Perceptions of 3R implementation in European animal research: A systematic review, meta-analysis, and meta-synthesis of barriers and facilitators.

OBJECTIVES: The purpose of this systematic review was to examine how the scientific community in Europe that is involved with research with animals perceives and experiences the implementation of 3R (Replace, Reduce, Refine). METHODS: A systematic search of the literature published in the past ten years was performed in PubMed, Web of Science and Scopus. Publications were screened for eligibility using a priori inclusion criteria, and only empirical evidence (quantitative, qualitative, or mixed methodologies) was retained. Quantitative survey items were investigated by conducting a meta-analysis, and the qualitative data was summarized using an inductive meta-synthetic approach. Included publications were assessed using the Quality Assessment for Diverse Studies tool. RESULTS: 17 publications were included (eight quantitative, seven qualitative, two mixed-methods). The meta-analysis revealed that scientists are skeptical about achieving replacement, even if they believe that 3R improve the quality of experimental results. They are optimistic concerning the impact of 3R on research costs and innovation, and see education as highly valuable for the implementation of 3R. The meta-synthesis revealed four barriers (systemic dynamics, reification process, practical issues, insufficient knowledge) and four facilitators (efficient use of animals, caring for animals, regulatory uptake, supportive workplace environment). CONCLUSION: These findings show actionable levers at the local and systemic levels, and may inform regulators and institutions in their 3R policies. TRIAL REGISTRATION: The protocol was registered into the PROSPERO database under the number CRD42023395769.

Integrating ethics in AI development: a qualitative study.

BACKGROUND: While the theoretical benefits and harms of Artificial Intelligence (AI) have been widely discussed in academic literature, empirical evidence remains elusive regarding the practical ethical challenges of developing AI for healthcare. Bridging the gap between theory and practice is an essential step in understanding how to ethically align AI for healthcare. Therefore, this research examines the concerns and challenges perceived by experts in developing ethical AI that addresses the healthcare context and needs. METHODS: We conducted semi-structured interviews with 41 AI experts and analyzed the data using reflective thematic analysis. RESULTS: We developed three themes that expressed the considerations perceived by experts as essential for ensuring AI aligns with ethical practices within healthcare. The first theme explores the ethical significance of introducing AI with a clear and purposeful objective. The second theme focuses on how experts are concerned about the tension that exists between economic incentives and the importance of prioritizing the interests of doctors and patients. The third theme illustrates the need to develop context-sensitive AI for healthcare that is informed by its underlying theoretical foundations. CONCLUSIONS: The three themes collectively emphasized that beyond being innovative, AI must genuinely benefit healthcare and its stakeholders, meaning AI also aligns with intricate and context-specific healthcare practices. Our findings signal that instead of narrow product-specific AI guidance, ethical AI development may need a systemic, proactive perspective that includes the ethical considerations (objectives, actors, and context) and focuses on healthcare applications. Ethically developing AI involves a complex interplay between AI, ethics, healthcare, and multiple stakeholders.

Building a family at advanced parental age: a systematic review on the risks and opportunities for parents and their offspring.

