Garstang, Joanna, Griffiths, Frances and Sidebotham, Peter (2016) Parental understanding and self-blame following sudden infant death : a mixed-methods study of bereaved parents' and professionals' experiences. BMJ Open, 6 (5). e011323. doi:10.1136/bmjopen-2016-011323 ISSN 2044-6055.

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Abstract

Objectives: Improvements 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?

Design: This was a mixed-methods study using a Framework Approach.

Setting: Specialist paediatric services.

Participants: Bereaved parents were recruited following detailed multiagency SUDI investigations; 21/113 eligible families and 27 professionals participated giving theoretical saturation of data.

Data collection: We 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.

Results: Nearly 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.

Conclusions: Bereaved 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.

Item Type:	Journal Article
Subjects:	R Medicine > RJ Pediatrics
Divisions:	Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences > Social Science & Systems in Health (SSSH) Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH):	Sudden infant death syndrome, Blame
Journal or Publication Title:	BMJ Open
Publisher:	BMJ
ISSN:	2044-6055
Official Date:	19 May 2016
Dates:	Date Event 19 May 2016 Published 8 April 2016 Accepted 5 March 2016 Submitted
Volume:	6
Number:	5
Article Number:	e011323
DOI:	10.1136/bmjopen-2016-011323
Status:	Peer Reviewed
Publication Status:	Published
Access rights to Published version:	Open Access (Creative Commons)
Date of first compliant deposit:	19 July 2016
Date of first compliant Open Access:	19 July 2016
Funder:	National Institute for Health Research (Great Britain) (NIHR)
Grant number:	DRF—2010-03-045 (NIHR)
Adapted As:	Published 19 May 2016

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