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11.
  • Carlsson, Tommy, et al. (författare)
  • Being involved in research as a collaborator with experience of a prenatal diagnosis of congenital heart defect in the fetus : a qualitative study
  • 2020
  • Ingår i: Research Involvement and Engagement. - : BioMed Central. - 2056-7529. ; 6
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: An increasing number of research projects are now collaborating with persons who have lived experience of a specific health-related situation, such as a prenatal diagnosis of congenital heart defect. Such collaboration has the potential to provide valuable insights how to plan future studies, but little is known how these persons experience such involvement. The aim was to explore how persons with lived experience of a prenatal diagnosis perceived collaborating in a research project utilizing patient and public involvement to identify relevant research questions and develop suitable interventions.Methods: Persons with experience of a prenatal diagnosis of congenital heart defect in the fetus were interviewed after their participation in a yearlong collaborative research project (n = 9) aiming to explore relevant research questions and develop interventions for expectant parents with a recent prenatal diagnosis. Interviews were analyzed with qualitative content analysis.Results: Respondents acknowledged altruistic and personal value related to the collaboration. They valued the opportunity to contribute to future research so that the care of persons experiencing a prenatal diagnosis may be improved. Mixed feelings were described related to sharing and reliving experiences. While it had been emotionally difficult to relive a traumatic event, it also served as an opportunity to process experiences and psychologically adapt. Respondents with terminated pregnancies appreciated the possibility to meet peers, since it was difficult to find peers in everyday life and talk about their experiences with others.Conclusions: Researchers who plan to collaborate with persons who have experience of a prenatal diagnosis should be mindful of the potential associated emotional experiences. The appreciation related to meeting peers calls attention to the need for studies that explore peer support.
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12.
  • Carlsson, Tommy, et al. (författare)
  • Peer support among parents of children with congenital heart defects : A qualitative analysis of written responses submitted via an online survey
  • 2020
  • Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 76:12, s. 3528-3536
  • Tidskriftsartikel (refereegranskat)abstract
    • Aim: To explore experiences of peer support among parents of children with congenital heart defects. Design: A study analysing written responses to open-ended questions about peer support, collected via an online survey distributed in Sweden. Methods: Respondents were recruited during 3 months in 2018 by means of convenience sampling, through ads via the Swedish foundation for families with children who have heart defects and two closed Facebook groups for peer support. An online survey containing open-ended questions was distributed and responses were analysed with systematic text condensation. Results: Peer support was grounded in a mutual understanding among parents and involved highly appreciated emotional support. Listening to the stories of peers meant an opportunity to gain useful insights about what life is like for parents of children with heart defects. Receiving and providing peer support was described as rewarding on a personal level. Negative aspects of peer support were also described, which sometimes led to psychological distress and withdrawal from peer support activities. Conclusion: Peer support is emotionally relieving and appreciated among parents of children with congenital heart defects, who consider providing the support a rewarding responsibility. While peer support activities may have considerable benefits for individuals, it may also lead to psychological distress for some. Impact: This study addressed peer support among parents of children with congenital heart defects. The main findings illustrate the potential impact peer support can have on individuals and calls attention to the experienced benefits related to peer support activities, while also providing some insights regarding potential negative aspects. The findings have relevance for nurses, midwives, and other health professionals working in settings providing care for these families.
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13.
  • Carlsson, Tommy, et al. (författare)
  • Peer Support Experienced by Mothers of Children With Congenital Heart Defects in Sweden
  • 2022
  • Ingår i: Journal of Family Nursing. - : SAGE Publications. - 1074-8407 .- 1552-549X. ; 28:2, s. 142-150
  • Tidskriftsartikel (refereegranskat)abstract
    • The aim of this study was to describe experiences of peer support among mothers of children with congenital heart defects. Ten mothers were interviewed through a semi-structured approach and interviews were analyzed with systematic text condensation. The respondents established various channels used for peer support and navigated between the channels depending on what type of information or support they needed. Through the channels, they found peers they developed strong friendships with and who they relied on for emotional support. Communicating with peers involved the reciprocal exchange of unique emotional support between peers who understand each other as well as the exchange of information derived from their collective knowledge, and thus, difficult to find without the help of peers. The findings illustrate the potential strengths of establishing reliable collaboration and liaisons between clinical units and peer support networks.
