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  1.  43
    Moral distress in paediatric oncology: Contributing factors and group differences.Pernilla Pergert, Cecilia Bartholdson, Klas Blomgren & Margareta af Sandeberg - 2019 - Nursing Ethics 26 (7-8):2351-2363.
    Background:Providing oncological care to children is demanding and ethical issues concerning what is best for the child can contribute to moral distress.Objectives:To explore healthcare professionals’ experiences of situations that generate moral distress in Swedish paediatric oncology.Research design:In this national study, data collection was conducted using the Swedish Moral Distress Scale-Revised. The data analysis included descriptive statistics and non-parametric analysis of differences between groups.Participants and research context:Healthcare professionals at all paediatric oncology centres in Sweden were invited to participate. A total of (...)
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  2.  36
    Procedures for clinical ethics case reflections: an example from childhood cancer care.Cecilia Bartholdson, Pernilla Pergert & Gert Helgesson - 2014 - Clinical Ethics 9 (2-3):87-95.
    The procedures for structuring clinical ethics case reflections in a childhood cancer care setting are presented, including an eight-step model. Four notable characteristics of the procedures are: members of the inter-professional health care team, not external experts, taking a leading role in the reflections; patients or relatives not being directly involved; the model explicitly addressing values and moral principles instead of focussing exclusively on the interests of involved parties; using a case-based rather than principle-based method. By discusing the advantages and (...)
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  3.  41
    Ethics case reflection sessions: Enablers and barriers.Cecilia Bartholdson, Bert Molewijk, Kim Lützén, Klas Blomgren & Pernilla Pergert - 2018 - Nursing Ethics 25 (2):199-211.
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  4.  22
    Perceptions of important outcomes of moral case deliberations: a qualitative study among healthcare professionals in childhood cancer care.Charlotte Weiner, Pernilla Pergert, Bert Molewijk, Anders Castor & Cecilia Bartholdson - 2021 - BMC Medical Ethics 22 (1):1-11.
    BackgroundIn childhood cancer care, healthcare professionals must deal with several difficult moral situations in clinical practice. Previous studies show that morally difficult challenges are related to decisions on treatment limitations, infringing on the child's integrity and growing autonomy, and interprofessional conflicts. Research also shows that healthcare professionals have expressed a need for clinical ethics support to help them deal with morally difficult situations. Moral case deliberations (MCDs) are one example of ethics support. The aim of this study was to describe (...)
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  5.  57
    To change or not to change - translating and culturally adapting the paediatric version of the Moral Distress Scale-Revised.Margareta af Sandeberg, Marika Wenemark, Cecilia Bartholdson, Kim Lützén & Pernilla Pergert - 2017 - BMC Medical Ethics 18 (1):14.
    Paediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this study were (...)
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  6.  17
    Sheltering in chaos: parents’ experiences when facing moral challenges in childhood cancer care.Charlotte Weiner, Pernilla Pergert, Anders Castor, Bert Molewijk & Cecilia Bartholdson - forthcoming - Ethics and Behavior.
    Childhood cancers are life-threatening diseases that affect not only the child but the whole family. Although rates of survival are high with modern therapy, childhood cancers are still serious and...
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  7.  48
    Translating and culturally adapting the shortened version of the Hospital Ethical Climate Survey – retaining or modifying validated instruments.Pernilla Pergert, Cecilia Bartholdson, Marika Wenemark, Kim Lützén & Margareta af Sandeberg - 2018 - BMC Medical Ethics 19 (1):35.
    The Hospital Ethical Climate Survey was developed in the USA and later shortened. HECS has previously been translated into Swedish and the aim of this study was to describe a process of translating and culturally adapting HECS-S and to develop a Swedish multi-professional version, relevant for paediatrics. Another aim was to describe decisions about retaining versus modifying the questionnaire in order to keep the Swedish version as close as possible to the original while achieving a good functional level and trustworthiness. (...)
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  8.  13
    Important situations that capture moral distress in paediatric oncology.Margareta af Sandeberg, Cecilia Bartholdson & Pernilla Pergert - 2020 - BMC Medical Ethics 21 (1):1-9.
    The paediatric Moral Distress Scale-Revised was previously translated and adapted to Swedish paediatric oncology. Cognitive interviews revealed five not captured situations among the 21 items, resulting in five added items: 22) Lack of time for conversations with patients/families, 23) Parents’ unrealistic expectations, 24) Not to talk about death with a dying child, 25) To perform painful procedures, 26) To decide on treatment/care when uncertain. The aim was to explore experiences of moral distress in the five added situations in the Swedish (...)
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  9.  3
    Children’s voices on their values and moral dilemmas when being cared and treated for cancer– a qualitative interview study.Charlotte Weiner, Pernilla Pergert, Anders Castor, Bert Molewijk & Cecilia Bartholdson - 2024 - BMC Medical Ethics 25 (1):1-10.
    Background Childhood cancers affect about 350 children every year in Sweden and are life-threatening diseases. During the treatment period, situations arise that can become morally challenging for the child. When knowing children’s values and morally challenging situations in childhood cancer care, targeted ethics support could be developed and used in care. Aim To explore children’s values and moral dilemmas ​​when undergoing cancer treatment. Methods This is a qualitative study based on empirical data. The data collection was conducted through three focus (...)
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  10.  14
    What outcomes of moral case deliberations are perceived important for healthcare professionals to handle moral challenges? A national cross-sectional study in paediatric oncology.Pernilla Pergert, Bert Molewijk, Isabelle Billstein & Cecilia Bartholdson - 2022 - BMC Medical Ethics 23 (1):1-11.
    BackgroundIn paediatric oncology, healthcare professionals face moral challenges. Clinical ethics support services, such as moral case deliberation, aim to assist them in dealing with these challenges. Yet, healthcare professionals can have different expectations and goals related to clinical ethics support services.MethodsIn this study, the perceptions held by healthcare professionals regarding the importance of possible outcomes of MCDs, prior to implementation of MCDs, were investigated. A multisite, cross-sectional, quantitative study was performed at all six Paediatric Oncology Centres in Sweden. Healthcare professionals (...)
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