Parental understanding and self-blame following sudden infant death: a mixed-methods study of bereaved parents' and professionals' experiences

Abstract

ObjectivesImprovements in our understanding of the role of modifiable risk factors for sudden infant death syndrome (SIDS) mean that previous reassurance to parents that these deaths were unpreventable may no longer be appropriate. This study aimed to learn of bereaved parents' and healthcare professionals' experiences of understanding causes of death following detailed sudden unexpected death in infancy (SUDI) investigations. The research questions were: How do bereaved parents understand the cause of death and risk factors identified during detailed investigation following a sudden unexpected infant death? What is the association between bereaved parents' mental health and this understanding? What are healthcare professionals' experiences of sharing such information with families?DesignThis was a mixed-methods study using a Framework Approach.SettingSpecialist paediatric services.ParticipantsBereaved parents were recruited following detailed multiagency SUDI investigations; 21/113 eligible families and 27 professionals participated giving theoretical saturation of data.Data collectionWe analysed case records from all agencies, interviewed professionals and invited parents to complete the Hospital Anxiety and Depression Scale (HADS) and questionnaires or in-depth interviews.ResultsNearly all bereaved parents were able to understand the cause of death and several SIDS parents had a good understanding of the relevant modifiable risk factors even when these related directly to their actions. Paediatricians worried that discussing risk factors with parents would result in parental self-blame and some deliberately avoided these discussions. Over half the families did not mention blame or blamed no one. The cause of death of the infants of these families varied. 3/21 mothers expressed overwhelming feelings of self-blame and had clinically significant scores on HADS.ConclusionsBereaved parents want detailed information about their child's death. Our study suggests parents want health professionals to explain the role of risk factors in SIDS. We found no evidence that sharing this information is a direct cause of parental self-blame.

The Grief of Mothers After the Sudden Unexpected Death of Their Infants

“…Consequently, pediatric researchers have historically conducted research on the psychological consequences of SIDS and its ongoing impact on the family after this loss. 3–10…”

Cerebellar heterotopia of infancy in sudden infant death syndrome: an observational neuropathological study of four cases

“…One mechanism might be that CHOI is simply a morphological marker indicating more subtle, yet functionally important abnormalities of the brainstem leading to impaired protective responses. In that regard, CHOI might be a surrogate marker for more profound disturbances that are not apparent with simple light microscopy, similar to the proposed mechanism with subtle dentate gyrus abnormalities that have been shown to occur in SIDS [ 27 , 28 ]. In addition, CHOI may be found in the context of more widespread migration disorders and/or in certain genetic syndromes, as in trisomies 13 or 18, emphasising a character of a proper malformation of its own [ 26 ].…”

“…On the other hand, the importance of detailed investigations of critical brain regions involved in arousal and/or respiratory control should be considered of utmost priority for further elucidating the mechanism behind this grave and devastating event [ 6 , 43 , 44 ]. Furthermore, recent studies suggest that detailed knowledge about an infant´s death might be supportive for bereaved parents [ 27 , 28 ]. Accordingly, neuropathology can be of considerable help in this process.…”

“…1 Loosely aggregated misplaced poorly organised cerebellar cell rests, heterotaxiatype in cases #1 and #4, hematoxilin and eosin stain (a, d); well-organised misplaced cerebellar cell rests composed of all physiological foliar components, heterotopia-type in cases #2 and #3, HE (b, c). Scale bar 100 μm in a-d SIDS [27,28]. In addition, CHOI may be found in the context of more widespread migration disorders and/or in certain genetic syndromes, as in trisomies 13 or 18, emphasising a character of a proper malformation of its own [26].…”

Working Together to Understand Why Infants Die: A Qualitative Study of Professionals' Experiences of Joint Agency Investigation of Sudden Unexpected Death in Infancy

“…We conducted a mixed‐methods study to evaluate the JAA investigation of SUDI which captured the perspectives of both bereaved families and professionals, and reviewed causes of death. This paper reports results from this mixed‐methods study on the experiences of professionals; results relating to parental experiences and causes of death have been reported elsewhere (Garstang et al ., , , ). For this paper, our research question was: What are the experiences of professionals investigating sudden unexpected infant deaths using a JAA?…”