“She’s gone now.” A mixed methods analysis of the experiences and perceptions around the deaths of children who died unexpectedly in health care facilities in Cape Town, South Africa

© 2019 Hodkinson et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Purpose The sudden death of a child is a catastrophic event for both the family and the healthcare workers involved. Confidential enquiries provide a biomedical depiction of the processes and quality of care delivered and drive improvements in care. However, these rarely include an assessment of the patient/caregiver experience which is increasingly regarded as a key measure of quality of care. Methods A parallel convergent mixed methods design was used to compare and contrast medically-assessed clinical quality of care with caregiver perceptions of quality and care in a cohort of sudden childhood deaths in emergency facilities in Cape Town, South Africa. Results Amongst the 29 sudden childhood deaths, clinical quality of care was assessed as poor in 11 (38%) and the death was considered avoidable or potentially avoidable in 16 (55%). The main themes identified from the caregivers were their perception of the quality of care delivered (driven by perceived healthcare worker effort, empathy and promptness), the way the family was dealt with during the final resuscitation, and communications at the time of and after the death. Ten (35%) caregivers were predominantly negative about the care delivered, of whom four received fair clinical quality of care; 13 (49%) of caregivers had predominantly positive experiences, one of whom received poor clinical quality of care. Conclusions Caregivers’ experiences of the healthcare service around their child’s death are influenced largely by the way healthcare workers communicate with them, as well as the perceived clinical effort. This is not always concordant with the clinically assessed quality of care. Simple interventions such as protocols and education of healthcare workers in dealing with families of a dying or deceased child could improve families’ experiences at a time when they are most vulnerable.