stockholms Sjukhem.
    Self-injury in teenagers who lost a parent to cancer: a nationwide, population-based, long-term follow-up.2013In: JAMA pediatrics, ISSN 2168-6203, E-ISSN 2168-6211, Vol. 167, no 2, p. 133-140Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To investigate the risk of self-injury in parentally cancer-bereaved youth compared with their nonbereaved peers.

    DESIGN: Population-based study of cancer-bereaved youth and a random sample of matched population controls.

    SETTING: Sweden in 2009 and 2010.

    PARTICIPANTS: A total of 952 youth (74.8%) confirmed to be eligible for the study returned the questionnaire: 622 (73.1%) of 851 eligible young adults who lost a parent to cancer between the ages of 13 and 16 years, in 2000 to 2003, and 330 (78.4%) of 451 nonbereaved peers.

    MAIN EXPOSURE: Cancer bereavement or nonbreavement during the teenage years.

    MAIN OUTCOME MEASURES: Unadjusted and adjusted odds ratios (ORs) of self-injury after January 1, 2000.

    RESULTS: Among cancer-bereaved youth, 120 (19.5%) reported self-injury compared with 35 (10.6%) of their nonbereaved peers, yielding an OR of 2.0 (95% CI, 1.4-3.0). After controlling for potential confounding factors in childhood (eg, having engaged in self-destructive behavior, having been bullied, having been sexually or physically abused, having no one to share joys and sorrows with, and sex), the adjusted OR was 2.3 (95% CI, 1.4-3.7). The OR for suicide attempts was 1.6 (95% CI, 0.8-3.0).

    CONCLUSIONS: One-fifth of cancer-bereaved youth reported self-injury, representing twice the odds for self-injury in their nonbereaved peers, regardless of any of the adjustments we made. Raised awareness on a broad basis in health care and allied disciplines would enable identification and support provision to this vulnerable group.

  • 6.
    Bylund Grenklo, Tove
    et al.
    Karolinska Institutet, Stockholms Sjukhem.
    Kreicbergs, Ulrika
    Karolinska Institutet, Sophiahemmet.
    Valdimarsdóttir, Unnur A
    Island, USA.
    Nyberg, Tommy
    Karolinska Institutet.
    Steineck, Gunnar
    Karolinska Institutet, Göteborgs universitet.
    Fürst, Carl Johan
    Karolinska Institutet, Stockholms sjukhem, Lunds universitet.
    Self-injury in youths who lost a parent to cancer: nationwide study of the impact of family-related and health-care-related factors.2014In: 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.

  • 7.
    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 earlier.2016In: 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.

  • 8.
    Bylund-Grenklo, Tove
    et al.
    Karolinska Institutet, Stockholms Sjukhem .
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Uggla, Charlotta
    Karolinska Institutet .
    Valdimarsdóttir, Unnur A
    Island, USA.
    Nyberg, Tommy
    Karolinska Institutet.
    Steineck, Gunnar
    Karolinska Institutet, Göteborgs universitet.
    Fürst, Carl Johan
    Karolinska Institutet, Stockholms Sjukhem Foundation, Lunds universitet .
    Teenagers want to be told when a parent's death is near: A nationwide study of cancer-bereaved youths' opinions and experiences.2015In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 54, no 6, p. 944-950Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: We aimed to investigate cancer-bereaved youths' opinions and experiences of being told about a parent's imminent death from cancer and of barriers to this communication.

    MATERIAL AND METHODS: This nationwide population-based survey included 622/851 (73%) youths (aged 18-26) who at age 13-16, 6-9 years earlier had lost a parent to cancer.

    RESULTS: In total 595 of 610 (98%) of the participants stated that teenage children should be informed when the parent's death was imminent (i.e. a matter of hours or days, not weeks). 59% stated that they themselves had been told this, 37% by the parents, 7% by parents and healthcare professionals together and 8% by professionals only. Frequent reasons for why the teenager and parents did not talk about imminent death before loss were that one (n=106) or both (n=25) of the parents together with the teenage child had pretended that the illness was not that serious, or that none of the parents had been aware that death was imminent (n=80). Up to a couple of hours before the loss, 43% of participants had not realized that death was imminent.

    CONCLUSION: In this population-based study virtually all youth who at ages 13-16 had lost a parent to cancer afterwards stated that teenagers should be told when loss is near, i.e. a matter of hours or days, not weeks. Many stated that they had not been given this information and few were informed by professionals, with implications for future improvements in end-of-life care of patients with teenage children.

  • 9.
    Bävits, Nina
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Torpman, Ida
    Ersta Sköndal University College, Department of Health Care Sciences.
    Obotligt cancersjuka patienters tankar om att vilja avsluta sitt liv i förtid: En litteraturstudie2011Independent thesis Basic level (degree of Bachelor), 10 credits / 15 HE creditsStudent thesis
  • 10.
    Carballeira Suarez, Nivia
    et al.
    Umeå Universitet.
    Levi, Richard
    Umeå Universitet.
    Bullington, Jennifer
    Ersta Sköndal University College, Department of Health Care Sciences.
    Regaining health and wellbeing after traumatic spinal cord injury2013In: Journal of Rehabilitation Medicine, ISSN 1650-1977, E-ISSN 1651-2081, Vol. 45, no 10, p. 1023-1027Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Traumatic spinal cord injury is typically a devastating event, leading to permanent physical disability. Despite the severity of the condition, many persons with traumatic spinal cord injury manage to lead both active and independent lives. The aim of this study was to investigate the experience of health and wellbeing of persons living with a traumatic spinal cord injury for at least 20 years. Design and methods: A qualitative design was used. Data was analysed using a phenomenological-hermeneutical method. Rich narratives were obtained from 14 persons with paraplegia due to traumatic spinal cord injury sustained at least 20 years ago. RESULTS: The key finding was that health and wellbeing were attained when persons were able to perceive themselves as being “normal” in everyday relationships and circumstances. The normalization process involved learning to negotiate and/or prevent potentially embarrassing situations by acting in a “parallel world”, covertly “behind the scenes”. CONCLUSION: The subjective experience of wellbeing and health after traumatic spinal cord injury depends upon the ability to prevent or resolve potentially embarrassing situations without this being noticed by others. Performing this work “behind the scenes”, enables persons with traumatic spinal cord injury to interact smoothly with others and thereby be perceived as normal, despite substantial disability.

  • 11.
    Dunberger, Gail
    et al.
    Karolinska institutet.
    Thulin, Helena
    Karolinska institutet.
    Waldenström, Ann-Charlotte
    Göteborgs universitet.
    Lind, Helena
    Karolinska institutet.
    Henningsohn, Lars
    Karolinska institutet.
    Åvall-Lundqvist, Elisabeth
    Karolinska institutet.
    Steineck, Gunnar
    Karolinska institutet, Göteborgs universitet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet.
    Cancer survivors' perception of participation in a long-term follow-up study.2013In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 39, no 1, p. 41-45Article in journal (Refereed)
    Abstract [en]

    Every year medical researchers make contact with a large number of cancer survivors with the aim of evaluating cancer treatment. For this reason we decided to investigate how Swedish cancer survivors perceived their participation in research studies focusing on the long-term consequences of being a survivor of gynaecological or urinary bladder cancer. Data were collected by means of two study-specific postal questionnaires, both consisting of questions covering physical symptoms, well-being and the experience of being a cancer survivor. Both questionnaires also included questions evaluating the participants' experience of being research subjects. The questionnaires were developed in close co-operation with cancer survivors. The study population consisted of 1068 cancer survivors. Of these, 95% (n=1003) reported that they thought the study was valuable and 54% (n=559) that they had been positively affected by participating. Four per cent (n=39) expressed that they had been negatively affected by their participation in the study. The vast majority of the cancer survivors thought that participating in their particular study was valuable.

