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

Bourque, Claude Julie; Dahan, Sonia; Mantha, Ginette; Reichherzer, Martin; Janvier, Annie

doi:10.1136/bmjopen-2019-034817

Cited by 6 publications

(9 citation statements)

References 23 publications

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“…Patients who die early after an intervention are usually the most severely ill patients, and excluding them can seriously reduce external validity, jeopardize the balance between study arms, and influence the effect of the intervention on the group in question [31]. If data from deceased patients are not used, the primary analysis based on an intention-to-treat principle would also be compromised [43].…”

Section: The Consent Waiver Study In the Event Of A Patient’s Deathmentioning

confidence: 99%

“…The Consent Waiver Study in the Event of a Patient's Death Unfortunately, the stakes for devastating patient outcomes are high in many studies involving consent waiver processes. Bourque et al [43] found that many parents whose children died found it beneficial to "give back" in their child's memory and viewed it as their child's legacy. Their healing process was also helped by being involved in research, education, or clinical care initiatives.…”

Section: Parent Views Of Deferred or Consent Waiver Studiesmentioning

confidence: 99%

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A Narrative Review of the Rationale for Conducting Neonatal Emergency Studies with a Waived or Deferred Consent Approach

Katheria¹,

Schmölzer²,

Janvier³

et al. 2023

Neonatology

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Emergency research studies are high-stakes studies that are usually performed on the sickest patients, where many patients or guardians have no opportunity to provide full informed consent prior to participation. Many emergency studies self-select healthier patients who can be informed ahead of time about the study process. Unfortunately, results from such participants may not be informative for the future care of sicker patients. This inevitably creates waste and perpetuates uninformed care and continued harm to future patients. The waiver or deferred consent process is an alternative model that may be used to enroll sick patients who are unable to give prospective consent to participate in a study. However, this process generates vastly different stakeholder views which have the potential to create irreversible impediments to research and knowledge. In studies involving newborn infants, consent must be sought from a parent or guardian, and this adds another layer of complexity to already fraught situations if the infant is very sick. In this manuscript, we discuss reasons why consent waiver or deferred consent processes are vital for some types of neonatal research, especially those occurring at and around the time of birth. We provide a framework for conducting neonatal emergency research under consent waiver that will ensure the patient’s best interests without compromising ethical, beneficial, and informative knowledge acquisition to improve the future care of sick newborn infants.

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Section: The Consent Waiver Study In the Event Of A Patient’s Deathmentioning

confidence: 99%

Section: Parent Views Of Deferred or Consent Waiver Studiesmentioning

confidence: 99%

A Narrative Review of the Rationale for Conducting Neonatal Emergency Studies with a Waived or Deferred Consent Approach

Katheria¹,

Schmölzer²,

Janvier³

et al. 2023

Neonatology

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“…It is likely that the course and outcome of their own child, as well as parents’ personal characteristics or emotions, may have influenced participants’ responses . Enrollment was lower than expected, and generalizability is limited by the single-center design and underrepresentation of parents groups whose preference may differ (parents with mental health concerns, bereaved parents, parents from racial and ethnic minority groups) . In retrospect, parents of deceased infants may have preferred pessimistic framing.…”

Section: Discussionmentioning

confidence: 95%

Optimistic vs Pessimistic Message Framing in Communicating Prognosis to Parents of Very Preterm Infants