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14.
  • Carlsson, Tommy, et al. (författare)
  • Waterbirth in low-risk pregnancy : An exploration of women's experiences
  • 2020
  • Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 76:5, s. 1221-1231
  • Tidskriftsartikel (refereegranskat)abstract
    • Aims To explore retrospective descriptions about benefits, negative experiences and preparatory information related to waterbirths. Design A qualitative study. Methods Women who gave birth in water with healthy pregnancies and low-risk births were consecutively recruited between December 2015-October 2018 from two birthing units in Sweden. All who gave birth in water during the recruitment period were included (N = 155) and 111 responded to the survey. Women were emailed a web-based survey six weeks postpartum. Open-ended questions were analysed with qualitative content analysis. Results Two themes were identified related to benefits: (a) physical benefits: the water eases labour progression while offering buoyancy and pain relief; and (b) psychological benefits: improved relaxation and control in a demedicalized and safe setting. Two themes were identified related to negative experiences: (a) equipment-related issues due to the construction of the tub and issues related to being immersed in water; and (b) fears and worries related to waterbirth. In regard to preparatory information, respondents reported a lack of general and specific information related to waterbirths, even after they contacted birthing units to ask questions. Supplemental web-based information was sought, but the trustworthiness of these sources was questioned and a need for trustworthy web-based information was articulated. Conclusion Women who give birth in water experience physical and psychological benefits, but need better equipment and sufficient information. There is room for improvement with regard to prenatal and intrapartum care of women who give birth in water. Impact Judging from women's recounts, midwives and nurses should continue advocating waterbirth in low-risk pregnancies. The lack of adequate equipment in Swedish birthing units articulated by women challenge current routines and resources. The findings illustrate unfulfilled needs for preparatory information about waterbirth, further strengthening that midwives should discuss the possibility of waterbirth when meeting expectant parents in the antenatal setting.
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15.
  • Doring, Nora, et al. (författare)
  • Primary prevention of childhood obesity through counselling sessions at Swedish child health centres : design, methods and baseline sample characteristics of the PRIMROSE cluster-randomised trial
  • 2014
  • Ingår i: BMC Public Health. - : Springer Science and Business Media LLC. - 1471-2458. ; 14:335
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Childhood obesity is a growing concern in Sweden. Children with overweight and obesity run a high risk of becoming obese as adults, and are likely to develop comorbidities. Despite the immense demand, there is still a lack of evidence-based comprehensive prevention programmes targeting pre-school children and their families in primary health care settings. The aims are to describe the design and methodology of the PRIMROSE cluster-randomised controlled trial, assess the relative validity of a food frequency questionnaire, and describe the baseline characteristics of the eligible young children and their mothers. Methods/Design: The PRIMROSE trial targets first-time parents and their children at Swedish child health centres (CHC) in eight counties in Sweden. Randomisation is conducted at the CHC unit level. CHC nurses employed at the participating CHC received training in carrying out the intervention alongside their provision of regular services. The intervention programme, starting when the child is 8-9 months of age and ending at age 4, is based on social cognitive theory and employs motivational interviewing. Primary outcomes are children's body mass index and waist circumference at four years. Secondary outcomes are children's and mothers' eating habits (assessed by a food frequency questionnaire), and children's and mothers' physical activity (measured by accelerometer and a validated questionnaire), and mothers' body mass index and waist circumference. Discussion: The on-going population-based PRIMROSE trial, which targets childhood obesity, is embedded in the regular national (routine) preventive child health services that are available free-of-charge to all young families in Sweden. Of the participants (n = 1369), 489 intervention and 550 control mothers (75.9%) responded to the validated physical activity and food frequency questionnaire at baseline (i.e., before the first intervention session, or, for children in the control group, before they reached 10 months of age). The food frequency questionnaire showed acceptable relative validity when compared with an 8-day food diary. We are not aware of any previous RCT, concerned with the primary prevention of childhood obesity through sessions at CHC that addresses healthy eating habits and physical activity in the context of a routine child health services programme.