  • 12.
    Dussel, Veronica
    et al.
    USA.
    Kreicbergs, Ulrika
    Karolinska institutet. Dana-Farber Cancer Institute, Boston, USA..
    Hilden, Joanne M
    USA.
    Watterson, Jan
    USA.
    Moore, Caron
    USA.
    Turner, Brian G
    USA.
    Weeks, Jane C
    USA.
    Wolfe, Joanne
    USA.
    Looking beyond where children die: Determinants and effects of planning a child's location of death.2009In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 37, no 1, p. 33-43Article in journal (Refereed)
    Abstract [en]

    While dying at home may be the choice of many, where people die may be less important than argued. We examined factors associated with parental planning of a child's location of death (LOD) and its effects on patterns of care and parent's experience. In a cross-sectional study of 140 parents who lost a child to cancer at one of two tertiary-level U.S. pediatric hospitals, 88 (63%) planned the child's LOD and 97% accomplished their plan. After adjusting for disease and family characteristics, families whose primary oncologist clearly explained treatment options during the child's end of life and who had home care involved were more likely to plan LOD. Planning LOD was associated with more home deaths (72% vs. 8% among those who did not plan, P<0.001) and fewer hospital admissions (54% vs. 98%, P<0.001). Parents who planned were more likely to feel very prepared for the child's end of life (33% vs. 12%, P=0.007) and very comfortable with LOD (84% vs. 40%, P<0.001), and less likely to have preferred a different LOD (2% vs. 46%, P<0.001). Among the 73 nonhome deaths, planning was associated with more deaths occurring in the ward than in the intensive care unit or other hospital (92% vs. 33%, P<0.001), and fewer children being intubated (21% vs. 48%, P=0.029). Comprehensive physician communication and home care involvement increase the likelihood of planning a child's LOD. Opportunity to plan LOD is associated with outcomes consistent with high-quality palliative care, even among nonhome deaths, and thus may represent a more relevant outcome than actual LOD.

  • 13.
    Eilegård, Alexandra
    et al.
    Karolinska institutet.
    Kreicbergs, Ulrika
    Karolinska institutet.
    Risk of parental dissolution of partnership following the loss of a child to cancer: A population-based long-term follow-up.2010In: Archives of Pediatrics & Adolescent Medicine, ISSN 1072-4710, E-ISSN 1538-3628, Vol. 164, no 1, p. 100-101Article in journal (Refereed)
  • 14.
    Eilegård, Alexandra
    et al.
    Karolinska institutet, Sophiahemmet högskola.
    Steineck, Gunnar
    Göteborgs universitet, Karolinska institutet.
    Nyberg, Tommy
    Göteborgs universitet, Karolinska institutet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet högskola, Göteborgs universitet.
    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.

  • 15.
    Eilegård, Alexandra
    et al.
    Karolinska institutet, Sophiahemmet.
    Steineck, Gunnar
    Göteborgs universitet, Karolinska institutet.
    Nyberg, Tommy
    Karolinska institutet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet.
    Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier.2013In: 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.

  • 16.
    Eilegård Wallin, Alexandra
    et al.
    Karolinska Institutet, Högskolan Dalarna.
    Steineck, Gunnar
    Göteborgs universitet, Karolinska institutet.
    Nyberg, Tommy
    Karolinska Institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Insufficient communication and anxiety in cancer-bereaved siblings: A nationwide long-term follow-up.2016In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 14, no 5, p. 488-494Article in journal (Refereed)
    Abstract [en]

    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.

  • 17.
    Eilertsen, Mary-Elizabeth Bradley
    et al.
    Sør-Trøndelag University College, Trondheim, Norway .
    Eilegård, Alexandra
    Karolinska Institutet.
    Steineck, Gunnar
    Karolinska Institutet, Göteborgs universitet .
    Nyberg, Tommy
    Karolinska Institutet.
    Kreicbergs, Ulrika
    Karolinska Institutet, Sophiahemmet.
    Impact of social support on bereaved siblings' anxiety: a nationwide follow-up.2013In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 30, no 6, p. 301-310Article in journal (Refereed)
    Abstract [en]

    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.

  • 18.
    El Malla, Hanan
    et al.
    Göteborgs universitet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet.
    Steineck, Gunnar
    Göteborgs universitet, Karolinska institutet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    Elborai, Yasser El Sayed
    Cairo University Hospital, Egypt. National Cancer Institute, Cairo, Egypt.
    Ylitalo, Nathalie
    Göteborgs universitet, Karolinska institutet.
    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.

  • 19.
    El Malla, Hanan
    et al.
    Göteborgs universitet.
    Steineck, Gunnar
    Göteborgs universitet, Karolinska institutet.
    Ylitalo Helm, Nathalie
    Göteborgs universitet, Karolinska institutet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    El Sayed Elborai, Yasser
    Egypten.
    Elshami, Mohammad
    Egypten.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet, Sophiahemmet högskola.
    Cancer disclosure-account from a pediatric oncology ward in Egypt.2017In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, 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.

  • 20.
    El Malla, Hanan
    et al.
    Göteborgs universitet.
    Ylitalo Helm, Nathalie
    Göteborgs universitet, Karolinska institutet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    El Sayed Elborai, Yasser
    Children’s Cancer Hospital Cairo, National Cancer Institute, Cairo, Egypt.
    Steineck, Gunnar
    Göteborgs universitet, Karolinska institutet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet.
    Adherence to medication: A nation-wide study from the Children's Cancer Hospital, Egypt.2013In: World journal of psychiatry, ISSN 2220-3206, Vol. 3, no 2, p. 25-33Article in journal (Refereed)
    Abstract [en]

    AIM: To investigate adherence to medical regimen and predictors for non-adherence among children with cancer in Egypt.

    METHODS: We administered two study specific questionnaires to 304 parents of children diagnosed with cancer at the Children's Cancer Hospital in Cairo, Egypt, one before the first chemotherapy treatment and the other before the third. The questionnaires were translated to colloquial Egyptian Arabic, and due, to the high illiteracy level in Egypt an interviewer read the questions in Arabic to each parent and registered the answers. Both questionnaires consisted of almost 90 questions each. In addition, a Case Report Form was filled in from the child's medical journal. The study period consisted of 7 mo (February until September 2008) and we had a participation rate of 97%. Descriptive statistics are presented and Fisher's exact test was used to check for possible differences between the adherent and non-adherent groups. A P-value below 0.05 was considered significant. Software used was SAS version 9.3 for Windows (SAS Institute Inc., Cary, NC, United States).

