| 1. |
- 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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| 2. |
- Grauman, Åsa, 1982-, et al.
(författare)
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Exploring research participants' perceptions of cardiovascular risk information-Room for improvement and empowerment
- 2019
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Ingår i: Patient Education and Counseling. - : Elsevier BV. - 0738-3991 .- 1873-5134. ; 102:8, s. 1528-1534
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The objective of this study was to explore research participants' (adults, age 50-65) perceptions of receiving cardiovascular risk information.METHODS: Five focus group interviews (N = 31) were performed with research participants aged 50-65 who participated in the Swedish CArdioPulmonary BioImage Study (SCAPIS). The interviews were analyzed using qualitative content analysis.RESULTS: The categories; the complexity of cardiovascular risk; insufficient presentation of test result; emotional responses; and health examinations provides confirmation, emerged. The test results were written in medical terms and lacked recommendations for further action which made it difficult for lay people to understand and use, and for some, also caused unnecessary worry.CONCLUSION: There was inadequate guidance concerning the implications of the test results, especially for participants without clinical findings. In order to allow research participants to obtain better cognitive and behavioral control, improvements are needed with regard to how personal risk information is communicated in research projects connected to health services.PRACTICAL IMPLICATIONS: The participants largely relied on physical signs when assessing their own cardiovascular risk. Health examinations are crucial for helping to add nuance to individuals' risk perceptions. For personal health information to have any real value for individuals, it must be designed from a user perspective.
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| 3. |
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| 4. |
- Kälvemark Sporrong, Sofia, et al.
(författare)
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Developing ethical competence in health care organizations
- 2007
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Ingår i: Nursing Ethics. - : SAGE Publications. - 0969-7330 .- 1477-0989. ; 14:6, s. 825-837
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Tidskriftsartikel (refereegranskat)abstract
- Increased work complexity and financial strain in the health care sector have led to higher demands on staff to handle ethical issues. These demands can elicit stress reactions, that is, moral distress. One way to support professionals in handling ethical dilemmas is education and training in ethics. This article reports on a controlled prospective study evaluating a structured education and training program in ethics concerning its effects on moral distress. The results show that the participants were positive about the training program. Moral distress did not change significantly. This could be interpreted as competence development, with no effects on moral distress. Alternatively, the result could be attributed to shortcomings of the training program, or that it was too short, or it could be due to the evaluation instrument used. Organizational factors such as management involvement are also crucial. There is a need to design and evaluate ethics competence programs concerning their efficacy.
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| 5. |
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| 6. |
- Masterton, Malin, 1979-
(författare)
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Duties to Past Persons : Moral Standing and Posthumous Interests of Old Human Remains
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Genetic research has increasing power to analyse old biological remains. Biological traces of well-known historical persons can reveal personal information. The aim of this thesis is to investigate ethical concerns for the dead, within the biological, historical and archaeological sciences. In philosophy there is a long-running discussion on whether or not the dead can be wronged. The good name is proposed as a candidate of a posthumous interest. It is first of all argued that slandering per se can be wrong regardless of posthumous wronging of the dead. Secondly, the concept of change is investigated. It is argued that the property of having a reputation is a relational property. Hence a change in public opinion of a dead person, is also a change in the dead person’s reputation. The third contribution of this thesis is a constructive proposal for how a posthumous identity could be understood using narrative theory. Understanding identity through the life-story opens up the possibility of a gradual loss of identity after death, rather than absolute loss at the moment of death. Fragments of a person‘s narrative identity can persist in other peoples’ narratives, and for some historical persons, their narratives can be found long after their death. Finally, the implications of a remaining narrative identity for the dead are investigated in the area of archaeology and museumology. In the past 30 years, there has been increasing critique about present and past discriminatory handling of old human remains by archaeologists, in museums and in other institutions. Increasing numbers of requests have been made for repatriation or reburial of old human remains. Following an analysis of three current ethical guidelines in handling old human remains, changes to these guidelines are proposed based on a narrative method to a hypothetical claim of reburial.
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| 7. |
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| 8. |
- Masterton, Malin, 1979-, et al.