STUDY QUESTION: What is the existing empirical literature on the psychosocial health and wellbeing of the parents and offspring born at an advanced parental age (APA), defined as 40 years onwards? SUMMARY ANSWER: Although the studies show discrepancies in defining who is an APA parent and an imbalance in the empirical evidence for offspring, mothers, and fathers, there is a drive towards finding psychotic disorders and (neuro-)developmental disorders among the offspring; overall, the observed advantages and disadvantages are difficult to compare. WHAT IS KNOWN ALREADY: In many societies, children are born to parents at advanced ages and there is rising attention in the literature towards the consequences of this trend. STUDY DESIGN SIZE DURATION: The systematic search was conducted in six electronic databases (PubMed including Medline, Embase, Scopus, PsycInfo, CINAHL, and SocINDEX) and was limited to papers published between 2000 and 2021 and to English-language articles. Search terms used across all six electronic databases were: ('advanced parental age' OR 'advanced maternal age' OR 'advanced paternal age' OR 'advanced reproductive age' OR 'late parent*' OR 'late motherhood' OR 'late fatherhood') AND ('IVF' OR 'in vitro fertilization' OR 'in-vitro-fertilization' OR 'fertilization in vitro' OR 'ICSI' OR 'intracytoplasmic sperm injection' OR 'reproductive techn*' OR 'assisted reproductive technolog*' OR 'assisted reproduction' OR 'assisted conception' OR 'reproduction' OR 'conception' OR 'birth*' OR 'pregnan*') AND ('wellbeing' OR 'well-being' OR 'psycho-social' OR 'social' OR 'ethical' OR 'right to reproduce' OR 'justice' OR 'family functioning' OR 'parental competenc*' OR 'ageism' OR 'reproductive autonomy' OR 'outcome' OR 'risk*' OR 'benefit*'). PARTICIPANTS/MATERIALS SETTING METHODS: The included papers were empirical studies in English published between 2000 and 2021, where the study either examined the wellbeing and psychosocial health of parents and/or their children, or focused on parental competences of APA parents or on the functioning of families with APA parents. A quality assessment of the identified studies was performed with the QATSDD tool. Additionally, 20% of studies were double-checked at the data extraction and quality assessment stage to avoid bias. The variables sought were: the geographical location, the year of publication, the methodological approach, the definitions of APA used, what study group was at the centre of the research, what research topic was studied, and what advantages and disadvantages of APA were found. MAIN RESULTS AND THE ROLE OF CHANCE: A total number of 5403 articles were identified, leading to 2543 articles being included for title and abstract screening after removal of duplicates. This resulted in 98 articles included for a full-text reading by four researchers. Ultimately, 69 studies were included in the final sample. The key results concerned four aspects relevant to the research goals. (i) The studies showed discrepancies in defining who is an APA parent. (ii) There was an imbalance in the empirical evidence produced for different participant groups (mothers, fathers, and offspring), with offspring being the most studied study subjects. (iii) The research topics studied underlined the increased risks of neuro-developmental and psychotic disorders among offspring. (iv) The observed advantages and disadvantages were varied and could not be compared, especially for the offspring of APA parents. LIMITATIONS REASONS FOR CAUTION: Only English-language studies, published between 2000 and 2021, found in the above-mentioned databases were considered for this review. WIDER IMPLICATIONS OF THE FINDINGS: More research is necessary to understand the risks and benefits of building a family at an APA for the offspring when they reach adulthood. Furthermore, studies that explore the perspective of older fathers and older parents from non-Western societies would be highly informative. STUDY FUNDING/COMPETING INTERESTS: The writing of this manuscript was permitted by financial support provided by the Swiss National Science Foundation (Weave/Lead Agency funding program, grant number 10001AL_197415/1, project title 'Family Building at Advanced Parental Age: An Interdisciplinary Approach'). The funder had no role in the drafting of this manuscript and the views expressed therein are those of the authors. The authors have no conflicts of interest. REGISTRATION NUMBER: This systematic review is registered in Prospero: CRD42022304564.

Rethinking advanced motherhood: a new ethical narrative.