    RESULTS: Two hundred and eighty-one (90%) parents answered the second questionnaire, regarding their child's adherence behaviour. Approximately two thirds of the children admitted to their third chemotherapy treatment had received medical recommendations upon discharge from the first or second chemotherapy treatment (181/281, 64%). Sixty-eight percent (123/181) of the parents who were given medical recommendations reported that their child did not follow the recommendations. Two main predictors were found for non-adherence: child resistance (111/123, 90%) and inadequate information (100/123, 81%). In the adherent group, 20% of the parents (n = 12/58) reported trust in their child's doctor while 14 percent 8/58 reported trust in the other health-care professionals. Corresponding numbers for the non-adherent group are 8/123 (7%) for both their child's doctor and other health-care professionals. Almost all of the parents expressed a lack of optimism towards the treatment (116/121, 96%), yet they reported an intention to continue with the treatment for two main reasons, for the sake of their child's life (70%) (P = 0.005) and worry that their child would die if they discontinued the treatment (81%) (P < 0.0001).

    CONCLUSION: Non-adherence to medical regimen is common among children diagnosed with cancer in Egypt, the main reasons being child resistance and inadequate information.

  • 21.
    Elmberg, Johan
    et al.
    Högskolan Kristianstad.
    Berg, Charlotte
    Sveriges lantbruksuniversitet (SLU).
    Lerner, Henrik
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Waldenström, Jonas
    Linnéuniversitetet.
    Hessel, Rebecca
    Högskolan Kristianstad.
    Potential disease transmission from wild geese and swans to livestock,poultry and humans: a review of the scientific literature from a One Health perspective2017In: Infection Ecology & Epidemiology, ISSN 2000-8686, E-ISSN 2000-8686, Vol. 7, no 1, article id 1300450Article in journal (Refereed)
    Abstract [en]

    There are more herbivorous waterfowl (swans and geese) close to humans, livestock and poultry than ever before. This creates widespread conflict with agriculture and other human interests, but also debate about the role of swans and geese as potential vectors of disease of relevance for human and animal health. Using a One Health perspective, we provide the first comprehensive review of the scientific literature about the most relevant viral, bacterial, and unicellular pathogens occurring in wild geese and swans. Research thus far suggests that these birds may play a role in transmission of avian influenza virus, Salmonella, Campylobacter, and antibiotic resistance. On the other hand, at present there is no evidence that geese and swans play a role in transmission of Newcastle disease, duck plague, West Nile virus, Vibrio, Yersinia, Clostridium, Chlamydophila, and Borrelia. Finally, based on present knowledge it is not possible to say if geese and swans play a role in transmission of Escherichia coli, Pasteurella, Helicobacter, Brachyspira, Cryptosporidium, Giardia, and Microsporidia. This is largely due to changes in classification and taxonomy, rapid development of identification methods and lack of knowledge about host specificity. Previous research tends to overrate the role of geese and swans as disease vectors; we do not find any evidence that they are significant transmitters to humans or livestock of any of the pathogens considered in this review. Nevertheless, it is wise to keep poultry and livestock separated from small volume waters used by many wild waterfowl, but there is no need to discourage livestock grazing in nature reserves or pastures where geese and swans are present. Under some circumstances it is warranted to discourage swans and geese from using wastewater ponds, drinking water reservoirs, and public beaches. Intensified screening of swans and geese for AIV, West Nile virus and anatid herpesvirus is warranted.

  • 22.
    Fläckman, Birgitta
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Skovdahl, Kirsti
    Norway.
    Fagerberg, Ingegerd
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska institutet.
    Kihlgren, Mona
    Örebro universitet.
    Kihlgren, Annica
    Örebro universitet.
    Consequences of working in elder care during changes and cutbacks in the organisation while education and clinical supervision was provided: A mixed methods study2015In: Open Journal of Nursing, ISSN 2162-5336, E-ISSN 2162-5344, Vol. 5, no 9, p. 813-827Article in journal (Refereed)
    Abstract [en]

    Background: Reorganization and downsizing can disrupt a competent staff and conflicts can arise between what the employee is being asked to do and their knowledge and competences. Reduced job satisfaction among nursing home staff with increased workload and strain can occur. Aim and Objectives: The aim was to investigate the organizational climate and prevalence of burnout symptoms among caregivers over time in three Swedish nursing homes (NH I-III) undergoing organizational changes, while education and clinical supervision were provided. Design: The study design combines qualitative and quantitative methods in a longitudinal two-year follow-up project in NH I-III. Methods: Support through education and clinical supervision was provided for caregivers only at NH I and NH II. At NH I-III caregiver self-assessments and interviews were completed and analysed three different times. Results: NH I revealed improvement and increased innovation over time, while NH II showed a decline with no ability to implement new knowledge. NH III retained a more status quo. Conclusions: Organizational changes and cutbacks, occurring at different times, appeared to cause major stress and frustration among the three personnel groups. They felt guilty about not meeting their perceived obligations, seemed to have lost pride in their work but kept struggling. The changes seemed to over-shadow attempts to improve working conditions through education and clinical supervision initially. Implications for practice: It will be important to learn from reorganizations and the consequences they will have for the staff and quality of care. Important topics for future research are to study financial cutbacks and changes in organizational processes in care of older people to be able to develop a more person centered care for older people.

  • 23.
    Fridh, Isabell
    et al.
    Högskolan i Borås, Göteborgs universitet.
    Kenne Sarenmalm, Elisabeth
    Ersta Sköndal University College, Palliative Research Centre, PRC. Skaraborgs sjukhus.
    Falk, Kristin
    Göteborgs universitet.
    Henoch, Ingela
    Göteborgs universitet.
    Öhlen, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC. Göteborgs universitet.
    Ozanne, Anneli
    Göteborgs universitet.
    Jakobsson Ung, Eva
    Göteborgs universitet.
    Extensive human suffering: a point prevalence survey of patients' most distressing concerns during inpatient care2015In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, p. 444-453Article in journal (Refereed)
    Abstract [en]

    AIM: To explore patients' most distressing concerns during a hospital stay.

    BACKGROUND: The characteristics of hospitalised patients have changed. Care is provided at a higher age, lengths of stay have fallen and the nursing workload is increasing. It is presumed that hospitalised patients are more seriously ill and have more palliative needs than previously. Studies show that inpatients suffer from more distress than similar outpatients although there is a lack of overall knowledge about inpatients' distress and major concerns, regardless of age, diagnosis or care setting.

    METHODS: This study was part of a point prevalence survey (PPS) concerning symptom prevalence. Of the 710 patients who participated in the PPS, 678 (95%) answered an open-ended question in a questionnaire: What is your main concern or what is most distressing or troublesome for you at present? Using a life-world approach, the text was analysed qualitatively and patients' concerns were interpreted in two main dimensions, an intersubjective dimension and a temporal dimension.

    FINDINGS: The patients reported extensive suffering due to illness, symptoms and failing health. Patients were concerned about family members, existential issues and the future. Three aspects of the patients' most distressing concerns were interpreted: The suffering self, The suffering person in close relations and The suffering person in a threatening world.

