Fragility and resilience: parental and family perspectives on the impacts of extreme prematurity.

OBJECTIVES: Extremely preterm babies have a significant risk of neurodevelopmental impairment (NDI). There has been little investigation regarding the impact of prematurity on families. The objective of this study was to explore parental perspectives regarding the impact of prematurity on themselves/their family. METHODS: Over 1 year, parents of children born <29 weeks' gestational age (GA) who were between 18 months old and 7 years old and came for their follow-up visit were invited to participate. They were asked to categorise the impacts of prematurity on their life and their family as positive, negative or both and to describe those impacts in their own words. Thematic analysis was performed by a multidisciplinary group, including parents. Logistic regression was performed to compare parental responses. RESULTS: Among parents (n=248, 98% participation rate), most (74%) reported that their child's prematurity had both positive and negative impacts on their life or their family's life, while 18% reported only positive impacts and 8% only negative impacts. These proportions were not correlated with GA, brain injury, nor level of NDI. The positive impacts reported included: an improved outlook on life, such as gratitude and perspective (48%), stronger family relationships (31%) and the gift of the child (28%). The negative themes were stress and fear (42%), loss of equilibrium due to medical fragility (35%) and concerns about developmental outcomes including the child's future (18%). CONCLUSION: Parents report both positive and negative impacts after an extremely preterm birth, independent of disability. These balanced perspectives should be included in neonatal research, clinical care and provider education.

Pulmonary important outcomes after extremely preterm birth: Parental perspectives.

AIM: To describe pulmonary important outcomes (PIO) reported by parents of children born extremely preterm. METHODS: Over 1-year, all parents of children aged 18 months-7-years born <29 weeks' GA were asked regarding their perspectives. The proportion of parents who described PIO and the themes they invoked were examined. Results were analysed using mixed methods. RESULTS: Among parental responses (n = 285, 98% participation rate), 44% spoke about PIO, invoking 24 themes pertaining to NICU hospitalisation and/or long-term respiratory health. Some themes had an impact primarily on the child (e.g. exercise limitation), while the majority had an impact on the whole family (e.g. hospital readmissions). None mentioned oxygen at 36 weeks nor bronchopulmonary dysplasia (BPD). The proportion of responses invoking PIO were statistically similar between parents of children with and without BPD, born before or after 25 weeks or with birthweight < or ≥750 g. PIO were more likely to be mentioned in males and among those readmitted for respiratory problems. CONCLUSION: Parents describe many PIO, most related to the functional impact of lung disease on their child (and family), rather than the diagnosis of BPD itself. Most of these PIO are not primary outcomes in large neonatal trials nor collected in neonatal databases.

Guilt and Regret Experienced by Parents of Children Born Extremely Preterm.

OBJECTIVES: To explore decisional regret of parents of babies born extremely preterm and analyze neonatal, pediatric, and parental factors associated with regret. STUDY DESIGN: Parents of infants born <29 weeks of gestational age, aged between 18 months and 7 years, attending neonatal follow-up were enrolled. Hospital records were reviewed to examine morbidities and conversations with parents about levels of care. Parents were asked the following question: "Knowing what you know now, is there anything you would have done differently?" Mixed methods were used to analyze responses. RESULTS: In total, 248 parents (98% participation) answered, and 54% reported they did not have regret. Of those who reported regret (n = 113), 3 themes were most frequently invoked: 35% experienced guilt, thinking they were responsible for the preterm birth; 28% experienced regret about self-care decisions; and 20% regretted decisions related to their parental role, generally wishing they knew sooner how to get involved. None reported regret about life-and-death decisions made at birth or in the neonatal intensive care unit. Impairment at follow-up, gestational age, and decisions about levels/reorientation of care were not associated with regret. More mothers reported feeling guilt about the preterm birth (compared with fathers); parents of children with severe lesions on ultrasonography of the head were less likely to report regret. CONCLUSIONS: Approximately one-half of the parents of infants born extremely preterm had regrets regarding their neonatal intensive care unit stay. Causes of regret and guilt should be addressed and minimized.

Mortality and Morbidity rounds in neonatology: Providers' experiences and perspectives.

AIM: To describe how Canadian level III neonatal intensive care units (NICU) organise mortality and morbidity rounds (M&MR) and explore clinicians' perspectives. METHODS: This questionnaire study, including open-ended questions, examined the following domains: (1) M&MR format, (2) ethical issues and (3) limitations and perceived effectiveness. RESULTS: Sixteen out of twenty (80%) level III NICUs participated. All deaths and 64% of morbidities were discussed. M&MR occurred monthly (69%) with 3-5 patients discussed hourly (63%) and usually (75%) physician led. Wide variations of practice between centres existed for practical issues, such as administrative support and attendance. 44% of centres allowed nurses to participate. Goals reported by participants were also heterogeneous: reducing medical error (56%), educational (50%), improving communication (44%) and peer review (23%). Practical barriers were time (75%) and lack of resources/structure (25%). Four main themes were as follows: the role of M&MR, the ongoing blame culture, communication issues and the distinction between mortality and morbidity. CONCLUSION: Goals and format of M&MR vary widely. M&MR remains physician-centric, where the blame culture still endures. Neonatal M&MR models should be adapted to the modern NICU to ensure the M&MR stays relevant. It could also benefit from lessons learned in quality improvement.