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  • 1.
    Angelhoff, Charlotte
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Weber Falk, Megan
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Communication, self-esteem and prolonged grief in parent-adolescent dyads, 1-4 years following the death of a parent to cancer2021In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 50, article id 101883Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Talking and grieving together may be advantageous for maintaining belief in a meaningful future and can help bereaved adolescents and their parents to cope better with the situation. The aim of this study was to explore communication, self-esteem and prolonged grief in adolescent-parent dyads, following the death of a parent to cancer.

    METHOD: This study has a descriptive and comparative design. Twenty family dyads consisting of parentally bereaved adolescents (12-19 years) and their widowed parents completed the Parent and Adolescent Communication Scale, Rosenberg Self-Esteem Scale and Prolonged Grief-13, 1-4 years following the death of a parent.

    RESULTS: Twelve family dyads reported normal-high parent-adolescent communication, 11 dyads rated normal-high self-esteem. Two adolescents and three parents scored above the cut-off for possible prolonged grief disorder (≥35), none of these were in the same dyads. There was a difference (p < .05) between boys (mean 40.0) and girls (mean 41.9) with regard to open family communication, as assessed by parents. Girls reported lower self-esteem (mean 26.0) than boys (mean 34.1, p < .01).

    CONCLUSIONS: This study provides insights from parentally bereaved families which indicate that despite experiencing the often-traumatic life event of losing a parent or partner, most participants reported normal parent-adolescent communication, normal self-esteem and few symptoms of prolonged grief. The potential usefulness of identifying families who may need professional support in family communication following the death of a parent is discussed.

  • 2.
    Arnberg, Filip K.
    et al.
    Uppsala universitet.
    Bondjers, Kristina
    Uppsala universitet.
    Sveen, Josefin
    Uppsala universitet.
    Panel discussion: early interventions after traumatic events2015In: European Journal of Psychotraumatology, ISSN 2000-8198, E-ISSN 2000-8066, Vol. 6, article id 28636Article in journal (Other academic)
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  • 3. Bergquist, M.
    et al.
    Sveen, Josefin
    Huss, Fredrik
    Sjöberg, Folke
    Willebrand, Mimmie
    Psychological health and appearance after burns in children and adolescents aged 5-182010Conference paper (Refereed)
  • 4.
    Bondjers, Kristina
    et al.
    Uppsala universitet.
    Sveen, Josefin
    Uppsala universitet.
    Willebrand, Mimmie
    Uppsala universitet.
    Psychometric Properties of the PTSD Checklist for DSM-5 in parents to children with burns (018)2015Conference paper (Refereed)
    Abstract [en]

    Introduction Symptoms of post-traumatic stress disorder (PTSD) is a common problem among parents of children with burns. However, there is a paucity of evaluated screening tools for this population. The aim was to evaluate the psychometric properties of the PTSD Checklist (PCL), which is recently revised in accordance to the Diagnostic and statistical manual of mental disorders, 5th ed.  

    Methods The participating parents (N= 62, mean age= 38) completed self-report questionnaires 0.8-5.6 years after their child’s burn. Measures were the PCL-5 (consisting of four subscales; Intrusion, Avoidance, Negative alterations in cognitions and mood, and Arousal and reactivity), the Impact of Event Scale-Revised (with three subscales; Intrusion, Avoidance and Hyperarousal) and the Perceived Stress Scale. The children had a TBSA burned ranging from 1 to 31 % and were 0.1-15.0 years of age at injury.

    Results The average PCL-5 scores were low to moderate and indicated that no parent was above the recommended preliminary cut off of 38 for PTSD. Cronbach’s alpha values were acceptable and varied between 0.56 and 0.77 for the four PCL-5 subscales and mean inter-item correlations ranged from 0.22 to 0.73. The PCL-5 subscales were positively correlated with the corresponding IES-R subscales as well as the total PSS score (p<.05). There were no associations between the PCL-5 and  burn severity (TBSA, TBSA-FT, and LOS), time since injury, child age or gender, or parent gender. 

    Conclusion In conclusion, the PCL-5 had high internal consistency and evaluation of concurrent validity suggested moderate associations with other measures of traumatic stress and perceived stress as expected. The moderate associations with other measures of stress is to be expected, taking into account the slightly different constructs targeted by the three measures in this study. This first study suggests that the PCL-5 is a psychometrically sound instrument that deserves further evaluation as a screening tool for parents of children with burns.

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  • 5.
    Cernvall, Martin
    et al.
    Uppsala universitet.
    Sveen, Josefin
    Uppsala universitet.
    Bergh Johannesson, Kerstin
    Uppsala universitet.
    Arnberg, Filip
    Uppsala universitet.
    A pilot study of user satisfaction and perceived helpfulness of the Swedish version of the mobile app PTSD Coach.2018In: European Journal of Psychotraumatology, ISSN 2000-8066, E-ISSN 2000-8066, Vol. 9, no Suppl 1, article id 1472990Article in journal (Refereed)
    Abstract [en]

    Background: There is a need for accessible interventions in the aftermath of traumatic events with documented efficacy for preventing or reducing negative mental health consequences. The PTSD Coach is a mobile app that has shown to be effective in reducing symptoms of posttraumatic stress (PTSS).

    Objective: The purpose of the current study was to evaluate the user satisfaction, perceived helpfulness and potential reductions of PTSS and symptoms of depression among participants using the Swedish version of the PTSD Coach.

    Method: This was an uncontrolled pre-test post-test open trial including participants recruited from the community via advertisement and from an ongoing observational study who had experienced a potentially traumatic event in the last five years. Participants had access to the Swedish PTSD Coach app for four weeks.

    Results: Eleven participants (mean age = 38.6, female = 8) completed the study. Nine of the participants met criteria for full or partial PTSD. Results from the PTSD Coach Survey indicated that participants found the app slightly to moderately helpful and were slightly to moderately satisfied with the app. Nominal but not statistically significant reductions of medium effect sizes in PTSS (PCL-5) and depression (PHQ-9) from pre- to post-assessment were found. In interviews, participants indicated that they found elements such as learning about PTSD, breathing exercises and monitoring symptoms helpful in managing symptoms. However, several participants indicated that they had not used the app as much as they had intended to. Participants also had suggestions for improvements such as enhanced app structure and better guidance regarding how to use the app.

    Conclusions: The perceived helpfulness and user satisfaction were slightly lower compared to research on the original version of the app. Experiences from the study are discussed and a future controlled study of the Swedish version of the PTSD Coach is suggested.

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  • 6.
    Eklund, Rakel
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Eisma, Maarten
    University of Groningen, NLD.
    Boelen, Paul
    Utrecht University, NLD; University of Groningen, NLD.
    Arnberg, Filip
    Uppsala universitet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    A Mobile App for Prolonged Grief among Bereaved Parents: Study Protocol for a Randomized Controlled Trial2021Manuscript (preprint) (Other academic)
    Abstract [en]

    Introduction: Bereaved parents have elevated risk to develop mental health problems, yet, few studies have evaluated the effect of psychosocial interventions developed for bereaved parents. Cognitive behavioral therapy (CBT), both face-to-face or digitally delivered, has shown to be an effective intervention for prolonged grief symptoms. Self-help mobile apps offer various advantages and studies show improved mental health after app interventions. No app has yet been evaluated targeting prolonged grief in bereaved parents. Therefore, the aim of this planned study is to develop and examine the effectiveness of a CBT-based mobile app, called My Grief, in reducing symptoms of prolonged grief, as well as other psychological symptoms, in bereaved parents. Another aim is to assess users’ experiences and adverse events of My Grief.

    Methods and analysis: We will conduct a two-armed randomized waitlist-controlled trial. Parents living in Sweden, who lost a child to cancer between one and ten years ago, with elevated symptoms of prolonged grief, will be recruited to participate in the trial. The content of My Grief covers four main domains (Learn; Self-monitoring; Exercises; Get support) and builds on principles of CBT and the proven-effective PTSD Coach app. Participants in the intervention group will fill out online questionnaires at baseline and at 3-, 6- and 12-months follow-ups, and the waitlist-controls at baseline and at 3 months. The primary outcome will be prolonged grief symptoms at the 3 months follow-up. Secondary outcomes are posttraumatic stress and depression symptoms, quality of life, and cognitive behavioral variables (i.e., avoidance, rumination, negative cognitions).