    CONCLUSION: Hospitalised patients are affected by severe illness, distressing symptoms and existential quandaries, revealing extensive human suffering in the midst of the demanding activities that take place during an ordinary day in a hospital. To support patients and alleviate suffering, hospital staff need to be more sensitive to patients' most distressing concerns. This presupposes a hospital environment in which the value system supports caring and comforting behaviour.

  • 24.
    Fyhr, Sofia
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Yosifpour, Galawish
    Ersta Sköndal University College, Department of Health Care Sciences.
    Vårdpersonalens attityder gentemot äldre patienters sexualitet: En litteraturöversikt2014Independent thesis Basic level (degree of Bachelor), 10 credits / 15 HE creditsStudent thesis
    Abstract [en]

    Background: Sexuality is important for all individuals, then it is a part of the humans physical and mental needs. For older people regardless of sexual orientation (hetero– bi- gay) sexuality is important for the experience of a healthy life. Research shows that many of the older people just lack of love and a physical close contact. Patient ́s sexual expressions in the form of verbal and sexual acts sometimes creates anxiety among the care staff because of their lack of knowledge in this area. This is a problem too as it is the nursing staff tasked with helping to pay the society ́s negative image this topic with a positive image.

    Aim: To highlight professional healthcarer ́s attitudes of older patient́s sexuality.

    Methods: This project is a literature review where twelve scientific articles reviewed. The databases was CINAHL Plus With Full Text, Nursing and Allied Health Source, MEDLINE With Full Text and PubMed. The keywords was staff, nurse, nursing student, attitude, perceptions, experiences, barriers, perspektives, knowledge, older people, older adults, aged residential care, care, sexuality, sexual health.

    Results: Sexual health is a complicated subject for professionals to deal with, discussions about sexual health issues have low priority and routines are not established for this. This result also revealed that health professionals are aware of older people ́s sexual needs but that they lack the skills to handle with its expression. Other influencing factors include age, gender, religion and origin.

    Method – discussion: There are both strength and weaknesses with the selected method. For all involved articles the weaknesses can be that they were written in English, which may lead to misinterpretation when this is not the author ́s native language. What can be both a strength and weakness is that the articles include various participating countries.

    Result – discussion: In the result it was concluded that older peoples sexuality is not a priority in health care and a major influencing factor in this may be that health professionals lack the specialist training include older people and sexuality. The healthcare environment is in most cases not suitable for the elderly to express their sexuality.

  • 25.
    Grenklo, Tove Bylund
    et al.
    Karolinska Institutet, Stockholm Sjukhem Foundation.
    Kreicbergs, Ulrika C
    Karolinska Institutet, Sophiahemmet.
    Valdimarsdóttir, Unnur A
    Karolinska Institutet, University of Iceland, Reykjavík, Iceland, Harvard School of Public Health, Boston, USA.
    Nyberg, Tommy
    Karolinska Institutet.
    Steineck, Gunnar
    Karolinska Institutet, Göteborgs universitet.
    Fürst, Carl Johan
    Karolinska Institutet, Stockholm Sjukhem Foundation, Lunds universitet.
    Communication and trust in the care provided to a dying parent: A nationwide study of cancer-bereaved youths.2013In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 31, no 23, p. 2886-2894Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To 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.

    METHODS: This 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.

    RESULTS: A 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).

    CONCLUSION: Our 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.

  • 26.
    Henoch, Ingela
    et al.
    Göteborgs universitet.
    Lövgren, Malin
    Högskolan Dalarna.
    The influence of symptom clusters and the most distressing concerns regarding quality of life among patients with inoperable lung cancer.2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 3, p. 236-241Article in journal (Refereed)
    Abstract [en]

    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 Iatrogenic 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.

  • 27.
    Henoch, Ingela
    et al.
    Karolinska Institutet, Göteborgs universitet, Bräcke Diakoni, Göteborg.
    Lövgren, Malin
    Högskolan Dalarna, Stockholms Sjukhem.
    Wilde-Larsson, Bodil
    Karlstad universitet, Hedmark University College, Norge.
    Tishelman, Carol
    Karolinska Institutet, Stockholms Sjukhem.
    Perception of quality of care: Comparison of the views of patients' with lung cancer and their family members.2012In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 3-4, p. 585-594Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: To explore potential differences within dyads of patients' with lung cancer and family members' judgment of different aspects of quality of care and relationships between quality of care and personal and health-related characteristics.

    BACKGROUND: High quality of care is important for acceptable quality of life in patients in palliative care. If patients are unable to participate in quality of care assessments or decision-making, family members might often act as proxies, despite the complicated nature of their own situation.

    DESIGN: Cross-sectional survey design.

    METHOD: A patient and family member version of the abbreviated questionnaire Quality from Patients' Perspective, with additional items about perceived health and opinions about care, was mailed to members of the Swedish lung cancer Patient Organisation. Wilcoxon's signed rank test was used to identify potential differences within 51 patient-family member dyads' quality of care ratings. Relationships between Quality from Patients' Perspective dimensions and demographic and health-related variables were examined with Spearman's correlations.

    RESULTS: Patient-family member dyads had high levels of agreement in ratings of perceived reality of quality of care. Family members generally rated the subjective importance of individual items higher than did the patient in the dyad, with significant difference in the dimension 'socio-cultural approach'. Older patients were found to rate the physical-technical conditions higher than younger patients, in relation to perceived reality but not subjective importance. Women family members were found to rate the subjective importance of medical-technical competence, identity-oriented approach and socio-cultural approach significantly higher than men did.

    CONCLUSIONS: Patients with lung cancer and their family members agree in ratings of the perceived reality, but they differ more in ratings of the subjective importance of quality of care. When patients are unable to communicate their preferences, family members' opinions could be used as proxies concerning concrete aspects of quality of care. Concerning more subjective aspects, family members' ratings should be interpreted with precaution, as it could diverge from patients' own opinion.

    RELEVANCE TO CLINICAL PRACTICE: The perceptions of the importance of different aspects of quality of care were less related to health status than were judgments of quality of care received. This might suggest that the care patients received fulfilled neither the patients' nor family members' expectations, which is an important message to healthcare professionals and which would demand further exploration.

  • 28. Henoch, Ingela
    et al.
    Sawatzky, Richard
    Falk, Hanna
    Fridh, Isabell
    Jakobsson Ung, Eva
    Kenne Sarenmalm, Elisabeth
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Ozanne, Anneli
    Öhlen, Joakim
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Falk, Kristin
    Symptom distress profiles in hospitalized patients in sweden: a cross-sectional study.2014In: Research in Nursing & Health, ISSN 0160-6891, E-ISSN 1098-240X, Vol. 37, no 6, p. 512-523Article in journal (Refereed)
    Abstract [en]

    Symptom distress profiles of patients with a variety of diagnoses at two hospitals in Sweden were examined using a point-prevalence cross-sectional survey design. The sample included 710 patients present on internal medicine, surgery, geriatric, and oncology acute care hospital wards of each hospital on a single day. Symptom distress data were collected via structured interviews using a 0-10 numeric rating scale (NRS). Fatigue was the most prevalent symptom, experienced by 76.2% of the patients, followed by pain (65.2%) and sleeping difficulties (52.8%). Symptoms were fairly distressing (median NRS 5-6). Patients experiencing high distress from fatigue and pain were more likely to be female, living alone, and to have more symptoms. Latent class analysis revealed three symptom distress profiles that differed with respect to the degree of distress and number of symptoms. The profiles were not substantially differentiated by diagnoses. Symptom distress needs to be assessed and treated on an individual basis, rather than predicting distress levels based on diagnosis alone. © 2014 Wiley Periodicals, Inc.