The aim of the study is to rethink the ethics of advanced motherhood. In the literature, delayed childbearing is usually discussed in the context of reproductive justice, and in relationship to ethical issues associated with the use and risk of assisted reproductive technologies. We aim to go beyond these more "traditional" ways in which reproductive ethics is framed by revisiting ethics itself through the lens of the figure of the so-called "older" mother. For this purpose, we start by exploring some of the deep seated socio-cultural discourses in the context of procreation: ageism, ableism and the widespread bias towards geneticism and pronatalism. Afterwards, we provide a critical overview of the key arguments against or in support of advanced motherhood. We then briefly discuss how entrenchment by both sides has produced an impasse in the debate on the ethics of advanced motherhood and proceed by arguing that it is fundamental to bring about a change in this narrative. For this purpose, we will revisit the feminist usage of the concept of vulnerability which will allow us both to criticize culturally prescribed norms about motherhood and to address the painful reality of age-related fertility decline. In the last section, we argue that instead of defining "older" motherhood as an ethical problem, we should problematize the fact that female reproductive ageing is an understudied and ill-sourced topic. We believe that allocating resources to research to better understand female reproductive ageing is not only ethically permissible, but might even be ethically desirable.

Russell and Burch's 3Rs then and now: The case of Switzerland.

Since Russell and Burch introduced and defined the 3Rs, i.e., the replacement, reduction, and refinement of animal use in research, in 1959, different definitions have emerged and been implemented in guidelines and policies. Switzerland is known for having some of the most restrictive legislation regarding the use of animals, in which the 3Rs are also defined and implemented. To our knowledge, the purpose and definitions of the 3Rs used in the Swiss Animal Welfare Act, Animal Protection Ordinance, and Animal Experimentation Ordinance have never been compared with Russell and Burch's original purpose and definitions. In this paper we make this comparison with two aims: to reveal ethically relevant departures from the original purpose and definitions, and to provide an ethical evaluation of the current Swiss law regarding the 3Rs. In doing so, we first expose the similarity of purposes. We then identify one risky departure from the original definition of replacement in Swiss law, which shows a problematic focus on species. Finally, we address Swiss law's failure to apply the 3Rs in the most effective way. With respect to this last point, we discuss the need for 3R conflict resolution, the timing of application of the 3Rs, problematic prioritizations and choices of convenience as well as a solution to apply the 3Rs more effectively using Russell and Burch's concept of total sum of distress.

Brain-Computer Interfaces, Completely Locked-In State in Neurodegenerative Diseases, and End-of-Life Decisions.

In the future, policies surrounding end-of-life decisions will be faced with the question of whether competent people in a completely locked-in state should be enabled to make end-of-life decisions via brain-computer interfaces (BCI). This article raises ethical issues with acting through BCIs in the context of these decisions, specifically self-administration requirements within assisted suicide policies. We argue that enabling patients to end their life even once they have entered completely locked-in state might, paradoxically, prolong and uphold their quality of life.

Motivation and training needs of prison healthcare professionals: findings from a qualitative study.

Health care in prison is a challenging task. The conditions of imprisonment create distinct difficulties for those providing health care in this setting. These particular circumstances have led to a shortage of quality professionals, working for the health of imprisoned people. The aim of this study is to elaborate reasons for healthcare professionals to work in a prison environment. The main research question is: why do healthcare workers choose to work in prisons? Furthermore, our study identifies training needs in various fields. Interview data that comes from a national project carried out in Switzerland and three other relatively wealthy countries were analyzed using content analysis. One-on-one, semi structured interviews were designed and conducted with professionals working in prison context. A total of 105 interviews were carried out and for this work 83 of them were analyzed and coded into themes responding to the study aim. Most participants chose to work in prison either because of practical reasons, as many reported various forms of contact with the studied prison environment at a younger age, or because of intrinsic reasons, including among others, having the wish to change the system of healthcare in prisons. Even though the education of the participants varied greatly, a lack of specialist training was expressed by many health care professions as an important factor. This study points out the need for more specific training programs for healthcare workers in prison and provides suggestions to ameliorate the recruitment and education for future prison health care workers.

Impact of structural racism on inclusion and diversity in precision oncology: A scoping and critical review of the literature.

