Abstract
PurposeUnderstanding caregivers’ experiences of care can identify barriers to timely and good quality care, and support the improvement of services. We aimed to explore caregivers’ experiences and perceptions of pathways to care, from first access through various levels of health service, for seriously ill and injured children in Cape Town, South Africa, in order to identify areas for improvement.MethodsSemi-structured, qualitative interviews were conducted with primary caregivers of children who were admitted to paediatric intensive care or died in the health system prior to intensive care admission. Interviews explored caregivers’ experiences from when their child first became ill, through each level of health care to paediatric intensive care or death. A maximum variation sample of transcripts was purposively sampled from a larger cohort study based on demographic characteristics, child diagnosis, and outcome at 30 days; and analysed using the method of constant comparison.ResultsOf the 282 caregivers who were interviewed in the larger cohort study, 45 interviews were included in this qualitative analysis. Some caregivers employed ‘tactics’ to gain quicker access to care, including bypassing lower levels of care, and negotiating or demanding to see a healthcare professional ahead of other patients. It was sometimes unclear how to access emergency care within facilities; and non-medical personnel informally judged illness severity and helped or hindered quicker access. Caregivers commonly misconceived ambulances to be slow to arrive, and were concerned when ambulance transfers were seemingly not prioritised by illness severity. Communication was often good, but some caregivers experienced language difficulties and/or criticism.ConclusionsInterventions to improve child health care could be based on: reorganising the reception of seriously ill children and making the emergency route within healthcare facilities clear; promoting caregivers’ use of ambulances and prioritising transfers according to illness severity; addressing language barriers, and emphasising the importance of effective communication to healthcare providers.
Highlights
Reducing avoidable childhood morbidity and mortality is an international priority, in sub-Saharan Africa[1] where there is an urgent need for research into the provision of care for the critically ill and injured[2]
Of the 282 caregivers who were interviewed in the larger cohort study, 45 interviews were included in this qualitative analysis
Interventions to improve child health care could be based on: reorganising the reception of seriously ill children and making the emergency route within healthcare facilities clear; promoting caregivers’ use of ambulances and prioritising transfers according to illness severity; addressing language barriers, and emphasising the importance of effective communication to healthcare providers
Summary
Reducing avoidable childhood morbidity and mortality is an international priority, in sub-Saharan Africa[1] where there is an urgent need for research into the provision of care for the critically ill and injured[2]. Understanding pathways to care for seriously ill or injured children, from the decision to access health care through various levels of health services to the highest level of care, is a powerful yet under-utilised tool for tackling preventable morbidity and mortality. Qualitative research with patients/caregivers is crucial for identifying aspects of health care which matter to them, improving evidenced-based, patient-centred care[6,7,8,9], and highlighting issues to be addressed to improve access to and quality of child health care[10,11,12]. Child age Caregiver age, marital status, education level, employment Household income
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