Protecting Family Interests: An Interview Study with Foreign-Born Parents Struggling On in Childhood Cancer Care

Sweden's population is gradually changing to become more multiethnic and diverse and that applies also for recipients of health care, including childhood cancer care. A holistic view on the sick child in the context of its family has always been a cornerstone in childhood cancer care in Sweden. The purpose of this study was to gain knowledge about the experiences and main concern of foreign-born parents in the context of paediatric cancer care. Interviews were performed with eleven foreign-born parents and data were analysed using a classic grounded theory approach. Foreign-born parents often feel in a position of powerless dependence, but family interests are protected in their approaches to interaction with healthcare staff, through cooperation, contesting, and reluctant resigning. Healthcare staff need to listen to foreign-born parents and deal with their concerns seriously to prevent powerless-dependence and work for trustful cooperation in the common fight against childhood cancer

Book Review: Leaving Rules that Enforce Preconception

No preconceptions -The grounded theory dictum. Mill Valley, CA: Sociology Press Given that the dictum of no preconception is not new in GT, why did Glaser focus his attention so much on it to write a whole book on this topic? The dictum has been declared over and over again, for example in the chapter on Generating Theory in the seminal work of In the first chapter of this book by Glaser (2013), the question why "no preconception" is a dictum in grounded theory (GT) methodology is answered. GT was discovered in a research field heavily focusing on testing hypotheses and verifying theories The aim of the book was to minimize preconception and Glaser Preconception rules the world and is explained as an important aspect of everyday life and in every step of the research process including the formulation of a problem area, the substantive coding, the theoretical coding integrating the concepts, and the impact on the entire GT process (Glaser, 2013). The method for the book is presented in chapter 7 together with some of the memos Dr. Glaser received from colleagues on preconception. In the last chapter, the reader finds a theory by Kwok, McCallin & Dickson entitled "Working through preconception: Moving from forcing to emergence." This theory highlights the difficulties in staying open and is followed by an appendix written by Dr. Thulesius on his experiences derived from being a GT mentor. To minimize the preconceptions, Dr. Glaser is incentivizing the no preconception and equipping for emergence

Elusive Participation – Social Workers’ Experience of the Participation of Children with Disabilities in LSS Assessments

The aim of this study was to gain a deeper understanding of Swedish social workers’ experience of disabled children’s participation, to discover in what ways their knowledge about impairment and disability, combined with legal literacy and local context influence children’s participation in formal meetings and decision making. Seven focus-group interviews were conducted with 35 municipal social workers from communities in different parts of Sweden. The phenomenological analysis resulted in the overarching theme of elusive participation, in which participation was described as difficult to grasp both in relation to what was supposed to be achieved and what it was meant to result in. Elusive participation entailed a discrepancy between policy and practice, norms and perception of normality, conflicting perspectives and needs, judgment of children’s abilities. These findings underline the importance of creating safe spaces in which social workers have the opportunity for critical reflections and shared discussions about social work practice

Façading in transcultural caring relationships : Healthcare staff and foreign-born parents in childhood cancer care

The overall aim of this thesis was to explore the caring situation of families with a foreign background within the context of pediatric oncology in Sweden. Pediatric cancer entails a long period of continuous and cumulative stress for the entire family. Furthermore, Sweden has become an increasingly multicultural society, resulting in a need for studies and training in transcultural care. The present thesis is based on 4 exploratory studies; I to III are from the perspective of healthcare staff and study IV from the perspective of foreign-born parents. The studies were used to generate a grounded theory unifying them. Grounded theory (GT) methodology was chosen for this thesis as it aims to discover how participants resolve their main concern; explaining patterns of behaviour that are problematic and relevant. Studies I and II included 5 focus group interviews with healthcare staff and 5 individual interviews with registered nurses. In study III, individual interviews were conducted with 12 nurses from different areas of pediatric care. In study IV, 11 foreign-born parents were interviewed; 4 of them with an interpreter. Data were analyzed according to the constant comparative method of GT. Study I presents obstacles to transcultural caring relationships, including linguistic, cultural and religious, social, and organizational obstacles. Bridging, presented in study II, is the way healthcare staff resolve this, using communicational, transcultural and organizational tools. In study III overwhelming emotional expressions were found to override nurses professional preparedness; they continuously resolve this by protecting professional composure, using various strategies. In study IV, foreign-born parents need to struggle on accounts for much of their behaviour, which includes ways of resourcing and protecting self-interest in health care. Façading is the latent pattern of behaviour used by healthcare staff and foreign-born parents to resolve the main concern of protecting self-interest and is central in transcultural caring relationships. These studies provide insights into social interactions in transcultural childhood cancer care that could be used to explain, interpret and predict. Formal theories of core categories would be of value and presented strategies could be used in achieving a more congruent and equal childhood cancer care for families with a foreign background

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. 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

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. 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.publishedVersionPeer reviewe

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. 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

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. 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

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. 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.Funding Agencies|Swedish Childhood Cancer Foundation [PR2014-0116, FoAss 13/07]</p