Inclusion and diversity in precision oncology are essential in reducing cancer disparities among racial and ethnic groups. However, present studies have favored the recruitment and participation of Whites, with limited applicability of their results to minority groups. Many reasons for their underrepresentation are downstream manifestations of structural racism. Therefore, this scoping review provides a precise mapping of recruitment and participation barriers for minorities in precision oncology that are associated with structural racism, including a critical appraisal of how disciplinary norms, paradigms, and tools used therein could inadvertently contribute to unforeseen inclusion and diversity challenges. Empirical and theoretical publications from Web of Science and PubMed were searched and analyzed to identify recruitment and participation barriers for minorities in precision oncology. In addition, using the public health critical race praxis (PHCRP) as guiding analytical framework, empirical studies were analyzed to identify unforeseen barriers resulting from simplification processes, assumptions, norms, paradigms, and tools used during the research process. One-hundred thirty-five barriers to recruitment and participation were identified or reported in included publications. They were subsequently categorized as being a manifestation of one of the following forms of racism, namely internalized, interpersonal, institutional, and structural racism. The PCHRP analysis revealed four additional factors to be considered in precision oncology studies in ensuring appropriate representation of their study populations. Future interventions aimed at reducing health disparities should focus predominantly on barriers associated with structural and institutional racism, which should then have ripple effects on other forms of racism. Importantly, the four factors identified through the PHCRP framework could further explain the lower participation rates of minorities in precision oncology and related activities. Therefore, they should be given due consideration by all stakeholders involved in the precision oncology ecosystem, from researchers and healthcare professionals to policy-makers, research ethics committees, and funders.

eHealth interventions for psychiatry in Switzerland and Russia: a comparative study.

Introduction: During the past decade, the use of digital technology to promote mental health has increased dramatically. Additionally, the consequences of the COVID-19 pandemic, such as travel restrictions and the disruption of face-to-face interactions, have led to an increase in the use of digital technologies. A wide variety of technologies have been developed, including messaging chatbots, virtual reality technologies, direct-to-consumer apps, and even technologies that are fully integrated into clinical care tools. Methods: The following qualitative study is based on the opinions of mental health specialists in both countries regarding the use of digital health technologies in psychiatry in Switzerland and Russia in 2019-2020. We investigate the state of adoption of digital technologies in the field of mental health, the meaning of such technologies, and the crucial factors in the use of such technologies in psychiatry. Results: Health care professionals in both Russia and Switzerland are well aware of these technologies. However, the use of digital technology to promote mental health has taken different paths in these two health care settings.

A national survey of Swiss paediatric oncology care providers' cross-cultural competences.

BACKGROUND AND PURPOSE: Culturally diverse countries such as Switzerland face the challenge of providing cross-cultural competent care. Cross-cultural competent care needs an understanding of a patient's cultural context in order to provide safe and effective care. Therefore, we sought to examine cross-cultural competence of Swiss paediatric oncology care providers, and to explore their perceptions of barriers to and facilitators of cross-culturally competent care. DESIGN AND SAMPLE: We conducted a cross-sectional study. The data collection period was three weeks. Providers were recruited through collaborators at the participating paediatric oncology centres. All occupational groups who are in direct contact with patients and involved in their care were eligible (e.g., physicians, nurses, social workers, occupational therapists and physiotherapists). Surveying providers online, we captured five subscales of their cross-cultural competence and their perceptions as to how to facilitate cross-culturally competent paediatric oncology care. We employed the Cross-Cultural Competence of Healthcare Professionals (CCCHP) questionnaire. Besides descriptive and inferential statistics, we performed content analysis. FINDINGS: The response rate was 73.2% (n = 183/250). Analyses revealed differences in cross-cultural competence between occupational groups of paediatric oncology providers. Overall, social workers' cross-cultural competence was higher than nurses' or occupational therapists' and physiotherapists' cross-cultural competence. Physicians' cross-cultural competence was higher than nurses (with no statistically significant difference identified between physicians, occupational therapists and physiotherapists). Furthermore, our results suggest noteworthy differences among the four main occupational groups on the five CCCHP subscales. Physicians and social workers declared more positive attitudes than nurses; occupational therapists and physiotherapists reported lower skills than the other three groups; social workers scored higher on the emotions and empathy subscale than the other three groups; physicians were more knowledgeable and aware than nurses. Most frequently mentioned barriers were: language barriers (68.5%), different culture and values (19.2%), different illness understanding (9.2%). Most frequently mentioned facilitators were: professional translators (47.2%), continuous training (20.8%), professional cultural mediators (8.8%). CONCLUSIONS/IMPLICATIONS: Trainings and interventions are widely considered a principal strategy to advance providers' cross-cultural competence. Our findings of differences in cross-cultural competence among occupational groups further underpin the need to adapt training programmes and interventions to the respective occupational group and the respective dimension(s) of cross-cultural competence. In addition, professional translators and cultural mediators should be used. Lastly, reciprocal supervision and the promotion of multidisciplinary teams is crucial to enable oncology care providers to learn from each other and this exchange could also help to reduce some of the differences between the various occupational groups.