  • 29.
    Holm, Maja
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Wengström, Yvonne
    Karolinska Institutet, Institutionen för neurobiologi, vårdvetenskap och samhälle.
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    The Process of Preparedness for Caregiving among Family Members in Palliative Home Care2014In: Palliative Medicine / [ed] Catherine Walshe, Sage Publications, 2014, p. 622-623Conference paper (Refereed)
  • 30.
    Hunt, Hayley
    et al.
    Karolinska institutet.
    Valdimarsdottir, Unnur
    Karolinska institutet.
    Mucci, Lorelei
    Karolinska institutet.
    Kreicbergs, Ulrika
    Dana Farber Cancer Institute, USA. Karolinska institutet.
    Steineck, Gunnar
    Karolinska institutet.
    When death appears best for the child with severe malignancy: a nationwide parental follow-up.2006In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 20, no 6, p. 567-577Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Loss of a child to malignancy is associated with long-term morbidity among surviving parents. This study aims to identify particular sources of stress among parents of children with severe malignancy.

    METHODS: We attempted to contact all parents in Sweden who lost a child to cancer between 1992 and 1997. Some 449 parents answered an anonymous questionnaire, including a question regarding whether they ever thought that death would be best for the child with severe malignancy.

    RESULTS: Mothers whose children were unable to communicate during their last week of life were more likely to think that death would be best for the child (relative risk (RR): 1.6; 95% confidence interval (CI): 1.2-2.1). Fathers whose children faced six years or more with malignancy were more likely to think that death would be best for their child (RR: 2.1; 95% CI: 1.3-3.5).

    CONCLUSIONS: The inability of the child with severe malignancy to communicate increases the likelihood of mothers thinking that death would be best for the child, while longer duration of the child's illness increases the occurrence of this thought among fathers.

  • 31.
    Jalmsell, L
    et al.
    Karolinska institutet. Visby lasarett..
    Onelöv, E
    Visby lasarett.
    Steineck, G
    Karolinska institutet.
    Henter, J-I
    Karolinska institutet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet högskola.
    Hematopoietic stem cell transplantation in children with cancer and the risk of long-term psychological morbidity in the bereaved parents.2011In: Bone Marrow Transplantation, ISSN 0268-3369, E-ISSN 1476-5365, Vol. 46, no 8, p. 1063-1070Article in journal (Refereed)
    Abstract [en]

    We have investigated whether hematopoietic stem cell transplantation (HSCT) before the death of children with cancer has a long-term effect on the physical and psychological well-being of the parents. A nationwide questionnaire was sent out to all bereaved parents in Sweden who had lost a child due to a malignancy from 1992 to 1997. Self-reported levels of anxiety, depression and quality of life as well as overall psychological and physical well-being in bereaved parents of children who underwent HSCT were compared with bereaved parents whose children did not receive a transplant. Bereaved parents whose children underwent HSCT had, according to a visual digital scale, an increased relative risk (RR) of long-term anxiety (RR 1.5; 95% confidence interval (CI) 1.0-2.1), poor psychological well-being (RR1.3; 95% CI 1.1-1.5), low quality of life (RR 1.4; 95% CI 1.2-1.7) and poor physical health (RR 1.3; 95% CI 1.1-1.5), whereas the State-Trait Anxiety Inventory and 'The Göteborg Quality of Life Instrument' were non-significantly increased (RR 1.3; 95% CI 0.8-2.3 and RR 1.7; 95% CI 0.9-3.3, respectively). The risks of these consequences were further augmented in case of multiple HSCT. We suggest that bereaved parents of children undergoing HSCT may be at greater risk of decreased psychological well-being than other bereaved parents of children with cancer.

  • 32.
    Jalmsell, Li
    et al.
    Uppsala universitet, Visby lasarett.
    Forslund, Martin
    Uppsala universitet.
    Hansson, Mats G
    Uppsala universitet.
    Henter, Jan-Inge
    Karolinska institutet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet.
    Frost, Britt-Marie
    Uppsala universitet.
    Transition to noncurative end-of-life care in paediatric oncology: A nationwide follow-up in Sweden2013In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 102, no 7, p. 744-748Article in journal (Refereed)
    Abstract [en]

    AIM: To estimate whether and when children dying from a malignancy are recognized as being beyond cure and to study patterns of care the last weeks of life.

    METHODS: A nationwide retrospective medical record review was conducted. Medical records of 95 children (60% of eligible children) who died from a malignancy 2007-2009 in Sweden were studied.

    RESULTS: Eighty-three children (87%) were treated without curative intent at the time of death. Children with haematological malignancies were less likely to be recognized as being beyond cure than children with brain tumours [relative risks (RR) 0.7; 95% confidence interval (CI) 0.6-0.9] or solid tumours (RR 0.8; 0.6-1.0). The transition to noncurative care varied from the last day of life to over four years prior to death (median 60 days). Children with haematological malignancies were treated with a curative intent closer to death and were also given chemotherapy (RR 5.5; 1.3-22.9), transfusions (RR 2.0; 1.0-4.0) and antibiotics (RR 5.3; 1.8-15.5) more frequently than children with brain tumours the last weeks of life.

    CONCLUSION: The majority of children dying from a malignancy were treated with noncurative intent at the time of death. The timing of a transition in care varied with the diagnoses, being closer to death in children with haematological malignancies.

  • 33.
    Jalmsell, Li
    et al.
    Uppsala universitet, Visby lasarett.
    Kontio, Taru
    Karolinska institutet.
    Stein, Maria
    Karolinska institutet.
    Henter, Jan-Inge
    Karolinska institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet, Sophiahemmet.
    On the Child's Own Initiative: Parents Communicate with Their Dying Child About Death.2015In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 39, no 1-5, p. 111-117Article in journal (Refereed)
    Abstract [en]

    Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how bereaved parents communicated about death with their child, dying from a malignancy. Communication was often initiated by the child and included communication through narratives such as fairy tales and movies and talking more directly about death itself. Parents also reported that their child prepared for death by giving instructions about his or her grave or funeral and giving away toys.

  • 34.
    Jalmsell, Li
    et al.
    Karolinska institutet.
    Kreicbergs, Ulrika
    Karolinska institutet, Dana Farber Cancer Institute, Boston, USA.
    Onelöv, Erik
    Karolinska institutet.
    Steineck, Gunnar
    Karolinska institutet, Göteborgs universitet.
    Henter, Jan-Inge
    Karolinska institutet.
    Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents.2010In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 54, no 5, p. 751-757Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss.

    PROCEDURE: We contacted parents in Sweden who had lost a child to a malignancy 1992-1997. The parents were asked to assess symptoms affecting their child's well-being during his or her last month of life, and their own current psychological well-being.

