“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

Abstract

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.

‘I am afraid the news is not good’ – Breaking bad news in the time of COVID: Experiences from a field hospital

“…The importance of how such devastating news is broken to families, and their consequent perceptions of the quality of healthcare, as well as their own bereavement, is clear from local research. 32 …”

Parental supporter in pediatric resuscitation: A mixed‐method study with Delphi and analytic hierarchy process

“…In this study, reassuring the parents that the resuscitation team is doing everything possible to save the child's life and that the team is coordinated by an experienced practitioner were the most important roles of a parental supporter during pediatric resuscitation, and consensus was achieved for these items. Similar to results of other studies, parents needed to trust that healthcare professionals were doing everything possible for their child (Hodkinson et al, 2019;Manguy et al, 2021;Stewart, 2019) and to sense cooperation and coordination between members of the resuscitation team. But consensus was not achieved for items related to parents attending or witnessing their child's resuscitation.…”