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OBJECTIVE To explore the concepts and strategies parents employ when considering maternal-fetal surgery (MFS) as an option for the management of spina bifida (SB) in their fetus, and how this determines the acceptability of the intervention. METHODS A two-centre interview study enrolling parents whose fetuses with SB were eligible for MFS. To assess differences in acceptability, parents opting for MFS (n = 24) were interviewed at three different moments in time: prior to the intervention, directly after the intervention and 3-6 months after birth. Parents opting for termination of pregnancy (n = 5) were interviewed only once. Themes were identified and organised in line with the framework of acceptability. RESULTS To parents opting for MFS, the intervention was perceived as an opportunity that needed to be taken. Feelings of parental responsibility drove them to do anything in their power to improve their future child's situation. Expectations seemed to be realistic yet were driven by hope for the best outcome. None expressed decisional regret at any stage, despite substantial impact and, at times, disappointing outcomes. For the small group of participants, who decided to opt for termination of pregnancy (TOP), MFS was not perceived as an intervention that substantially could improve the quality of their future child's life. CONCLUSION Prospective parents opting for MFS were driven by their feelings of parental responsibility. They recognise the fetus as their future child and value information and care focusing on optimising the child's future health. In the small group of parents opting for TOP, MFS was felt to offer insufficient certainty of substantial improvement in quality of life and the perceived severe impact of SB drove their decision to end the pregnancy.

The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed. Two distinct communicative approaches to decision-making were used by doctors: ‘making recommendations’ and ‘providing options’. Different trajectories for parental involvement in decision-making were afforded by each design, as well as differences in terms of the alignments, or conflicts, between doctors and parents. ‘Making recommendations’ led to misalignment and reduced opportunities for questions and collaboration; ‘providing options’ led to an aligned approach with opportunities for questions and fuller participation in the decision-making process. The findings are discussed in the context of clinical uncertainty, moral responsibility and the implications for medical communication training and guidance. A Virtual Abstract of this paper can be accessed at: https://www.youtube.com/watch?v=MyuymxDNupk&feature=youtu.be

AIM: The paper is a report of a study of the attitudes of neonatal nurses towards extremely preterm infants. BACKGROUND: Alongside advancing survival at extremely preterm gestational ages, ethical debates concerning the provision of invasive care have proliferated in light of the high morbidity. Despite nurses being the healthcare professionals who work closest with the infant and their family, their potential influence is usually ignored when determining how parents come to decisions about future care for their extremely premature infant. METHODS: A Q methodology was employed to explore the attitudes of neonatal nurses towards caring for extremely preterm infants. Data were collected between 2007 and 2008 and analysed using PQMethod and Card Content Analysis. RESULTS: Thirty-six nurses from six neonatal units in the United Kingdom participated. Although there was consensus around the professional role of the nurse, when faced with the complexities of neonatal nursing three distinguishing factors emerged: the importance of parental choice in decision-making, the belief that technology should be used to assess response to treatment, and the belief that healthcare professionals should undertake difficult decisions. CONCLUSION: Neonatal nurses report unexpected difficulties in upholding their professionally defined role through highly complex and ever varied decision-making processes. Recognition of individual attitudes to the care of extremely preterm infants and the role of the family in the face of difficult decisions should facilitate more open communication between the nurse and the parents and improve the experience of both the nurse and the family during these emotional situations.

This paper describes the process for and safety/feasibility of adapting the Beardslee Preventive Intervention Program for Depression for use with predominantly low income, Latino families. Utilizing a Stage I model for protocol development, the adaptation involved literature review, focus groups, pilot testing of the adapted manual, and open trial of the adapted intervention with 9 families experiencing maternal depression. Adaptations included conducting the intervention in either Spanish or English, expanding the intervention to include the contextual experience of Latino families in the United States with special attention to cultural metaphors, and using a strength-based, family-centered approach. The families completed preintervention measures for maternal depression, child behavioral difficulties, global functioning, life stresses, and an interview that included questions about acculturative stressors, resiliency, and family awareness of parental depression. The postintervention interview focused on satisfaction, distress, benefits of the adapted intervention, and therapeutic alliance. The results revealed that the adaptation was nonstressful, perceived as helpful by family members, had effects that seem to be similar to the original intervention, and the preventionists could maintain fidelity to the revised manual. The therapeutic alliance with the preventionists was experienced as quite positive by the mothers. A case example illustrates how the intervention was adapted.