Study reveals the obstacles mothers face in getting help for their critically ill children

Researchers interviewed caregivers of 252 children who were admitted to the Paediatric Intensive Care Unit (PICU) of the Red Cross War Memorial Children's Hospital, as well as the caregivers of 30 children who died prior to PICU admission. The research team critically examined every step of the journey, from the first point of contact with the healthcare system to finally being admitted to the PICU. The findings revealed that this process took a mean of 12.3 hours and sometimes included ambulance journeys and multiple referrals.

The research found that three of the 30 deaths included in the study could have been avoided with better care, and another 14 were “potentially avoidable”.

“In our expert opinion as the retrospective panel, 'potentially' meant that some acute intervention in the health pathway could maybe have prevented the deaths,” said Dr Peter Hodkinson of the Division of Emergency Medicine at UCT.

He added that the severity of illness on arrival at the intensive care unit may also have been avoided in up to 74% of children enrolled in the study, if they had received better care along the referral chain en route.

Researchers used a unique methodology adapted from confidential enquiries in the UK to assess quality of care and to quantify the issues facing the children in the study. This is the first study to review clinical care of a large number of critically injured children with a wide range of diagnoses in a resource-constrained setting and high enrolment rates, using a detailed review process with the perspective of the family from caregiver interviews.

Hodkinson, whose PhD thesis is based on the research, sketched the hurdles many caregivers face even before they've left home with a sick child.

“Caregivers, particularly in communities with limited resources, face enormous obstacles in accessing emergency care for sick babies and children, starting with finding transport to the nearest facility, which is often far from home. Once at a facility, they face queues of other sick people and adults, often with unclear directions of where to queue and sometimes 'grey' systems for prioritising sick children. Even once they see a doctor, the battle is far from over.”

Hodkinson said doctors at primary healthcare facilities were usually generalists who were far more comfortable with adult patients.

“Little children tend to scare them. Even when they do identify a child as very sick, they seem to be hesitant to act and carry out lifesaving procedures and resuscitation – as it's outside of their comfort zone. At some stage, they make the decision to transfer the child to a specialist hospital, so they call an ambulance. The child could be at a critical stage by now.”

Hodkinson said even though the ambulance service in Cape Town is excellent and comparable to many high-income settings, there is room for improvement, with identified issues around the timely dispatch of appropriate resources.

“Mothers perceive that their battle is done and their child has arrived in the best hands once they get to the regional paediatric specialist hospital. And they are right … the care is way better and the practitioners are all very familiar and comfortable with children. But they are overburdened with sick children, with a bottleneck of children waiting for PICU beds – just 22 in the Red Cross War Memorial Children's Hospital.”

Dr Hodkinson's PhD thesis, entitled 'Pathways to Care for Critically Ill or Injured Children: A Cohort Study from First Presentation to Health Care Services through to Admission to Intensive Care or Death,' was based on a Wellcome Trust-funded collaborative research project between researchers from UCT and the University of Oxford.

The study, recently published in PLOS One, was unique in that it looked at the overall functioning of the entire system. This allowed a system-wide evaluation of the nature and quality of care for a group of the sickest and most injured children in Cape Town.

Dr Hodkinson said the most frequent failing was inadequate access to emergency care or personnel. Children were not properly assessed initially, while resuscitation was sometimes not done or was inadequate. He said there is considerable scope for improvement in these areas.

“Our findings show that a significant proportion of deaths of children may be avoidable and that delays in accessing quality emergency care for children are a major concern. While children received excellent care at many steps, the overall system does not always provide the care that we would aspire to.”

Failure to recognise and manage serious infection was the most frequent avoidable factor in primary care. Dr Hodkinson said more could be done to educate parents and nurses about 'red flags' and the value of gut feeling. Researchers also suggest a centralised paediatric emergency line for emergency advice.

The research says that referral delays could be reduced by fast-tracking patients directly to PICU, better prioritisation of emergency medical services, and early warning systems in the hospital setting.

Dr Hodkinson said that the results of the study are potentially applicable to improving health systems in low-, middle- and even high-income settings.

Professor Andrew Argent, the medical director of the PICU at the Red Cross War Memorial Children's Hospital and professor at the School of Child and Adolescent Health at UCT, said: “The research was carried out with the support and collaboration of the City of Cape Town and the Western Cape Department of Health, and this demonstrates their commitment to quality control as well as focusing on how patient care can be improved within the resources available.”

Dr Hodkinson was supervised in his PhD research by Professor Argent and Professor Lee Wallis, the head of Emergency Medicine for the Western Cape.