Hospitalisation Experiences of Children with Neurological Illness: A Qualitative Exploration
Sunu Merla, Arun Marathuparambil, Priya Treesa ThomasIntroduction:
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.