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1.
BMC Med Ethics ; 25(1): 75, 2024 Jun 26.
Artículo en Inglés | MEDLINE | ID: mdl-38926715

RESUMEN

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 group interviews and six individual interviews with children between 10 and 18 years (n = 16). A content analysis methodology was used to generate themes. Children who were/have been treated for cancer at three childhood cancer centres in Sweden were invited to participate. The study was approved by the Swedish Ethical Review Authority. The children's participation was based on voluntariness and consent/assent. FINDINGS: During the analysis, five themes of values emerged: Personal relationships, Bodily ease and identity, Feeling in control and being involved, Positive distractions and Right care that is needed. Their moral dilemmas were thematized into: Should I consider others or not? Should I rest or not? and Should I refuse treatment or not? CONCLUSION: Children undergoing cancer treatment want to have personal relationships with healthcare professionals. Their moral dilemmas were about questioning their own physical and psychological well-being against their expectations, the values of others and the treatment required. Further research is needed to understand how to deal with moral dilemmas in children undergoing cancer treatment.


Asunto(s)
Principios Morales , Neoplasias , Investigación Cualitativa , Humanos , Neoplasias/terapia , Neoplasias/psicología , Niño , Femenino , Suecia , Masculino , Adolescente , Grupos Focales , Valores Sociales
2.
J Pediatr Nurs ; 77: e495-e502, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38762421

RESUMEN

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. Qualitative content analysis was used to explore parents' experiences. FINDINGS: The parents described they were living with the threat of losing a child. They lived with an uncertain future as they were confronted with life-changing information. Whether the ill child would survive or not could not be predicted; thus, parents had to endure unpredictability, and to cope with this they chose to focus on positives. Finally, the parents managed family life in the midst of chaos, felt an inadequacy and a perception that the family became a fragmented although close team during hospital stays. They expressed a need for both tangible and emotional support. CONCLUSIONS: When a child needs a stem cell transplant, the parents feel inadequate to their healthy children including the donating child. It is obvious that they experience an uncertain future and struggle to keep the family together amid the chaos. PRACTICE IMPLICATIONS: Considering these results, psychosocial support should be mandatory for parents in connection with pediatric HSCT, to enable a process where parents can prepare for the outcome, whether successful or not.


Asunto(s)
Adaptación Psicológica , Trasplante de Células Madre Hematopoyéticas , Padres , Investigación Cualitativa , Hermanos , Humanos , Masculino , Femenino , Padres/psicología , Niño , Trasplante de Células Madre Hematopoyéticas/psicología , Hermanos/psicología , Adulto , Adolescente , Preescolar , Índice de Severidad de la Enfermedad
3.
Psychooncology ; 32(7): 1067-1075, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-37144967

RESUMEN

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. Descriptive analyses and non-parametric tests were used to describe, summarize, and compare data. RESULTS: According to 543 healthcare professionals (response rate 58%), the ethical climate in Nordic pediatric oncology care was positive. Inadequate staffing levels, poor continuity and lack of time were the most common causes of moral distress. Registered nurses experienced significantly higher levels of moral distress compared to physicians and nursing assistants. About 6% of the respondents considered leaving due to moral distress. Typically, they assessed the ethical climate as less positive and reported higher levels of moral distress than those who had no intention to leave. CONCLUSIONS: Organizational actions that ensure safe staffing levels and improve the continuity of care are needed to prevent moral distress and high staff turnover.


Asunto(s)
Actitud del Personal de Salud , Neoplasias , Humanos , Niño , Estudios Transversales , Personal de Salud , Neoplasias/terapia , Encuestas y Cuestionarios , Principios Morales , Estrés Psicológico/etiología
4.
BMC Med Ethics ; 23(1): 108, 2022 11 11.
Artículo en Inglés | MEDLINE | ID: mdl-36368984