    Ethics and dissemination: Ethical approval has been received from the Swedish Ethical Review Authority (project no. 2021-00770). If the app is shown to be effective, the app will be made publicly accessible on app stores, so that it can benefit other bereaved parents.

    Trial registration: Clinicaltrials.gov, identifier: NCT04552717.

  • 7.
    Holm, Maja
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Weber Falk, Megan
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    How parents of dependent children reason about their partner's impending death due to cancer2023In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 47, no 1, p. 105-110Article in journal (Refereed)
    Abstract [en]

    This paper explores how bereaved parents with dependent children reasoned about their partner's impending death due to cancer. Questionnaires were used to collect data from 42 cancer-bereaved parents of dependent children in Sweden. The results showed that most of the parents had thought, at least once, that death would be best for their partner's own sake. A few parents had also thought that it would be best for everyone if their partner died. Many parents had a wish to keep up hope, no matter what. However, living with a partner with advanced illness and dependent children was described as extremely stressful.

  • 8.
    Holm, Maja
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Weber Falk, Megan
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Sources of social support and its importance for cancer-bereaved spouses and their minor children: A cross-sectional study2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 4, p. 996-1002Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to evaluate the sources from which bereaved families with minor children reported receiving social support after the death of a parent/partner and which sources they perceived as important. Using an online platform, 23 adolescents, 42 parents, and 27 parent proxies for children aged 4-11 years, completed questionnaires. Family and friends were valued as the most important sources of social support, while social support from societal institutions, such as health care and school, was considered less important, and insufficient.

  • 9.
    Kreicbergs, Ulrika
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    No impact of previous evidence advocating openness to talk to children about their imminent death2021In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, no 5, p. 1671-1672Article in journal (Refereed)
    Abstract [en]

    Communication is as important as the drug and the knife in medical care, particularly when patients are facing life-threatening conditions. However, the ability to communicate effectively has been commonly associated with strong emotional barriers among healthcare professionals and family members. Studies that have focused on paediatric oncology have showed that openness about the transition from curative to palliative care is frequently avoided. As long ago as the 1980s a paper in this journal reported that children often wanted to share their thoughts and feelings at the end of life, but that adults often failed to recognise that need.

  • 10.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska universitetssjukhuset; Karolinska institutet.
    Melin-Johansson, Christina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Udo, Camilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan Dalarna; Centrum för klinisk forskning Dalarna (CKF).
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Telling the truth to dying children: End‐of‐life communication with families2019In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 108, no 11, p. 2111-2112Article in journal (Refereed)
  • 11.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Family Bereavement Care in Pediatric Oncology2018In: Palliative Care in Pediatric Oncology / [ed] Joanne Wolfe; Barbara L. Jones; Ulrika Kreicbergs; Momcilo Jankovic, Springer, 2018, p. 245-264Chapter in book (Refereed)
    Abstract [en]

    Studies have shown that grief after losing a child is more intense and prolonged than after the loss of a spouse or a parent. Children are expected to outlive their parents, and losing one’s child has been described as one of the most traumatic experiences possible. While a majority of bereaved parents adjust to the loss of a child without professional help, a significant minority will experience persistent and intensive grief reactions and may need treatment. Siblings are often called “the forgotten grievers” based on the idea that they are not the focus of family, friends, and health-care professionals, who often primarily focus on the ill child and the parents. Unfortunately, research has shown that a majority of siblings still grieve many years after the loss. As research shows that long-term psychological morbidity, including grief, among parents and siblings is affected by modifiable and/or avoidable factors during illness, end of life, and after the loss, family bereavement care should start early and beyond the child’s death. This chapter describes factors that can contribute to the psychological outcomes for parents and siblings after bereavement. Symptom management in the end of life has shown important as well as a good relationship between the health-care professionals and the parents/siblings during the illness trajectory. Parents and siblings need open and honest communication relating to diagnosis, prognosis, and impending death as it allows them to better prepare for the loss—something that are important for their psychological well-being years after bereavement. Bereavement support for the family after the loss is also described in this chapter. For example, it is important for families to have access to the care team after the loss of the child as they have expressed a need for, e.g., remembrance ceremonies and for obtaining more knowledge about the end-of-life care. Parent support groups are much appreciated by the parents but lack evaluation of their effect. This is also the case for sibling camps. As much of bereavement care is not evidence based, or not even theoretically based, more research is needed in order to better facilitate the grieving process and long-term psychological well-being for parents and siblings.

  • 12.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Nyberg, Tommy
    Karolinska Institutet; University of Cambridge, United Kingdom.
    Eilegård Wallin, Alexandra
    Högskolan Dalarna.
    Prigerson, Holly G
    Weill Cornell Medicine, Center for Research on End-of-Life Care, USA.
    Steineck, Gunnar
    Karolinska Institutet; Göteborgs universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Care at End of Life Influences Grief: A Nationwide Long-Term Follow-Up among Young Adults Who Lost a Brother or Sister to Childhood Cancer.2018In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 21, no 2, p. 156-162Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: A majority of cancer-bereaved siblings report long-term unresolved grief, thus it is important to identify factors that may contribute to resolving their grief.

    OBJECTIVE: To identify modifiable or avoidable family and care-related factors associated with unresolved grief among siblings two to nine years post loss.

    DESIGN: This is a nationwide Swedish postal survey.

    MEASUREMENTS: Study-specific questions and the standardized instrument Hospital Anxiety and Depression Scale. Primary outcome was unresolved grief, and family and care-related factors were used as predictors.

    SETTING/PARTICIPANTS: Cancer-bereaved sibling (N = 174) who lost a brother/sister to childhood cancer during 2000-2007 in Sweden (participation rate 73%). Seventy-three were males and 101 females. The age of the siblings at time of loss was 12-25 years and at the time of the survey between 19 and 33 years.

    RESULTS: Several predictors for unresolved grief were identified: siblings' perception that it was not a peaceful death [odds ratio (OR): 9.86, 95% confidence interval (CI): 2.39-40.65], limited information given to siblings the last month of life (OR: 5.96, 95% CI: 1.87-13.68), information about the impending death communicated the day before it occurred (OR: 2.73, 95% CI: 1.02-7.33), siblings' avoidance of the doctors (OR: 3.22, 95% CI: 0.75-13.76), and lack of communication with family (OR: 2.86, 95% CI: 1.01-8.04) and people outside the family about death (OR: 5.07, 95% CI: 1.64-15.70). Depressive symptoms (OR: 1.27, 95% CI: 1.12-1.45) and time since loss (two to four years: OR: 10.36, 95% CI: 2.87-37.48 and five to seven years: OR: 8.36, 95% CI: 2.36-29.57) also predicted unresolved grief. Together, these predictors explained 54% of the variance of unresolved grief.

    CONCLUSION: Siblings' perception that it was not a peaceful death and poor communication with family, friends, and healthcare increased the risk for unresolved grief among the siblings.

  • 13.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Steineck, Gunnar
    Karolinska institutet; Göteborgs universitet.
    Wallin, Alexandra Eilegård
    Högskolan Dalarna.
    Eilertsen, Mary-Elizabeth B
    Norwegian University of Technology and Science, Trondheim, Norway.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Spirituality and religious coping are related to cancer-bereaved siblings' long-term grief2019In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 17, no 2, p. 138-142Article in journal (Refereed)
    Abstract [en]

    Objective: Many bereaved siblings have still not come to terms with their grief many years after the loss, but few studies have focused on what can help. The aims of this study were to identify cancer-bereaved adolescents' and young adults' ways of coping with grief after loss of a sibling, and examine whether these ways of coping were related to their experience of having worked through their grief.

    Method: This nationwide survey of 174 cancer-bereaved siblings (73% participation rate) is based on one open-ended question about coping with grief ("What has helped you to cope with your grief after your sibling's death?") and one closed-ended question about siblings' long-term grief ("Do you think you have worked through your grief over your sibling's death?"). The open-ended question was analyzed with content analysis; descriptive statistics and Fisher's exact test were used to examine the relation between type of coping and siblings' long-term grief.

    Result: The siblings described four ways of coping: (1) thinking of their dead brother/sister and feeling and expressing their grief; (2) distracting or occupying themselves; (3) engaging in spiritual and religious beliefs/activities; and (4) waiting for time to pass. One of these categories of coping with grief, namely, engaging in spiritual and religious beliefs and activities, was associated with siblings' experience of having worked through their grief two to nine years after the loss (p = 0.016).