(författare)
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In search of the missing subject : narrative identity and posthumous wronging
- 2010
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Ingår i: Studies in History and Philosophy of Science Part C. - : Elsevier BV. - 1369-8486 .- 1879-2499. ; 41:4, s. 340-346
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Tidskriftsartikel (refereegranskat)abstract
- With the advanced methods of analysing old biological material, it is pressing to discuss what should be allowed to be done with human remains, particularly for well documented historical individuals. We argue that Queen Christina of Sweden, who challenged the traditional gender roles, has an interest in maintaining her privacy when there are continued attempts to reveal her ‘true’ gender. In the long-running philosophical debate on posthumous wronging, the fundamental question is: Who is wronged? Our aim is to find this ‘missing subject’ using narrative theory. Narrative identity emphasises the fact that no person is alone in knowing or telling their life story. People’s lives are entangled and parts of the life story of a deceased person can remain in the living realm. Since the narrative identity of a person does not necessarily end upon their death, and this narrative continues to relate directly to the person who once existed, it is the narrative subject that can continue to be posthumously wronged. Queen Christina can no longer maintain her own identity, but we maintain it by our research into her life. We propose three duties relevant for posthumous wronging: the duty of truthfulness, the duty of recognition and the duty to respect privacy.
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| 9. |
- Matar, Amal, et al.
(författare)
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"A perfect society" : Swedish policymakers' ethical and social views on preconception expanded carrier screening
- 2019
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Ingår i: Journal of Community Genetics. - : Springer Science and Business Media LLC. - 1868-310X .- 1868-6001. ; 10:2, s. 267-280
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Tidskriftsartikel (refereegranskat)abstract
- To improve healthcare policymaking, commentators have recommended the use of evidence, health technology assessment, priority setting, and public engagement in the process of policymaking. Preconception expanded carrier screening, according to the World Health Organization’s definition, is a novel health technology and therefore warrants assessment, part of which involves evaluating ethical and social implications. We examined ten Swedish policymakers’ perspectives on ethical and social aspects of preconception expanded screening through in-depth expert interviewing, using a semi-structured questionnaire. Respondents were affiliated to governmental and non-governmental institutions that directly influence healthcare policymaking in Sweden. The interviews were recorded, transcribed verbatim, and analyzed via inductive thematic analysis method, which generated seven themes and several subthemes. Policymakers harbored concerns regarding the economics, Swedish and international political respects, implementation procedures, and societal effects, which included long-term ones. Moreover, participants detailed the role of public engagement, research, and responsibility in regard to preconception expanded carrier screening implementation. Since this is a qualitative study, with a small non-random sample, the results may not be generalizable to all policymakers in Sweden. However, the results give a profound insight into the process and interpretative knowledge of experts, in the Swedish milieu and the extent of readiness of Sweden to implement a preconception expanded carrier screening program.
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| 10. |
- Matar, Amal
(författare)
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Considering a Baby? Responsible Screening for the Future : Ethical and social implications for implementation and use of preconception expanded carrier screening in Sweden
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Preconception expanded carrier screening is a novel technology that involves the offer of a screening test for many recessive diseases (via an expanded screening panel) to prospective parents, with no priori risk. Test positive couples have a number of reproductive choices; prenatal diagnosis and aborting affected fetus, IVF and preimplantation genetic diagnosis, sperm or ovum donation or simply accept the risk. The test had been piloted in studies and can potentially be implemented in Europe. Therefore, it seemed pertinent to evaluate stakeholders’ perspectives on ethical and social implications of implementing and using preconception ECS in Sweden.Two main stakeholders were examined; healthcare professionals and health policymaking experts, via a mix of qualitative methods for data collection and data analysis. In Study I, we employed in-depth interviews to collect data and content analysis to analyze it. In Studies III and IV, expert interviews were used to gather data while thematic analysis was utilized to interpret it. Furthermore, in Study II, an ethical concept namely; reproductive autonomy, was critically discussed within a setting that expects a couple to make a conjoint reproductive decision about preconception ECS, while each partner still upholds his or her individual autonomy.The main findings of the empirical studies (Studies I, III and IV) echo to a great extent the prevailing ethical and social debates associated with the novel technology. Respondents expressed concerns with reproductive autonomy, medicalization, prioritization of health resources, discrimination and long term societal changes. Furthermore, respondents emphasized the importance to observe Swedish values, such as human dignity, equality and solidarity, when assessing a preconception ECS program. In addition, they described practicalities of implementation and political considerations that are pertinent to the Swedish context. Finally, some respondents recognized the advantages of reduced suffering and decrease in fetal anomalies and abortion as a consequence of preconception ECS.Study II, proposed a notion of couple autonomy, where certain demands if met, a couple’s reproductive decision can be accepted by healthcare staff as autonomous.The findings, in this thesis, steer towards non implementation of preconception ECS in its current status within the publicly-funded healthcare system in Sweden. This is because healthcare providers and experts were of the opinion that it would not solve a medical need, threaten Swedish values and use up resources extensively.
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