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Hospitalisation Experiences of Children with Neurological Illness: A Qualitative Exploration
Sunu Merla1, Arun Marathuparambil1, Priya Treesa Thomas1
1Department of Psychiatric Social Work, National Institute of Mental Health and Neuro Sciences, Bangalore, India.
Insights
Children with neurologic disorders experience hospitalizations as disruptive and distressing, lacking control over their care. Healthcare providers must acknowledge and address children
Area of Science:
- Pediatric Neurology
- Child Psychology
- Healthcare Experiences
Background:
- Neurologic disorders significantly impact children globally, causing chronic disability and psychosocial challenges.
- Frequent hospitalizations for pediatric neurologic conditions are distressing for children.
- Existing healthcare interactions often overlook the child's perspective.
Purpose of the Study:
- To explore the lived experiences of children undergoing inpatient care for neurologic disorders.
- To understand the psychosocial impact of hospitalization on pediatric patients.
- To identify areas for improving healthcare delivery for children with neurologic conditions.
Main Methods:
- Exploratory research design utilizing qualitative interviews.
- A picture-based tool guided interviews with children aged 8-14.
- Thematic analysis was employed to interpret interview data.
Main Results:
- A dominant theme of 'the illness and the hospital world' emerged.
- Key sub-themes included the experience of illness, hospitalization as unpleasant, disrupted normalcy, and a sense of unending treatment.
- Participants (8-14 years) described their hospital stays negatively.
Conclusions:
- Children with neurologic disorders often feel invisible in healthcare settings.
- There is a critical need for healthcare professionals to be sensitive to children's experiences during hospitalization.
- Enhanced psychosocial support is crucial for children with neurologic disorders, both during and after hospital stays.
Introduction:
Neurologic disorders contribute significantly to the global burden of diseases and especially have major consequences for children. Many paediatric neurologic conditions are chronic, causing disability, requiring multiple hospitalisations, and leading to significant psychosocial challenges. The constant health care visits can be distressing to the children.
Methodology:
Using an exploratory research design, this study aimed to understand the experiences of children receiving inpatient care for neurologic disorders in a tertiary care hospital. Data were elicited through interviews guided by a picture-based tool developed by the researcher, and the interviews were thematically analysed.
Results:
The participants were in the age group of 8-14 years, both male and female. The overarching theme that came out from the interviews was 'the illness and the hospital world'. Under this, major themes elicited were the illness, hospitalisation as an unpleasant event, disrupted normalcy and no end in sight.
Conclusion:
The study highlights the need to pay attention to the child-patient. Children are often invisible in health care interactions, with the conversations happening over their heads. The findings point towards the need for being sensitive to the children's experiences while in hospital and to focus on psychosocial care during hospitalisation and beyond for children with neurologic disorders.