    Significance of results: Those siblings who had used spirituality, religious beliefs, and activities to cope were more likely to have worked through their grief than those who had not.

  • 14.
    Melin-Johansson, Christina
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Mittuniversitetet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet; Karolinska universitetssjukhuset.
    Udo, Camilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Högskolan Dalarna; Centrum för klinisk forskning, Dalarna.
    A third of dying patients do not have end-of-life discussions with a physician: A nationwide registry study2022In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 20, no 3, p. 357-362Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of the study was to explore the proportion of adult patients and next-of-kin who had end-of-life (EOL) discussions and associated factors.

    METHOD: A retrospective nationwide registry study was reported with data from the Swedish Register of Palliative Care. All patients in Sweden in hospitals, nursing homes, own homes, community, and palliative care units during 2015-2017 and their next-of-kin were included. Data were reported to the register by healthcare staff, based on diseased patients' records regarding their last days of life, and were voluntary. Descriptive statistics illustrated the proportion of patients/next-of-kin who had EOL discussions and logistic regressions were used to examine associated factors.

    RESULTS: About half of the patients (46%) did have an EOL discussion, but a third (32%) did not. Associated factors of those who did not have an EOL discussion were dementia (48.5%) or stroke (47.5%), older age (38.4%), being female (33.6%), being cared for in a nursing home (41.3%), or hospital (40.3%), having lost decision-making ability months before death (58.9%), and not having a documented decision to shift to EOL care (82.7%). Younger patients diagnosed with cancer and cared for at a palliative unit were more likely to have EOL discussions. The regression analysis showed similar results for next-of-kin.

    SIGNIFICANCE OF RESULTS: The result shows that not all patients with palliative care needs have equal access to EOL discussions, despite efforts at a national level and the recognized benefits of timely communication about the EOL care. Further efforts must be made to achieve EOL discussions for all patients.

  • 15.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Factors During a Child's Illness Are Associated With Levels of Prolonged Grief Symptoms in Bereaved Mothers and Fathers2020In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 38, no 2, p. 137-144Article in journal (Refereed)
    Abstract [en]

    Purpose: Previous research shows that bereaved parents are at an increased risk for intense and prolonged grief responses. To offer effective support to parents during a child's cancer treatment and after their child's death, more knowledge is needed about factors related to the child's illness trajectory that may contribute to prolonged grief in bereaved parents and about possible sex differences related to such factors. Therefore, we examined possible contributing factors associated with prolonged grief in cancer-bereaved mothers and fathers 1 to 5 years after their child died of cancer.

    Methods: We studied data from a population-based nationwide survey, including 133 mothers and 92 fathers who had lost a child to cancer 1 to 5 years earlier, using univariable and multiple regression analyses to assess the associations between prolonged grief and possible contributing variables.

    Results: The variables associated with lower levels of prolonged grief symptoms for mothers were being able to talk about feelings within the family (P = .00) and trusting that health care professionals made every possible effort to cure the child (P = .01). The statistically significantly associated variables for fathers were having said farewell to the deceased child in the way they wanted (P = .00) and feeling that they had received practical support from health care professionals during the child's illness trajectory (P = .01).

    Conclusion: We found factors during the illness of children with cancer that contributed to prolonged grief for parents; these were different for mothers and fathers. The results may have implications for design of family bereavement support within pediatric oncology care, including addressing the differing needs of mothers and fathers more effectively.

  • 16.
    Pohlkamp, Lilian
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Prigerson, Holly G
    Weill Cornell Medicine, USA.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Psychometric properties of the Prolonged Grief Disorder-13 (PG-13) in bereaved Swedish parents.2018In: Psychiatry Research, ISSN 0165-1781, E-ISSN 1872-7123, Vol. 267, p. 560-565, article id S0165-1781(18)30138-0Article in journal (Refereed)
    Abstract [en]

    This study aimed to validate the Swedish version of the Prolonged Grief Disorder-13 tool (PG-13) by examining its psychometric properties, including factor structure, discriminant and concurrent validity. The PG-13 was assessed in a sample of Swedish parents who had lost a child to cancer 1-5 years previously. The sample included 225 parents (133 mothers and 92 fathers) with a mean age of 46.02 years (SD = 8.15) and 16.0% met the criteria for Prolonged Grief Disorder (PGD). A principal component analysis was performed, and the results supported a one-factor structure of the PG-13. The PG-13 was shown to have high internal consistency and intelligible associations with concurrent psychological symptoms and grief rumination as well as with known risk factors for PGD. These results indicate satisfactory psychometric properties of the instrument, thus supporting the use of the PG-13 as a valid measure of PGD.

  • 17.
    Pohlkamp, Lilian
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Bereaved mothers' and fathers' prolonged grief and psychological health 1 to 5 years after loss-A nationwide study.2019In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 28, no 7, p. 1530-1536Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To assess differences in prolonged grief, depression, posttraumatic stress, and sleep disturbances in bereaved parents across years since loss (1-5 years) and by gender and to assess potential interactive effects of time since loss and gender on bereavement outcomes.

    METHODS: This study examined symptom levels of prolonged grief disorder, depression, posttraumatic stress, and insomnia in bereaved parents. A sample, including 133 mothers and 92 fathers who had lost a child to cancer 1 to 5 years previously, subdivided to five subsamples, one for each year since loss. Analysis of variance (ANOVA) was used to assess differences in symptom levels, related to years since loss, and gender.

    RESULTS: Regardless of how many years had passed since the loss, symptom levels of prolonged grief, depression, posttraumatic stress symptoms, and insomnia were elevated in all subsamples. Mothers showed higher symptom levels of prolonged grief, depression, and posttraumatic stress than fathers. However, no significant interaction effects were found between years since loss and gender on any of the symptom levels.

    CONCLUSIONS: Cancer-bereaved mothers and fathers are vulnerable to prolonged grief and psychological symptoms up to 5 years after the death of their child. Findings highlight that bereaved parents may need long-term support, and the results deserve further attention in research and clinical care.

  • 18.
    Pohlkamp, Lilian
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Prolonged Grief is Associated with Different Factors During the Child’s Illness for Mothers and Fathers2019In: 6th World Congress of the EAPC in Berlin / [ed] SAGE, 2019Conference paper (Other academic)
    Abstract [en]

    Background: The death of a child is one of the most painful events a parent may experience. Bereaved parents are known to be at an increased risk for intense and prolonged grief responses such as Prolonged Grief Disorder (PGD). More knowledge is needed to understand mothers’ and fathers’ experiences of their children’s disease trajectory and possible associations to prolonged grief in order to offer better support to grieving parents.

    Objective: The aims of this study were to assess symptoms of PGD in bereaved mothers and fathers and to examine possible contributing factors to parent’s grief.

    Methods: A Swedish population based survey including 133 mothers and 92 fathers who had lost a child to cancer 1-5 years previously. Bivariate and multiple regression analyses were conducted to assess the associations between prolonged grief and independent variables.

    Results: Mothers had significantly higher PGD symptom levels than fathers. Suffering of mothers was associated with their child’s pain, anxiety and with not being able to talk within the family, whereas the suffering of fathers was associated with lack of information from health care staff and with the feeling of having too much responsibility in the care of the child.

    Conclusions: Mothers and fathers reported differences in factors associated with their grief following the death of their child. The results suggest that mothers and fathers would benefit from different kinds of support during their child’s illness, which could be considered when developing pediatric palliative care practice.

  • 19.
    Pohlkamp, Lilian
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Parents’ views on what facilitated or complicated their grief after losing a child to cancer2021In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 19, no 5, p. 524-529Article in journal (Refereed)
    Abstract [en]

    Objectives: The loss of a child is a devastating event, and bereaved parents often suffer intense and long-lasting grief reactions and are at risk for psychological symptoms. More knowledge about how parents cope with grief may improve the support to bereaved parents. This study, therefore, aimed to explore parents' views on what facilitated or complicated their grief coping after losing a child to cancer.

    Methods: This study was derived from a nationwide postal survey. Cancer-bereaved parents (n = 161) provided written responses to two open-ended questions: "Is there anything that has helped you cope with your grief after your child's death?" and "Is there anything that made it difficult for you to cope with your grief?" Content analysis was used to analyze the responses.

