No Conflicting Loyalties in Parents When Their Healthy Child Donates Stem Cells to a Severely Ill Sibling: An Interview Study.

When a potential stem cell donor to a seriously ill child is a healthy sibling below 18 years, Swedish parents have the legal right and obligation to decide on behalf of the donor child. However, there are potentially conflicting loyalties when parents have one severely ill child in need for a cure and one healthy child who will be subjected to medical procedures. This study explored parents' experiences related to their decision on stem cell donation, as well as ethical considerations in the donation process where outcomes are uncertain.

Positioning Ethics When Direct Patient Care is Prioritized: Experiences from Implementing Ethics Case Reflection Rounds in Childhood Cancer Care.

Caring for children with cancer involves complex ethical challenges. Ethics Case Reflection (ECR) rounds can be offered to support teams to reflect on challenges and what should be done in patient care. A training course, for facilitators of ECR rounds, has been offered to healthcare professionals (HCPs) in childhood cancer care by a Nordic working group on ethics.

Children's voices on their values and moral dilemmas when being cared and treated for cancer- a qualitative interview study.

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.

Living with the threat of losing a child: Parents' experiences of the transplantation process with a severely ill child who received stem cells from a sibling.

Purpose: When a child needs a hematopoietic stem cell transplant, the seriousness of the child's illness is highlighted. The purpose of this study was to explore parents' experiences of the transplantation process when two children in the family are involved, one severely ill child as the recipient and the other as the donor.

Methods: In this qualitative study, interviews were conducted with 18 parents of 13 healthy minor donors after successful stem cell transplants.

Moral distress and ethical climate in pediatric oncology care impact healthcare professionals' intentions to leave.

Objective: To assess perceptions of ethical climate, experiences of moral distress, and intentions to leave among healthcare professionals in Nordic pediatric oncology care.

Methods: A cross-sectional survey with registered nurses, physicians, and nursing assistants at 20 Nordic pediatric cancer centers. Data were collected by using translated versions of the Swedish Hospital Ethical Climate Survey-Shortened and the Swedish Moral Distress Scale-Revised.

Nurses' Perceptions of the Impact of a National Educational Program in Pediatric Oncology Nursing: A Cross-Sectional Evaluation.

Specific knowledge is required in pediatric oncology, and specialization of nurses has been identified as a priority. In Sweden, a national program in pediatric oncology nursing has been offered since 2003. The aim of this study was to gain knowledge of nurses' perceptions of the impact of this educational program.

What outcomes of moral case deliberations are perceived important for healthcare professionals to handle moral challenges? A national cross-sectional study in paediatric oncology.

Background: In paediatric oncology, healthcare professionals face moral challenges. Clinical ethics support services, such as moral case deliberation (MCD), aim to assist them in dealing with these challenges. Yet, healthcare professionals can have different expectations and goals related to clinical ethics support services.

Is there a choice when a sibling is ill? Experiences of children and adolescents who donated stem cells to a sibling.

Purpose: When healthy children/adolescents are potential stem cell donors to a sibling, ethical questions arise due to reduced autonomy and dependency on their family. This study aimed to explore the experiences of children/adolescents in Sweden who donated stem cells to a severely ill sibling.

Method: Semi-structured interviews were conducted with thirteen donors, aged 6-17 years at the time of the donation, all with surviving siblings.

A cross-sectional survey of moral distress and ethical climate - Situations in paediatric oncology care that involve children's voices.

Aim: To assess experiences of morally distressing situations and perceptions of ethical climate in paediatric oncology care, with a focus on situations that involve children's voices.

Design: Cross-sectional survey.

Methods: Registered Nurses at all four paediatric oncology centres in Denmark were asked to complete a web-based questionnaire with Danish translations of the Swedish Moral Distress Scale-Revised (MDS-R) and the Swedish Hospital Ethical Climate Survey-Shortened (HECS-S).

Does participation in ethics discussions have an impact on ethics decision-making? A cross-sectional study among healthcare professionals in paediatric oncology.

Purpose: The overall aim of this study was to describe perceptions of the decision-making process in relation to participation/non-participation in ethics discussions among healthcare professionals in paediatric oncology.

Methods: Healthcare professionals, working at three paediatric units where ethics discussions where performed answered a study-specific questionnaire focusing on perceptions of involvement, influence, responsibility and understanding of ethics decision-making. Statistical analyses included descriptive statistics, non-parametric paired t-tests and correlation tests.

