Community, Hope, and Resilience: Parental Perspectives on Peer Support in Neonatology.

OBJECTIVES: To describe the perspective of parents who participated in peer-to-peer support meetings with parents of children in a neonatal intensive care unit (NICU) and veteran resource parents with previous NICU experience. STUDY DESIGN: During a longitudinal evaluation in a tertiary care NICU, participating parents were asked to evaluate meetings; with open-ended questions, they were asked about their perspectives. Results were analyzed using mixed methods. RESULTS: Forty-five NICU parents participated over a 10-week study period. They were followed longitudinally after attending at least 1 of the 10 meetings offered; 95% of parents (43 of 45) reported that the meeting was useful to them and gave an overall evaluation of 8.7 out of 10 (average). For each meeting, all the subjects on the checklist of the moderators (veteran resource parents) were discussed with new parents. When describing why and how the meetings were useful to them in their answers to open-ended questions, NICU parents reported 3 major themes: (1) decreasing isolation and being a community (73%), (2) hope and resilience (63%), and (3) getting practical "parent" information (32%). Sharing stories with parents who also had experienced loss, sadness, and grief, NICU parents trusted that it was possible to adapt and thrive. The meetings normalized parents' emotions (92%), decreased negative emotions (eg, anger, sadness, guilt), empowered them in their parental role, and helped them communicate with loved ones and providers. CONCLUSIONS: Peer support meetings are a unique and useful means to support parents. Future investigations will investigate whether and how this type of intervention can improve clinical outcomes.

Trust and consent: a prospective study on parents' perspective during a neonatal trial.

OBJECTIVE: This study aimed to describe how parents and physicians experienced the informed consent interview and to investigate the aspects of the relationship that influenced parents' decision during the consent process for a randomised clinical trial in a tertiary neonatal intensive care unit (NICU). The secondary objective was to describe the perspectives of parents and physicians in the specific situation of prenatal informed consent. SETTING: Single centre study in NICU of the Centre Hospitalier Intercommunal de Créteil, France, using a convenience period from February to May 2016. DESIGN: Ancillary study to a randomised clinical trial: Prettineo. Records of interviews for consent. POPULATION: parents and physicians. Mixed study including qualitative and quantitative interview data about participants' recall and feelings about the consent process. Interviews were reviewed using thematic discourse analysis. RESULTS: Parents' recall and understanding of the study's main goal and design was good. Parents and physicians had a positive experience, and trust was one of the main reasons for parents to consent. Misunderstanding (bad comprehension) was the main reason for refusal.Before birth, three situations can compromise parents' consent: the mother already consented to participate in other studies, the absence of the father during the interview and the feeling that the baby's birth is not an imminent possibility. CONCLUSIONS: Confronting parents and physicians' perspectives in research can help us reach answers to sensitive issues such as content and timing of information. Each different types of study raises different ethical dilemmas for consent that might be discussed in a more individual way.

Peer support groups for families in Neonatology: Why and how to get started?

AIM: To describe the development of peer-to-peer support meetings between parents of children in neonatal intensive care unit (NICU) and veteran resource parents who had a previous NICU experience. METHODS: The study had two steps: a needs assessment and a feasibility pilot study. Parental perspectives were investigated using mixed methods. RESULTS: One hundred and fifty-three parents were participated. NICU parents (89%) wished to meet resource parents to discuss: their parental role, normalising their experience and emotions, adapting to their new reality, control, guilt, trust and coping. Practical aspects of the meetings were tested/finalised. Resource parent moderators reported that the presence of more than one moderator per meeting was essential. A checklist of topics to discuss was developed. Having a diversity of moderators (fathers, diagnoses other than prematurity, for example) was judged important. The name of the meeting had an impact on attendance: there were less participants when the word "support" was used. The best location (central, parents' kitchen) and optimal time/duration of meetings, selection of parent moderators and compensation were also determined. CONCLUSION: Peer support meetings moderated by resource parents provide a unique and useful means to support NICU parents. Future investigations will explore whether these meetings will improve clinical outcomes.

Beyond a Seat at the Table: The Added Value of Family Stakeholders to Improve Care, Research, and Education in Neonatology.