    RESULTS: Altogether 449/561 (80%) eligible parents supplied information on 19 specific symptoms that may occur in children with a malignancy and how each of these symptoms had affected their child's well-being during his or her last month of life (not applicable, none, low, moderate, or severe). These results were linked to questions concerning the parents' self-assessed mental health. Parents of children who were affected by disturbed sleep also had increased risk to develop these symptoms; RR 2.0 [1.4-2.9] for depression, 1.8 [1.3-2.5] for anxiety, 1.5 [1.2-1.8] for decreased psychological well-being, and 1.5 [1.3-1.9] for decreased quality of life.

    CONCLUSIONS: Bereaved parents whose children were affected by anxiety or disturbed sleep due to anxiety or pain had an increased risk of long-term psychological morbidity. Reducing psychological complications in seriously ill children may also improve the psychological well-being in bereaved parents.

  • 35. Jalmsell, Li
    et al.
    Kreicbergs, Ulrika
    Karolinska institutet, Dana Farber Cancer Institute, USA..
    Onelöv, Erik
    Steineck, Gunnar
    Henter, Jan-Inge
    Symptoms affecting children with malignancies during the last month of life: A nationwide follow-up.2006In: Pediatrics, ISSN 0031-4005, E-ISSN 1098-4275, Vol. 117, no 4, p. 1314-1320Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: In a population-based nationwide survey, we aimed to study symptoms in children with malignancies during the last month of their lives. Understanding which symptoms affect children in the terminal phase of disease is crucial to improve palliative care.

    METHODS: We attempted to contact all parents in Sweden who had lost a child to cancer during a 6-year period. The parents were asked, through an anonymous postal questionnaire, about symptoms that affected the child's sense of well-being during the last month of life.

    RESULTS: Information was supplied by 449 (80%) of 561 eligible parents. The symptoms most frequently reported with high or moderate impact on the child's well-being were: physical fatigue (86%), reduced mobility (76%), pain (73%), and decreased appetite (71%). Irrespective of the specific malignancy, physical fatigue was the most frequently reported symptom, and pain was among the 3 most frequently reported. Children who died at 9 to 15 years of age were reported to be moderately or severely affected, by a number of symptoms, significantly more often than other children. The gender of the reporting parent had no significant bearing on any of the symptoms reported.

    CONCLUSIONS: The most frequently reported symptoms in children with malignancies to be aware of and possibly address during the terminal phase are physical fatigue, reduced mobility, pain, and decreased appetite. Children aged 9 to 15 years are reported to be moderately or severely affected by more symptoms than children in other age groups. Mothers and fathers report a similar prevalence of symptoms.

  • 36.
    Jalmsell, Li
    et al.
    Uppsala universitet, Visby lasarett.
    Lövgren, Malin
    Karolinska Institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Henter, Jan-Inge
    Karolinska institutet.
    Frost, Britt-Marie
    Uppsala universitet.
    Children with cancer share their views: tell the truth but leave room for hope.2016In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 105, no 9, p. 1094-1099Article in journal (Refereed)
    Abstract [en]

    AIM: One in five children diagnosed with cancer will die from the disease. Few studies have focused on how children with cancer want to receive bad news, such as when no more treatment options are available, and that was the aim of this study.

    METHODS: We conducted individual interviews with ten children with cancer, aged seven to 17 years, at a single paediatric oncology unit in central Sweden. Interviews were audiotaped and analysed with systematic text condensation. Bad news was defined as information about a potentially fatal outcome, such as a disease relapse, or information that the treatment administered was no longer working and that there was no more treatment possible.

    RESULTS: All children expressed that they wanted truthful information, and they did not want to be excluded from bad news regarding their illness. They wanted to be informed as positively as possible, allowing them to maintain hope, and in words that they could understand. They also wanted to receive any bad news at the same time as their parents.

    CONCLUSION: Children with cancer want to be fully informed about their disease, but they also wanted it to be relayed as positively as possible so that they could stay hopeful. This article is protected by copyright. All rights reserved.

  • 37.
    Karlstedt, M
    et al.
    Karolinska institutet.
    Fereshtehnejad, S M
    Karolinska institutet.
    Winnberg, Elisabeth
    Ersta Sköndal University College, Department of Health Care Sciences.
    Aarsland, D
    Karolinska institutet.
    Lökk, J
    Karolinska institutet.
    Psychometric properties of the mutuality scale in Swedish dyads with Parkinson's disease.2017In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 136, no 2, p. 122-128Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: The 15-item mutuality scale (MS) has been used in several neurological conditions assessing the quality of relationship associations with negative effects of the caregiving situation. The aim of this study was to translate the original MS into Swedish and assess its psychometric properties in Parkinson's disease (PD).

    MATERIALS AND METHODS: Following the forward-backward translation method, the scale was evaluated regarding linguistic correctness at a conceptual level and user-friendliness. The scale was filled out by a sample of 50 care dyads where one was having PD. Scale assumptions and scale structure were evaluated using floor/ceiling effect and principal component analyses (PCA) with promax rotation. Internal consistency was evaluated using Cronbach's alpha and mean inter-item correlation coefficients.

    RESULTS: The Swedish MS was evaluated as user-friendly and relevant by the participants. The scale demonstrated no floor/ceiling effect and showed high internal consistency (α≥0.93) with a mean inter-item correlation coefficient of ≥0.5. Through the PCA, a two factor solution emerged, which accounted for 67% and 64% of the variance of the MS score by PD-partners and PD-patients, respectively. However, some variables were complex and discarded in the final solution.

    CONCLUSION: Our findings provide initial support of the Swedish MS as a user-friendly and useful instrument with acceptable psychometric properties even though more research is needed to evaluate the existence of subscales.

  • 38.
    Kreicbergs, Ulrika C
    et al.
    Dana Farber Cancer Institute, Boston, USA. Karolinska institutet.
    Lannen, Patrizia
    Onelov, Erik
    Wolfe, Joanne
    Parental grief after losing a child to cancer: impact of professional and social support on long-term outcomes.2007In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 25, no 22, p. 3307-3312Article in journal (Refereed)
    Abstract [en]

    PURPOSE: It is still uncertain whether or not parents can ever come to terms with the loss of a child and whether professional or social support facilitate the long-term grief process.

    METHODS: A Swedish population-based study, which sent an anonymous, mail-in questionnaire to parents who had lost a child to a malignancy 4 to 9 years earlier, gained the participation of 449 (80%) of 561 parents. Parents were asked whether, and to what extent, they had worked through their grief. Questions were also asked regarding those who provided parents with support. We examined candidate factors to determine their associations with greater likelihood of working through parental grief.

    RESULTS: Overall, most parents (74%) stated that they had worked through their grief "a lot" or "completely" at the time of the follow-up. Parents who had shared their problems with others during the child's illness (fathers: relative risk [RR], 3.0; 95% CI, 1.8 to 5.0; mothers: RR 1.9; 95% CI, 1.2 to 2.8) and who had access to psychological support during the last month of their child's life (fathers: RR 1.4; 95% CI, 1.0 to 1.8; mothers: RR 1.3; 95% CI, 1.1 to 1.6) were more likely to have worked through their grief. In cases where health care staff offered parents counseling during the child's last month, the parents were more likely to have worked through their grief (fathers: RR 1.5; 95% CI, 1.2 to 1.8; mothers; RR 1.2; 95% CI, 1.1 to 1.4).