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16.
  • Edfeldt, Katarina, 1979-, et al. (författare)
  • A Plausible Role for Actin Gamma Smooth Muscle 2 (ACTG2) in Small Intestinal Neuroendocrine Tumorgenesis
  • 2016
  • Ingår i: BMC Endocrine Disorders. - : BioMed Central (BMC). - 1472-6823. ; 16
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Small intestinal neuroendocrine tumors (SI-NETs) originate from the enterochromaffin cells in the ileum and jejunum. The knowledge about genetic and epigenetic abnormalities is limited. Low mRNA expression levels of actin gamma smooth muscle 2 (ACTG2) have been demonstrated in metastases relative to primary SI-NETs. ACTG2 and microRNA-145 (miR-145) are aberrantly expressed in other cancers and ACTG2 can be induced by miR-145. The aim of this study was to investigate the role of ACTG2 in small intestinal neuroendocrine tumorigenesis.METHODS: Protein expression was analyzed in SI-NETs (n = 24) and in enterochromaffin cells by immunohistochemistry. The cell line CNDT2.5 was treated with the histone methyltransferase inhibitor 3-deazaneplanocin A (DZNep), the selective EZH2 inhibitor EPZ-6438, or 5-aza-2'-deoxycytidine, a DNA hypomethylating agent. Cells were transfected with ACTG2 expression plasmid or miR-145. Western blotting analysis, quantitative RT-PCR, colony formation- and viability assays were performed. miR-145 expression levels were measured in tumors.RESULTS: Eight primary tumors and two lymph node metastases displayed variable levels of positive staining. Fourteen SI-NETs and normal enterochromaffin cells stained negatively. Overexpression of ACTG2 significantly inhibited CNDT2.5 cell growth. Treatment with DZNep or transfection with miR-145 induced ACTG2 expression (>10-fold), but no effects were detected after treatment with EPZ-6438 or 5-aza-2'-deoxycytidine. DZNep also induced miR-145 expression. SI-NETs expressed relatively low levels of miR-145, with reduced expression in metastases compared to primary tumors.CONCLUSIONS: ACTG2 is expressed in a fraction of SI-NETs, can inhibit cell growth in vitro, and is positively regulated by miR-145. Theoretical therapeutic strategies based on these results are discussed.
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17.
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18.
  • Edfeldt, Katarina, et al. (författare)
  • Different gene expression profiles in metastasizing midgut carcinoid tumors
  • 2011
  • Ingår i: Endocrine-Related Cancer. - 1351-0088 .- 1479-6821. ; 18:4, s. 479-489
  • Tidskriftsartikel (refereegranskat)abstract
    • The genetic events leading the progression of midgut carcinoid tumors are largely unknown. The disease course varies from patient to patient, and there is a lack of reliable prognostic markers. In order to identify genes involved in tumor progression, gene expression profiling was performed on tumor specimens. Samples comprised 18 primary tumors, 17 lymph node (LN) metastases, and seven liver metastases from a total of 19 patients. Patients were grouped according to clinical data and histopathology into indolent or progressive course. RNA was subjected to a spotted oligo microarray and B-statistics were performed. Differentially expressed genes were verified using quantitative real-time PCR. Self-organizing maps demonstrated three clusters: 11 primary tumors separated in one cluster, five LN metastases in another cluster, whereas all seven liver metastases, seven primary, and 12 LN metastases formed a third cluster. There was no correlation between indolent and progressive behavior. The primary tumors with Ki67>5%, with low frequency of the carcinoid syndrome, and a tendency toward shorter survival grouped together. Primary tumors differed in expression profile from their associated LN metastases; thus, there is evidence for genetic changes from primary tumors to metastases. ACTG2, GREM2, REG3A, TUSC2, RUNX1, TPH1, TGFBR2, and CDH6 were differentially expressed between clusters and subgroups of tumors. The expression profile that assembles tumors as being genetically similar on the RNA expression level may not be concordant with the clinical disease course. This study reveals differences in gene expression profiles and novel genes that may be of importance in midgut carcinoid tumor progression.
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19.