Covid-19 and beyond: Broadening horizons about social media use in oncology. A survey study with healthcare professionals caring for youth with cancer.

Objectives: The study aimed to explore the attitudes of Swiss healthcare professionals toward the use of social media in adolescent and young adult oncology, and to examine whether the ongoing social restrictions due to COVID-19 might have altered these attitudes. Methods: This research was a survey study. The subjects were healthcare providers working in pediatric or adult oncology settings in Switzerland. 62 providers completed the survey. We performed descriptive and inferential statistical analyses. Results: While considered useful for various professional aspects (professional life 62.1%, educational purposes 72.7%, networking 83.3%, patient engagement 57.6%, clinical trial recruitment 51.5%), only a small proportion of participants actually used social media for professional reasons weekly (32.8%). Just over half considered themselves skillful in using these platforms (56.1%). Regression analysis revealed that self-assessed skillfulness with social media, the Covid-19 impact on attitudes, and the oncology setting, significantly predicted assessment of the usefulness of social media. Although, in answers to open items, institutional guidelines were deemed crucial to improve social media use, many respondents seemed unaware of their existence (50.8%). Only a minority reported an impact of Covid-19 on their attitudes towards the professional implementation of social media (25.0%). Conclusion: The global health crisis creates important challenges for young patients with cancer and their healthcare providers. In times of social restrictions, social media may be a promising tools to facilitate health information provision, connectivity, and patient care. Virtual mentorship and targeted social media training interventions might be a good way to improve familiarity with using social media and to increase awareness about existing ethical guidelines for their use.

"What's the best way to document information concerning psychiatric patients? I just don't know"-A qualitative study about recording psychiatric patients notes in the era of electronic health records.

This paper reports the results of a qualitative study regarding the main attitudes and concerns of Swiss psychiatrists related to the utility, usability and acceptability of EHR and how they address the pitfalls of sharing sensitive information with other parties. A total of 20 semi-structured interviews were carried out. Applied thematic analysis was used to identify themes with regard to participation. Three main themes were identified: 1) strengths of the use of EHR in the clinical context; 2) limitations of EHR; and 3) recommendations on preserving confidentiality in health records. The study shows variable practices of EHR use in psychiatric hospitals in Switzerland and a lack of standards on how to document sensitive information in EHR.

Perceptions of collective and other unjust punishment in Swiss prisons: a qualitative exploration.

PURPOSE: This paper aims to describe and analyse Swiss prisoners' and experts' views on collective punishment, the practice where a group is punished for one person's transgression. DESIGN/METHODOLOGY/APPROACH: A series of qualitative interviews with prisoners and stakeholders are reported following thematic analysis. FINDINGS: Despite being forbidden by the Geneva Convention and other international instruments, participants from this study expressed the view that collective punishment continues to be practiced in some form in prisons in Switzerland, violating the rights of prisoners via unjust and arbitrary decision-making, unjust rules, inequalities in prison structures and continuation of incarceration based on the behaviour of others. Families can also be both victims and vectors of collective punishment, and prolonging the detention of prisoners who would otherwise have been released because of rare high-profile cases of reoffending can also be considered a form of collective punishment. ORIGINALITY/VALUE: These significant findings suggest that collective punishment in various forms continues to be used in Swiss prisons.

