OBJECTIVES: To identify preferences of the Swedish public regarding antibiotic treatment characteristics and the relative weight of antibiotic resistance in their treatment choices.

METHODS: A questionnaire including a discrete choice experiment questionnaire was answered by 378 Swedish participants. Preferences of the general public regarding five treatment characteristics (i.e., attributes) were measured: Contribution to antibiotic resistance, Cost, Side effects, Failure rate, and Treatment duration. Latent class analysis models were used to determine attribute-level estimates and the heterogeneity in preferences. Relative importance of the attributes and willingness to pay for antibiotics with a lower contribution to antibiotic resistance were calculated from the estimates.

RESULTS: All attributes influenced participants' preferences for antibiotic treatment. For the majority of participants 'Contribution to antibiotic resistance' was the most important attribute. Younger respondents found contributing to antibiotic resistance relatively more important in their choice of antibiotic treatments. Choices of respondents with lower numeracy, higher health literacy and financial vulnerability were influenced more by the cost of the antibiotic treatment. Older respondents with lower financial vulnerability and health literacy, and higher numeracy found side effects to be most important.

CONCLUSIONS: All attributes can be considered as potential drivers of lay people's use of antibiotics. Findings also suggest that the behaviour of lay people may be influenced by concerns over the rise of antibiotic resistance. Therefore, stressing individual responsibility for AR in clinical and societal communication has a potential to have an impact on personal decision making.

Due to the alarming rise of antibiotic resistance, medically unwarranted use of antibiotics has assumed new moral significance. In this paper, a thematic content analysis of focus group discussions was conducted to explore lay people’s views on the moral challenges posed by antibiotic resistance. The most important finding is that lay people are morally sensitive to the problems entailed by antibiotic resistance. Participants saw the decreasing availability of effective antibiotics as a problem of justice. This involves individual as well as collective moral responsibility. Yet, holding agents responsible for their use of antibiotics involves varying degrees of demandingness. In our discussion, these findings are related to the contemporary ethical debate on antibiotic resistance and two proposals for the preservation of antibiotic effectiveness are compared to and evaluated against participants’ views.

Var tredje person i Sverige kommer under sin livstid att drabbas av cancer, vilket innebär att cancer är en folksjukdom. Stora summor pengar läggs ner på cancerforskning. Många säger att det inte alls är en omöjlig uppgift att besegra cancer, medan andra säger att det kommer att bli mycket svårt. Säkert är dock att om forskningen ska gå framåt krävs mycket pengar och hängivna forskare. Men inte bara det. En grundförutsättning för att vi ska kunna få fram nya eller bättre cancerbehandlingar är att nya substanser testas på patienter i läkemedelsstudier, så kallade kliniska prövningar. Om inte patienter vill delta i medicinsk forskning kommer inte cancerforskningen att lyckas. Det är därför viktigt att undersöka hur patienter ser på deltagande i läkemedelsforskning. Trots att många cancerpatienter i Sverige deltar i läkemedelsstudier finns det väldigt lite forskning om varför de väljer att delta, om de förstått informationen de fått och hur de upplever sitt deltagande.

Patienter som är med i läkemedelsstudier får inte bättre medicinsk behandling än andra patienter. Det visar en ny studie ledd från Uppsala universitet som nu publiceras i BMC Cancer och som därmed bekräftar resultaten från en studie från 2004.

Patients increasingly search for online information about clinical trials. Little is known about the quality and readability of the information in these databases. Therefore, the aim of this study was to assess the quality and readability of online information available to the public on phase I clinical cancer trials in Sweden, Denmark and Norway. A qualitative content analysis was made of 19 online trial descriptions from three public websites in Sweden, Denmark and Norway, and the readability of the documents was tested. Both the quality of the content and the readability scores were best for the Danish information. The Swedish texts were very short and were the least readable. Overall, the quality of the information was highly variable and nearly all the documents were misleading in part. Furthermore, the descriptions provided almost no information about possible adverse effects or disadvantages of study participation. This study highlights a communication problem and proposes new ways of presenting studies that are less suggestive of positive outcomes, arguing that we should be more careful to include information about adverse effects, and that the use of simple measures like readability testing can be useful as an indicator of text quality.

We do not know how much clinical physicians carrying out clinical trials in oncology and haematology struggle with ethical concerns. To our knowledge, no empirical research exists on these questions in a Nordic context. Therefore, this study aims to learn what kinds of ethical challenges physicians in Sweden, Denmark and Finland (n = 29) face when caring for patients in clinical trials; and what strategies, if any, they have developed to deal with them. The main findings were that clinical cancer trials pose ethical challenges related to autonomy issues, unreasonable hope for benefits and the therapeutic misconception. Nevertheless, some physicians expressed that struggling with such challenges was not of great concern. This conveys a culture of hope where health care professionals and patients uphold hope and mutually support belief in clinical trials. This culture being implicit, physicians need opportunities to deliberately reflect over the characteristics that should constitute this culture.