    Results: Parents reported that a supportive social network of family and friends, and having remaining children, facilitated their coping with grief. Meeting professional counselors and meeting other bereaved parents, connecting to memories of the deceased child in various contexts, including school and pediatric care settings, were also reported facilitating grief coping. Parents stated that the following experiences had complicated grief coping: additional losses in their family or social network; not being able to share emotions with their partner; when they perceived that friends, relatives, or colleagues lacked empathy or patience; when they felt challenging demands from employers at a too early stage.

    Significance of results: This study contributes to the understanding of parents' grief experiences and what has facilitated or complicated their coping with grief, which can help health care professionals and others improve bereavement support services.

  • 20.
    Sveen, Josefin
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Det finns inget rätt eller fel i sorg2016In: Barn & Cancer, no 2, p. 17-18Article in journal (Other (popular science, discussion, etc.))
  • 21.
    Sveen, Josefin
    Uppsala universitet.
    Posttraumatic Stress and Cognitive Processes in Patients with Burns2011Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    A severe burn is one of the most traumatic injuries a person can experience. Posttraumatic stress disorder (PTSD) is relatively common after burns, and can be devastating for the individual’s possibilities for recovery. The principal aims were to gain knowledge regarding posttraumatic stress symptoms and cognitive processes after burn and to evaluate methods for assessing symptoms of PTSD up to one year after burn.

    The psychometric properties of a Swedish version of the Impact of Event Scale-Revised (IES-R) were examined. The results indicate that the IES-R is a valid screening instrument for measuring PTSD symptoms in patients with burns and it can be used during hospitalisation to identify resilient individuals.

    The pattern of PTSD symptoms over time was also investigated. Four distinct trajectories of PTSD symptoms were identified, i.e. four groups of patients with significantly different onsets and courses. The trajectories differed in the expected direction regarding several risk factors associated with PTSD symptoms.

    Several previously known risk factors for PTSD symptoms were also identified including burn severity, psychiatric history, previous life events, early psychological symptoms, neuroticism-related personality traits, avoidant coping and low social support. The risk factors correspond well with those reported in the international trauma literature, which strengthens the findings in this thesis.

    Finally, using the emotional Stroop task at one year post burn it was found that burn-specific attentional bias was common and associated with more previous life events, more perceived life threat, larger burns and higher levels of PTSD symptoms.

    In summary, there are individual differences in the development and course of PTSD symptoms after burn and attentional bias is a common cognitive phenomenon related to these symptoms. The findings also support the use of the IES-R as a screening instrument for PTSD symptoms in patients with burns.

  • 22.
    Sveen, Josefin
    et al.
    Uppsala universitet.
    Andersson, Gerhard
    Linköpings universitet.
    Buhrman, Bo
    Linköpings universitet.
    Sjöberg, Folke
    Linköpings universitet.
    Willebrand, Mimmie
    Uppsala Universitet.
    Internet-based information and support program for parents of children with burns: A randomized controlled trial.2017In: Burns, ISSN 0305-4179, E-ISSN 1879-1409, Vol. 43, no 3, p. 583-591Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The aim of the study was to evaluate the feasibility and effects of an internet-based information and self-help program with therapist contact for parents of children and adolescents with burns. The program aimed to reduce parents' symptoms of general and posttraumatic stress.

    METHODS: Participants were parents of children treated for burns between 2009-2013 at either of the two specialized Swedish Burn centers. Sixty-two parents were included in a two-armed, randomized controlled trial with a six-week intervention group and a wait-list control group, including a pre and post-assessment, as well as a 3 and 12-month follow-up. The intervention contained psychoeducation, exercises and homework assignments, and the intervention group received weekly written feedback from a therapist. The main outcome was stress (post-traumatic stress, general stress and parental stress).

    RESULTS: The program had a beneficial effect on posttraumatic stress in the short term, but did not affect general stress or parental stress. The parents rated the program as being informative and meaningful, but some of them thought it was time-consuming.

    CONCLUSION: The program has the potential to support parents of children with burns. The intervention is easily accessible, cost-effective and could be implemented in burn care rehabilitation.

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  • 23.
    Sveen, Josefin
    et al.
    Uppsala universitet.
    Andersson, Gerhard
    Linköpings universitet; Karolinska institutet.
    Ekselius, Lisa
    Uppsala universitet.
    Sjöberg, Folke
    Linköpings universitet.
    Buhrman, Bo
    Linköpings universitet.
    Willebrand, Mimmie
    Uppsala universitet.
    Internet-based information and self-help program for parents of children with burns: Study protocol for a randomized controlled trial2015In: Internet Interventions, ISSN 2214-7829, Vol. 2, no 4, p. 367-371Article in journal (Refereed)
    Abstract [en]

    Background: A burn is one of the most traumatic and painful injuries a child can experience and it is also a very stressful experience for the parents. Given the great psychological distress and perceived lack of multi-professional support experienced by the parents, there is a need for support during in-hospital treatment as well as during recovery. The aim of the study is to develop and evaluate an internet-based information and self-help program for parents of children who have been hospitalized for burn injury. The program aims to decrease parents' symptoms of stress.

    Methods: Participants will consist of parents of children treated for burns between 2009 and 2013 at either of the two specialized Swedish Burn centers. The study is a two-armed randomized controlled trial with a six-week intervention group and an inactive control group, with a pre- and post-assessment, as well as a 3- and 12-month follow-up. The main outcome is stress (post-traumatic stress, general perceived stress and parental stress). The data will be analyzed with the intention-to-treat principle. The intervention is based on Cognitive-Behavior Therapy (CBT) and is inspired by Acceptance and Commitment Therapy (ACT). It is psycho-educational and provides basic skills training in communication and stress management.

    Conclusion: We believe that this program will offer parents of children with burns information and support, decrease symptoms of stress, and that parents will perceive the program as useful. If the program is found to be beneficial, it could be implemented in burn care as it is accessible and cost-effective.

  • 24.
    Sveen, Josefin
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Arnberg, Filip
    Uppsala universitet; Stockholms universitet.
    Arinell, Hans
    Uppsala universitet.
    Johannesson, Kerstin Bergh
    Uppsala universitet.
    The role of personality traits in trajectories of long-term posttraumatic stress and general distress six years after the tsunami in Southeast Asia2016In: Personality and Individual Differences, ISSN 0191-8869, E-ISSN 1873-3549, Vol. 97, p. 134-139Article in journal (Refereed)
    Abstract [en]

    The aims were to examine whether trajectories of posttraumatic stress (PTS) and general distress are related to personality traits and to investigate personality's contributing factor to PTS and general distress. The sample was 2549 Swedish tourists who survived the 2004 Indian Ocean tsunami and responded to postal surveys at 1, 3 and 6 years after the tsunami, including assessment of personality traits, PTS and general distress. The sample was categorized into a direct exposure group and an indirect exposure comparison group. For both PTS and general distress, individuals with a resilient trajectory were lower in the trait neuroticism than those in the symptomatic trajectories whereas there were no differences in personality traits between the resilient trajectory and the low exposure comparison group. Neuroticism was strongly related to trajectories of both PTS and general distress even when adjusting for important risk factors such as traumatic bereavement and exposure severity. Other personality traits demonstrated weak associations with the trajectories. The present findings correspond with the notion of neuroticism as a vulnerability factor for symptomatic long-term trajectories of posttraumatic and general distress whereas resiliency was not predicated by particularly low levels of neuroticism.

  • 25.
    Sveen, Josefin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Bergh Johannesson, Kerstin
    Uppsala universitet.
    Cernvall, Martin
    Uppsala universitet.
    Arnberg, Filip K
    Uppsala universitet; Stockholms universitet.
    Trajectories of prolonged grief one to six years after a natural disaster2018In: PLOS ONE, E-ISSN 1932-6203, Vol. 13, no 12, p. 1-15, article id e0209757Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The long-term trajectories of prolonged grief are poorly understood. The aims were to examine the course of grief among bereaved disaster survivors up to six years post loss and factors predicting worse bereavement outcome. A third aim was to explore differences in grief indicators between trajectories.

    METHODS: Bereaved Swedish tourists who survived the 2004 Indian Ocean tsunamis responded to surveys including the Inventory of Complicated Grief 1 to 6 years after the disaster. Latent growth mixture modeling was used to identify longitudinal trajectories of grief. Multinomial logistic regression analysis was used to examine predictors of class membership.

    RESULTS: Three trajectories were identified: resilient (41% of the sample), recovering (48%), and chronic (11%). The strongest predictor of chronic grief was the loss of one's child. When examining grief indicators, the chronic trajectory was characterized by not accepting the loss, while yearning was common in all trajectories.

