Dataset Information

Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement.

ABSTRACT:

Background

Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was associated with subsequent risk of parental anxiety or depression. The secondary objective was to assess parents' perceptions of end-of-life care according to death context.

Methods

Prospective single center observational study of all neonatal deaths in a neonatal intensive care unit over a 5-year period. Data were collected during hospitalization and from face-to-face interviews with parents 3 months after the infant's death. Anxiety and depression were assessed using Hospital Anxiety and Depression Scale (HADS) questionnaires, completed by parents 5 and 15 months after death.

Results

Of 179 deaths, 115 (64%) occurred after the WWLST decision and 64 (36%) despite maximum care. Parental satisfaction with newborn care and received support by professionals and relatives was higher in the first condition. Sixty-one percent of parents (109/179) attended the 3-month interview, with the distribution between groups very close to that of hospitalization. The completion rates of the HADS questionnaires by the parents who attended the 3-month interview were 75% (82/109) at 5 months and 65% (71/109) at 15 months. HADS scores at 5 months were consistent with anxiety in at least one parent in 73% (60/82) of cases and with depression in 50% (41/82). At 15 months, these rates were, respectively, 63% (45/71) and 28% (20/71). Risk of depression at 5 months was lower after a WWLST decision (OR 0.35 [0.14, 0.88], p = 0.02). Explicit parental agreement with the WWLST decision had an equivocal impact on the risk of anxiety at 5 months, being higher when expressed during hospitalization, but not at the 3-month interview.

Conclusions

Context of death has a significant impact on the emotional experience of parents after neonatal loss, which underlines the importance of systematic follow-up conversations with bereaved parents.

SUBMITTER: Cambonie G

PROVIDER: S-EPMC10182590 | biostudies-literature | 2023 May

REPOSITORIES: biostudies-literature

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Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement.

Cambonie Gilles G Desage Chloé C Thaller Pénélope P Lemaitre Anne A de Balanda Karine Bertran KB Combes Clémentine C Gavotto Arthur A

BMC palliative care 20230513 1

<h4>Background</h4>Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was associated with subsequent risk of parental anxiety or depression. The secondary objective was to assess parents' perceptions of end-of-life care according to death context.<h4>Methods</h4>Prospective single center observational study of all ...[more]

PMID: 37173678

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Project description:BackgroundStudies comparing the frequency of different mental health conditions across different settings and evaluating their association with parental participation in newborn care are lacking. We aimed at evaluating the frequency of parental stress, anxiety and depression, along with the level of participation in newborn care, among parents of newborns in Italy, Brazil and Tanzania.MethodsParental stress, anxiety, depression and participation in care were assessed prospectively in parents of newborns in eight neonatal intensive care units (NICUs) utilising: the Parental Stressor Scale in NICU (PSS:NICU); the Edinburgh Postnatal Depression Scale (EPDS) and EPDS-Anxiety subscale (EPDS-A); the Index of Parental Participation in NICU (IPP-NICU). Univariate and multivariate analyses were conducted.ResultsStudy outcomes were assessed on 742 parents (Brazil=327, Italy=191, Tanzania=224). Observed scores suggested a very high frequency of stress, anxiety and depression, with an overall estimated frequency of any of the mental health condition of 65.1%, 52.9% and 58.0% in Brazil, Italy, Tanzania, respectively (p<0.001). EPDS scores indicating depression (cut-off: ≥13 for Brazil and Tanzania, ≥12 for Italy) were significantly more frequent in Tanzania (52.3%) when compared with either Brazil (35.8%) and Italy (33.3%) (p<0.001). Parental participation in care was also significantly higher in Tanzania (median IPP-NICU=24) than in the other two countries (median=21 for Brazil, 18 for Italy, p<0.001). Severe stress (PSS:NICU ≥4) was significantly more frequently reported in Brazil (22.6%), compared with Italy (4.7%) and Tanzania (0%, p<0.001). Factors independently associated with either parental stress, anxiety or depression varied by country, and a significant association with parental participation in care was lacking.ConclusionsStudy findings suggest that parental stress, anxiety and depression are extremely frequent in NICUs in all countries despite diversity in the setting, and requiring immediate action. Further studies should explore the appropriate level of parental participation in care in different settings.

Project description:BackgroundThis study aimed at documenting the levels of stress, depression, anxiety and participation in care among mothers versus fathers of newborns hospitalised in a third-level neonatal intensive care unit (NICU) in Northern Italy.MethodsParental stress, depression and anxiety were assessed by the Parental Stressor Scale in NICU (PSS:NICU), the Edinburgh Postnatal Depression Scale (EPDS) and the State-Trait Anxiety Inventory (STAI). Participation in care was evaluated with the Index of Parental Participation. Differences between mothers and fathers were assessed with the Mood's median test and z-test, respectively for continuous and discrete variables. Multivariate analyses controlling for potential confounders were performed to confirm gender differences.Results191 parents (112 mothers and 79 fathers) were enrolled. Mothers reported significantly higher median scores for stress (2.9 vs 2.2, p<0.001) and trait anxiety (37 vs 32, p=0.004) and higher depression rates (EPDS ≥12: 43.8% vs 19.0%, p<0.001). 'High stress' (PSS:NICU ≥3) was reported by 45.5% of mothers compared with 24.1% of fathers (p=0.004). The frequency of the three conditions simultaneously was significantly higher among mothers (20.0% vs 3.8%, p=0.016), with the vast majority of mothers (76.0%) suffering from at least one condition compared with less than half of fathers (45.3%, p<0.001). Participation in care was more frequent in mothers (median score: 19 vs 15, p<0.001), with the exception of activities related to advocacy (median 5 vs 4, p=0.053). In a multivariate analysis, gender differences in mental health outcomes did not change.ConclusionsRoutine screening of mental distress among parents of infants in NICU is warranted, and gender differences need to be acknowledged in order to deliver tailored support and to promote collaboration with the family of vulnerable newborns. Knowledge and skills on how to prevent and cope with mental distress of parents should be part of the core curriculum of staff working in NICU.

Project description:BackgroundLosing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, timely and personalised support is key to effective care of bereaved parents. However, in the absence of a comprehensive understanding of parental bereavement, effective support of bereaved parents remains suboptimal. To address this gap, we scrutinise prevailing data on the effects of a child's death, aged 0-12 years, through the lens of the Ring Theory of Personhood (RToP).MethodsTo study prevailing accounts of bereaved parents following the death of a child, we adopt Krishna's Systematic Evidence Based Approach (SEBA) to structure our Systematic Scoping Review (SSR in SEBA).ResultsThree thousand seventy-four abstracts were reviewed, 160 full text articles were evaluated, and 111 articles were included and analysed using thematic and content analysis. Four themes/categories were identified relating to the four rings of the RToP. Findings reveal that static concepts of protective and risk factors for grief are misplaced and that the support of healthcare professionals is key to assisting bereaved parents.ConclusionIn the absence of consistent support of bereaved parents, this study highlights the need for effective training of healthcare professionals, beginning with an appreciation that every aspect of an individual parent's personhood is impacted by the loss of their child. Acknowledging grief as a complex, evolving and personalised process subjected to parental characteristics, settings, context and available support, this SSR in SEBA calls attention to effective nurturing of the relationship between parents and healthcare professionals, and suggests use of the RToP to assess and direct personalised, timely, specific support of parents in evolving conditions. We believe the findings of this review also call for further studies to support healthcare professionals as they journey with bereaved parents.

Dataset Information

Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement.

Background

Methods

Results

Conclusions

Publications

Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement.

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