Forth,

Hammerle,

König

et al. 2024

JAMA Netw Open

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ImportanceIn the neonatal intensive care unit, there is a lack of understanding about how best to communicate the prognosis of a serious complication to parents.ObjectiveTo examine parental preferences and the effects of optimistic vs pessimistic message framing when providing prognostic information about a serious complication.Design, Setting, and ParticipantsThis crossover randomized clinical trial was conducted at a single German university medical center between June and October 2021. Eligible participants were parents of surviving preterm infants with a birth weight under 1500 g. Data were analyzed between October 2021 and August 2022.InterventionsAlternating exposure to 2 scripted video vignettes showing a standardized conversation between a neonatologist and parents, portrayed by professional actors, about the prognosis of a hypothetical very preterm infant with severe intraventricular hemorrhage. The video vignettes differed in the framing of identical numerical outcome estimates as either probability of survival and probability of nonimpairment (optimistic framing) or a risk of death and impaired survival (pessimistic framing).Main Outcomes and MeasuresThe primary outcome was preference odds (ratio of preference for optimistic vs pessimistic framing). Secondary outcomes included state anxiety, perceptions of communication, and recall of numerical estimates.ResultsOf 220 enrolled parents (142 [64.5%] mothers; mean [SD] age: mothers, 39.1 [5.6] years; fathers, 42.7 [6.9] years), 196 (89.1%) preferred optimistic and 24 (10.1%) preferred pessimistic framing (preference odds, 11.0; 95% CI, 6.28-19.10; P &lt; .001). Preference for optimistic framing was more pronounced when presented second than when presented first (preference odds, 5.41; 95% CI, 1.77-16.48; P = .003). State anxiety scores were similar in both groups at baseline (mean difference, −0.34; −1.18 to 0.49; P = .42) and increased equally after the first video (mean difference, −0.55; 95% CI, −1.79 to 0.69; P = .39). After the second video, state anxiety scores decreased when optimistic framing followed pessimistic framing but remained unchanged when pessimistic framing followed optimistic framing (mean difference, 2.15; 95% CI, 0.91 to 3.39; P &lt; .001). With optimistic framing, participants recalled numerical estimates more accurately for survival (odds ratio, 4.00; 95% CI, 1.64-9.79; P = .002) but not for impairment (odds ratio, 1.50; 95% CI, 0.85-2.63; P = .16).Conclusions and RelevanceWhen given prognostic information about a serious complication, parents of very preterm infants may prefer optimistic framing. Optimistic framing may lead to more realistic expectations for survival, but not for impairment.Trial RegistrationGerman Clinical Trials Register (DRKS): DRKS00024466

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“…25 To support mental health, professional counselling, support groups, peer counselling, and community physicians have all been described as potentially helpful to support acceptance and adaptation to loss. 15,33,40,50 For some families, spiritual or religious supports are significant; however, finding adequate support can be challenging. 14,15,27,49 Additionally, there is a timeliness to the extent, interval, and duration of support.…”

Section: Parents May Experience a Cascade Of Different Losses Shaping...mentioning

confidence: 99%

Considerations for Practice in Supporting Parental Bereavement in the Neonatal Intensive Care Unit—a Systematic Review

et al. 2023

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Background Parental bereavement after the death of an infant in a neonatal intensive care unit (NICU) is a complex and nuanced experience. Support from healthcare practitioners can have a significant impact on bereavement experiences in the short- and long-term. Although several studies exist exploring parental perceptions of their experience of loss and bereavement, there has not been a recent review of beneficial practices and common themes in the current literature. Objective This review synthesizes empirical research to identify considerations that ought to guide the caregiving practices of healthcare professionals to support parental bereavement. Settings/subjects Data was collected from studies identified in MEDLINE, Embase, and CINAHL. The search was limited to English-language studies describing parental bereavement in the NICU population from January 1990 to November 2021. Results Of 583 studies initially identified, 47 studies of varying geographic locations were included in this review. Various themes surrounding healthcare support in parental bereavement were identified including ensuring the opportunity for parents to spend time caring for their child, understanding their perception of infant suffering, recognizing the impact of communication experiences with healthcare providers, and offering access to alternative means of support, all of which have been described as suboptimal. Parents generally want the opportunity to say goodbye to their infant in a private and safe space, be supported through their decision-making and be offered bereavement follow-up after loss. Conclusion This review identifies methods of support in parental bereavement based on first-hand parental experiences and routine implementation of these strategies may be beneficial in supporting parents through their bereavement after the loss of a baby in the NICU.

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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

Cited by 6 publications

References 23 publications

A Narrative Review of the Rationale for Conducting Neonatal Emergency Studies with a Waived or Deferred Consent Approach

A Narrative Review of the Rationale for Conducting Neonatal Emergency Studies with a Waived or Deferred Consent Approach

Optimistic vs Pessimistic Message Framing in Communicating Prognosis to Parents of Very Preterm Infants

Considerations for Practice in Supporting Parental Bereavement in the Neonatal Intensive Care Unit—a Systematic Review

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