    CONCLUSIONS: This study highlights the importance of considering how traumatically bereaved individuals can be affected by loss for several years after a disaster, especially after losing one's child. An inability to accept the loss, more so than yearning, appears to characterize bereaved survivors at risk of a chronic trajectory of grief.

  • 26.
    Sveen, Josefin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Bondjers, Kristina
    Uppsala universitet.
    Heinsoo, Julia
    Uppsala universitet.
    Arnberg, Filip K
    Uppsala universitet; Stockholms universitet.
    Psychometric Evaluation of the Swedish Version of the Prolonged Grief Disorder-13 (PG-13) in a Bereaved Mixed Trauma Sample2020In: Frontiers in Psychiatry, E-ISSN 1664-0640, Vol. 11, article id 541789Article in journal (Refereed)
    Abstract [en]

    Background: This study aimed to examine the psychometric properties of the Swedish PG-13 in a bereaved trauma exposed sample. A second aim was to examine the latent structure of prolonged grief using the PG-13. Methods: The participants were adults (n = 123) taking part in an ongoing longitudinal study regarding the effects of potentially traumatic events. Participants had experienced a potentially traumatic event in the past 5 years and had reported a death of a significant other either as their primary traumatic event or in addition to another traumatic event. Assessment included self-report of prolonged grief, posttraumatic stress, and general psychological distress. Clinical interviews were used to assess depression, posttraumatic stress disorder, and disability level. The psychometric properties of the Swedish PG-13 were examined through reliability tests and assessment of associations with symptoms of posttraumatic stress, depression, general psychological distress, and disability level. Principal component analysis (PCA) and confirmatory factor analyses (CFA) were used to assess the latent structure. Results: The internal consistency (Cronbach's α = 0.86) and test-retest (r = 0.86) reliability were good. PCA suggested a three-factor model as descriptive of the latent structure of the instrument. Therefore, the CFA used this model, as well as two models suggested in the literature. The three-factor model had the best fit to data. Support of concurrent validity of PG-13 was shown by moderate positive associations with measures of posttraumatic stress, depression, and general psychological distress. Conclusions: The Swedish PG-13 demonstrated good psychometric properties, and its use in research and practice to assess prolonged grief was supported. The factor analyses provided stronger support for models with two or three factors, as compared with a unidimensional model of prolonged grief, with the three-factor model having the best fit.

  • 27.
    Sveen, Josefin
    et al.
    Uppsala universitet.
    Bondjers, Kristina
    Uppsala universitet.
    Willebrand, Mimmie
    Uppsala universitet.
    Psychometric properties of the PTSD Checklist for DSM-5: a pilot study2016In: European Journal of Psychotraumatology, ISSN 2000-8066, E-ISSN 2000-8066, Vol. 7, no 1, p. 1-7, article id 30165Article in journal (Refereed)
    Abstract [en]

    Background: To date there is a lack of studies assessing the psychometric properties of the recently revised PTSD Checklist (PCL), the PTSD Checklist for DSM-5 (PCL-5). The aim of this pilot study was to examine the psychometric properties of the PCL-5 in parents of children with burns.

    Methods: The participating parents (N = 62, mean age = 38) completed self-report questionnaires, 0.8-5.6 years after their child's burn. Measures were the PCL-5, the Impact of Event Scale-Revised (IES-R), the Montgomery Asberg Depression Rating Scale (MADRS), and the Perceived Stress Scale (PSS). Burn severity of the child and sociodemographic variables was obtained.

    Results: The parents' average PCL-5 scores were low to moderate. The internal consistency of the PCL-5 was satisfactory, with Cronbach's alpha ranging from 0.56 to 0.77 and mean inter-item correlations ranging from 0.22 to 0.73 for the four PCL-5 subscales and the PCL-5 total. The PCL-5 subscales were moderately to highly correlated with the corresponding IES-R subscales as well as MADRS and PSS (p < 0.05), whereas associations with sociodemographics and burn severity were low to moderate.

    Conclusions: This study provides preliminary support for the use of PCL-5. The results indicate satisfactory psychometric properties of the PCL-5 as measured with internal consistency, test retest reliability, and aspects of convergent validity.

  • 28.
    Sveen, Josefin
    et al.
    Uppsala universitet.
    Dyster-Aas, Johan
    Uppsala universitet.
    Willebrand, Mimmie
    Uppsala universitet.
    Attentional bias and symptoms of posttraumatic stress disorder one year after burn injury2009In: Journal of Nervous and Mental Disease, ISSN 0022-3018, E-ISSN 1539-736X, Vol. 197, no 11, p. 850-855Article in journal (Refereed)
    Abstract [en]

    Trauma-related attentional bias is suggested to play a role in maintaining posttraumatic stress disorder (PTSD). Although being burn injured is a traumatic event for many patients, there are no prospective studies investigating attentional bias. The aims were to assess burn-specific attentional bias 1 year after burn, and its associations with risk factors for PTSD and symptoms of PTSD. A total of 38 adult patients with burns were assessed with a structured clinical interview and a Swedish version of the Impact of Event Scale-Revised up to 1-year after burn. The Emotional Stroop Task was used to assess attentional bias 1 year after burn. In total 29 participants displayed burn-specific attentional bias. This group had more previous life events, perceived life threat, larger burns, and higher PTSD symptom severity. In conclusion, the majority of the patients had burn-specific attentional bias 1 year after burn and this was related to symptoms of PTSD.

  • 29.
    Sveen, Josefin
    et al.
    Karolinska institutet, Uppsala universitet.
    Eilegård, Alexandra
    Karolinska institutet, Sophiahemmet.
    Steineck, Gunnar
    Göteborgs universitet, Karolinska institutet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet.
    They still grieve: A nationwide follow-up of young adults 2-9 years after losing a sibling to cancer.2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 6, p. 658-664Article in journal (Refereed)
    Abstract [en]

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

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

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

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

  • 30.
    Sveen, Josefin
    et al.
    Uppsala universitet.
    Ekselius, Lisa
    Uppsala universitet.
    Gerdin, Bengt
    Uppsala universitet.
    Willebrand, Mimmie
    Uppsala universitet.
    A prospective longitudinal study of posttraumatic stress disorder symptom trajectories after burn injury2011In: Journal of Trauma, ISSN 0022-5282, E-ISSN 1529-8809, Vol. 71, no 6, p. 1808-1815Article in journal (Refereed)
    Abstract [en]

    Background: Psychologic problems are common after burns, and symptoms of posttraumatic stress disorder (PTSD) are some of the most prevalent. Risk factors for PTSD have been identified, but little is known about the onset and course of these symptoms. The objective was to investigate whether there are different PTSD symptom trajectories after burns.

    Methods: Ninety-five adults with burns were enrolled in a prospective study from in-hospital treatment until 12 months after burn. Symptoms of PTSD were assessed with the Impact of Event Scale-Revised and scores at 3, 6, and 12 months after the burn were used in a cluster analysis to detect trajectories. The trajectories were compared regarding known risk factors for PTSD using non-parametric analysis of variance.

    Results: Four clusters were identified: (1) resilient, with low levels of PTSD symptoms that decreased over time; (2) recovery, with high levels of symptoms that gradually decreased; (3) delayed, with moderate symptoms that increased over time; and (4) chronic, with high levels of symptoms over time. The trajectories differed regarding several risk factors for PTSD including life events, premorbid psychiatric morbidity, personality traits, avoidant coping, in-hospital psychologic symptoms, and social support. The resilient trajectory consistently had fewer of the risk factors and differed the most from the chronic trajectory.

    Conclusions: There are subgroups among patients with burns that have different patterns of PTSD symptom development. These findings may have implications for clinical practice, such as the timing of assessment and the management of patients who present with these symptoms.