Det är uppseendeväckande att i Sverige rapporteras resultat ytterst sällan, skriver Tove Godskesen och Stefan Eriksson.

Senast tolv månader efter att en klinisk prövning avslutats ska resultatet redovisas i den europeiska prövningsdatabasen Eudra CT. Forskning visar nu att rapporteringen sköts dåligt. Sverige hamnar långt ned på listan över de EU-länder som rapporterar forskningsresultat. En snar förbättring krävs.

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.

BACKGROUND: In cancer, phase 1 clinical trials on new drugs mostly involve patients with advanced disease that is unresponsive to standard therapy. The purpose of this study was to explore the difficult ethical problems related to patient information and motives for participation in such trials.

METHOD: A descriptive and explorative qualitative design was used. Fourteen cancer patients from three different phase 1 trials in end-stage cancer were interviewed. The interviews were analysed using qualitative content analysis.

RESULTS: The patients expressed unrealistic expectations of therapeutic benefit and inadequate understanding of the trials' purpose, so-called therapeutic misconception. However, they reported a positive attitude towards participation. Thus, the patients valued the close and unique medical and psychological attention they received by participating. Participation also made them feel unique and notable.

CONCLUSIONS: Patients with end-stage cancer participating in phase 1 clinical trials are unaware of the very small potential for treatment benefit and the risk of harm. Trial participation may offer hope and social-emotional support and a strategy for coping with the emotional stress associated with advanced cancer and may, consequently, improve emotional well-being.

This study investigated the kinds of ethical challenges experienced by nurses in oncology and hematology when nursing care and research overlap in clinical trials, and how the nurses handle such challenges. Individual interviews with 39 nurses from Sweden, Denmark, and Finland indicated that all nurses were positive about research, considering it essential for developing the best care. Ethical challenges exist, however; the most difficult were associated with the end-of-life patients, no longer responsive to standard therapy, who eagerly volunteer for cutting-edge drug trials in the hope of gaining therapeutic benefit. Many nurses lacked systematic strategies for addressing such challenges but found support from their nursing colleagues and relied on the research protocols to guide them.

Background: Many frail older persons who die in Swedish nursing homes need assisted bodily care. They must surrender their bodies to the authority of assistant nurses, which may affect their autonomy, and dignity of identity. While assistant nurses claim to support older persons’ wishes, older persons claim having exposedness to assistant nurses’ routines. The provider-receiverin congruence revealed here warrants investigation.

Aim: To describe the elements of assisted bodily care, as performed in a nursing home.

Research design: Data were collected through thirty-nine observations of assisted bodily care, analyzed with qualitative content analysis.

Participants and research context: Seventeen older persons and twenty-two assistant nurses from a Swedish nursing home.

Ethical considerations: The research was conducted in line with the Declaration of Helsinki,further approved by the regional ethics committee.

Findings: Findings show, that assisted bodily care consists of assistant nurses’ practical work, performed at a high tempo. Still, assistant nurses attempt to adapt this work to older persons’wishes for self-determination, taking into account their day-to-day state of health. In spite of time pressure and occasional interruptions, there is room for consideration and affection in assisted bodily care.

Discussion: Assistant nurses try to promote older persons’ dignity of identity, but sometimes fail, possibly due to lack of time. On the contrary, they seem to know older persons well enough to adapt assisted bodily care according to their preferences and support self-determination. This indicates that openness to older persons’ life-worlds may be more important than the amount of time available.

Conclusions: Nursing home contexts might benefit from adopting a person-centered palliative care perspective, highlighting the value of relationships and shared decision-making. If so, older persons and assisted nurses could prepare agreement on practices and goals in assisted bodily care beforehand. Such routines may be time-saving and beneficial to all.

Aim: To examine the hypothesis that knowledge about physician-assisted suicide (PAS) and euthanasia is associated with a more restrictive attitude towards PAS.

Design: A questionnaire about attitudes towards PAS, including prioritisation of arguments pro and contra, was sent to Swedish veterinary surgeons. The results were compared with those from similar surveys of attitudes among the general public and physicians.

Participants: All veterinary surgeons who were members of the Swedish Veterinary Association and had provided an email address (n=2421).

Main outcome measures: Similarities or differences in response pattern between veterinary surgeons, physicians and the general public.