OBJECTIVES: To analyze activities involving veteran resource parents and patients in a family partnership program; their perspectives were also explored. STUDY DESIGN: The multiple roles assumed by family stakeholders in neonatal initiatives were reviewed. Quality control questionnaires were distributed to resource parents and patients and providers who worked with them. Mixed methods were used to analyze results. RESULTS: Thirty resource parents and patients were involved in a total of 653 activities related to clinical care (n = 413), teaching (n = 31), and research (n = 209); 7 initiatives were described to illustrate the positive impact of family stakeholders on clinical care, teaching, and/or research. Resource parents and patients had different degrees and intensity of involvement: all were involved in low-risk initiatives and 9 in more complex activities. In the questionnaire, family stakeholders all described positive impacts associated with their participation and benefits to themselves, such as meaning making. Three resource parents reported traumatic memories that occurred during medical simulations. The majority of providers report that resource parents and patients improved their projects, but some also report this new collaboration is complex. CONCLUSIONS: Although stakeholder participation increasingly is recommended, practical knowledge and the impact of their participation is scarce. Having several resource parents and patients bring their contributions may be more valuable than a few "expert stakeholders." Recruiting and orienting resource parents and patients toward different types of activities should take into account the complexity and risks of the tasks. Family stakeholders are appreciated and have a positive impact on projects in which they are involved.

Assessment of atropine-sufentanil-atracurium anaesthesia for endotracheal intubation: an observational study in very premature infants.

BACKGROUND: Premedication before neonatal intubation is heterogeneous and contentious. The combination of a short acting, rapid onset opioid with a muscle relaxant is considered suitable by many experts. The purpose of this study was to describe the tolerance and conditions of intubation following anaesthesia with atropine, sufentanil and atracurium in very premature infants. METHODS: Monocentric, prospective observational study in premature infants born before 32 weeks of gestational age, hospitalised in the NICU and requiring semi-urgent or elective intubation. Intubation conditions, heart rate, pulse oxymetry (SpO2), arterial blood pressure and transcutaneous PCO2 (TcPCO2) were collected in real time during 30 minutes following the first drug injection. Repeated physiological measurements were analysed using mixed linear models. RESULTS: Thirty five intubations were performed in 24 infants with a median post conceptional age of 27.6 weeks and a median weight of 850 g at the time of intubation. The first attempt was successful in 74% and was similar for junior (75%) and senior (74%) operators. The operator rated conditions as "excellent" or "good" in 94% of intubations. A persistent increase in TcPCO2 as compared to baseline was observed whereas other vital parameters showed no significant variations 5, 10, 15 and 30 minutes after the first drug injection. Eighteen (51%) desaturations (SpO2 less than or equal to 80% for more than 60 seconds) and 2 (6%) bradycardia (heart rate less than 100 bpm for more than 60 seconds) were observed. CONCLUSION: This drug combination offers satisfactory success rate for first attempt and intubation conditions for the operator without any significant change in heart rate and blood pressure for the patient. However it is associated with frequent desaturations and a possible persistent hypercapnia. SpO2 and PCO2 can be significantly modified during neonatal intubation and should be cautiously followed in this high-risk population.

Implementation Outcomes and Challenges of Partnerships between Resource Parents and Parents with Sick Infants in Intensive Neonatal Care Units: A Scoping Review.

Parents with a sick child in a neonatal intensive care unit (NICU) usually experience stress, anxiety, and vulnerability. These precarious feelings can affect early parent-child interactions and have consequences for the child's neurodevelopment. Parents who have had a sick child in an NICU (veteran parents) can offer helpful interventions for these vulnerable families. This article is a scoping review of parental interventions used with the families of NICU infants, and an overview of French perspectives. Two independent reviewers studied the scientific literature published in English between 2001 to 2021 using Covidence software. The databases used were MEDLINE, ISI Web of Science, the Cochrane Database, and Google Scholar. Themes were identified from the articles' results using an open coding approach. The data are presented in a narrative format. Ten articles were included, and four major themes addressed: (1) description of activities, (2) recommendations, (3) impact, and (4) barriers (resulting from recruitment, training, remuneration, and organization). Activities were very diverse, and a step-by-step implementation was recommended by all authors. Peer-support interventions might be a potential resource for those anxious parents and improve their NICU experiences. These challenges are described by SOS Préma in France. This article brings together recent studies on partnership in the NICU. It is an innovative topic in neonatology with vast issues to explore.

