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1.
BMC Med Ethics ; 25(1): 75, 2024 Jun 26.
Article in English | MEDLINE | ID: mdl-38926715

ABSTRACT

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.


Subject(s)
Morals , Neoplasms , Qualitative Research , Humans , Neoplasms/therapy , Neoplasms/psychology , Child , Female , Sweden , Male , Adolescent , Focus Groups , Social Values
2.
Psychooncology ; 31(12): 2149-2158, 2022 12.
Article in English | MEDLINE | ID: mdl-36307935

ABSTRACT

INTRODUCTION: When a child is diagnosed with cancer, the whole family is affected, and parents struggle to grasp challenging information regarding diagnosis and prognosis. Most parents and children want honest communication and openness, yet this remains a complex and challenging task for healthcare professionals. OBJECTIVES: To describe bereaved mothers' and fathers' reports of communication of their child's cancer diagnosis and when the illness became incurable. METHODS: Data from a Swedish population-based survey conducted in 2016, including 135 mothers and 97 fathers who had lost a child to cancer 1-5 years earlier, were studied regarding the parents' reports of communication about their child's illness. RESULTS: A vast majority of parents wants information when their child's illness becomes incurable, and this need is generally met. However, fathers to a lesser extent than mothers, reported that they were informed about it. According to parents' reports 87% of children received diagnostic information and 44% of the children received prognostic information. CONCLUSION: A vast majority of both mothers and fathers would like to know when their child's illness becomes incurable, yet it remains unknown to what extent they want their child to be informed.


Subject(s)
Neoplasms , Parents , Child , Female , Humans , Male , Prognosis , Mothers , Communication , Neoplasms/diagnosis , Fathers
3.
BMC Med Ethics ; 23(1): 108, 2022 11 11.
Article in English | MEDLINE | ID: mdl-36368984

ABSTRACT

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.


Subject(s)
Morals , Neoplasms , Adult , Humans , Female , Child , Cross-Sectional Studies , Ethics, Clinical , Attitude of Health Personnel , Neoplasms/therapy
4.
BMC Med Ethics ; 22(1): 27, 2021 03 17.
Article in English | MEDLINE | ID: mdl-33731101

ABSTRACT

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.


Subject(s)
Neoplasms , Child , Delivery of Health Care , Humans , Morals , Neoplasms/therapy , Perception , Qualitative Research , Sweden
5.
BMC Med Ethics ; 21(1): 6, 2020 01 13.
Article in English | MEDLINE | ID: mdl-31931787

ABSTRACT

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.


Subject(s)
Attitude of Health Personnel , Conflict, Psychological , Medical Oncology/ethics , Morals , Pediatrics/ethics , Child , Cross-Sectional Studies , Female , Humans , Male , Medical Staff, Hospital/psychology , Nursing Staff, Hospital/psychology , Psychometrics , Sweden
6.
Psychooncology ; 28(4): 735-741, 2019 04.
Article in English | MEDLINE | ID: mdl-30695112

ABSTRACT

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.


Subject(s)
Attitude of Health Personnel , Health Personnel/ethics , Hospitals, Pediatric/ethics , Neoplasms/therapy , Adult , Child , Clinical Competence , Cross-Sectional Studies , Female , Humans , Male , Medical Oncology/ethics , Middle Aged , Nursing Staff, Hospital/ethics , Sweden
7.
Nurs Ethics ; 26(7-8): 2351-2363, 2019.
Article in English | MEDLINE | ID: mdl-30411660

ABSTRACT

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.


Subject(s)
Ethics , Health Personnel/psychology , Medical Oncology/ethics , Adult , Attitude of Health Personnel , Female , Health Personnel/statistics & numerical data , Humans , Male , Medical Oncology/methods , Pediatrics/ethics , Pediatrics/methods , Psychometrics/instrumentation , Psychometrics/methods , Surveys and Questionnaires , Sweden
8.
BMC Med Ethics ; 19(1): 35, 2018 05 10.
Article in English | MEDLINE | ID: mdl-29747639

ABSTRACT

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.


Subject(s)
Hospitals/ethics , Organizational Culture , Pediatrics/ethics , Surveys and Questionnaires , Translating , Translations , Comprehension , Culture , Humans , Language , Morals
9.
Nurs Ethics ; 25(2): 199-211, 2018 Mar.
Article in English | MEDLINE | ID: mdl-29529973

ABSTRACT

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.


