| 21. |
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| 22. |
- Drevin, Jennifer
(författare)
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Measuring Pregnancy Planning and the Effect of Childhood Abuse on Reproductive Health
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The London Measure of Unplanned Pregnancy (LMUP) and the Swedish Pregnancy Planning Scale (SPPS) are two measurements of pregnancy planning. Adverse childhood experiences (ACEs) and childhood abuse are stressful events that have been suggested to have both short- and long-term effects.Study I investigated the psychometric properties of the LMUP and the SPPS and compared their assessments. Questionnaire data from 2,314 pregnant women showed medium-high construct validity and high test-retest reliability for both measurements. The convergent validity of LMUP was low. The assessments of the LMUP and the SPPS corresponded substantially.Study II explored how the SPPS was interpreted and what women considered when responding to it. Twenty-five pregnant women were interviewed. Women responding to the SPPS took into account their life situation, intentions, desires, timing, actions to prepare for, or avoid, pregnancy, having discussed becoming pregnant with their partner, and reactions after learning of the pregnancy.Study III analysed the association between ACEs and pregnancy-related pain. Pregnant women (n = 142) responded to questionnaires in early and late pregnancy, respectively, and reported their pain intensities and pain distributions. Greater exposure to ACEs was associated with higher pain distribution and women exposed to ACEs reported higher worst pain intensities compared to non-exposed.Study IV investigated effects of childhood emotional, physical and sexual abuse on pregnancy planning. The effect of a potential collider-stratification bias were also studied. Questionnaire data from 76,197 pregnant Norwegian women showed separate but no joint effects of the categories on having an unplanned pregnancy and a collider-stratification bias could not explain the effects.The LMUP and the SPPS measure somewhat different aspects of pregnancy planning and there is a substantial agreement between their assessments. Both the LMUP and the SPPS showed good validity and test-retest reliability. However, the LMUP would likely benefit from item reduction and the SPPS poorly captures any health-related changes made in and the preconception period.The results suggest that childhood abuse and ACEs have an effect on pregnancy planning and pregnancy-related pain. The findings suggest that preventing child abuse could have a positive effect on later reproductive health.
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| 23. |
- Drevin, Jennifer, et al.
(författare)
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Patients' views on using human embryonic stem cells to treat Parkinson's disease : an interview study
- 2022
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Ingår i: BMC Medical Ethics. - : Springer Nature. - 1472-6939. ; 23
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Tidskriftsartikel (refereegranskat)abstract
- Background: Human embryonic stem cells (hESC) as a source for the development of advanced therapy medicinal products are considered for treatment of Parkinson's disease (PD). Research has shown promising results and opened an avenue of great importance for patients who currently lack a disease modifying therapy. The use of hESC has given rise to moral concerns and been the focus of often heated debates on the moral status of human embryos. Approval for marketing is still pending.Objective: To Investigate the perspectives and concerns of patients with PD, patients being the directly concerned stakeholders in the ethical discussion.Methods: Qualitative semi-structured interviews related to this new therapy in seventeen patients from two Swedish cities.Results: The participants expressed various interests related to the use of human embryos for development of medicinal therapies; however, overall, they were positive towards the use of hESC for treatment of PD. It was deemed important that the donating woman or couple made the choice to donate embryos voluntarily. Furthermore, there were concerns that the industry does not always prioritise the patient over profit; thus, transparency was seen as important.
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| 24. |
- Engström, Gunnar, et al.
(författare)
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The Swedish CArdioPulmonary BioImage Study : objectives and design
- 2015
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Ingår i: Journal of Internal Medicine. - : Wiley. - 0954-6820 .- 1365-2796. ; 278:6, s. 645-659
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Tidskriftsartikel (refereegranskat)abstract
- Cardiopulmonary diseases are major causes of death worldwide, but currently recommended strategies for diagnosis and prevention may be outdated because of recent changes in risk factor patterns. The Swedish CArdioPulmonarybioImage Study (SCAPIS) combines the use of new imaging technologies, advances in large-scale 'omics' and epidemiological analyses to extensively characterize a Swedish cohort of 30 000 men and women aged between 50 and 64 years. The information obtained will be used to improve risk prediction of cardiopulmonary diseases and optimize the ability to study disease mechanisms. A comprehensive pilot study in 1111 individuals, which was completed in 2012, demonstrated the feasibility and financial and ethical consequences of SCAPIS. Recruitment to the national, multicentre study has recently started.
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| 25. |
- Ferm Widlund, Kjerstin, et al.
(författare)
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Pregnant women are satisfied with the information they receive about prenatal diagnosis, but are their decisions well informed?