Current attitudes and beliefs toward perinatal care orientation before 25 weeks of gestation: The French perspective in 2020.

The survival rate of infants born before 25 weeks of gestational age in France is extremely low compared with that of many other countries: 0%, 1%, and 31% at 22, 23, and 24 weeks' in the last national cohort study. A non-optimal regionalization and variations in practice are prevalent. Some parents in social media and support groups have reported feeling lost and confused with mixed messages leading to lack of trust. These data kindled a major debate in France around perinatal management leading to an investigation exploring neonatologists' perspectives and ways to improve care. The majority (81%) of the responding neonatologists reported more active care and higher survival rates than in 2011, although others continued preferring delivery room comfort care and limited NICU treatment at or before 24 weeks. The desire to improve was an overarching theme in all the respondents' answers to open-ended questions. Barriers to active care included an absence of expertise and of benchmarking to guide optimal care, and limited resources in the NICU and during follow-up - all leading to self-fulfilling prophecies of poor prognosis. Optimization of regionalization, perinatal teamwork and parental involvement, fostering experience by creating specific perinatal centers, stimulating benchmarking, and working with policy makers to allow better long-term outcomes could enable higher survival.

My child's legacy: a mixed methods study of bereaved parents and providers' opinions about collaboration with NICU teams in quality improvement initiatives.

OBJECTIVE: Although stakeholders' participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the perspectives of bereaved parents engaged in different types of activities in Neonatal Intensive Care Units and providers who work with them. DESIGN/METHODS: Mixed methods convergent analysis. SETTING: Canadian paediatric tertiary care university hospital. PARTICIPANTS: All bereaved members of the resource parents group (n=8) and most providers who work with them (n=16) answered a satisfaction/needs questionnaires. RESULTS: Since 2011, eight bereaved parents were involved in a large number of activities mostly related to palliative care (research, education or clinical care initiatives). Three engaged in peer-to-peer support activities while the others preferred activities outside of clinical units and/or without direct interactions with other families. All of them reported that their participation had positive impacts, but two parents also reported a reactivation of traumatic experiences during a medical simulation activity. All participants expressed a desire for further collaboration. Motivation to contribute gravitated around two central themes: helping others and helping themselves. Many wanted to give back, help other families, improve the system and meet with providers who had cared for their child. All stated that this kind of involvement empowered them and gave meaning to their experiences. Providers and researchers all reported positive experiences, mainly due to the unique perspectives of bereaved parents who took part in their projects. CONCLUSIONS: With careful recruitment and supervision, some bereaved parents can become resource parents involved in different types of activities. It is important to understand the positive impacts this type of engagement can have on their healing process and to control the risks related to their participation. Research is needed to develop pertinent tools and measures to evaluate the outcomes and impacts of their participation.

Integrating Parents in Neonatal and Pediatric Research.

BACKGROUND: Parents and their infants are the beneficiaries of neonatal and pediatric research, but in the past they have been excluded from most stages of research projects. As a result, many projects may fail to produce the most worthwhile information for parents and families. Lately, veteran resource parents and patients have been increasingly integrated in research initiatives. METHODS: Benchmarking of neonatal and pediatric research initiatives where resource parents and/or ex neonatal patients have helped to optimize pediatric research. We review ways in which resource parents/patients can be involved in research, with examples and practical ideas of how to proceed. RESULTS: Resource parents/patients can be collaborators in research and be integrated in many steps: prioritizing research projects, designing trials, determining the outcomes of interest, ethics review, developing and improving consent procedures, collection and interpretation of data, participation in data safety monitoring committees, publication of results, and presentation to peer groups. Some of the strategies for integration of stakeholders in clinical research are more complex, may involve risk and require more training than others. CONCLUSION: We suggest that groups wanting to involve parents in their research endeavors start with simpler tasks that entail less risk and develop teams of resource parents who have differing interests and abilities. Quality control of programs is essential, such as frequently giving and obtaining feedback from resource parents/patients and researchers. In the future, integration of resource parents/patients into every step of clinical research will be essential to ensure that parent and family important outcomes are examined.

