Rigour and rapport : a qualitative study of parents' and professionals' experiences of joint agency infant death investigation

Background: In many countries there are now detailed Child Death Review (CDR) processes following unexpected child deaths. CDR can lead to a fuller understanding of the causes for each child’s death but this potentially intrusive process may increase the distress of bereaved families. In England, a joint agency approach (JAA) is used where police, healthcare and social services investigate sudden child deaths together and a key part of this is the joint home visit (JHV) where specialist police and paediatricians visit the home with the parents to view the scene of death. This study aimed to learn of bereaved parents’ experiences of JAA investigation following Sudden Unexpected Death in Infancy (SUDI). Methods: This was a qualitative study of joint agency investigation of SUDI by specialist police, healthcare and social services including case note analysis, parental questionnaires, and in-depth interviews with parents and professionals. Families were recruited at the conclusion of the JAA. Data were analysed using a Framework Approach. Results: 21/113 eligible families and 26 professionals participated giving theoretical saturation of data. There was an inherent conflict for professionals trying to both investigate deaths thoroughly as well as support families. Bereaved parents appreciated the JAA especially for the information it provided about the cause of death but were frustrated with long delays waiting to obtain this. Many parents wanted more emotional support to be routinely provided. Most parents found the JHV helpful but a small minority of mothers found this intensely distressing. In comparison to JHVs, when police visited death scenes without paediatricians, information was missed and parents found these visits more upsetting. There were issues with uniformed non-specialist police traumatising parents by starting criminal investigations and preventing parents from accessing their home or collecting vital possessions. Conclusions: Overall most parents feel supported by professionals during the JAA; however there is scope for improvement. Paediatricians should ensure that parents are kept updated with the progress of the investigations. Some parents require more emotional support and professionals should assist them in accessing this