Investigators' sense of failure thwarted transparency in clinical trials discontinued for poor recruitment.

BACKGROUND AND OBJECTIVE: When a randomized clinical trial (RCT) prematurely discontinues, it is essential that stakeholders do the right thing to ensure that lessons can be learnt and trust in clinical research is maintained. There is, however, a lack of evidence exploring this issue. This study aimed to examine clinical trial stakeholders' practices following trial discontinuation due to poor participant recruitment and their views on implications of such discontinuation. METHODS: Individual semi-structured qualitative interviews were conducted with 49 clinical trial stakeholders from Switzerland (n = 39), Germany (n = 9) and Canada (n = 1) between August 2015 and November 2016. RESULTS: After interviews with 49 clinical trial stakeholders (75% male presenting), it was found that stakeholders were aware of the risks of premature trial discontinuation wasting limited resources, adversely impacting scientific evidence, and having negative personal and professional implications. However, barriers continue to undermine transparency regarding trial discontinuation in practice, with it being reported that most investigators of discontinued trials are failing to notify stakeholders or publishing their results. Investigators sense of failure and associated negative emotions were identified as a key reason why investigators are not more transparent following discontinuation. CONCLUSION: The decision to notify stakeholders and publish results of a discontinued clinical trial should not rest solely on individual investigators but come from a systemic approach. However, until health research proactively requires the dissemination of results of all clinical trials, much will rest on individual investigators being motivated to do the right thing. Support programs might be helpful for investigators involved in discontinued trials and promote transparency and learning lessons.

To be or not to be in the social media arena? The perspective of healthcare providers working within adolescent and young adult oncology in Switzerland.

BACKGROUND: Given that social media is quickly penetrating clinical practice, it is essential to explore how these technologies can be used to improve patient-centered care. This is particularly important for healthcare professionals caring for adolescents and young adults (AYA), amid whom the use of social media is nearly universal and whose medical and psychosocial needs are often underestimated by the pediatric or adult oncology settings in which they are treated. OBJECTIVES: To examine the perspectives of various medical professionals on the emerging role of social media in AYA oncology. METHODS: Three focus groups were performed with Swiss healthcare professionals involved in the care of AYA patients with cancer. The focus groups were analyzed using thematic coding. RESULTS: Healthcare professionals caring for AYA cancer patients in Switzerland are reluctant to step into the social media sphere because they find it difficult to navigate professional boundaries in an unfamiliar space where different contexts collapse. Nurses and younger healthcare professionals who tend to have a more intimate relationship with AYA, often lack virtual mentorship to know how to maintain online professionalism. Adolescents and young adults cancer-related social media presence was unknown to our participants which resulted in missed occasions to inform, educate and care for this often underserved population of cancer patients. CONCLUSIONS: More practical guidance is needed to help healthcare professionals with how to integrate social media into clinical practice. Setting up fruitful collaborations between medical institutions and existing AYA support groups online might be the best way forward.

Prison Unhealthy Lifestyle and Poor Mental Health of Older Persons-A Qualitative Study.