RESUMEN

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. METHODS: In this study, the perceptions held by healthcare professionals (nursing assistants, registered nurses, physicians, and others) 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 answered the Euro-MCD instrument with 26 potential MCD outcomes using a scale from Not important (1) to Very important (4). Descriptive and comparative statistical analyses were carried out. RESULTS: All outcomes were rated high, i.e., between 3.12 and 3.78. More open communication, developing skills to analyse ethically difficult situations, better mutual understanding, and deciding on concrete actions were rated as most important. Understanding of ethical theories and critical examination of policies were rated less important. Most often nursing assistants rated higher and physicians lower than the other professions did. Women and participants without previous experience of MCDs perceived outcomes as more important. There were differences between centres as one centre had significantly higher, and one centre had significantly lower ratings compared to the others. CONCLUSION: It is clear that healthcare professionals want MCDs to improve teamwork and skills in order to analyse and manage ethically difficult situations. When comparing to previous research about important MCD outcomes, there were similarities in what healthcare professionals consider to be important when handling moral challenges regardless of country and potential differences in healthcare settings and systems, such as paediatric vs. adult care.


Asunto(s)
Principios Morales , Neoplasias , Adulto , Humanos , Femenino , Niño , Estudios Transversales , Ética Clínica , Actitud del Personal de Salud , Neoplasias/terapia
5.
BMC Med Ethics ; 22(1): 27, 2021 03 17.
Artículo en Inglés | MEDLINE | ID: mdl-33731101

RESUMEN

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. Moral case deliberations (MCDs) are one example of ethics support. The aim of this study was to describe the MCD-related outcomes that healthcare professionals in childhood cancer care considered important, before MCDs were implemented, in order to facilitate the implementation of MCDs in childhood cancer care in Sweden. METHODS: This study is based on qualitative data. Healthcare professionals, mostly representing registered nurses, nursing assistants and physicians, working at childhood cancer care centres in Sweden, were invited to respond to the translated and content validated European MCD Outcomes Instrument, before participating in regular MCDs. Answers to the main open-ended question, included in the questionnaire, was analysed according to systematic text condensation. RESULTS: Data was collected from 161 responses from the healthcare professionals. The responses included healthcare professionals' perceptions of which MCD-related outcomes they found important for handling moral challenges. Three different themes of important outcomes from the analysis of the data are presented as follows: Interprofessional well-being in team interactions on a team level; Professional comfort when dealing with moral challenges on a personal level; and Improved quality of care for the child and the family on a care level. CONCLUSIONS: Healthcare professionals in childhood cancer care considered it important that ethics support could enhance the well-being of interprofessional teams, support healthcare professionals on an individual level and improve quality of care. The results of this study can be used in current and future training for MCD-facilitators. When knowing the context specific important MCD-outcomes, the sessions could be adapted. Managers in childhood cancer care would benefit from knowing about the specific important outcomes for their target group because they could then create relevant working conditions for clinical ethics support.


Asunto(s)
Neoplasias , Niño , Atención a la Salud , Humanos , Principios Morales , Neoplasias/terapia , Percepción , Investigación Cualitativa , Suecia
6.
Nurs Ethics ; 28(6): 1061-1072, 2021 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-33706607

RESUMEN

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. RESEARCH DESIGN: In this cross-sectional study, data were collected using Finnish translations of the Swedish Hospital Ethical Climate Survey-Shortened and the Swedish Moral Distress Scale-Revised. Data analysis includes descriptive statistics and non-parametric analyses. RESPONDENTS AND RESEARCH CONTEXT: Ninety-three nurses, working at paediatric oncology centres in Finland, completed the survey. ETHICAL CONSIDERATIONS: According to Finnish legislation, no ethical review was needed for this type of questionnaire study. Formal research approvals were obtained from all five hospitals. Return of the questionnaire was interpreted as consent to participate. RESULTS: Ethical climate was perceived as positive. Although morally distressing situations were assessed as highly disturbing, in general they occurred quite rarely. The situations that did appear often reflected performing procedures on school-aged children who resist such treatment, inadequate staffing and lack of time. Perceptions of ethical climate and frequencies of morally distressing situations were inversely correlated. DISCUSSION: Although the results echo the recurrent testimonies of busy work shifts, nurses could most often practise nursing the way they perceived as right. One possible explanation could be the competent and supportive co-workers, as peer support has been described as helpful in mitigating moral distress. CONCLUSION: Nurturing good collegial relationships and developing manageable workloads could reduce moral distress among nurses.