    CONCLUSION: Most parents eventually work through the grief associated with losing a child to cancer. In the long term, sharing the emotional burden with others facilitates the grieving process.

  • 39.
    Kreicbergs, Ulrika
    et al.
    Karolinska Institutet.
    Valdimarsdóttir, Unnur
    Onelöv, Erik
    Björk, Olle
    Steineck, Gunnar
    Henter, Jan-Inge
    Care-related distress: a nationwide study of parents who lost their child to cancer.2005In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 23, no 36, p. 9162-9171Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Palliative care is an important part of cancer treatment. However, little is known about how care-related factors affect bereaved intimates in a long-term perspective. We conducted a population-based, nationwide study addressing this issue, focusing on potential care-related stressors in parents losing a child to cancer.

    METHODS: In 2001, we attempted to contact all parents in Sweden who had lost a child to cancer in 1992 to 1997. The parents were asked, through an anonymous postal questionnaire, about their experience of the care given and to what extent these experiences still affect them today.

    RESULTS: Information was supplied by 449 (80%) of 561 eligible parents. Among 196 parents of children whose pain could not be relieved, 111 (57%) were still affected by it 4 to 9 years after bereavement. Among 138 parents reporting that the child had a difficult moment of death, 78 (57%) were still affected by it at follow-up. The probability of parents reporting that their child had a difficult moment of death was increased (relative risk = 1.4; 95% CI, 1.0 to 1.8) if staff were not present at the moment of death. Ten percent of the parents (25 of 251 parents) were not satisfied with the care given during the last month at a pediatric hematology/oncology center; the corresponding figure for care at other hospitals was 20% (33 of 168 parents; P = .0163).

    CONCLUSION: Physical pain and the moment of death are two important issues to address in end-of-life care of children with cancer in trying to reduce long-term distress in bereaved parents.

  • 40.
    Kreicbergs, Ulrika
    et al.
    Karolinska institutet.
    Valdimarsdóttir, Unnur
    Karolinska institutet.
    Onelöv, Erik
    Karolinska institutet.
    Henter, Jan-Inge
    Karolinska institutet.
    Steineck, Gunnar
    Karolinska institutet.
    Anxiety and depression in parents 4-9 years after the loss of a child owing to a malignancy: a population-based follow-up.2004In: Psychological Medicine, ISSN 0033-2917, E-ISSN 1469-8978, Vol. 34, no 8, p. 1431-1441Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Some consider the loss of a child as the most stressful life event. When the death is caused by a malignancy, the parents are commonly exposed not only to their own loss, but also to the protracted physical and emotional suffering of the child. We investigated parental risk of anxiety and depression 4-9 years after the loss of a child owing to a malignancy.

    METHOD: In 2001, we attempted to contact all parents in Sweden who had lost a child due to a malignancy during 1992--1997. We used an anonymous postal questionnaire and utilized a control group of non-bereaved parents with a living child.

    RESULTS: Participation among bereaved parents was 449/561 (80 %); among non-bereaved 457/659 (69%). We found an increased risk of anxiety (relative risk 1.5, 95 % confidence interval 1.1-1.9) and depression (relative risk 1.4, 95 % confidence interval 1.1-1.7) among bereaved parents compared with non-bereaved. The risk of anxiety and depression was higher in the period 4-6 years after bereavement than in the 7-9 years period, during which the average excess risks approached zero. Psychological distress was overall higher among bereaved mothers and loss of a child aged 9 years or older implied an increased risk, particularly for fathers.

    CONCLUSIONS: Psychological morbidity in bereaved parents decreases to levels similar to those among non-bereaved parents 7-9 years after the loss. Bereaved mothers and parents who lose a child 9 years or older have on average an excess risk for long-term psychological distress.

  • 41.
    Kreicbergs, Ulrika
    et al.
    Karolinska institutet.
    Valdimarsdóttir, Unnur
    Karolinska institutet.
    Onelöv, Erik
    Karolinska institutet.
    Henter, Jan-Inge
    Karolinska institutet.
    Steineck, Gunnar
    Karolinska institutet.
    Talking about death with children who have severe malignant disease.2004In: New England Journal of Medicine, ISSN 0028-4793, E-ISSN 1533-4406, Vol. 351, no 12, p. 1175-1186Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: One of the questions faced by the parents of a child who is terminally ill with a malignant disease is whether or not they should talk about death with their child.

    METHODS: In 2001, we attempted to contact all parents in Sweden who had lost a child to cancer between 1992 and 1997. Among 561 eligible parents, 449 answered a questionnaire, and 429 stated whether or not they had talked about death with their child.

    RESULTS: None of the 147 parents who talked with their child about death regretted it. In contrast, 69 of 258 parents (27 percent) who did not talk with their child about death regretted not having done so. Parents who sensed that their child was aware of his or her imminent death were more likely to regret not having talked about it (47 percent, as compared with 13 percent of parents who did not sense this awareness in their child; relative risk, 3.7; 95 percent confidence interval, 2.3 to 6.0). The same variable was related to having talked about death (50 percent vs. 13 percent; relative risk, 3.8; 95 percent confidence interval, 2.6 to 5.6), as was being religious (42 percent vs. 25 percent; relative risk, 1.7; 95 percent confidence interval, 1.2 to 2.3). The child's age was related to both having talked about death and the parents' regretting not having talked about it.

    CONCLUSIONS: Parents who sense that their child is aware of his or her imminent death more often later regret not having talked with their child than do parents who do not sense this awareness in their child; overall, no parent in this cohort later regretted having talked with his or her child about death.

  • 42.
    Kreicbergs, Ulrika
    et al.
    Karolinska institutet.
    Valdimarsdóttir, Unnur
    Karolinska institutet.
    Steineck, Gunnar
    Karolinska institutet.
    Henter, Jan-Inge
    Karolinska institutet.
    A population-based nationwide study of parents' perceptions of a questionnaire on their child's death due to cancer2004In: The Lancet, ISSN 0140-6736, E-ISSN 1474-547X, Vol. 364, no 9436, p. 787-789Article in journal (Refereed)
    Abstract [en]

    A proposed nationwide postal questionnaire to Swedish parents who had lost a child due to cancer between 1992 and 1997 was denied approval by the local ethics committee. However, a pilot study to assess the harm and benefit of the questionnaire was approved. 95% of parents found the pilot study valuable; thus, we were allowed to proceed with the main study, which consisted of 129 questions about the child's care and death and five about the parents' perceptions of the study. 423 (99%) parents found the investigation valuable, 285 (68%) were positively affected, and 123 (28%) were negatively affected (10 [2%] of whom, very much). Although the numerical data cannot be directly translated to ethical conclusions, they can provide guidance for future ethical decisions.

  • 43. Lannen, Patrizia K
    et al.
    Wolfe, Joanne
    Prigerson, Holly G
    Onelov, Erik
    Kreicbergs, Ulrika C
    Karolinska institutet. Dana-Farber Cancer Institut, Boston, USA.
    Unresolved grief in a national sample of bereaved parents: Impaired mental and physical health 4 to 9 years later.2008In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 26, no 36, p. 5870-5876Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To assess unresolved parental grief, the associated long-term impact on mental and physical health, and health service use.

