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Navigating uncertain illness trajectories for young children with serious infectious illness: a modified grounded
Sarah Neill1,2, Lucy Bray3, Bernie Carter3,4
1School of Nursing and Midwifery, Faculty of Health, University of Plymouth, Devon, UK.
Insights
Parents and healthcare professionals struggle to recognize serious infectious illness (SII) symptoms in young children, leading to delayed hospital admissions. Navigating complex social rules and overburdened health services contributes to this critical issue.
Area of Science:
- Pediatric Infectious Diseases
- Healthcare Systems Research
- Patient Pathways
Background:
- Serious infectious illness (SII) is a leading cause of mortality in children under five.
- Understanding factors influencing hospital admission timing is crucial for reducing child mortality.
- This study investigates organizational, environmental, child, family, and professional factors affecting SII hospital admission delays.
Purpose of the Study:
- To identify factors influencing the timing of hospital admission for young children with SII.
- To understand the experiences of parents and healthcare professionals in navigating care for children with SII.
- To develop a theory explaining the pathways to hospital for children with serious infectious illnesses.
Main Methods:
- An explanatory modified grounded theory design was employed.
- Data were collected through interviews with 22 parents and 14 health professionals (HPs).
- Focus groups with 18 parents and 16 HPs further informed the theory development.
Main Results:
- The core finding was 'navigating uncertain illness trajectories for young children with SII'.
- Uncertainty, complex services, and social factors contributed to delayed help-seeking and admission.
- Both parents and HPs missed critical SII symptoms, and risk-averse services increased emergency referrals.
Conclusions:
- Parents and professionals face challenges in recognizing SII signs in young children.
- Social constraints and overburdened healthcare services impede timely help-seeking and diagnosis.
- Improved recognition of SII symptoms and streamlined care pathways are essential for reducing child mortality.
Background:
Infectious illness is the biggest cause of death in children due to a physical illness, particularly in children under five years. If mortality is to be reduced for this group of children, it is important to understand factors affecting their pathways to hospital. The aim of this study was to retrospectively identify organisational and environmental factors, and individual child, family, and professional factors affecting timing of admission to hospital for children under five years of age with a serious infectious illness (SII).
Methods:
An explanatory modified grounded theory design was used in collaboration with parents. Two stages of data collection were conducted: Stage 1, interviews with 22 parents whose child had recently been hospitalised with a SII and 14 health professionals (HPs) involved in their pre-admission trajectories; Stage 2, focus groups with 18 parents and 16 HPs with past experience of SII in young children. Constant comparative analysis generated the explanatory theory.
Results:
The core category was 'navigating uncertain illness trajectories for young children with serious infectious illness'. Uncertainty was prevalent throughout the parents' and HPs' stories about their experiences of navigating social rules and overburdened health services for these children. The complexity of and lack of continuity within services, family lives, social expectations and hierarchies provided the context and conditions for children's, often complex, illness trajectories. Parents reported powerlessness and perceived criticism leading to delayed help-seeking. Importantly, parents and professionals missed symptoms of serious illness. Risk averse services were found to refer more children to emergency departments.
Conclusions:
Parents and professionals have difficulties recognising signs of SII in young children and can feel socially constrained from seeking help. The increased burden on services has made it more difficult for professionals to spot the seriously ill child.
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