Improving neonatal care with the help of veteran resource parents: An overview of current practices.

Over the past decade, veteran parents who have lived a neonatal intensive care unit (NICU) experience have become increasingly involved as 'resource parents' to provide peer-to-peer support to "new" NICU parents. These parents can provide a unique form of support to new parents. They can also assume other roles in clinical care, research, administration and/or teaching, but those roles are rarely described in the literature. This article reviews many of the activities performed by resource parents in neonatology. These activities were identified/examined and classified according to the location of involvement (hospital or not), the presence/absence of direct interaction with families and providers, and the topic of involvement. We have also identified gaps in knowledge relative to recruitment and training, development and evaluation of programs, structuring of responsibilities, and remuneration of resource parents. Future research is needed to measure the impact of resource parents on neonatal care.

Apology in cases of medical error disclosure: Thoughts based on a preliminary study.

BACKGROUND: Disclosing medical errors is considered necessary by patients, ethicists, and health care professionals. Literature insists on the framing of this disclosure and describes the apology as appropriate and necessary. However, this policy seems difficult to put into practice. Few works have explored the function and meaning of the apology. OBJECTIVE: The aim of this study was to explore the role ascribed to apology in communication between healthcare professionals and patients when disclosing a medical error, and to discuss these findings using a linguistic and philosophical perspective. METHODS: Qualitative exploratory study, based on face-to-face semi-structured interviews, with seven physicians in a neonatal unit in France. Discourse analysis. RESULTS: Four themes emerged. Difference between apology in everyday life and in the medical encounter; place of the apology in the process of disclosure together with explanations, regrets, empathy and ways to avoid repeating the error; effects of the apology were to allow the patient-physician relationship undermined by the error, to be maintained, responsibility to be accepted, the first steps towards forgiveness to be taken, and a less hierarchical doctor-patient relationship to be created; ways of expressing apology ("I am sorry") reflected regrets and empathy more than an explicit apology. CONCLUSION: This study highlights how the act of apology can be seen as a "language act" as described by philosophers Austin and Searle, and how it functions as a technique for making amends following a wrongdoing and as an action undertaken in order that neither party should lose face, thus echoing the sociologist Goffmann's interaction theory. This interpretation also accords with the views of Lazare, for whom the function of apology is a restoration of dignity after the humiliation of the error. This approach to the apology illustrates how meaning and impact of real-life language acts can be clarified by philosophical and sociological ideas.

Differentiating Transient Idiopathic Hyperglycaemia and Neonatal Diabetes Mellitus in Preterm Infants.

BACKGROUND/AIMS: Transient idiopathic hyperglycaemia (TIH) is partly due to defective processing of proinsulin to insulin in preterm neonates, whereas transient neonatal diabetes mellitus (TNDM) is a rare genetic form of pancreatic ß-cell dysfunction. Distinguishing these two conditions is difficult yet essential to allow personalised management and genetic testing. Here we investigated whether metabolic or therapeutic features contributed to the diagnosis in preterm neonates. METHODS: We prospectively included 13 preterm neonates with TIH between 2008 and 2011, and we identified 2 patients with TNDM in the French neonatal diabetes cohort registry. All of them were born before 32 weeks of gestation. We compared clinical features, glycaemic profiles, insulin dosages, and nutritional intakes. RESULTS: TNDM patients had higher day-1 glycaemia levels before insulin therapy [median 23.5 (20-27) vs. 13.6 (10.7-19.8) mmol/l, p = 0.025] and higher insulin requirements [median 1.2 (0.9-1.5) vs. 0.8 (0.3-0.9) IU/kg/day, p = 0.037] compared to TIH. They also required insulin therapy earlier [median 0.75 (0.5-1) vs. 2 (0.5-7) days, p = 0.036] and for a longer time [median 85 (57-113) vs. 11 (4-15) days, p = 0.036]. CONCLUSION: TNDM and TIH are different clinical and genetic entities with specific pathophysiological mechanisms. Metabolic and therapeutic features may help to detect TNDM in preterm neonates as soon as day-1 of hyperglycaemia.