- 2009
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Ingår i: Acta Obstetricia et Gynecologica Scandinavica. - : Wiley. - 0001-6349 .- 1600-0412. ; 88:10, s. 1128-1132
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE. To survey the information about prenatal diagnosis that midwives give to pregnant women and to find out how the women experience the information. Furthermore, to evaluate the midwives' opinion about their knowledge and personal need for education. DESIGN. Descriptive cross-sectional study. SETTING. The southeast healthcare region of Sweden. METHODS. One hundred and fifty-seven midwives and 150 pregnant women were invited to reply to a confidential questionnaire in 2008. RESULTS. The reply rate was 78% for the midwives and 53% for the women. Ninety-six percentage of the midwives used < or =10 minutes to inform women about prenatal diagnosis. Seventy-two percentage always informed about the advantages and 41% about the choice to continue or terminate the pregnancy if a serious abnormality was detected. In addition, 41% considered that they had sufficient knowledge to inform about prenatal diagnosis, while 84% wanted additional education. Seventy-six percentage of the women took the decision to have prenatal diagnosis as soon as they found out that they were pregnant. A majority considered that they had been given enough time for questions and reflections. CONCLUSIONS. There was discrepancy between the amount of information, which midwives gave to pregnant women about prenatal diagnosis compared to what would be needed for a complete understanding of the relevant medical facts and the risks involved, but even so the women were satisfied with the information.
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| 26. |
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| 27. |
- Frygner-Holm, Sara, et al.
(författare)
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Pretend Play as an Intervention for Children With Cancer : A Feasibility Study
- 2020
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Ingår i: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 37:1, s. 65-75
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Tidskriftsartikel (refereegranskat)abstract
- Children with cancer suffer from symptoms and burdensome treatments that often cause distress to children and their families. Mortality is one aspect of cancer diagnosis, while another is the quality of life and well-being during and after the treatment. By supporting children's communication, self-efficacy and coping ability in the care situation, children are given the possibilities for increased independence and participation and are allowed to develop an influence over their care. The aim of this study was to develop and evaluate the feasibility and acceptability of an adult-facilitated pretend play intervention for children with cancer. Five children with ongoing treatment for cancer were invited to a play intervention that consisted of six to eight sessions of structured pretend play aimed at increasing participation, independence, and well-being. A mixed method design was used to evaluate the feasibility and acceptability of the play intervention. Measures were collected before and after interventions, and in conjunction with every play session. Results suggest that the children enjoyed the play intervention. Findings indicate small improvements regarding self-efficacy in care situations and equal or increased quality of life for participants. A main finding was that no adverse events or increased worrying was reported in conjunction with play sessions. Therefore, the intervention is regarded as safe, feasible, and acceptable as reported by participants and their primary caregivers and a possible means of increasing participation and independence in children with a cancer diagnosis.
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| 28. |
- Garnier, Nicolas, et al.
(författare)
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Genetic newborn screening and digital technologies : A project protocol based on a dual approach to shorten the rare diseases diagnostic path in Europe
- 2023
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Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 18:11
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Tidskriftsartikel (refereegranskat)abstract
- Since 72% of rare diseases are genetic in origin and mostly paediatrics, genetic newborn screening represents a diagnostic "window of opportunity". Therefore, many gNBS initiatives started in different European countries. Screen4Care is a research project, which resulted of a joint effort between the European Union Commission and the European Federation of Pharmaceutical Industries and Associations. It focuses on genetic newborn screening and artificial intelligence-based tools which will be applied to a large European population of about 25.000 infants. The neonatal screening strategy will be based on targeted sequencing, while whole genome sequencing will be offered to all enrolled infants who may show early symptoms but have resulted negative at the targeted sequencing-based newborn screening. We will leverage artificial intelligence-based algorithms to identify patients using Electronic Health Records (EHR) and to build a repository "symptom checkers" for patients and healthcare providers. S4C will design an equitable, ethical, and sustainable framework for genetic newborn screening and new digital tools, corroborated by a large workout where legal, ethical, and social complexities will be addressed with the intent of making the framework highly and flexibly translatable into the diverse European health systems.
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| 29. |
- Godskesen, Tove, et al.
(författare)
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Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials
- 2015
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Ingår i: European Journal of Cancer Care. - : Wiley-Blackwell. - 0961-5423 .- 1365-2354. ; 24:1, s. 133-41
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Tidskriftsartikel (refereegranskat)abstract
- It is necessary to carry out randomised clinical cancer trials (RCTs) in order to evaluate new, potentially useful treatments for future cancer patients. Participation in clinical trials plays an important role in determining whether a new treatment is the best therapy or not. Therefore, it is important to understand on what basis patients decide to participate in clinical trials and to investigate the implications of this understanding for optimising the information process related to study participation. The aims of this study were to (1) describe motives associated with participation in RCTs, (2) assess if patients comprehend the information related to trial enrolment, and (3) describe patient experiences of trial participation. Questionnaires were sent to 96 cancer patients participating in one of nine ongoing clinical phase 3 trials at the Department of Oncology, Uppsala University Hospital in Sweden. Eighty-eight patients completed the questionnaire (response rate 92%); 95% of these were patients in adjuvant therapy and 5% participated in clinical trials on palliative care. Two main reasons for participation were identified: personal hope for a cure and altruism. Patients show adequate understanding of the information provided to them in the consent process and participation entails high patient satisfaction.
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| 30. |
- Grady, Christine, et al.
(författare)
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Broad Consent for Research With Biological Samples : Workshop Conclusions
- 2015
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Ingår i: American Journal of Bioethics. - : Informa UK Limited. - 1526-5161 .- 1536-0075. ; 15:9, s. 34-42
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Tidskriftsartikel (refereegranskat)abstract
- Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health (NIH) Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and timely topic.
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