Asunto(s)
Actitud del Personal de Salud , Neoplasias , Niño , Estudios Transversales , Humanos , Oncología Médica , Principios Morales , Encuestas y Cuestionarios
7.
Acta Paediatr ; 109(5): 1040-1048, 2020 05.
Artículo en Inglés | MEDLINE | ID: mdl-31520436

RESUMEN

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. RESULTS: The participants' main concern was how to fulfil research obligations without putting too much strain on a family in acute crisis, which led to the core category of balancing values and obligations of both healthcare and research. To handle the challenges the participants' struggled to safeguard the families from psychological harm, tried to adjust to the families, and gradually introduced research while building trust. The conceptual model developed in the study highlights potential consequences of this balancing act with a risk of diminishing the family's autonomy through HCPs acting authoritatively (in particular POs) or with overprotection (in particular ReNs). CONCLUSION: Paediatric oncology is a research integrated healthcare environment. The HCPs need personal, professional and institutional support regarding ICP-related ethical issues, decisions and implications in this intertwined context. Furthermore, HCPs need to be aware of the potential long-term risk of developing professional moral distress.


Asunto(s)
Actitud del Personal de Salud , Neoplasias , Niño , Personal de Salud , Humanos , Consentimiento Informado , Investigación Cualitativa , Suecia
8.
BMC Med Ethics ; 21(1): 6, 2020 01 13.
Artículo en Inglés | MEDLINE | ID: mdl-31931787

RESUMEN

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. METHODS: In this national cross-sectional survey, the Swedish paediatric MDS-R, including five added items, were used. Descriptive statistics, non-parametric analysis of differences between professions and a MDS-R score for each item were calculated. Internal consistency was tested using Cronbach's alpha and inter-item correlation test. HCPs (n = 278) at all six Swedish paediatric oncology centres participated (> 89%). The Regional Ethical Review Board had no objections. Consent was assumed when the survey was returned. RESULTS: Nursing assistants (NAs) reported higher intensity and lower frequency on all added items; registered nurses (RNs) reported a higher frequency on item 22-25; medical doctors (MDs) reported higher MDS-R score on item 26. On item 22, intensity was moderate for RNs and MDs and high for NAs, and frequency was high among all. Item 22, had the second highest MDS-R score of all 26 for all professional groups. On item 23, the level of disturbance was low but it occurred often. The 26-item version showed good internal consistency for the overall sample and for all professional groups. However, item 22 and 24 could be viewed as redundant to two of the original 21. CONCLUSION: In accordance with other studies, the intensity was higher than the frequency, however, the frequency of the added items was higher than of the original items. In line with previous research, item 22 and 23 are important elements of moral distress. RNs experience the situations more often while NAs find them more disturbing. The results indicate that the added items are important in capturing moral distress in paediatric oncology.


Asunto(s)
Actitud del Personal de Salud , Conflicto Psicológico , Oncología Médica/ética , Principios Morales , Pediatría/ética , Niño , Estudios Transversales , Femenino , Humanos , Masculino , Cuerpo Médico de Hospitales/psicología , Personal de Enfermería en Hospital/psicología , Psicometría , Suecia
9.
Psychooncology ; 28(4): 735-741, 2019 04.
Artículo en Inglés | MEDLINE | ID: mdl-30695112

RESUMEN

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. Analysis included descriptive statistics, the Mann-Whitney U test (differences between groups) and Spearman's rank correlation. Informed consent was assumed when the respondents returned the survey. RESULTS: A high response rate was achieved as 278 HCP answered the questionnaire. Medical doctors perceived the ethical climate to be more positive than registered nurses and nursing assistants. At the POC with the significantly lowest values concerning immediate manager, no significant correlation with the other items was found. At the POC with the poorest ethical climate, HCP also had the lowest perception of the possibility of practicing ethically good care. CONCLUSIONS: Differences between centres and professional groups have been demonstrated. A negative perception of the immediate manager does not necessarily mean that the ethical climate is poor, but the manager's ability to provide the conditions for an open dialogue within the health-care team is key to achieving an ethical climate.