Results: The response pattern among veterinary surgeons and the general public was almost similar in all relevant aspects. Of the veterinarians 75% (95% CI 72% to 78%) were in favour of PAS, compared with 73% (95% CI 69% to 77%) among the general public. Only 10% (95% CI 5% to 15%) of the veterinary surgeons were against PAS, compared with 12% (95% CI 5% to 19%) among the general public. Finally, 15% (95% CI 10% to 21%) of veterinarians were undecided, compared with 15% (95% CI 8% to 22%) among the general public. Physicians had a more restrictive attitude to PAS than the general public.

Conclusions: Since veterinary surgeons have frequent practical experience of euthanasia in animals, they do have knowledge about what euthanasia really is. Veterinary surgeons and the general public had an almost similar response pattern. Accordingly it seems difficult to maintain that knowledge about euthanasia is unambiguously associated with a restrictive attitude towards PAS.

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.

This chapter considers the rationale for the introduction of the quality-of-life concept. Several factors have contributed to the ideological change. One of these factors is of course the technological development of medicine. Another crucial factor behind the medical discussion about quality of life was the anthropology adopted in much modern medicine. If one's life as a whole is characterized by the fact that one's most important goals are fulfilled or are in the process of becoming fulfilled, then this life is–with great probability–a life of great happiness. In public health and health care there is not only the ethical rule whereby staff shall seek to achieve the general objectives of care, health and health-related quality of life. Staff should of course show general compassion and attempt to reduce a person's suffering even if this has nothing directly to do with medicine or, in the strictest sense, nursing.

Background Research shows that undocumented migrants have difficulties in accessing healthcare. Act 2013:407 came into force in 2013 and entitled undocumented migrants to healthcare that cannot be deferred. To date, studies about undocumented migrants’ access to care in Sweden and the impact of Act 2013:407 are sparse. Hence, the aim of this study was to describe professionals’ experiences of access to healthcare for undocumented migrants in Sweden and the impact of Act 2013:407.

Methods A qualitative design with semi-structured interviews was employed. Nine interviews were carried out in 2015 with nurses at two NGO healthcare centres for undocumented migrants – and an additional seven interviews in 2022 with staff at an NGO healthcare centre for undocumented migrants and personnel at a regional health and medical care administration. Interpretive description was used for the analyses.

Ethical considerations Permission to carry out the study was obtained from managers at the participating NGOs and the regional health and medical care administration. Participants received verbal and written information about the study, and informed consent was obtained from all participants.

Findings Six categories emerged from the analysis: Changes since the Act was introduced, General problems with healthcare access, Care for undocumented migrants – politics and social economy, Lack of knowledge, ‘Healthcare that cannot be deferred’ and Being an undocumented migrant.

Conclusion Undocumented migrants’ social needs are as great as their needs for healthcare. Healthcare staff are burdened with healthcare cost considerations which affect their judgement of care provision and prioritization. Healthcare staff attitudes towards undocumented migrants affect their access to healthcare. Undocumented migrants in need of healthcare are especially vulnerable due to their legal status, being ill and the fear of being reported and deported. To assure undocumented migrants’ access to healthcare and maintain healthcare ethics, the only possible solution is to provide healthcare based on needs.

Dignity, usually considered an essential ethical value in healthcare, is a relatively complex, multifaceted concept. However, healthcare professionals often have only a vague idea of what it means to respect dignity when providing care, especially for persons with impaired autonomy. This article focuses on two concepts of dignity, human dignity and dignity of identity, and aims to analyse how these concepts can be applied in the care for persons with impaired autonomy and in furthering the practice of respect and protection from harm. Three vignettes were designed to illustrate typical caring situations involving patients with mild to severely impaired autonomy, including patients with cognitive impairments. In situations like these, there is a risk of the patient’s dignity being disrespected and violated. The vignettes were then analysed with respect to the two concepts of dignity to find out whether this approach can illuminate what is at stake in these situations and to provide an understanding of which measures could safeguard the dignity of these patients. The analysis showed that there are profound ethical challenges in the daily care of persons with impaired autonomy. We suggest that these two concepts of human dignity could help guide healthcare professionals to develop practical skills in person-centred, ethically grounded care, where the patient’s wishes and needs are the starting point

International literature shows ethnic minorities and immigrants being underrepresented in clinical trials. This compromises the generalizability of the results and distributes the benefits of participating unequally. This problem is unexplored in Sweden. Therefore, this explorative qualitative study examines the barriers Swedish physicians encounter, the strategies they use to prevent and circumvent the issue, and the attitudes and perceptions they have. We found that physicians do encounter ethnic minority patients that they exclude from participation in clinical cancer trials. This is primarily because of language barriers preventing patients from understanding participant information. Conscious strategies to counter this are lacking. A lack of translated material and strict inclusion criteria are two obstacles that can be overcome. The general conception is that this issue is uncommon and unimportant from a medical perspective, but questions of fairness have been raised. For such reasons, further discussion and research on this issue are needed.