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  • 1.
    Bartholdson, Cecilia
    et al.
    Karolinska Institutet; Karolinska Universitetssjukhuset.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Sveen, Josefin
    Uppsala universitet.
    Lövgren, Malin
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Universitetssjukhuset.
    Pohlkamp, Lilian
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Communication about diagnosis and prognosis: A population-based survey among bereaved parents in pediatric oncology2022In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 31, no 12, p. 2149-2158Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: When a child is diagnosed with cancer, the whole family is affected, and parents struggle to grasp challenging information regarding diagnosis and prognosis. Most parents and children want honest communication and openness, yet this remains a complex and challenging task for healthcare professionals.

    OBJECTIVES: To describe bereaved mothers' and fathers' reports of communication of their child's cancer diagnosis and when the illness became incurable.

    METHODS: Data from a Swedish population-based survey conducted in 2016, including 135 mothers and 97 fathers who had lost a child to cancer 1-5 years earlier, were studied regarding the parents' reports of communication about their child's illness.

    RESULTS: A vast majority of parents wants information when their child's illness becomes incurable, and this need is generally met. However, fathers to a lesser extent than mothers, reported that they were informed about it. According to parents' reports 87 % of children received diagnostic information and 44 % of the children received prognostic information.

    CONCLUSION: A vast majority of both mothers and fathers would like to know when their child's illness becomes incurable, yet it remains unknown to what extent they want their child to be informed. This article is protected by copyright. All rights reserved.

  • 2.
    Gabrielsson, Hanna
    et al.
    Röda Korsets Högskola, Hälsovetenskapliga institutionen.
    Hjorth, Elin
    Marie Cederschiöld University, Department of Health Care Sciences.
    Wallin, Viktoria
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Pohlkamp, Lilian
    Marie Cederschiöld University, Department of Health Care Sciences.
    Övergången från att vara patient med cancer till person med erfarenhet av cancer: Civilsamhällets roll i rehabilitering2023In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 100, no 1, p. 165-178Article, review/survey (Refereed)
    Abstract [en]

    A completed cancer treatment does not automatically mean an end to the challenges often following cancer. The need for cancer rehabilitation grow as the number of people that survives cancer increases. It is not entirely clear which rehabilitation services are in demand or which actors should offer these. Through a literature review, this study has shed light on the role of civil society in the Nordic countries in rehabilitation after cancer, as well as study participants’ experiences of cancer rehabilitation. The results of the literature review show that few studies have been published addressing the role of civil society in cancer rehabilitation. People who have undergone a cancer disease often need support, and support from people in a similar situation was appreciated by many. The results state that civil society plays a significant role in the organization of cancer rehabilitation. 

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  • 3.
    Hjorth, Elin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Gabrielsson, Hanna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Wallin, Viktoria
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Patientorganisationer som företräder riskgrupper under covid-19-pandemin: förändringar i organisation och relation till andra aktörer2021In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 98, no 1, p. 38-47Article in journal (Refereed)
    Abstract [en]

    During the COVID-19 pandemic major changes took place in Swedish society, changes that also affected patient organizations representing people with increased risk of severe illness of COVID-19. This study focuses on the initial phase of the COVID-19 pandemic and how patient organizations’ relationships with their members and other actors were affected. The study shows that patient organizations were fast to make the necessary organisational reforms and thus able to meet new urgent needs.

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  • 4.
    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.

  • 5.
    Pohlkamp, Lilian
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Att möta människor i komplicerad sorg2022Conference paper (Refereed)
    Abstract [sv]

    Sorg är en naturlig del av livet, för att vi människor är sociala och knyter relationer igenom hela livet. Att bearbeta förlusten när en älskad person dör kräver ett sorgearbete, många klarar det på egen hand med stöd i sitt sociala nätverk. Sorg som är ihållande och behöver behandling, brukar benämnas komplicerad sorg. Presentationen på denna konferens kommer att fokusera på mötet med människor med komplicerad sorg, samt faktorer som kan ge en djupare förståelse av fenomenet.