  • Edfeldt, Katarina, 1979- (författare)
  • Small Intestinal Neuroendocrine Tumours : Genetic and Epigenetic Studies and Novel Serum Biomarkers
  • 2014
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Small intestinal neuroendocrine tumours (SI-NETs) are rare, hormone producing and proliferate slowly. Patients usually display metastases at time of diagnosis, the tumours are difficult to cure, and the disease course is unpredictable.The gene expression pattern was investigated in paper I, with emphasis on aggressive disease and tumour progression. Expression microarrays were performed on 42 tumours. Unsupervised hierarchal clustering revealed three clusters that were correlated to clinical features, and expression changes from primary tumour to metastasis. Eight novel genes, ACTG2, GREM2, REG3A, TUSC2, RUNX1, TGFBR2, TPH1 and CDH6 may be of importance for tumour progression.In paper II, expression of ACTG2 was detected in a fraction of SI-NETs, but not in normal enterochromaffin cells. Inhibition of histone methyltransferase and transfection of miR-145 induced expression and no effect was seen after DNA methylation or selective EZH2 inhibition in vitro. miR-145 expression was reduced in metastases compared to primary tumours. Overexpression of ACTG2 inhibited cell growth, and inducing ACTG2 may have therapeutic effects.TCEB3C (Elongin A3) is located on chromosome 18 and is imprinted in some tissues. In paper III a reduced protein expression was detected. The gene was epigenetically repressed by both DNA and histone methylation in a tumour tissue specific context. The expression was also induced in primary cell cultures after DNA demethylation and pyrosequencing revealed promoter region hypermethylation. Overexpression of TCEB3C inhibited cell growth by 50%, suggesting TCEB3C to be a tumour suppressor gene.In paper IV, 69 biomarkers were analysed in blood serum using multiplex proximity ligation assay. Nineteen markers displayed different levels between patients and controls. In an extended cohort, ELISA analysis showed elevated serum levels of Mindin, DcR3 and TFF3 in patients and protein expression in tumour cells. High levels of DcR3 and TFF3 were associated with poor survival, and DcR3 may be a marker for liver metastases. Mindin, DcR3, and TFF3 are potential novel diagnostic biomarkers for SI-NETs.
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20.
  • Edfeldt, Katarina, et al. (författare)
  • TCEB3C a putative tumor suppressor gene of small intestine neuroendocrine tumors
  • 2014
  • Ingår i: Endocrine-Related Cancer. - 1351-0088 .- 1479-6821. ; 21:2, s. 275-284
  • Tidskriftsartikel (refereegranskat)abstract
    • Small intestinal neuroendocrine tumors (SI-NETs), formerly midgut carcinoids, are rare and slow-growing neoplasms. Frequent loss of one copy of chromosome 18 in primary tumors and metastases has been observed. The aim of the study was to investigate a possible role of TCEB3C (Elongin A3), currently the only imprinted gene on chromosome 18, as a tumor suppressor gene in SI-NETs, and whether its expression is epigenetically regulated. Primary tumors, metastases, the human SI-NET cell line CNDT2.5, and two other cell lines were included. Immunohistochemistry, gene copy number determination by PCR, colony formation assay, Western blotting, real-time quantitative RT-PCR, RNA interference, and quantitative CpG methylation analysis by pyrosequencing were performed. The large majority of tumors (33/43) showed very low to undetectable Elongin A3 expression and as expected 89% (40/45) displayed one TCEB3C gene copy. The DNA hypomethylating agent 5-aza-2'-deoxycytidine induced TCEB3C expression in CNDT2.5 cells, in primary SI-NET cells prepared directly after surgery, but not in two other cell lines. Also siRNA to DNMT1 and treatment with the general histone methyltransferase inhibitor 3-deazaneplanocin A induced TCEB3C expression in a cell type-specific way. CpG methylation at the TCEB3C promoter was observed in all analyzed tissues and thus not related to expression. Overexpression of TCEB3C resulted in a 50% decrease of clonogenic survival of CNDT2.5 cells, but not of control cells. The results support a putative role of TCEB3C as a tumor suppressor gene in SI-NETs. Epigenetic repression of TCEB3C seems to be tumor cell type-specific and involves both DNA and histone methylation.
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