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  • 1.
    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
    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.

  • 2.
    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.

  • 3.
    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.

  • 4.
    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.

  • 5.
    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
    Nederländerna.
    Rumination in bereaved parents: Psychometric evaluation of the Swedish version of the Utrecht Grief Rumination Scale (UGRS).2019In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 14, no 3, 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.

  • 6.
    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, ISSN 1932-6203, 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.

  • 7.
    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 Disease.2018In: 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.

1 - 7 of 7
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