Asunto(s)
Actitud del Personal de Salud , Personal de Salud/ética , Hospitales Pediátricos/ética , Neoplasias/terapia , Adulto , Niño , Competencia Clínica , Estudios Transversales , Femenino , Humanos , Masculino , Oncología Médica/ética , Persona de Mediana Edad , Personal de Enfermería en Hospital/ética , Suecia
10.
Acta Oncol ; 58(7): 1015-1020, 2019 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-30958083

RESUMEN

Background: 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. Material and Methods: 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. Results: Professional interpreters on site were the most common solution when using an interpreter, although relatives or even children were used. The use of professional interpreters on site differed among the professions and in different clinical situations, such as medical encounter, education or procedure preparation. All professions reported that the use of professional interpreters greatly increased care relationships, patient safety and patient involvement in care. Conclusions: Healthcare personnel seem to believe that professional interpreters are crucial when caring for patients and family members who do not speak the majority language, but there is an obvious discrepancy between this belief and their use of professional interpreters.


Asunto(s)
Barreras de Comunicación , Oncología Médica/estadística & datos numéricos , Neoplasias/terapia , Relaciones Profesional-Paciente , Traducción , Niño , Estudios Transversales , Femenino , Personal de Salud/organización & administración , Personal de Salud/estadística & datos numéricos , Humanos , Masculino , Oncología Médica/organización & administración , Neoplasias/diagnóstico , Participación del Paciente/estadística & datos numéricos , Participación del Paciente/tendencias , Seguridad del Paciente , Encuestas y Cuestionarios/estadística & datos numéricos , Suecia
11.
Nurs Ethics ; 26(7-8): 2351-2363, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-30411660

RESUMEN

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 278 healthcare professionals participated. The response rate was 89%. ETHICAL CONSIDERATIONS: In its advisory statement, the Regional Ethical Review Board decided that the study was of such a nature that the legislation concerning ethical reviews was not applicable. All participants received written information about the aim of the study and confidentiality. Participants demonstrated their consent by returning the survey. FINDINGS: The two situations with the highest moral distress scores concerned lack of competence and continuity of personnel. All professional groups reported high levels of disturbance. Nurses rated significantly higher frequencies and higher total Moral Distress Scale scores compared to medical doctors and nursing assistants. DISCUSSION: Lack of competence and continuity, as the two most morally distressing situations, confirms the findings of studies from other countries, where inadequate staffing was reported as being among the top five morally distressing situations. The levels of total Moral Distress Scale scores were more similar to those reported in intensive care units than in other paediatric care settings. CONCLUSION: The two most morally distressing situations, lack of competence and continuity, are both organisational in nature. Thus, clinical ethics support services need to be combined with organisational improvements in order to reduce moral distress, thereby maintaining job satisfaction, preventing a high turnover of staff and ensuring the quality of care.


Asunto(s)
Ética , Personal de Salud/psicología , Oncología Médica/ética , Adulto , Actitud del Personal de Salud , Femenino , Personal de Salud/estadística & datos numéricos , Humanos , Masculino , Oncología Médica/métodos , Pediatría/ética , Pediatría/métodos , Psicometría/instrumentación , Psicometría/métodos , Encuestas y Cuestionarios , Suecia
12.
BMC Med Ethics ; 19(1): 35, 2018 05 10.
Artículo en Inglés | MEDLINE | ID: mdl-29747639

