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Abstract

Introduction
Illness intrusiveness in a parental figure or a family caregiver is when the disease or illness-related factors disrupt the valuedlifestyle, activities and interests of the caregiver. Illness intrusiveness can occur in a parental figure who is primarily responsiblefor caring for a sick child, and it is usually worse when the child is living with a chronic disease. Illness intrusiveness distortsthe parental figure's life and inadvertently the child's quality of life.
Methods
A descriptive cross-sectional study was conducted at the Paediatric, Haematology and Family Medicine outpatient clinics ofthe University College Hospital, Ibadan (UCH), between June and December 2017.The participants were children with Sickle Cell Disease (SCD) and healthy or acutely ill children with their respective familycaregivers or parental figures. The caregivers or parental figures were administered the Illness Intrusiveness Rating Scale (IIRS)questionnaire while the children were administered the Pediatric Quality of Life (PedsQL) questionnaire.
Results
Seventy (70) children living with SCD and 70 healthy or acutely ill children and their respective parental figures participatedin this study.Mothers constituted the majority of the primary caregivers for both children living with SCD (74.3%) and those not-living withSCD (80.0%). The parental figure of SCD children had higher (worse) scores for illness intrusiveness than the non-SCDcaregivers (26.17 ±15.8 versus 26.11±11.6; p=0.000). The correlation between the caregiver’s illness intrusiveness score andPedQoL is stronger and more significant for the SCD group (r=.610; p=0.000 versus r=.383; p=0.001), particularly for Physicalhealth-related PedQoL and School-related PedQoL.
Conclusions
Parental illness intrusiveness is a measure of adjustment to the caregiving process by the parental figure and it contributes tothe child’s quality of life and the prognosis of the disease.Keywords: Illness, intrusiveness, parental, chronic, QoL, Paediatrics

Keywords

llness, Intrusiveness parental chronic QoL Paediatrics

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