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

Dahan, Sonia; Bourque, Claude Julie; Reichherzer, Martin; Moussa, Ahmed; Prince, Josée; Mantha, Ginette; Labelle, Fanny; Janvier, Annie

doi:10.1016/j.jpeds.2018.11.051

Cited by 28 publications

(49 citation statements)

References 26 publications

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“…6 In our experience, medical simulations, where parents play the role of NICU parents are high-risk situations as shown in the Pyramid of complexity where this type of activity is found at the top of the pyramid. 12 As the integration of stakeholders-playing their role-seems to be increasing in medical simulations, our experience shows the existence of risks for patient or parent participants. Bereaved resource parents should be informed about these risks and made aware that they can interrupt their participation whenever they want to.…”

Section: Discussionmentioning

confidence: 90%

“…Open access unique perspective to improve care. [10][11][12] Because they are often considered part of a vulnerable population, bereaved parents are often excluded from this type of collaboration for ethical and practical reasons, mainly potential risks to their well-being. 10 13 14 Yet, their perspectives and opinions are recognised as important and are increasingly sought.…”

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confidence: 99%

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

Bourque

Dahan

Mantha³

et al. 2020

BMJ Open

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ObjectiveAlthough 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/methodsMixed methods convergent analysis.SettingCanadian paediatric tertiary care university hospital.ParticipantsAll bereaved members of the resource parents group (n=8) and most providers who work with them (n=16) answered a satisfaction/needs questionnaires.ResultsSince 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.Conclusion(s)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.

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Section: Discussionmentioning

confidence: 90%

mentioning

confidence: 99%

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

Bourque

Dahan

Mantha³

et al. 2020

BMJ Open

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“…In practice, ethics committees require that precise information about the study and about legal aspects of research be mentioned, so shortening the written information is difficult. Yet, the written information can be improved with collaborative work between physicians and parents, by making it more understandable and relevant for non-professionals 26–29. In Europe, the parents’ advisory board of the European Foundation for the Care of Newborn Infants and their family give recommendations about the consent process in neonatal trials 30.…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2020

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ObjectiveThis 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.SettingSingle centre study in NICU of the Centre Hospitalier Intercommunal de Créteil, France, using a convenience period from February to May 2016.DesignAncillary 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.ResultsParents’ 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.ConclusionsConfronting 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.

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“…To represent a wide sample of perspectives, we aimed to recruit 20 evaluators with various interdisciplinary backgrounds, including bereaved parents. 13 Each video was viewed by all evaluators, including the 2 standardized actors.…”

Section: Assessment Of Simulationsmentioning

confidence: 99%

Techniques to Communicate Better With Parents During End-of-Life Scenarios in Neonatology

et al. 2020

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BACKGROUND AND OBJECTIVES: Clinicians are urged to optimize communication with families, generally without empirical practical recommendations. The objective of this study was to identify core behaviors associated with good communication during and after an unsuccessful resuscitation, including parental perspectives. METHODS: Clinicians from different backgrounds participated in a standardized, videotaped, simulated neonatal resuscitation in the presence of parent actors. The infant remained pulseless; participants communicated with the parent actors before, during, and after discontinuing resuscitation. Twenty-one evaluators with varying expertise (including 6 bereaved parents) viewed the videos. They were asked to score clinician-parent communication and identify the top communicators. In open-ended questions, they were asked to describe 3 aspects that were well done and 3 that were not. Answers to open-ended questions were coded for easily reproducible behaviors. All the videos were then independently reviewed to evaluate whether these behaviors were present. RESULTS: Thirty-one participants' videos were examined by 21 evaluators (651 evaluations). Parents and actors agreed with clinicians 81% of the time about what constituted optimal communication. Good communicators were more likely to introduce themselves, use the infant's name, acknowledge parental presence, prepare the parents (for the resuscitation, then death), stop resuscitation without asking parents, clearly mention death, provide or enable proximity (clinician-parent, infant-parent, clinician-infant, mother-father), sit down, decrease guilt, permit silence, and have knowledge about procedures after death. Consistently, clinicians who displayed such behaviors had evaluations .9 out of 10 and were all ranked top 10 communicators. CONCLUSIONS: During a neonatal end-of-life scenario, many simple behaviors, identified by parents and providers, can optimize clinician-parent communication. * P , .05 ** P , .01. Dr Zao contributed to the acquisition of data, interpretation of data (behavior coding), and critically revised the article for important intellectual content; Dr Lachance contributed to the acquisition of data, interpretation of data (quantitative portion), and critically revised the article for important intellectual content; and all authors contributed to the conception and design of the study, ensure that questions relating to accuracy or integrity of any part of the work are appropriately investigated and resolved, agree to be accountable for all aspects of the work, and approved the final version of the article as submitted.

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

Cited by 28 publications

References 26 publications

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

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

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

Techniques to Communicate Better With Parents During End-of-Life Scenarios in Neonatology

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