  • 31.
    Sveen, Josefin
    et al.
    Uppsala universitet.
    Huss, Fredrik
    Uppsala universitet.
    Sjöberg, Folke
    Linköpings universitet.
    Willebrand, Mimmie
    Uppsala universitet.
    Psychometric properties of the swedish version of the burn outcomes questionnaire for children aged 5 to 18 years2012In: Journal of Burn Care & Research, ISSN 1559-047X, E-ISSN 1559-0488, Vol. 33, no 6, p. 286-294Article in journal (Refereed)
    Abstract [en]

    Although pediatric burn injuries are common, there is a lack of burn-specific health outcome measurements for children. The American Burn Association and the Shriners Hospitals for Children have developed the Burn Outcomes Questionnaire (BOQ), which is a parent-report questionnaire measuring the functional outcome after burn in children aged 5 to 18 years. The aim of this study was to examine the psychometric properties of the Swedish version of the BOQ, assessing feasibility, reliability, and validity aspects. Participants were parents (n = 70) of children aged 5 to 18 years who were treated at the Uppsala or Linköping burn center between January 2000 and December 2008. For most subscales, feasibility was adequate and the internal consistency was good: Cronbach's α values were above 0.76 in all but 1 subscale, and mean interitem correlations ranged from 0.34 to 0.90. The test-retest reliability was significant in the majority of subscales. Evidence of validity was shown by associations among the BOQ subscales and between BOQ subscales and measures of burn severity, heat sensitivity, fear-avoidance beliefs, and parent reports of the child's psychological problems. In conclusion, with the exception of a few subscales, this study supports the continued evaluation of the Swedish version of BOQ as a tool to measure outcome after burn in children aged 5 to 18 years.

  • 32.
    Sveen, Josefin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Jernelöv, Susanna
    Karolinska institutet; Region Stockholm.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Kaldo, Viktor
    Karolinska institutet; Region Stockholm; Linnéuniversitetet.
    Feasibility and preliminary efficacy of guided internet-delivered cognitive behavioral therapy for insomnia after the loss of a child to cancer: Randomized controlled trial2021In: Internet Interventions, ISSN 2214-7829, Vol. 25, article id 100409Article in journal (Refereed)
    Abstract [en]

    Bereaved individuals often experience sleep problems. The aim of this study was to evaluate feasibility and preliminary effects of internet-delivered cognitive behavioral therapy for insomnia (iCBT-i) in bereaved parents. Parents were randomized to iCBT-i (n = 10) or an active control group (n = 11). Primary outcome (insomnia) and secondary outcomes (prolonged grief, depression, posttraumatic stress, and grief rumination) were assessed pre- and post-treatment, with 9- and 18-month follow-ups. Feasibility was assessed post-treatment and one month later. Most parents reported positive effects of the treatment. The intervention group improved significantly from pre- to post-treatment and had a significantly larger reduction of insomnia when analyzed over all four time-points (Wald χ2 = 30.0, p < 0.001), although the effect at post-treatment was very small (d = 0.1) for insomnia. Thus, iCBT-i was feasible and was related to reduced insomnia and psychological distress in bereaved parents, both short- and long-term, but the results regarding the treatment effect are preliminary due to the small sample size.

  • 33.
    Sveen, Josefin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Jernelöv, Susanna
    Karolinska institutet.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kaldo, Viktor
    Karolinska institutet.
    Guided internet cognitive behavioral therapy for insomnia after the loss of a child: randomized controlled trial2019In: 6th World Congress of the EAPC in Berlin / [ed] SAGE, 2019Conference paper (Other academic)
    Abstract [en]

    Background: Disturbed sleep is a common problem in bereaved individuals (Buckley et al., 2012).

    Aims: The aim was to evaluate satisfaction with and effects of internet-delivered cognitive behavior therapy (ICBT) treatment for insomnia in parents up to 5 years after the loss of a child to cancer.

    Methods: Participants were 21 bereaved parents with insomnia. The parents were randomized to an intervention or a control group. The intervention was a 9-week ICBT for insomnia. The control group received a short booklet with psychoeducation on sleep via the internet. Primary outcome was symptom of insomnia and secondary outcomes were prolonged grief, depression, posttraumatic stress, grief rumination, assessed pre- and post-intervention with follow-up after 9 and 18 months. Satisfaction with treatment was assessed at post-intervention (n=7) and by telephone one month after (n=6) the intervention.

    Results: The intervention group improved from pre- to post-intervention with regard to symptoms of insomnia (Cohens d=1.56), however there was no significant difference between the two groups at post-measure (d=0.11) due to a large reduction also in the control group (d=1.12). At the 9 months follow-up there was a significant difference between the two groups in symptoms of insomnia (d=1.54) as well as the secondary measures (d=0.62-1.54). Of six individuals who responded by telephone, no one had experienced any negative consequences of the treatment. Some parents thought it was time-consuming. One person reported being quite dissatisfied with the treatment, although the majority of participants reported being very satisfied.

    Conclusion: The preliminary results, due to small sample size, indicate that the internet-delivered treatment with CBT had a positive effect on reducing insomnia as well as psychological distress in bereaved parents, short-term and long-term.

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  • 34.
    Sveen, Josefin
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Melcher, Ulrica
    Ersta sjukhus, Hospicekliniken, Stockholm.
    Alvariza, Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta Sköndal University College, Department of Health Care Sciences. Capio Palliativ vård Dalens sjukhus, Stockholm; Karolinska institutet, Stockholm.
    Teenagers' reasoning about a parent's recent death in cancer2016In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 14, no 4, p. 349-357Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of the study was to explore how teenagers reason about a parent's recent death and about their life without that parent.

    Method: A total of 10 teenagers (aged 14–19 years, 7 boys and 3 girls) were interviewed twice, 3–12 months after their parent's death. The interviews were carried out individually and as free-ranging conversations. A content analysis with a descriptive and interpretive design was conducted.

    Results: Importantly, all teenagers appreciated participating in the interviews. Some had not previously talked in such depth about this with anyone, while others had more open communications within their families and with others. Their parent's death was the worst thing that could happen, but they still expressed the feeling that it had been a relief for both the ill parent and themselves. The death had relieved the parent from suffering and a life with severe illness. Many of the teenagers empathized with the surviving parent's grief and worried about him or her as well as the entire home situation. As a consequence, the teenagers did not show their grief, as they did not want to burden the grieving parent. Seeing the parent grieving could lead to feelings of loneliness and hopelessness and that the support they needed was not there for them. Nevertheless, some teenagers could grieve together with the surviving parent in common understanding and with openness.

    Significance of Results: A tentative conclusion is that the teenagers who were more likely to talk and grieve together with their surviving parent coped better with their situation than teenagers who did not. Parentally bereaved teenagers tend to take on a responsibility to support the grieving parent, when it is they themselves who need and should receive support.

  • 35.
    Sveen, Josefin
    et al.
    Uppsala universitet.
    Low, Aili
    Uppsala universitet.
    Dyster-Aas, Johan
    Uppsala universitet.
    Ekselius, Lisa
    Uppsala universitet.
    Willebrand, Mimmie
    Uppsala universitet.
    Gerdin, Bengt
    Uppsala universitet.
    Validation of a swedish version of the impact of event scale-revised (IES-R) in patients with burns2010In: Journal of Anxiety Disorders, ISSN 0887-6185, E-ISSN 1873-7897, Vol. 24, no 6, p. 618-622Article in journal (Refereed)
    Abstract [en]

    The Impact of Event Scale (IES) and the Impact of Event Scale-Revised (IES-R) are often used as self-reportinstruments for symptoms of post-traumatic stress disorder (PTSD). However, there are few validationsof the IES and the IES-R against structured clinical interviews. In this study the two scales, together withthe three subscales of the IES-R, were assessed for their agreement with a diagnosis of PTSD in patientswith burns 1 year after injury. Sixty patients with burns were evaluated 1 year after injury using theStructured Clinical Interview for the DSM-IV Axis I (SCID-I) psychiatric disorders and a Swedish versionof the IES-R. The total score of the IES-R had the best discriminant ability (0.89) with a sensitivity of 1.0and a specificity of 0.78. In conclusion, the total IES-R had good properties as a screening tool for PTSDand subsyndromal PTSD 1 year after burn injury.

  • 36.
    Sveen, Josefin
    et al.
    Uppsala universitet.
    Orwelius, Lotti
    Linköpings universitet.
    Gerdin, Bengt
    Uppsala universitet.
    Huss, Fredrik
    Linköpings universitet.
    Sjöberg, Folke
    Linköpings universitet.
    Willebrand, Mimmie
    Uppsala universitet.
    Psychometric properties of the impact of event scale-revised in patients one year after burn injury2010In: Journal of Burn Care & Research, ISSN 1559-047X, E-ISSN 1559-0488, Vol. 31, no 2, p. 310-318Article in journal (Refereed)
    Abstract [en]

    Burn injury can be a life-threatening and traumatic event. Despite considerable risk for psychological morbidity, few outcome measures have been evaluated. The aim of this study was to examine the psychometric properties of a Swedish version of the Impact of Event Scale-Revised (IES-R) in patients 1 year after burn injury (N = 147). A principal component analysis was performed, and the results supported the three-factor structure of the IES-R. High internal consistency and intelligible associations with concurrent psychological symptoms and known risk factors for distress after trauma indicate satisfactory psychometric properties. Thus, the study supports the use of the IES-R as a screening tool for measuring traumatic distress after burn.