Perceptions of important outcomes of moral case deliberations: a qualitative study among healthcare professionals in childhood cancer care.

Background: In 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.

Ethical climate and moral distress in paediatric oncology nursing.

Background: Ethical climate and moral distress have been shown to affect nurses' ethical behaviour. Despite the many ethical issues in paediatric oncology nursing, research is still lacking in the field.

Research Aim: To investigate paediatric oncology nurses' perceptions of ethical climate and moral distress.

Reasons for not using interpreters to secure patient-safe communication - A national cross-sectional study in paediatric oncology.

Objective: To investigate the reasons for not using interpreters to secure patient-safe communication.

Methods: Healthcare personnel at six paediatric oncology centres in Sweden responded to the Communication over Language Barriers questionnaire. Descriptive and comparative analyses were performed.

Important situations that capture moral distress in paediatric oncology.

Background: The paediatric Moral Distress Scale-Revised (MDS-R) 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 paediatric MDS-R, among healthcare professionals (HCPs) in paediatric oncology.

Balancing values and obligations when obtaining informed consent: Healthcare professionals' experiences in Swedish paediatric oncology.

Aim: To explore Swedish healthcare professionals' (HCPs) clinical experiences of the informed consent process (ICP) and to compare experiences between the professions.

Methods: In this nationwide study six paediatric oncologists (POs) and eight research nurses (ReNs) from all Swedish paediatric oncology centres were interviewed. The material was analysed using Grounded theory, a qualitative constant comparative method.

Language barriers and the use of professional interpreters: a national multisite cross-sectional survey in pediatric oncology care.

Healthcare personnel are responsible for providing patient-centered care regardless of their patients' language skills, but language barriers is identified as the main hindrances providing effective, equitable and safe care to patients with limited proficiency in a country's majority language. This study is a national multisite cross-sectional survey aiming to investigate communication over language barriers in pediatric oncology care. A survey using the Communication over Language Barriers questionnaire (CoLB-q) distributed to medical doctors, registered nurses and nursing assistants at six pediatric oncology centers in Sweden (response rate 90%) using descriptive statistical analyses.

The ethical climate in paediatric oncology-A national cross-sectional survey of health-care personnel.

Objective: To describe health-care personnel's (HCP's) perceptions of the ethical climate at their workplace in paediatric oncology.

Methods: A cross-sectional survey was conducted using the Swedish version of the shortened Hospital Ethical Climate Survey (HECS-S). HCP at all six paediatric oncology centres (POCs) in Sweden were invited to participate.

The interpreter's voice: Carrying the bilingual conversation in interpreter-mediated consultations in pediatric oncology care.

Objectives: The objective of this study was to explore interpreters' perceived strategies in the interaction in interpreter-mediated consultations between healthcare personnel and patients/families with limited Swedish proficiency in pediatric oncology care.

Methods: This study had an inductive approach using an exploratory qualitative design. A total of eleven semi-structured interviews were performed with interpreters who had experience interpreting in pediatric oncology care.

Moral distress in paediatric oncology: Contributing factors and group differences.

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.

Translating and culturally adapting the shortened version of the Hospital Ethical Climate Survey (HECS-S) - retaining or modifying validated instruments.

Background: The Hospital Ethical Climate Survey (HECS) was developed in the USA and later shortened (HECS-S). 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.

Development and evaluation of the Communication over Language Barriers questionnaire (CoLB-q) in paediatric healthcare.

Objective: To develop a valid and reliable questionnaire addressing the experiences of healthcare personnel of communicating over language barriers and using interpreters in paediatric healthcare.

Methods: A multiple- methods approach to develop and evaluate the questionnaire, including focus groups, cognitive interviews, a pilot test and test-retest. The methods were chosen in accordance with questionnaire development methodology to ensure validity and reliability.

Ethics case reflection sessions: Enablers and barriers.

Background: In previous research on ethics case reflection (ECR) sessions about specific cases, healthcare professionals in childhood cancer care were clarifying their perspectives on the ethical issue to resolve their main concern of consolidating care. When perspectives were clarified, consequences in the team included 'increased understanding', 'group strengthening' and 'decision grounding'. Additional analysis of the data was needed on conditions that could contribute to the quality of ECR sessions.

To change or not to change - translating and culturally adapting the paediatric version of the Moral Distress Scale-Revised (MDS-R).

Background: 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 (MDS-R) 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.