RESUMEN

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. METHODS: In HECS-S, the respondents are asked to indicate the veracity of statements. In HECS and HECS-S the labels of the scale range from 'almost never true' to 'almost always true'; while the Swedish HECS labels range from 'never' to 'always'. The procedure of translating and culturally adapting the Swedish version followed the scientific structure of guidelines. Three focus group interviews and three cognitive interviews were conducted with healthcare professionals. Furthermore, descriptive data were used from a previous study with healthcare professionals (n = 89), employing a modified Swedish HECS. Decisions on retaining or modifying items were made in a review group. RESULTS: The Swedish HECS-S consists of 21 items including all 14 items from HECS-S and items added to develop a multi-professional version, relevant for paediatrics. The descriptive data showed that few respondents selected 'never' and 'always'. To obtain a more even distribution of responses and keep Swedish HECS-S close to HECS-S, the original labels were retained. Linguistic adjustments were made to retain the intended meaning of the original items. The word 'respect' was used in HECS-S with two different meanings and was replaced in one of these because participants were concerned that respecting patients' wishes implied always complying with them. CONCLUSIONS: The process of developing a Swedish HECS-S included decisions on whether to retain or modify. Only minor adjustments were needed to achieve a good functional level and trustworthiness although some items needed to be added. Adjustments made could be used to also improve the English HECS-S. The results shed further light on the need to continuously evaluate even validated instruments and adapt them before use.


Asunto(s)
Hospitales/ética , Cultura Organizacional , Pediatría/ética , Encuestas y Cuestionarios , Traducción , Traducciones , Comprensión , Cultura , Humanos , Lenguaje , Principios Morales
13.
Nurs Ethics ; 25(2): 199-211, 2018 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-29529973

RESUMEN

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. OBJECTIVE: The aim of this study was to explore conditions for clarifying perspectives during ECR sessions. RESEARCH DESIGN: Data were collected from observations and interviews and the results emerged from an inductive analysis using grounded theory. Participants and research context: Six observations during ECR sessions and 10 interviews were performed with healthcare professionals working in childhood cancer care and advanced paediatric homecare. Ethical considerations: The study was approved by a regional ethical review board. Participants were informed about their voluntary involvement and that they could withdraw their participation without explaining why. FINDINGS: Two categories emerged: organizational enablers and barriers and team-related enablers and barriers. Organizational enablers and barriers included the following sub-categories: the timing of the ECR session, the structure during the ECR session and the climate during the ECR session. Sub-categories to team-related enablers and barriers were identified as space for inter-professional perspectives, varying levels of ethical skills and space for the patient's and the family's perspectives. DISCUSSION: Space for inter-professional perspectives included the dominance of a particular perspective that can result from hierarchical positions. The medical perspective is relevant for understanding the child's situation but should not dominate the ethical reflection. CONCLUSION: Conditions for ECR sessions have been explored and the new knowledge can be used when training facilitators as well as for those who organize/implement ECR sessions. Awareness of space for different perspectives, including the possible medical advantage over the nursing perspective, could reduce the somewhat unilateral attention and contribute to an inter-professionally shared reflection.


Asunto(s)
Actitud del Personal de Salud , Ética Clínica , Cuerpo Médico de Hospitales/psicología , Neoplasias/terapia , Grupo de Atención al Paciente/organización & administración , Niño , Teoría Fundamentada , Hospitales Pediátricos , Humanos , Cuerpo Médico de Hospitales/estadística & datos numéricos , Observación , Investigación Cualitativa , Suecia
14.
Psychooncology ; 26(7): 1013-1018, 2017 07.
Artículo en Inglés | MEDLINE | ID: mdl-27565446

RESUMEN

OBJECTIVE: The aims of the study were to generate a grounded theory explaining the latent pattern of behavior in transcultural care interactions in the context of pediatric cancer care and to unify previously performed studies. METHODS: The basic tenets of classic grounded theory were applied on a theoretical sample of data from previous studies that included 5 focus group interviews with health care professionals (n = 35) and individual interviews with nurses (n = 12) and foreign-born parents (n = 11). RESULTS: Facading emerged as the core category and is the act of showing an outer appearance that will influence other people's interpretations. In transcultural interactions, facading might be misinterpreted related to different obstacles. Examples are given of different facades explored in pediatric cancer care including strength facading. Facading is a strategy aiming to protect oneself and others emotionally in care and includes: emotional facading and facading-sensitive issues. CONCLUSIONS: This grounded theory could help make health care professionals aware of different meanings of facading across cultures in health care. Also, awareness is needed of different views on emotional facading and facading-sensitive issues to provide a congruent care.


