Garstang, Joanna (2014) Why did my baby die? : an evaluation of parental and professional experiences of joint agency investigations following sudden unexpected death in infancy. PhD thesis, University of Warwick.

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Abstract

Aims:
Since 2008, in England, all sudden unexpected deaths in infancy (SUDI) must be investigated jointly by police, health and social care. This thesis aims to learn of parents’ and professionals’ experiences of this joint agency approach (JAA) and use this knowledge to improve these investigations.

Methods:
1. Systematic literature review of bereaved parents’ experiences.
2. Systematic literature review of different models of SUDI investigation.
3. A mixed methods study of JAA investigation of SUDI cases; involving case note analysis, questionnaires and in-depth interviews with parents and professionals.
4. A descriptive study of outcomes of JAA SUDI investigation using Child Death Overview Panel (CDOP) data.

Results:
In the mixed methods study, 23/111 families were recruited giving theoretical saturation; the median time between death and parental study participation was 33 weeks. Parents felt that the JAA provided information about the death but offered minimal emotional support; they were often distressed by non-specialist police attending their home as part of the investigation. The joint home visit by police and paediatrician was shown to be a key investigative process. Social care were only involved in 13/23 JAA investigations. Some coroners were reluctant to share information with paediatricians preventing effective JAA investigations.
In the CDOP study were obtained for 93% SUDI cases. Final case discussions were used to discuss risk factors but not to determine the cause of death; in nearly all cases the final cause of death relied on post-mortem examination alone and ignored death scene examination findings. Many deaths were labelled as unascertained despite fulfilling diagnostic criteria for SIDS.

Conclusion:
Ideally, SUDI investigations should be carried out only by specialist clinicians who do this work frequently and the JAA should be fully integrated with social care and coroners’ investigations. There needs to be a clearer system for classifying unexplained SUDI. Police should reconsider their immediate response to SUDI; parents would like more follow-up and bereavement support from professionals.

Item Type:	Thesis or Dissertation (PhD)
Subjects:	R Medicine > RJ Pediatrics
Library of Congress Subject Headings (LCSH):	Sudden infant death syndrome, Children -- Death -- Psychological aspects, Grief therapy, Bereavement -- Psychological aspects
Official Date:	December 2014
Dates:	Date Event December 2014 Submitted
Institution:	University of Warwick
Theses Department:	Warwick Medical School
Thesis Type:	PhD
Publication Status:	Unpublished
Supervisor(s)/Advisor:	Sidebotham, Peter ; Griffiths, Frances
Extent:	443 pages : illustrations, charts.
Language:	eng

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