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Background

Today, person-centred care is seen as a cornerstone of health policy and practice, but accommodating individual patient preferences can be challenging, for example involving caesarean section on maternal request (CSMR). The aim of this study was to explore Swedish health professionals' perspectives on CSMR and analyse them with regard to potential conflicts that may arise from person-centred care, specifically in relation to shared decision-making.

Methods

A qualitative study using both inductive and deductive content analysis was conducted based on semi-structured interviews. It was based on a purposeful sampling of 12 health professionals: seven obstetricians, three midwives and two neonatologists working at different hospitals in southern and central Sweden. The interviews were recorded either in a telephone call or in a video conference call, and audio files were deleted after transcription.

Results

In the interviews, twelve types of expressions (sub-categories) of five types of conflicts (categories) between shared decision-making and CSMR emerged. Most health professionals agreed in principle that women have the right to decide over their own body, but did not believe this included the right to choose surgery without medical indications (patient autonomy). The health professionals also expressed that they had to consider not only the woman's current preferences and health but also her future health, which could be negatively impacted by a CSMR (treatment quality and patient safety). Furthermore, the health professionals did not consider costs in the individual decision, but thought CSMR might lead to crowding-out effects (avoiding treatments that harm others). Although the health professionals emphasised that every CSMR request was addressed individually, they referred to different strategies for avoiding arbitrariness (equality and non-discrimination). Lastly, they described that CSMR entailed a multifaceted decision being individual yet collective, and the use of birth contracts in order to increase a woman's sense of security (an uncomplicated decision-making process).

Conclusions

The complex landscape for handling CSMR in Sweden, arising from a restrictive approach centred on collective and standardised solutions alongside a simultaneous shift towards person-centred care and individual decision-making, was evident in the health professionals' reasoning. Although most health professionals emphasised that the mode of delivery is ultimately a professional decision, they still strived towards shared decision-making through information and support. Given the different views on CSMR, it is of utmost importance for healthcare professionals and women to reach a consensus on how to address this issue and to discuss what patient autonomy and shared decision-making mean in this specific context.

This paper analyses the process in which expert reports on health care governance are commissioned, produced and received in a Swedish setting. Based on an empirical analysis of interviews with commissioners and producers of such reports, the paper argues that the typical process in which expert reports on health governance come about is fraught with quite deficient ways of producing expert knowledge. The analysis contributes to the literature on the role of expertise in governance and policymaking. In contrast to most other analyses in this field, the paper focuses not on the content of expert reports nor on their political uptake but on the process in which they are produced.

Background: Cancer diagnosis can lead to massive physical, emotional, and social burdens on children and their families. Although children have the right to be informed and participate in their care, research shows that children's views are often not considered in care situations. Thus, it is essential to strengthen children's communication and self-efficacy (SE) to convey desires and needs. The present study explores whether a play intervention is associated with improved health-related quality of life (HrQoL) and SE for communication in care situations. We hypothesize that HrQoL and SE for communication will increase from the beginning to after the pretend play intervention.

Methods: Children with cancer from Germany and Sweden were enrolled. The pretend play intervention consisted of six to 10 play sessions. A heterogenic selection of questionnaires was used to measure children's HrQoL and SE before the first pretend play session and after the last play intervention.

Results: Nineteen families were included in the presented analyses, including 14 self-reports of children and 19 proxy reports of parents. We found improvements in child-reported communication, and emotional and psychosocial well-being using generic and cancer-specific HrQoL measurements. Further, children's SE in care situations improved during the play intervention. Parents also reported minor improvements in the physical dimensions in both generic and chronic‐generic HrQoL, along with improvements in independence.

Discussion: Overall, the cancer-specific pretend play intervention offers young children with cancer a secure environment and can contribute to their well-being, and communication skills, during or after cancer treatment. 

BACKGROUND: Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research.

METHODS: An explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis.

RESULTS: The respondents' ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted.

CONCLUSION: This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research.

Background

Globally, studies illustrate different approaches among health care professionals to decision making about caesarean section (CS) and that attitudes regarding the extent to which a CS on maternal request (CSMR) can be granted vary significantly, both between professionals and countries. Absence of proper regulatory frameworks is one potential explanation for high CSMR rates in some countries, but overall, it is unclear how recommendations and guidelines on CSMR relate to CSMR rates. In Sweden, CSMR rates are low by international comparison, but statistics show that the extent to which maternity clinics perform CSMR vary among Sweden’s 21 self-governing regions. These regions are responsible for funding and delivery of healthcare, while national guidelines provide guidance for the professions throughout the country; however, they are not mandatory. To further understand considerations for CSMR requests and existing practice variations, the aim was to analyse guideline documents on CSMR at all local maternity clinics in Sweden.

Methods

All 43 maternity clinics in Sweden were contacted and asked for any guideline documents regarding CSMR. All clinics replied, enabling a total investigation. We used a combined deductive and inductive design, using the framework method for the analysis of qualitative data in multi-disciplinary health research.

Results

Overall, 32 maternity clinics reported guideline documents and 11 denied having any. Among those reporting no guideline documents, one referred to using national guideline document. Based on the Framework method, four theme categories were identified: CSMR is treated as a matter of fear of birth (FOB); How important factors are weighted in the decision-making is unclear; Birth contracts are offered in some regions; and The post-partum care is related to FOB rather than CSMR.

Conclusion

In order to offer women who request CS equal and just care, there is a pressing need to either implement current national guideline document at all maternity clinics or rewrite the guideline documents to enable clinics to adopt a structured approach. The emphasis must be placed on exploring the reasons behind the request and providing unbiased information and support. Our results contribute to the ongoing discussion about CSMR and lay a foundation for further research in which professionals, as well as stakeholders and both women planning pregnancy and pregnant women, can give their views on this issue.