Background: Mental healthcare and lifestyle habits in prison, especially for older individuals, has been shown to be suboptimal. Most psychiatric conditions left untreated worsen food choices, physical inactivity, and substance abuse. In turn, bad habits lead to poorer mental health. Methods: To comprehensively illustrate this downward spiraling, we completed a thorough analysis of data obtained through semi-structured qualitative interviews. There were 50 interviews of aging incarcerated people included in this article. They were analyzed following a classical six-stepped thematic analysis. Results: According to our participants, sports are not well-adapted to aging individuals, nor to people with medical conditions. Prison is even more unadapted for those who both are aging and have medical conditions. Also, food served is less than optimal. According to our interviews, the older imprisoned individual often does not have access to food adapted to his or her medical conditions. Sport is maladapted for older incarcerated individuals and mostly tailored for younger ones. Finally, boredom and lack of responsibility hinder change toward a better lifestyle for older adults in prison. Conclusion: Our paper shows why prison environmental modifications are needed to help older adults with their lifestyle habits. It also exposes an original way to see the relationship between mental health and lifestyle habits.

Exploring reasons for recruitment failure in clinical trials: a qualitative study with clinical trial stakeholders in Switzerland, Germany, and Canada.

BACKGROUND: Poor participant recruitment is the most frequent reason for premature discontinuation of randomized clinical trials (RCTs), particularly if they are investigator-initiated. The aims of this qualitative study were to investigate (1) the views of clinical trial stakeholders from three different countries regarding reasons for recruitment failure in RCTs and (2) how these compare and contrast with the causes identified in a previous systematic review of RCT publications. METHODS: From August 2015 to November 2016, we conducted 49 semi-structured interviews with a purposive sample of clinical trial stakeholders. This included investigators based in Germany (n = 9), Switzerland (n = 6) and Canada (n = 1) with personal experience of a discontinued RCT and 33 other stakeholders (e.g., representatives of ethics committees, clinical trial units, pharmaceutical industry) in Switzerland. Individual semi-structured qualitative interviews were conducted and analyzed using thematic analysis. RESULTS: Interviewees identified a total of 29 different reasons for recruitment failure. Overoptimistic recruitment estimates, too narrow eligibility criteria, lack of engagement of recruiters/trial team, lack of competence/training/experience of recruiters, insufficient initial funding, and high burden for trial participants were mentioned most frequently. The interview findings largely confirm the previous systematic review on published reasons for recruitment failure. However, eight new reasons for recruitment failure were identified in the interviews, which led to the checklist of reasons for recruitment failure being revised and a new category describing research environment-related factors being added. CONCLUSIONS: This study highlights the diversity of often interlinked reasons for recruitment failure in RCTs. Integrating the findings of this interview study with a previous systematic review of RCT publications led to a comprehensive, structured checklist of empirically-informed reasons for recruitment failure. The checklist may be useful to guide further research on interventions to improve participant recruitment in RCTs and helpful for trial investigators, research ethics committees, and funding agencies when assessing trial feasibility with respect to recruitment.

Challenges of paediatric palliative care in Romania: a focus groups study.

BACKGROUND: The availability of palliative care facilities for children vary considerably among the European member states. In Romania, a country where health expenditure is among the lowest in Europe, palliative care has been mainly provided by charitable organizations. Despite the high number of children needing palliative care, there is scant literature and research available on paediatric palliative care in Romania. The study explores the viewpoints of various paediatric oncology providers with regard to paediatric palliative care provision in Romania. METHODS: Four mixed focus groups were conducted at four university-affiliated paediatric oncology centres located in three distinct Romanian regions (Bucuresti-llfov, Nord-Est and Nord-Vest). The focus groups were analyzed using thematic coding. RESULTS: For many healthcare professionals, emotional burden inherent to the profession; unhealthy work-life balance and understaffing were among the biggest barriers to the successful integration of pediatric palliative care. The lack of staff was attributed to a shortage of financial resources, and to the persisting cultural stigma surrounding palliative care and oncology. Also political turmoil was identified as an important obstacle to palliative care implementation. CONCLUSION: Significant barriers persist limiting the broader implementation of pediatric palliative care in Romania. In order to render palliative care in pediatric oncology more sustainable, more attention should be paid to the mental health care of healthcare professionals working in this field, to the development of mobile palliative care services and to the emigration of skilled medical staff.