  • 6.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Bereaved mothers and fathers: Grief and psychological health 1 to 5 years after losing a child to cancer2020Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Bereaved parents often experience severe suffering and are at elevated risk for developing grief complications such as prolonged grief and other negative psychological health outcomes. The general aim of this thesis was to investigate symptoms of prolonged grief, depression, posttraumatic stress, anxiety, rumination, and sleep disturbance in parents who had lost a child to cancer 1 to5 years earlier. Attention was also given to the potential impact on the parents’grief of their experiences during the child’s illness, and finally to the parents’ views on their coping with grief. Methods: A cross-sectional design for data collection was used for all four studies in this thesis. Both quantitative and qualitative methods were used for data analysis, to provide various and complementing perspectives on bereaved parents’ grief and their psychological health. Results:Bereaved parents’ symptom levels of prolonged grief and psychological symptoms were found to be elevated and neither time- nor gender-dependent across the first five years after the loss. We also found that some of the parents’experiences during their child’s illness were associated with their grief and psychological symptoms. These factors differed for mothers and fathers. Mothers valued trustful relations with health care professionals, while fathers reported better psychological health when they had received support in practical matters. Findings also showed that parents found certain factors facilitated or complicated their coping with grief. Unsurprisingly, social support promoted positive coping with grief, while a less familiar factor – going back to work – could make coping with grief harder. Clinical implications: The findings provide knowledge which can improve the care for children, through development of support to their parents in pediatric oncology contexts and in bereavement.

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    Doktorsavhandling
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  • 7.
    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.

  • 8.
    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.

  • 9.
    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.

  • 10.
    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.

  • 11.
    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.

  • 12.
    Pohlkamp, Lilian
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Wallin, Viktoria
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Hjorth, Elin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Gabrielsson, Hanna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Ömsesidiga hjälporganisationer i Sverige uppvisar resiliens under covid-19-pandemin2021In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 98, no 1, p. 48-58Article in journal (Refereed)
    Abstract [en]

    Mutual aid organizations in Sweden provide extensive social support and advocacy work. Restrictions and guidelines to limit the spread of COVID-19 have forced to these organizations adapting their ways of working significantly. We conducted remote interviews with representatives of nine such organizations. The results indicate that they largely have been able to continue to support their members, despite the changed conditions, creatively adjusting their activities using new solutions. In this paper, the results are discussed using resilience as a key concept, including its significance at both an individual and a societal level.

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  • 13.
    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.

  • 14.
    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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  • 15.
    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.

  • 16.
    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.

  • 17.
    Winnberg, Elisabeth
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Winnberg, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Hagberg, Anette
    Uppsala universitet.
    What to Do with a Second Chance in Life?: Long-Term Experiences of Non-carriers of Huntington's Disease2018In: Journal of Genetic Counseling, ISSN 1059-7700, E-ISSN 1573-3599, Vol. 27, no 6, p. 1438-1446Article in journal (Refereed)
    Abstract [en]

    Little is known about how people's lives are influenced when going from a 50% risk status of Huntington's disease (HD) to no risk after performing predictive testing. In this study, 20 interviews were conducted to explore the long-term (> 5 years) experiences after receiving predictive test results as a non-carrier of HD. The results showed a broad variety of both positive and negative reactions. The most prominent positive reaction reported was feelings of relief and gratitude, of not carrying the HD mutation for themselves and for their children. Also, the non-carrier status promoted in some individuals' significant life changes such as a wishing to have (more) children, pursuing a career or breaking up from an unhappy relationship. However, negative reactions on their psychological well-being were also described. Some had experienced psychological pressure of needing to do something extraordinary in their lives; others expressed feelings of guilt towards affected or untested siblings, resulting in sadness or clinical depression. The new genetic risk status could generate a need of re-orientation, a process that for some persons took several years to accomplish. The results of the present study show the importance of offering long-term post-result counselling for non-carriers in order to deal with the psychological consequences that may follow predictive testing.

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