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| 2. |
- Forinder, Ulla, et al.
(författare)
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Posttraumatic growth and support among parents whose children have survived stem cell transplantation
- 2014
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Ingår i: Journal of Child Health Care. - : SAGE Publications. - 1367-4935 .- 1741-2889. ; 18:4, s. 326-335
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Tidskriftsartikel (refereegranskat)abstract
- In the current study, we investigated the occurrence of posttraumatic growth (PTG) among parents whose children had had stem cell transplantation (SCT) and survived. Although SCT is well established, it remains stressful and dangerous, and SCT is only performed if there is no other choice of treatment to be considered. A questionnaire batteries including the Post-Traumatic Stress Disorder (PTSD) Check ListCivilian version and the Post-Traumatic Growth Inventory were sent out to a cross-sectional national sample of parents of children who had had SCT six months or more before the study. The response rate was 66% (n = 281). The data were analyzed in relation to parents' appraisal of the event, gender, and perceived social support. The results confirm that SCT in childhood is an event of extreme adversity for the parents. Indications of PTSD were found among an important minority of the parents. Nevertheless, a large proportion of the parents had experienced growth as a consequence of the child's illness. Appreciation of life and personal strength were the domains with the highest scores. Moreover, a higher level of PTG was correlated with a higher level of posttraumatic stress and with an experience of the trauma as more severe. In summary, the study indicates that PTG is a relevant concept for this group of parents.
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| 3. |
- Grönqvist, Helena, 1975-, et al.
(författare)
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Fifteen Challenges in Establishing a Multidisciplinary Research Program on eHealth Research in a University Setting : A Case Study
- 2017
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 19:5
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:U-CARE is a multidisciplinary eHealth research program that involves the disciplines of caring science, clinical psychology, health economics, information systems, and medical science. It was set up from scratch in a university setting in 2010, funded by a governmental initiative. While establishing the research program, many challenges were faced. Systematic documentation of experiences from establishing new research environments is scarce.OBJECTIVE:The aim of this paper was to describe the challenges of establishing a publicly funded multidisciplinary eHealth research environment.METHODS:Researchers involved in developing the research program U-CARE identified challenges in the formal documentation and by reflecting on their experience of developing the program. The authors discussed the content and organization of challenges into themes until consensus was reached.RESULTS:The authors identified 15 major challenges, some general to establishing a new research environment and some specific for multidisciplinary eHealth programs. The challenges were organized into 6 themes: Organization, Communication, Implementation, Legislation, Software development, and Multidisciplinarity.CONCLUSIONS:Several challenges were faced during the development of the program and several accomplishments were made. By sharing our experience, we hope to help other research groups embarking on a similar journey to be prepared for some of the challenges they are likely to face on their way.
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- Lindahl Norberg, Annika, 1960-
(författare)
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Burnout in Mothers and Fathers of Children Surviving Brain Tumour
- 2007
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Ingår i: Journal of clinical psychology in medical settings. - : Springer Science and Business Media LLC. - 1068-9583 .- 1573-3572. ; 14:2, s. 130-137
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this paper was to investigate the occurrence of burnout among parents of brain tumour survivors. Burnout was assessed in 24 mothers and 20 fathers of childhood brain tumour survivors, using the Shirom–Melamed Burnout Questionnaire. Parents of children with no history of chronic or serious diseases served as a reference group. Mothers’ burnout scores were significantly higher compared with reference mothers. For fathers, no relation between burnout and being a parent of a brain tumour survivor was established, despite a nonsignificant tendency in the same direction as for the mothers. In conclusion, the parenting burden after a child’s brain tumour may include chronic strain, and this may be particularly taxing for mothers. The findings encourage further studies of psychological exhaustion among parents of children with special needs.
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| 5. |
- Lindahl Norberg, Annika, 1960-, et al.
(författare)
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Relationship between problems related to child late effects and parent burnout after pediatric hematopoietic stem cell transplantation
- 2014
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Ingår i: Pediatric Transplantation. - : Wiley. - 1397-3142 .- 1399-3046. ; 18:3, s. 302-309
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Tidskriftsartikel (refereegranskat)abstract
- A few studies have indicated that parents' reactions to a child's serious disease may entail long-term stress for the parents. However, further knowledge of its consequences is valuable. The aim of the study was to investigate the occurrence of burnout in a Swedish national sample of parents of children who had undergone HSCT and survived. Burnout (Shirom-Melamed Burnout Questionnaire) and estimations of the child's health status (Lansky/Karnofsky estimations and study-specific questions) were self-reported by 159 mothers and 123 fathers. In addition, physicians made estimations of the child's health status (Lansky/Karnofsky estimations). Nonparametric tests revealed that burnout symptoms occurred more often among fathers of children who had undergone transplantation within the last five yr compared to fathers of children with no history of serious disease (34.4% vs. 19.9%). Burnout among mothers and fathers was associated with the child's number and severity of health impairments up to five yr after the child underwent HSCT (Spearman's rho for mothers 0.26-0.36 and for fathers 0.36-0.61). In conclusion, chronic stress in parents after a child's HSCT seems to abate eventually. However, parents should be monitored and offered adequate support when needed. Moreover, the situation of fathers in the often mother-dominated pediatric setting should receive more attention in research as well as in the clinic.
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| 6. |
- Lindahl Norberg, Annika, 1960-, et al.
(författare)
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Säker och god vård vid universitet
- 2013
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Ingår i: Läkartidningen. - Stockholm. - 0023-7205 .- 1652-7518. ; :49-50
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Tidskriftsartikel (populärvet., debatt m.m.)
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| 7. |
- Riva, Roberto, et al.
(författare)
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Patterns of psychological responses in parents of children that underwent stem cell transplantation
- 2014
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Ingår i: Psycho-Oncology. - : Wiley. - 1057-9249 .- 1099-1611. ; 23:11, s. 1307-1313
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Tidskriftsartikel (refereegranskat)abstract
- ObjectiveHematopoietic stem cell transplantation (HSCT) is curative in several life-threatening pediatric diseases but may affect children and their families inducing depression, anxiety, burnout symptoms, and post-traumatic stress symptoms, as well as post-traumatic growth (PTG). The aim of this study was to investigate the co-occurrence of different aspects of such responses in parents of children that had undergone HSCT. MethodsQuestionnaires were completed by 260 parents (146 mothers and 114 fathers) 11-198 months after HSCT: the Hospital Anxiety and Depression Scale, the Shirom-Melamed Burnout Questionnaire, the post-traumatic stress disorders checklist, civilian version, and the PTG inventory. Additional variables were also investigated: perceived support, time elapsed since HSCT, job stress, partner-relationship satisfaction, trauma appraisal, and the child's health problems. A hierarchical cluster analysis and a k-means cluster analysis were used to identify patterns of psychological responses. ResultsFour clusters of parents with different psychological responses were identified. One cluster (n=40) significantly differed from the other groups and reported levels of depression, anxiety, burnout symptoms, and post-traumatic stress symptoms above the cut-off. In contrast, another cluster (n=66) reported higher levels of PTG than the other groups did. ConclusionsThis study shows a subgroup of parents maintaining high levels of several aspects of distress years after HSCT. Differences between clusters might be explained by differences in perceived support, the child's health problems, job stress, and partner-relationship satisfaction.
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