A literature review of 98 articles concerning clinical pain research in newborn infants was conducted to evaluate how researchers report the ethical issues related to their studies and how journals guide this reporting. The articles were published in 49 different scientific journals. The ethical issues most often mentioned were parental informed consent (94%) and ethical review approval (87%). In 75% of the studies the infants suffered pain during the research when placebo, no treatment or otherwise inadequate pain management was applied. (...) Discussion about benefits versus harm to research participants was lacking. A quarter of the journals did not have any ethical guidelines for submitted manuscripts. We conclude that ethical considerations did not play a significant role in the articles studied. Missing and superficial guidelines enable authors to offer studies with fragile research ethics. (shrink)

Background Shared responsibility is an essential part of family-centred care and it characterizes the relationship between parents and healthcare professionals. Despite this, little is known about their shared responsibility for decision-making in neonatal intensive care units. Aim The aim of this scoping review was to identify previous studies on the subject and to summarize the knowledge that has been published so far. Method The review was conducted using electronic searches in the CINAHL, PubMed, Scopus and PsycINFO databases and manual searches (...) of the reference lists of the selected papers. The searches were limited to peer-reviewed papers that had been published in English from 2010 to September 2021. The data were selected based on inclusion and exclusion criteria and the findings were inductively summarized. We identified eight papers that met the inclusion criteria. Ethical considerations: The scoping review was conducted according to good scientific practice by respecting authorship and reporting the study processes accurately, honestly and transparently. Results The results showed that shared responsibility for decision-making was based on the parents’ intentions, but the degree to which they were willing to take responsibility varied. The facilitating and inhibiting factors for shared responsibility for decision-making were related to the communication between parents and professionals. The impact was related to the parents’ emotions. Conclusion It is essential that parents and professionals negotiate how both parties will contribute to their shared responsibility for decision-making. This will enable them to reach a mutual understanding of what is in the infants’ best interests and to mitigate the emotional burden of decisions in neonatal intensive care units. More research is needed to clarify the concept of shared responsibility for decision-making in this intensive care context. (shrink)

Background Maternal mental health during the peripartum period is critically important to the wellbeing of mothers and their infants. Numerous studies and clinical trials have focused on various aspects of interventions and treatments for perinatal mental health from the perspective of researchers and medical health professionals. However, less is known about women’s experiences of participating in perinatal mental health research, and the ethical issues that arise. Aim To systematically review the literature on the ethical issues that emerge from pregnant and/or (...) postpartum women’s experiences of taking part in perinatal mental health-related research. Methods Systematic review of nine bibliographic databases, from inception to July 2021. Qualitative, quantitative and mixed method studies were included if they reported on ethical issues experienced by perinatal women. Research ethical issues encompassed any issue relating to women’s experiences of being offered study information, recruitment, consent, retention and respect for autonomy. Titles, abstracts and full text screening, appraisal of the methodological quality of included studies, and data extraction, were conducted independently by two reviewers. Ethical considerations Ethical approval was not required for this systematic review. Findings A total of 9830 unique citations was retrieved. Six studies met the inclusion criteria. Studies were clinically and methodologically heterogenous, and only one was purposively designed to explore women’s experiences. The key finding was the establishment of trust between the researcher and participant in all stages of the research process. Findings are presented according to recruitment and consent processes, participation and retention, and study follow-up and completion. Conclusion The establishment of trust between the researcher and perinatal women leads to a dynamic with research ethical implications relevant to all stages of perinatal mental health-related research. Further research on the research ethical issues experienced by perinatal women is required because of the limited literature. (shrink)

SUSANNE UUSITALO,ANNA AXELIN | : Infants born to opioid-dependent women are typically admitted to neonatal intensive-care units for management of neonatal abstinence syndrome, and their treatment requires medical decision making. It is not only the infants’ vulnerability, in terms of their incompetence and medical condition, that is present in those circumstances, but also the mothers’ situational vulnerability, which arises with the possibility of their engagement in medical decision making regarding their infants. Vulnerability is a concept that has often, if not (...) always, been traced back to individuals. In this paper, we suggest that in some cases evaluations and attributions of vulnerability to either individuals or populations fall short of capturing all aspects of vulnerability. We ask whether this individual-based evaluation is sufficient for identifying all the vulnerabilities arising in the situation. Moreover, we suggest that the “unit” of vulnerability attribution, typically a person who is a likely target of harm and/or moral violations, should not simply be reduced to the individual. Rather, the unit should in some cases be seen as constituted by an entity that is interpersonal in nature. The kind of real vulnerability that we identify in this paper is inherently embedded in a dyadic relationship, and notions of vulnerability that decompose social relations into individuals run the risk of missing the vulnerability in question. We elaborate this kind vulnerability by discussing of role of opioid-dependent mothers in decision making about their infants’ treatment. | : Les nourrissons nés de femmes dépendantes aux opioïdes sont généralement admis dans des unités de soins intensifs néonatals pour la prise en charge du syndrome d’abstinence néonatale, et leur traitement nécessite une prise de décision médicale. Ce n’est pas seulement la vulnérabilité des nourrissons, en termes d’incompétence et de dépendance médicale, qui est présente dans ces circonstances, mais aussi la vulnérabilité situationnelle des mères, qui découle de la possibilité de leur participation à la prise de décision médicale concernant leurs enfants. La vulnérabilité est un concept qui a souvent, sinon toujours été relié à des individus. Dans cet article, nous suggérons que, dans certains cas, les évaluations et les attributions de vulnérabilité aux individus ou aux populations ne permettent pas de saisir tous les aspects de la vulnérabilité. Nous demandons si cette évaluation individuelle est suffisante pour identifier toutes les vulnérabilités qui apparaissent dans la situation. De plus, nous suggérons que l’« unité » d’attribution de la vulnérabilité, généralement une personne qui est une cible probable de dommages ou de violations morales, ne devrait pas simplement être réduite à l’individu. Au contraire, l’unité devrait dans certains cas être considérée comme une entité de nature interpersonnelle. Le type de vulnérabilité réelle que nous identifions dans cet article est intrinsèquement intégré dans une relation dyadique, et les notions de vulnérabilité qui décomposent les relations sociales en individus risquent de manquer la vulnérabilité en question. Nous développons ce type de vulnérabilité en discutant du rôle des mères dépendantes aux opioïdes dans la prise de décision concernant le traitement de leurs enfants. (shrink)