  • 37.
    Sveen, Josefin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Eisma, Maarten C
    University of Groningen, the Netherlands.
    Rumination in bereaved parents: Psychometric evaluation of the Swedish version of the Utrecht Grief Rumination Scale (UGRS).2019In: PLOS ONE, E-ISSN 1932-6203, Vol. 14, no 3, p. 1-16, article id e0213152Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Bereaved parents may be at higher risk to develop persistent, severe and disabling grief, termed prolonged grief. Grief rumination, repetitive thinking about the causes and consequences of the loss, is a malleable cognitive process that maintains prolonged grief. Grief rumination can be measured with the Utrecht Grief Rumination Scale (UGRS). The present study aimed to examine the psychometric properties of the new Swedish version of the UGRS in a sample of bereaved parents.

    METHODS: A Swedish nationwide postal survey including measures of demographic and loss-related variables, grief rumination (UGRS), and symptoms of prolonged grief, posttraumatic stress, anxiety, depression, and insomnia, was completed by 226 parents (133 mothers and 93 fathers) who lost a child to cancer in the past five years. Psychometric properties of the UGRS were examined through confirmatory factor analyses (CFA), reliability analyses, and assessment of UGRS score associations with symptoms of prolonged grief, posttraumatic stress, depression, anxiety, and insomnia.

    RESULTS: The internal consistency of the Swedish UGRS was good. The CFA yielded an acceptable fit for a two-factor hierarchical model with five sub-factors. Grief rumination was positively associated with all psychopathology symptom measures. Higher scores on UGRS were found in parents with possible prolonged grief disorder compared to those without (d = 1.47). Moreover, the Swedish UGRS was associated with prolonged grief symptoms over and above loss-related and demographic variables and other psychopathology symptoms.

    CONCLUSIONS: The Swedish UGRS demonstrated good psychometric properties, which supports its use as a measure to assess grief rumination in Swedish bereaved parents in research and practice.

  • 38.
    Sveen, Josefin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Öhlén, Joakim
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Sandberg, Jonas
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan i Jönköping.
    Brandänge, Kristina
    Ersta sjukhus, Stockholm.
    Gustavsson, Petter
    Karolinska Institutet.
    Posttraumatic stress among not-exposed traumatically bereaved relatives after the MS Estonia disaster2016In: PLOS ONE, E-ISSN 1932-6203Article in journal (Refereed)
    Abstract [en]

    Background: Little is known about posttraumatic stress (PTS) reactions in bereaved individuals following loss in disaster who were not directly exposed to disaster. The aim of the present study was to examine the course of PTS up to three years after losing relatives in the MS Estonia ferry disaster, one of the worst maritime disasters in modern times.

    Methods: Seven postal surveys were sent out over three years post-disaster. The respondents were invited and added consecutively during the three years and 938 relatives participated in one or more of the surveys, representing 89% of the MS Estonia's Swedish victims. The survey included the Impact of Event Scale (IES) to measure PTS. Latent growth curve modeling was used to analyze PTS over time.

    Results: The majority of bereaved individuals had high levels of PTS. At three years post-loss, 62% of the respondents scored above the recommended cut-off value on the IES. Over time, PTS symptoms declined, but initially high symptoms of PTS were associated with a slower recovery rate.

    Conclusion: The present finding suggests that being an indirectly-exposed disaster-bereaved close-relative can lead to very high levels of PTS which are sustained for several years.

  • 39.
    Sveen, Josefin
    et al.
    Uppsala universitet.
    Sjöberg, Folke
    Linköpings universitet .
    Öster, Caisa
    Uppsala universitet.
    Health-related quality of life in Swedish pediatric burn patients and associations with burn and family characteristics2014In: Burns, ISSN 0305-4179, E-ISSN 1879-1409, Vol. 40, no 5, p. 987-994Article in journal (Refereed)
    Abstract [en]

    Although many children with burns recover well and have a satisfying quality of life after the burn, some children do not adjust as well. Health-related quality of life (HRQoL) focuses on the impact health status has on quality of life. The aim of this study was to assess HRQoL with the American Burn Association/Shriners Hospitals for Children Burn Outcomes Questionnaire (BOQ) in a nationwide Swedish sample of children with burns 0.3-9.0 years after injury. Participants were parents (n=109) of children aged up to 18 years at the time of investigation who were treated at the Linköping or Uppsala Burn Center between 2000 and 2008. The majority of children did not have limitations in physical function and they did not seem to experience much pain. However, there were indications of psychosocial problems. Parents of preschool children reported most problems with the children's behavior and family disruption, whereas parents of children aged 5-18 years reported most problems with appearance and emotional health. There were mainly burn-related variables associated with suboptimal HRQoL in children aged 5-18 years, while family-related variables did not contribute as much.

  • 40.
    Sveen, Josefin
    et al.
    Uppsala universitet.
    Sjöberg, Folke
    Linköpings universitet.
    Öster, Caisa
    Uppsala universitet.
    Response to Letter to the Editor: 'sleep quality implicates in life quality: an analysis about children who suffered burns'2014In: Burns, ISSN 0305-4179, E-ISSN 1879-1409, Vol. 40, no 4, p. 775-776Article in journal (Other academic)
  • 41.
    Sveen, Josefin
    et al.
    Uppsala universitet.
    Öster, Caisa
    Uppsala universitet.
    Alcohol consumption after severe burn: a prospective study2015In: Psychosomatics, ISSN 0033-3182, E-ISSN 1545-7206, Vol. 56, no 4, p. 390-396Article in journal (Refereed)
    Abstract [en]

    Background: The number of patients with alcohol-related burns admitted to burn units has increased. It has been reported previously that alcohol-related burns are an indicator of alcohol dependence, but there are few studies addressing alcohol use several years after burn injury.

    Objective: To investigate alcohol consumption 2–7 years after burn injury and to examine possible contributing factors.

    Methods: Consecutive adult patients with burns (n = 67) were included during hospitalization, and an interview was performed at 2–7 (mean = 4.6) years after burn. Data assessed at baseline were injury characteristics, sociodemographic variables, coping, and psychiatric disorders. At follow-up, the Alcohol Use Disorders Identification Test was used to identify at-risk drinking.

    Results: Overall, 22% of the burns were alcohol-related; however, this was not associated with at-risk drinking at follow-up. Of the former patients with burns, 17 (25%) were identified as having an at-risk drinking pattern at follow-up. One item in the Coping With Burns Questionnaire used in acute care, “I use alcohol, tobacco or other drugs to be able to handle my problems”, was the only factor found to predict an at-risk drinking pattern several years after injury.

    Conclusion: There were more at-risk drinkers in this burn population as compared with in the general population. The results indicate that an avoidant coping pattern, including the use of alcohol to handle problems, can be considered a potentially modifiable factor.

  • 42.
    Udo, Camilla
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan Dalarna; Centrum för Klinisk Forskning Dalarna - CKF; Uppsala universitet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet; Astrid Lindgrens Barnsjukhus, Karolinska universitetssjukhuset.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Bylund-Grenklo, Tove
    Karolinska institutet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård, Dalens sjukhus.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    A Nationwide Study of Young Adults' Perspectives on Participation in Bereavement Research2019In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 22, no 10, p. 1271-1273Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful.

    AIM: To explore how parentally bereaved and nonbereaved young adults perceive research participation.

    DESIGN: Qualitative analysis of free-text comments collected in a Swedish nation-wide survey.

    SETTING/PARTICIPANTS: Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden.

    RESULTS: Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others.

    CONCLUSIONS: It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.