Asunto(s)
Características Culturales , Neoplasias/terapia , Padres/psicología , Pediatría , Relaciones Médico-Paciente , Niño , Emociones , Femenino , Grupos Focales , Teoría Fundamentada , Humanos , Masculino , Suecia
15.
BMC Med Ethics ; 18(1): 14, 2017 Feb 20.
Artículo en Inglés | MEDLINE | ID: mdl-28219363

RESUMEN

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. The aims of this study were to translate and culturally adapt the questionnaire to the context of Swedish paediatric cancer care. In doing so we endeavoured to keep the content in the Swedish version as equivalent to the original as possible but to introduce modifications that improve the functional level and increase respondent satisfaction. METHODS: The procedure included linguistic translation and cultural adaptation of MDS-R's paediatric versions for Physicians, Nurses and Other Healthcare Providers to the context of Swedish paediatric cancer care. The process of adjustment included: preparation, translation procedure and respondent validation. The latter included focus group and cognitive interviews with healthcare professionals in paediatric cancer care. RESULTS: To achieve a Swedish version with a good functional level and high trustworthiness, some adjustments were made concerning design, language, cultural matters and content. Cognitive interviews revealed problems with stating the level of disturbance hypothetically and items with negations caused even more problems, after having stated that the situation never happens. CONCLUSIONS: Translation and cultural adaptation require the involvement of various types of specialist. It is difficult to combine the intention to keep the content as equivalent to the original as possible with the need for modifications that improve the functional level and increase respondent satisfaction. The translated and culturally adapted Swedish MDS-R seems to have equivalent content as well as improved functional level and respondent satisfaction. The adjustments were made to fit paediatric cancer care but it could be argued that the changes are relevant for most areas of paediatric care of seriously ill patients.


Asunto(s)
Cultura , Personal de Salud/ética , Principios Morales , Pediatría/ética , Estrés Psicológico , Encuestas y Cuestionarios , Traducción , Niño , Enfermedad Crítica , Personal de Salud/psicología , Humanos , Lenguaje , Neoplasias/psicología , Neoplasias/terapia , Suecia
16.
Nurs Ethics ; 23(4): 421-31, 2016 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-25736273

RESUMEN

BACKGROUND: Childhood cancer care involves many ethical concerns. Deciding on treatment levels and providing care that infringes on the child's growing autonomy are known ethical concerns that involve the whole professional team around the child's care. OBJECTIVES: The purpose of this study was to explore healthcare professionals' experiences of participating in ethics case reflection sessions in childhood cancer care. RESEARCH DESIGN: Data collection by observations, individual interviews, and individual encounters. Data analysis were conducted following grounded theory methodology. PARTICIPANTS AND RESEARCH CONTEXT: Healthcare professionals working at a publicly funded children's hospital in Sweden participated in ethics case reflection sessions in which ethical issues concerning clinical cases were reflected on. ETHICAL CONSIDERATIONS: The children's and their parents' integrity was preserved through measures taken to protect patient identity during ethics case reflection sessions. The study was approved by a regional ethical review board. FINDINGS: Consolidating care by clarifying perspectives emerged. Consolidating care entails striving for common care goals and creating a shared view of care and the ethical concern in the specific case. The inter-professional perspectives on the ethical aspects of care are clarified by the participants' articulated views on the case. Different approaches for deliberating ethics are used during the sessions including raising values and making sense, leading to unifying interactions. DISCUSSION: The findings indicate that ethical concerns could be eased by implementing ethics case reflection sessions. Conflicting perspectives can be turned into unifying interactions in the healthcare professional team with the common aim to achieve good pediatric care. CONCLUSION: Ethics case reflection sessions is valuable as it permits the discussion of values in healthcare-related issues in childhood cancer care. Clarifying perspectives, on the ethical concerns, enables healthcare professionals to reflect on the most reasonable and ethically defensible care for the child. A consolidated care approach would be valuable for both the child and the healthcare professionals because of the common care goals.