BackgroundAlthough the rate of survival in childhood cancer today is close to 85%, a cancer diagnosis can still turn the world upside down for both children and parents. Often, children in oncology care are frustrated about their inability to control events and activities around them. Therapeutic pretend play has been suggested as a means to encourage children to express and handle emotions in a safe environment.PurposeThis study was developed to describe and explore parents' experiences of a pretend play intervention that consisted of six to eight play sessions with a play facilitator administered to their children undergoing cancer treatment.MethodsA descriptive qualitative method was used, including individual interviews with 15 parents.ResultsThree main categories were developed, including (a) experiences of joining the project, (b) perceptions of the play intervention, and (c) reflections on effects and implications, with subcategories evolved for each category. The parents experienced that the play sessions helped improve their children's communication skills and made them more capable of participating in their care. They appreciated that the intervention focused on the child's well-being and saw it as a positive break in their child's cancer treatment. It also helped them better reflect on their own situation.Conclusions/Implications for PracticeAccording to the parents' experiences, pretend play can be a helpful tool for improving children's participation in their cancer care that strengthens their autonomy, emotional repertoire, and communication skills. However, the results also highlighted that some of the children did not fully understand the information provided about this study, which weakened the validity of their consent to participate. Thus, more work is needed on developing age-appropriate information to obtain participation consent from children. In addition, more knowledge is needed regarding how to appropriately include children with cancer in research in an ethically acceptable way.

Research ethics committees (RECs) have a crucial role in protecting children in research. However, studies on REC members’ perspectives on paediatric research are scarce. We conducted a qualitative study to explore Swedish scientific REC members’ perspectives on ethical aspects in applications involving children with severe health conditions. The REC members considered promoting participation, protecting children and regulatory adherence to be central aspects. The results underscored the importance of not neglecting ill children’s rights to adapted information and participation. REC members supported a contextual and holistic approach to vulnerability and risk, which considers the child’s and parents’ psychological wellbeing and the child’s integrity, both short and long term. The ethical complexity of paediatric research requires continuous ethical competence development within RECs.

 Purpose

The purpose of this paper is to contribute knowledge on ethical issues and reasoning in expert reports concerning healthcare governance, commissioned by the Swedish healthcare system.

Design/methodology/approach

An in-depth analysis of ethical issues and reasoning in 36 commissioned expert reports was performed. Twenty-seven interviews with commissioners and producers of the reports were also carried out and analysed.

Findings

Some ethical issues were identified in the reports. But ethical reasoning was rarely evident. The meaning of ethical concepts could be devalued and changed over time and thereby deviate from statutory ethical goals and values. Several ethical issues of great concern for the Swedish public healthcare were also absent.

Practical implications

The commissioner of expert reports needs to ensure that comprehensive ethical considerations and ethical analysis are integrated in the expert reports.

Originality/value

Based on an extensive data material this paper reveals an ethical void in expert reports on healthcare governance. By avoiding ethical issues there is a risk that the expert reports could bring about reforms and control models that have ethically undesirable consequences for people and society.

BACKGROUND: Among the myriad voices advocating diverging ideas of what general practice ought to be, none seem to adequately capture its ethical core. There is a paucity of attempts to integrate moral theory with empirical accounts of the embodied moral knowledge of GPs in order to inform a general normative theory of good general practice. In this article, we present an empirically grounded model of the professional morality of GPs, and discuss its implications in relation to ethical theories to see whether it might be sustainable as a general practice ethic.

METHODS: We observed and interviewed sixteen GPs and GP residents working in health care centres in four Swedish regions between 2015-2017. In keeping with Straussian Grounded Theory, sampling was initially purposeful and later theoretically guided, and data generation, analysis and theoretical integration proceeded in parallel. The focal concept of this article was refined through multidimensional property supplementation.

RESULTS: The voice of the profession is one of four concepts in our emerging theory that attempt to capture various motives that affect GPs' everyday moral decisionmaking. It reflects how GPs appreciate the situation by passing three professional-moral judgments: Shall I see what is before me, or take a bird's-eye view? Shall I intervene, or stay my hand? And do I need to speak up, or should I rather shut up? By thus framing the problem, the GP narrows down the range of considerations, allowing them to focus on its morally most pertinent aspects. This process is best understood as a way of heeding Løgstrup's ethical demand. Refracted through the lens of the GP's professional understanding of life, the ethical demand gives rise to specific moral imperatives that may stand in opposition to the express wishes of the other, social norms, or the GP's self-interest.

CONCLUSIONS: The voice of the profession makes sense of how GPs frame problematic situations in moral terms. It is coherent enough to be sustainable as a general practice ethic, and might be helpful in explaining why ethical decisions that GPs intuitively understand as justified, but for which social support is lacking, can nevertheless be legitimate.

Little is known about the information parents of children with cancer find when searching for clinical trials information on YouTube. Thus, this study aimed to analyse the content, quality and reliability of YouTube videos focused on clinical trials for paediatric cancer. A descriptive cross-sectional design was used, and YouTube was searched using the phrases ‘clinical trials for children with cancer’ and ‘paediatric cancer clinical trials’. Videos that met inclusion criteria were assessed using the instruments Global Quality Scale and DISCERN. About half of the examined videos were in the GQS excellent-quality group and exhibited a total of 84,804 views. The mean time for videos was 5.7 minutes, they originated from the US or UK, were uploaded after 2016, and had a cancer centre/foundation or children hospital as video source. Half of them were focusing on early experimental trials and had a positive tone. Twenty percent were classified as useful without serious shortcomings, almost 50% as misleading with serious shortcomings, and 30% as inappropriate sources of information. In conclusion, most YouTube videos on paediatric cancer trials are not very informative and fall short of what could ethically be required regarding their facilitation of informed decision-making.