Subject(s)
Attitude of Health Personnel , Ethics, Clinical , Medical Staff, Hospital/psychology , Neoplasms/therapy , Patient Care Team/organization & administration , Child , Grounded Theory , Hospitals, Pediatric , Humans , Medical Staff, Hospital/statistics & numerical data , Observation , Qualitative Research , Sweden
10.
BMC Med Ethics ; 18(1): 14, 2017 Feb 20.
Article in English | MEDLINE | ID: mdl-28219363

ABSTRACT

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.


Subject(s)
Culture , Health Personnel/ethics , Morals , Pediatrics/ethics , Stress, Psychological , Surveys and Questionnaires , Translating , Child , Critical Illness , Health Personnel/psychology , Humans , Language , Neoplasms/psychology , Neoplasms/therapy , Sweden
11.
Nurs Ethics ; 23(4): 421-31, 2016 Jun.
Article in English | MEDLINE | ID: mdl-25736273

ABSTRACT

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.


Subject(s)
Child Health/ethics , Clinical Decision-Making/ethics , Ethics Committees, Clinical , Ethics, Medical , Neoplasms/therapy , Child , Ethics, Nursing , Grounded Theory , Hospitals, Pediatric , Humans , Interprofessional Relations , Personal Autonomy , Qualitative Research , Sweden
12.
Nurs Ethics ; 23(8): 877-888, 2016 Dec.
Article in English | MEDLINE | ID: mdl-26116632

ABSTRACT

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.


Subject(s)
Attitude of Health Personnel , Neoplasms/therapy , Pediatrics/ethics , Quality of Health Care/ethics , Adult , Aged , Cancer Care Facilities , Child , Female , Hospitals, Pediatric , Humans , Male , Middle Aged , Nurses/psychology , Nursing Assistants/psychology , Physicians/psychology , Surveys and Questionnaires , Young Adult
13.
BMC Rheumatol ; 8(1): 35, 2024 Aug 15.
Article in English | MEDLINE | ID: mdl-39143588

ABSTRACT

BACKGROUND: Medical treatment for children with Juvenile Idiopathic Arthritis (JIA) has improved radically since the development of biological disease-modifying antirheumatic drugs. However, children suffer from pain and anxiety, and parents often experience loneliness and lack of support. Some parents reported that information provided at the time their child was diagnosed could be difficult to assimilate. Therefore, the aim of this study was to develop a Juvenile Arthritis Support Program (JASP-1) for children recently diagnosed with JIA and their parents. Moreover, the aim was to explore patients´ and parents´ experiences with JASP-1 and its potential impact on patients´ physical health. METHODS: JASP-1 included seven patient- and family-centered clinical visit from time of diagnose and one year ahead. Data were collected from a study-specific questionnaire answered by children and their parents after participation in JASP-1 and from the pediatric rheumatology register. The study-specific questionnaire explored participants´ experience with the care they received during their first year with JIA. Registry and questionnaire data from the intervention (JASP-1) group was compared to a control group. RESULTS: The analysis revealed that children and parents who completed JASP-1 were more satisfied with the care they had received during their first year with JIA than the control group. The results also showed that children who completed JASP-1 were assessed as having better overall health after 12 months, than children in the control group (JASP-1 = mean 4.33, 95% Confidence Interval (CI) 4.17 - 4.46), (Control = mean 3.68, 95% CI 3.29 - 4.06), (p = 0.002). Moreover, children in the JASP-1 group had less disease impact on daily life (JASP-1 = mean 0.15, 95% CI 0.07 - 0.24) (Control = mean 0.40, 95% CI 0.13 - 0.67), (p = 0.017) and less active joints than the control group (JASP-1 = mean 0.62, 95% CI 0.35 - 1.58), (Control = mean 0.87, 95% CI 0.18 - 1.56), (p = 0.054). CONCLUSION: A support program like JASP-1 could be an effective way of not only supporting children newly diagnosed with JIA and their parents psychologically but may also increase children's overall physical health and improve quality of care within pediatric rheumatology. TRIAL REGISTRATION: Retrospectively registered in ClinicalTrials.gov, the 13th of February with ID NCT06284616.

