The quality of life, situations and emerging concerns of parents of children with neurodevelopmental disorders in Philippine Children's Medical Center during COVID-19 pandemic

BACKGROUND@#COVID-19 resulted in a public health emergency and quarantine measures which may negatively impact vulnerable populations.@*OBJECTIVES@#This study intends to determine the quality of life, situations and emerging concerns of parents of children with neurodevelopmental disorders during the ongoing pandemic. @*METHODOLOGY@#A cross-sectional survey using a socio-demographic questionnaire, situations and emerging concerns during the coronavirus pandemic and WHOQOL-BREF (Filipino version) for parental quality of life was documented via Google Forms. Parents of patients aged 2-18 years seen at the PCMC Neurodevelopmental Pediatrics OPD during July to December 2019 were recruited.@*RESULTS@#Data from 115 respondents showed a lower score in the environmental domain. Child characteristics comparable with QoL scores include sex, severity of ID and ADHD while parent characteristics comparable with the QoL scores include educational attainment, monthly family income, father’s employment status and family structure (P-value <0.05). Most respondents reported situations of physical distancing (82.61%) and curfew (80.87%). Inability to access essential services (43.48-74.48%) were further compounded by limited financial resources (51.30%) and public transport (60%). Government policy received included quarantine pass (90.43%), food allowance or relief package (86.09%), disinfection (60.87%), DSWD-SAP (42.61%) and cash distribution (41.74%).@*RECOMMENDATIONS@#Programs and policies should be planned accordingly to provide improvement of quality of life to parents and their child with neurodevelopmental disorder.

Assessment of quality of life in parents of epileptic children and its associated factors

Background: Aim of the study was to assess quality of life (QOL) of parents of epileptic child and its association with various factors like demographic, clinical, therapeutic and behavioral factors.Methods: Consenting parents of 160 epileptic children were enrolled after finishing child’s visit to the pediatrician. Parents were enquired on baseline demographic variables like age, gender, socio-economic status, parental education; clinical details like type of epilepsy, duration of seizure, seizure frequency and co-morbidity and therapeutic factors like treatment of epilepsy and adverse drug reactions. QOL was evaluated using QOLCE questionnaire and Childhood Illness-related Parenting Stress Inventory and analysed.Results: Out of 160 parents, 85% belong to 30-40 years of age and 62.5% were male. Deteriorated quality of life was reported by parents as mean score 63.46±7.69. QOL was significantly poor (p<0.05) in parents of younger child (<6 yrs), education status (upto primary school only), employment status of parent (unemployed) and lower socioeconomic status. Assessment of disease related parameters revealed that type of seizure, seizure frequency, duration and co-morbidity were factors significantly affecting quality of life of parents with lower QOL scores(p<0.05). QOL of parents of child with epilepsy undergoing polytherapy with multiple AEDs treatment, particle seizure control and having adverse drug reaction were associated with poor scores of health and well being (p<0.05). It was found that parents of epileptic child had deteriorated QOL score with respect to behaviour patterns irrespective to conditions of epilepsy due to constant stress and anxiety and poor state of mind.Conclusions: QOL of parents was compromised in Indian children with epilepsy. Demographic factors like age of child, parental education, socio-economic status and clinical factors like type of seizure, frequency & duration of seizure and co-morbid conditions significantly affect the QOL of parents. Significantly poor QOL scores was also due to therapeutic factors like treatment with polytherapy and adverse drug reactions with poor behavioral patterns which was observed in parents that should be taken care and should not be overlooked.

Depressive Symptoms and Subjective Quality of Life in Parents of Boys with Duchenne/Becker Muscular Dystrophy

OBJECTIVES: The purpose of the current study was to evaluate subject quality of life in depressed parents of boys with Duchenne/Becker muscular dystrophy (DMB/BMD). In addition, a specific relationship between subject quality of life and the severity of depressive symptom was explored. METHODS: The participants were 15 depressed parents who had moderate to severe depressive symptoms and 35 non-depressed parents of boys with DMD/BMD. All participants completed the World Health Organization Quality Of Life Scale, Brief Version and the Beck Depression Inventory. Other instruments included the Family Relationship Scale and the Child Behavior Checklist. RESULTS: Among various model predictors, only higher score on the Beck Depression Inventory predicted lower scores on all domains of the World Health Organization Quality Of Life Scale, Brief Version. In addition, depressed parents had significantly lower scores on all domains of the World Health Organization Quality Of Life Scale, Brief Version including physical health, psychological health, social relationships, and environment, relative to non-depressed parents. CONCLUSION: Findings of the current study suggest that all domains of subjective quality of life may be influenced by depressive symptoms in parents of boys with DMD/BMD.