Asunto(s)
Salud Infantil/ética , Toma de Decisiones Clínicas/ética , Comités de Ética Clínica , Ética Médica , Neoplasias/terapia , Niño , Ética en Enfermería , Teoría Fundamentada , Hospitales Pediátricos , Humanos , Relaciones Interprofesionales , Autonomía Personal , Investigación Cualitativa , Suecia
17.
Nurs Ethics ; 23(8): 877-888, 2016 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-26116632

RESUMEN

BACKGROUND: How well ethical concerns are handled in healthcare is influenced by the ethical climate of the workplace, which in this study is described as workplace factors that contribute to healthcare professionals' ability to identify and deal with ethical issues in order to provide the patient with ethically good care. OBJECTIVES: The overall aim of the study was to describe perceptions of the paediatric hospital ethical climate among healthcare professionals who treat/care for children with cancer. RESEARCH DESIGN: Data were collected using the Hospital Ethical Climate Survey developed by Olsson as a separate section in a questionnaire. Descriptive statistics were used to analyse perceptions of the ethical climate. Participants and research context: Physicians, nurses and nurse-aides (n = 89) from three paediatric units participated in this study: haematology/oncology, chronic diseases and neurology. Ethical considerations: The study was approved by the regional ethical review board. FINDINGS: Different perceptions of the ethical climate were rated as positive or negative/neutral. Nurses' ratings were less positive than physicians on all items. One-third of the participants perceived that they were able to practice ethically good care as they believed it should be practised. DISCUSSION: Differences in professional roles, involving more or less power and influence, might explain why physicians and nurses rated items differently. A positive perception of the possibility to practice ethically good care seems to be related to inter-professional trust and listening to guardians/parents. A negative/neutral perception of the possibility to practice ethically good care appears to be influenced by experiences of ethical conflicts as well as a lack of ethical support, for example, time for reflection and discussion. CONCLUSION: The two-thirds of participants who had a negative/neutral perception of the possibility to practice ethically good care are at risk of developing moral stress. Clinical ethics support needs to be implemented in care where important values are at stake.


Asunto(s)
Actitud del Personal de Salud , Neoplasias/terapia , Pediatría/ética , Calidad de la Atención de Salud/ética , Adulto , Anciano , Instituciones Oncológicas , Niño , Femenino , Hospitales Pediátricos , Humanos , Masculino , Persona de Mediana Edad , Enfermeras y Enfermeros/psicología , Asistentes de Enfermería/psicología , Médicos/psicología , Encuestas y Cuestionarios , Adulto Joven
20.
J Pediatr Hematol Oncol Nurs ; 40(3): 178-187, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37032469

RESUMEN

Background: 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. Methods: Eighty nurses who had completed the educational program in three cohorts (2012-2019) were invited to participate in this cross-sectional survey. An electronic study-specific questionnaire containing multiple-choice questions was used. Data were analyzed using descriptive statistics and correlation tests. Results: Fifty-nine (74%) nurses completed the survey, of whom 98% responded that they would recommend the program to a large/fairly large extent. At the time of the survey, 15 (25%) participants had left pediatric oncology care. Among the remaining 44, 31 (71%) of the nurses were working bedside, and 13 (42%) of these combined this with a special position (e.g., consultant nurse). The education resulted in career advancement, as the number of nurses with special positions increased following completion of the program, from 20% to 59%. The vast majority stated that the knowledge gained from the education contributed to increased confidence in interactions with the children/families. Discussion: Continuing education of nurses in pediatric oncology has an impact on career opportunities in clinical practice and contributes to nurses' confidence and professional work. However, education is not enough to retain competent nurses. Employers need to be aware of the role of the work environment, aspects of work-life balance and career paths.


Asunto(s)
Neoplasias , Enfermeras y Enfermeros , Enfermería Oncológica , Enfermería Pediátrica , Niño , Humanos , Estudios Transversales , Oncología Médica , Enfermeras y Enfermeros/psicología , Enfermería Pediátrica/educación , Educación Continua en Enfermería , Enfermería Oncológica/educación , Investigación en Evaluación de Enfermería
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