  • 43.
    Weber Falk, Megan
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    End-of-Life-Related Factors Associated with Posttraumatic Stress and Prolonged Grief in Parentally Bereaved Adolescents2022In: Omega, ISSN 0030-2228, E-ISSN 1541-3764, no 1, p. 174-186Article in journal (Refereed)
    Abstract [en]

    Posttraumatic stress disorder (PTSD) and prolonged grief disorder (PGD) are well-documented in parentally bereaved adolescents. Whether or not the parent's death is perceived as traumatic may be influenced by several end-of-life-related factors. This study aimed to examine the associations between end-of-life-related factors, symptoms of posttraumatic stress disorder (PTSD), symptoms of prolonged grief disorder and PGD, and the association between PTSD and PGD. Mann-Whitney U tests and Spearman correlation were used to analyze the relationships between end-of-life-related factors, PTSD, and PGD. Regretting one's decision to be present or not present at the time of death resulted in a significant difference in self-reported scores for PTSD, but not PGD.

  • 44.
    Weber Falk, Megan
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Angelhoff, Charlotte
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Psychological symptoms in widowed parents with minor children, 2-4 years after the loss of a partner to cancer2021In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 30, no 7, p. 1112-1119Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: This study aimed to explore psychological symptoms in widowed parents with minor children, 2-4 years after the death of their partner. A second aim was to examine the associations between psychological symptoms and non-modifiable and modifiable illness and healthcare-related factors.

    METHODS: A cross-sectional survey study on widowed parents with minor children after the loss of a partner to cancer. In total, 42 parents completed an online questionnaire including instruments for assessing symptoms of anxiety, depression, grief rumination, prolonged grief, and posttraumatic stress. Descriptive statistics, Spearman's correlation coefficients, Mann Whitney U tests and Kruskal-Wallis tests were used to analyze differences in symptomology based on modifiable and non-modifiable factors.

    RESULTS: Parents reported moderate-severe symptoms of anxiety, posttraumatic stress, and depression. Reporting having received more information during the partner's illness regarding how the illness could affect the partner's somatic and psychological health and where to turn for support were associated with fewer psychological symptoms.

    CONCLUSIONS: A substantial proportion of widowed parents with minor children reported a moderate-severe symptom burden regarding depression, anxiety and posttraumatic stress, and less so with prolonged grief symptoms. This study also highlighted the value of receiving information from healthcare personnel regarding the somatic and psychological effects of a partner's illness and where widowed parents can turn for support. This article is protected by copyright. All rights reserved.

  • 45.
    Weber Falk, Megan
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Salloum, Alison
    University of South Florida, USA.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Outcomes of the grief and communication family support intervention on parent and child psychological health and communication2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 7, p. 1750-1761Article in journal (Refereed)
    Abstract [en]

    Parents and children risk developing psychological health problems following the death of a partner/parent and may need professional support. This study used the reliable change criterion and clinically significant change to examine the outcomes of the Grief and Communication Family Support Intervention, comprising three family meetings with a family therapist, among 10 parents and 14 children, using pre-post outcome scores. The results provided preliminary evidence that the Grief and Communication Family Support Intervention may improve self-esteem and reduce anxiety in some parents and may improve communication and reduce internalizing and externalizing problems in some children.

  • 46.
    Weber, Megan
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Adaptation of a Grief and Communication Family Support Intervention for Parentally Bereaved Families in Sweden2019In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 45, no 7, p. 528-537Article in journal (Refereed)
    Abstract [en]

    This article aims to describe the adaptation of the evidence-based Family Bereavement Program to a Swedish context. Empirical support indicating that family communication is a protective factor for parentally bereaved children was used to motivate the focus of the intervention. Modules from the Family Bereavement Program manual were translated, culturally adapted, and modified to fit a family format. The manual for the Grief and Communication Family Support Intervention was pilot-tested with two families, which resulted in minor modifications being made to the manual. Therapists reported that they could follow the manual and adapt it to children’s varying ages.

  • 47.
    Weber, Megan
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Communication in families with minor children following the loss of a parent to cancer.2019In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 39, p. 41-46, article id S1462-3889(19)30005-5Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Family communication is a known protective factor for minor children's psychological health following the death of a parent, but there is little research describing communication within such families specifically from the perspective of the children. The purpose of this study was therefore to explore communication in parentally bereaved families from the perspective of the children and surviving parent.

    METHODS: Interviews with four parents and four children from four families were analyzed using inductive content analysis. Interviews took place in the family's home or at the research center based on the family's wishes 4-14 months after a parent had died. Interviews had an open approach and were based on an interview guide. Each interview was between 60 and 120 min long.

    RESULTS: Four categories emerged which were related to family members' experiences of family communication while adjusting to their new circumstances as bereaved: the importance of open and honest communication in the family; new challenges in the family which affect communication; communicating the need for help; and talking about and remembering the deceased parent.

    CONCLUSIONS: This study illuminates the connection between family communication and adjustments to new circumstances following the death of a parent. The results suggest that the relationship between family adjustment and communication may be circular whereby the family's ability to adjust to their new circumstances is affected by how the family communicates. Similarly, family communication may be affected by the family's coping strategies and ability to adjust to their new circumstances.

  • 48.
    Weber, Megan
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio palliativ vård Dalen.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Family Communication and Psychological Health in Children and Adolescents Following a Parent's Death From Cancer.2021In: Omega, ISSN 0030-2228, E-ISSN 1541-3764, Vol. 83, no 3, p. 630-648Article in journal (Refereed)
    Abstract [en]

    Parentally bereaved children and adolescents are at risk of developing psychological health problems. Evidence for a correlation between communication and broad measures of psychological health exists in other populations. The aim of this study was to examine associations between family communication and specific aspects of psychological health for children and adolescents following a parent’s death from cancer using parent-proxy and adolescent self-reports. Parent-proxy reports for children and adolescents, and adolescent self-reports for Parent–Adolescent Communication, Strengths and Difficulties Questionnaire, and Prolonged Grief-13 child were analyzed using descriptive statistics and Spearman’s correlation. Parents rated communication as moderate in quality and reported good psychological health for children and adolescents. Adolescent self-reports indicated low-quality communication with their parent and poor psychological health. Significant associations between Parent–Adolescent Communication subscales and Strengths and Difficulties Questionnaire subscales were found for each group. Prolonged grief was associated with emotional problems but not communication for all three groups.

  • 49.
    Weber, Megan
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio palliativ vård Dalen.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    The Grief and Communication Family Support Intervention: Intervention Fidelity, Participant Experiences, and Potential Outcomes2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 1, p. 233-244Article in journal (Refereed)
    Abstract [en]

    This study aimed to evaluate intervention fidelity and explore participants’ experiences and potential outcomes after participating in the intervention. Using a pretest post-test pilot study, 10 parentally bereaved families completed the three-session manual-based intervention with a family therapist. Sessions were audio-recorded. Therapists completed an adherence checklist to assess fidelity. Assessments via questionnaires and interviews occurred at one month post-intervention and via questionnaires at baseline and six months post-intervention. This study showed a high level of fidelity. The study shows preliminary evidence of the intervention’s capacity to improve communication and relationships in parentally bereaved families.

  • 50.
    Willebrand, Mimmie
    et al.
    Uppsala universitet.
    Sjöberg, Folke
    Linköpings universitet.
    Huss, Fredrik
    Uppsala universitet.
    Sveen, Josefin
    Uppsala universitet.
    Parents' perceived quality of pediatric burn care.2018In: Journal of critical care, ISSN 0883-9441, E-ISSN 1557-8615, Vol. 43, p. 256-259Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To describe parents' perceived quality of pediatric burn care and evaluate factors associated with differences in perceived quality among parents.

    METHODS: 62 parents of children with burns were recruited on a Swedish national basis 0.8 to 5.6years after the child's injury. Measures were an adaptation of the Quality of Care Indices - Parent questionnaire consisting of 8 subscales and one overall question, the Impact of Event Scale -Revised, Montgomery Åsberg Depression Rating Scale, and Injury-specific fear-avoidance.

    RESULTS: Ratings of quality of care were high, especially regarding Staff Attitudes, Medical Treatment, and Caring Processes. Overall satisfaction rated from 1 to 10 was on average 9.1 (SD=1.2). Overall satisfaction and specific indices of Quality of care were not associated with burn severity, parent gender, or parent age. However, Quality of care was associated with current symptoms of posttraumatic stress and depression, and parents of girls expressed being less satisfied with Participation.

    CONCLUSIONS: Parents' perceived quality of care is associated with psychological health, but not with characteristics of the child's injury or age. The results suggest that burn care can improve by involving parents of girls more and by being more attentive towards parents who themselves appear stressed or worried.

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