14.
Pediatr Rheumatol Online J ; 21(1): 5, 2023 Jan 18.
Article in English | MEDLINE | ID: mdl-36653842

ABSTRACT

BACKGROUND: In the midst of the COVID-19 coronavirus pandemic, a new disease that affects children has arisen called multisystem inflammatory syndrome in children (MIS-C). Several research articles focusing on its medical aspects have been published, but very few have focused on nursing care. The aim of this study was therefore to describe the nursing status of children suffering from MIS-C and the experiences of registered nurses (RNs) in caring for these children in paediatric hospital inpatient care. METHODS: The study design includes both quantitative nursing clinical record data and qualitative interview data. Quantitative data from the clinical records were analysed using descriptive statistics. Qualitative data analysis of the interviews was conducted using both deductive and inductive approaches with content analysis. RESULTS: In total, 47 clinical records from children with MIS-C were investigated during January-March 2021. The mean age of the children was 8.8 years. Boys were more affected than girls. Challenges in children's nursing status were related to circulation (fever and swelling), nutrition (great thirst and loss of appetite), pain, and psychosocial situations. When caring for children with MIS-C, nurses experienced "frustration over uncertainty of care", "children's illbeing" and "unavoidable procedures". CONCLUSION: This study contributes knowledge to the ongoing nursing care of children suffering from MIS-C. The results show many different areas of nursing focus, which challenges nurses and other disciplines within paediatric hospital care. One important factor when caring for these children was the use of a central venous line early in the care process, which improved the quality of care. Moreover, the care of children suffering from MIS-C demands resources and time from healthcare professionals, especially RNs, to meet caring needs and reduce illbeing.


Subject(s)
COVID-19 , Hospitals, Pediatric , Male , Female , Humans , Child , COVID-19/epidemiology , Patient Care , Pain
15.
Eur J Oncol Nurs ; 52: 101950, 2021 Jun.
Article in English | MEDLINE | ID: mdl-33862416

ABSTRACT

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. RESULTS: Participation in ethics discussions was related to perceptions of greater involvement and the possibility of influencing decisions, as well as formal/shared responsibility for the ethics decisions related to patient care. Medical doctors and registered nurses perception of involvement in decisions, possibility to influence and responsibility decreased when they were not present during the ethics discussion or when no ethics discussion was conducted at all. Healthcare professionals had a generally good understanding of the ethical issues and the ethics decisions. The whole group considered medical doctors to be the most important participants in the ethics discussions, followed by patients/family. Healthcare professionals wanted more teamwork and viewed ethics discussions as very helpful for teamwork when dealing with ethical issues in paediatric oncology. CONCLUSIONS: Ethics discussions in paediatric oncology practice increases the involvement within and the understanding of the decision-making process about ethical decisions. The understanding is not always dependent on participation, indicating a great trust in team members. Based on these findings the implementation of a structure for ethics support in paediatric oncology where patients/families are integrated is recommended.


Subject(s)
Decision Making/ethics , Health Personnel/ethics , Hospitals, Pediatric/ethics , Medical Oncology/ethics , Patient Care Team/ethics , Attitude of Health Personnel , Child , Cross-Sectional Studies , Ethics, Clinical , Female , Humans , Male , Physician-Patient Relations , Professional-Family Relations , Surveys and Questionnaires , Sweden
16.
Cancer Nurs ; 38(2): 125-32, 2015.
Article in English | MEDLINE | ID: mdl-24945260

ABSTRACT

BACKGROUND: The treatment for pediatric cancer is often physically, socially, and psychologically demanding and often gives rise to ethical issues. OBJECTIVE: The purpose of this study was to describe healthcare professionals' experiences of ethical issues and ways to deal with these when caring for children with cancer. METHODS: A study-specific questionnaire was given to healthcare professionals at a pediatric hospital in Sweden. Qualitative content analysis was used to analyze answers to open-ended questions. The data were sorted into 2 domains based on the objective of the study. In the next step, the data in each domain were inductively coded, generating categories and subcategories. RESULTS: The main ethical issues included concerns of (1) infringing on autonomy, (2) deciding on treatment levels, and (3) conflicting perspectives that constituted a challenge to collaboration. Professionals desired teamwork and reflection to deal with ethical concerns, and they needed resources for dealing with ethics. IMPLICATIONS FOR PRACTICE: Interprofessional consideration needs to be improved. Forums and time for ethics reflections need to be offered to deal with ethical concerns in childhood cancer care. CONCLUSIONS: Experiences of ethical concerns and dealing with these in caring for children with cancer evoked strong feelings and moral perplexity among nursing staff. The study raises a challenging question: How can conflicting perspectives, lack of interprofessional consideration, and obstacles related to parents' involvement be "turned around," that is, contribute to a holistic perspective of ethics in cancer care of children?


Subject(s)
Child Health/ethics , Ethics, Nursing , Neoplasms , Adult , Humans , Male , Middle Aged , Nursing Staff/ethics , Surveys and Questionnaires , Sweden
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