    PATIENTS AND METHODS: This anonymous, mail-in questionnaire study was performed as a population-based investigation in Sweden between August 2001 and October 2001. Four hundred forty-nine parents who lost a child as a result of cancer 4 to 9 years earlier completed the survey (response rate, 80%). One hundred ninety-one (43%) of the bereaved parents were fathers, and 251 (56%) were mothers. Bereaved parents were asked whether or not, and to what extent, they had worked through their grief. They were also asked about their physical and psychological well-being. For outcomes of interest, we report relative risk (RR) with 95% CIs as well as unadjusted odds ratios and adjusted odds ratios.

    RESULTS: Parents with unresolved grief reported significantly worsening psychological health (fathers: RR, 3.6; 95% CI, 2.0 to 6.4; mothers: RR, 2.9; 95% CI, 1.9 to 4.4) and physical health (fathers: RR, 2.8; 95% CI, 1.8 to 4.4; mothers: RR, 2.3; 95% CI, 1.6 to 3.3) compared with those who had worked through their grief. Fathers with unresolved grief also displayed a significantly higher risk of sleep difficulties (RR, 6.7; 95% CI, 2.5 to 17.8). Mothers, however, reported increased visits with physicians during the previous 5 years (RR, 1.7; 95% CI, 1.1 to 2.6) as well as a greater likelihood of taking sick leave when they had not worked through their grief (RR, 2.1; 95% CI, 1.2 to 3.5).

    CONCLUSION: Parents who have not worked through their grief are at increased risk of long-term mental and physical morbidity, increased health service use, and increased sick leave.

  • 44. Lannen, Patrizia
    et al.
    Wolfe, Joanne
    Mack, Jennifer
    Onelov, Erik
    Nyberg, Ullakarin
    Kreicbergs, Ulrika
    Karolinska institutet. Dana Farber Cancer Institite, Boston, USA .
    Absorbing information about a child's incurable cancer.2010In: Oncology, ISSN 0030-2414, E-ISSN 1423-0232, Vol. 78, no 3-4, p. 259-266Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To assess parents' ability to absorb information that their child's cancer was incurable and to identify factors associated with parents' ability to absorb this information.

    PATIENTS AND METHODS: An anonymous mail-in questionnaire study was performed as a population-based investigation in Sweden between August and October of 2001. 449 parents who lost a child to cancer 4-9 years earlier (response rate 80%) completed the survey. 191 (43%) of the bereaved parents were fathers and 251 (56%) were mothers.

    RESULTS: Sixty percent of parents (n = 258) reported that they were able to absorb the information that their child's illness was incurable. Parents were better able to absorb this information when the information was given in an appropriate manner (RR 1.6; CI 1.3-2.0), when they shared their problems with others during the child's illness course (RR 1.4; CI 1.1-1.8) and when they had no history of depression (RR 1.3; CI 1.0-1.8). Parents who reported that they were able to absorb the information were more likely to have expressed their farewells to the child in their desired manner (RR 1.3; CI 1.0-1.5).

    CONCLUSIONS: Parents who received information that their child's illness was incurable in an appropriate manner are more likely to absorb that information. Whether or not parents are able to absorb the information that their child's cancer is incurable has implications in terms of preparation for the child's impending death.

  • 45.
    Lerner, Henrik
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Berg, Charlotte
    Sveriges lantbruksuniversitet (SLU)..
    A Comparison of Three Holistic Approaches to Health: One Health, EcoHealth, and Planetary Health2017In: Frontiers in Veterinary Science, E-ISSN 2297-1769Article in journal (Refereed)
    Abstract [en]

    Several holistic and interdisciplinary approaches exist to safeguard health. Three of the most influential concepts at the moment, One Health, EcoHealth, and Planetary Health, are analyzed in this paper, revealing similarities and differences at the theoretical conceptual level. These approaches may appear synonymous, as they all promote the underlying assumption of humans and other animals sharing the same planet and the same environmental challenges, infections and infectious agents as well as other aspects of physical—and possibly mental—health. However, we would like to illuminate the differences between these three concepts or approaches, and how the choice of terms may, deliberately or involuntary, signal the focus, and underlying values of the approaches. In this paper, we have chosen some proposed and well-known suggestions of definitions. In our theoretical analysis, we will focus on at least two areas. These are (1) the value of the potential scientific areas which could be included and (2) core values present within the approach. In the first area, our main concern is whether the approaches are interdisciplinary and whether the core scientific areas are assigned equal importance. For the second area, which is rather wide, we analyze core values such as biodiversity, health, and how one values humans, animals, and ecosystems. One Health has been described as either a narrow approach combining public health and veterinary medicine or as a wide approach as in the wide-spread “umbrella” depiction including both scientific fields, core concepts, and interdisciplinary research areas. In both cases, however, safeguarding the health of vertebrates is usually in focus although ecosystems are also included in the model. The EcoHealth approach seems to have more of a biodiversity focus, with an emphasis on all living creatures, implying that parasites, unicellular organisms, and possibly also viruses have a value and should be protected. Planetary Health, on the other hand, has been put forward as a fruitful approach to deal with growing threats in the health area, not least globally. We conclude that there are actually important differences between these three approaches, which should be kept in mind when using any of these terms.

  • 46.
    Lövgren, Malin
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Barncancerfonden,
    Barncancerfonden.
    Att ha ett syskon med cancer: Information till föräldrar2016Book (Other academic)
    Abstract [sv]

    Den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Den är tänkt att ge föräldrar stöd i hur de kan synliggöra syskon, som ofta hamnar i skuggan av en syster eller bror som insjuknar i cancer.

  • 47.
    Lövgren, Malin
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Barncancerfonden,
    Barncancerfonden.
    Jag då!: Till dig som har ett syskon med cancer2016Book (Other academic)
    Abstract [sv]

    Den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Den här skriften vänder sig till dig som har en bror eller syster med cancer och är tänkt att ge stöd, när livet ställs på ända.

  • 48.
    Lövgren, Malin
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Barncancerfonden,
    Barncancerfonden.
    När det värsta har hänt: Hur föräldrar kan stötta syskon som mist2016Book (Other academic)
    Abstract [sv]

    Den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Syftet med skriften är att ge föräldrar stöd i hur de kan möta syskon som mist en bror eller syster i cancer.

  • 49.
    Lövgren, Malin
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Barncancerfonden,
    Barncancerfonden.
    Saknar dig!: Till dig som förlorat ett syskon i cancer2016Book (Other academic)
    Abstract [sv]

    den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Tanken med skriften är att ge stöd till dig som förlorat en bror eller syster i cancer.

  • 50.
    Lövgren, Malin
    et al.
    Karolinska Institutet.
    Bylund-Grenklo, Tove
    Karolinska Institutet, Linnéuniversitetet.
    Jalmsell, Li
    Visby Lasarett, Uppsala universitet.
    Wallin, Alexandra Eilegård
    Högskolan Dalarna.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families.2016In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 33, no 4, p. 297-305Article in journal (Refereed)
    Abstract [en]

    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.

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