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Parental understanding and self-blame following sudden infant death: a mixed-methods study of bereaved parents' and professionals' experiences.
BMJ Open 2016; 6(5):e011323BO

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.

Authors+Show Affiliations

Division of Mental Health and Wellbeing, University of Warwick, Coventry, UK Coventry and Warwickshire Partnership NHS Trust, Coventry, UK.Division of Health Science, University of Warwick, Coventry, UK.Division of Mental Health and Wellbeing, University of Warwick, Coventry, UK.

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

27198994

Citation

Garstang, Joanna, et al. "Parental Understanding and Self-blame Following Sudden Infant Death: a Mixed-methods Study of Bereaved Parents' and Professionals' Experiences." BMJ Open, vol. 6, no. 5, 2016, pp. e011323.
Garstang J, Griffiths F, Sidebotham P. Parental understanding and self-blame following sudden infant death: a mixed-methods study of bereaved parents' and professionals' experiences. BMJ Open. 2016;6(5):e011323.
Garstang, J., Griffiths, F., & Sidebotham, P. (2016). Parental understanding and self-blame following sudden infant death: a mixed-methods study of bereaved parents' and professionals' experiences. BMJ Open, 6(5), pp. e011323. doi:10.1136/bmjopen-2016-011323.
Garstang J, Griffiths F, Sidebotham P. Parental Understanding and Self-blame Following Sudden Infant Death: a Mixed-methods Study of Bereaved Parents' and Professionals' Experiences. BMJ Open. 2016 05 19;6(5):e011323. PubMed PMID: 27198994.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Parental understanding and self-blame following sudden infant death: a mixed-methods study of bereaved parents' and professionals' experiences. AU - Garstang,Joanna, AU - Griffiths,Frances, AU - Sidebotham,Peter, Y1 - 2016/05/19/ PY - 2016/5/21/entrez PY - 2016/5/21/pubmed PY - 2017/12/7/medline KW - QUALITATIVE RESEARCH SP - e011323 EP - e011323 JF - BMJ open JO - BMJ Open VL - 6 IS - 5 N2 - 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. SN - 2044-6055 UR - https://www.unboundmedicine.com/medline/citation/27198994/Parental_understanding_and_self_blame_following_sudden_infant_death:_a_mixed_methods_study_of_bereaved_parents'_and_professionals'_experiences_ L2 - http://bmjopen.bmj.com/cgi/pmidlookup?view=long&pmid=27198994 DB - PRIME DP - Unbound Medicine ER -