Knowledge, stress and adopted coping strategies of parents of children having congenital adrenal hyperplasia: An exploratory survey
Journal Title: Indian Journal of Child Health - Year 2017, Vol 4, Issue 2
Abstract
Background: Congenital adrenal hyperplasia (CAH) is an inherited disorder of adrenal glands, the most common type being due to a deficiency of the enzyme 21-α-hydroxylase. Girls affected with it are virilized to a variable extent. The taboo associated with ambiguous genitalia in female babies poses an immense societal pressure on parents for keeping the disease a secret. Objective: The aim of the study was to generate the evidence on the knowledge, stress, and coping strategies used by the parents of CAH children. Methodology: In a cross-sectional descriptive survey using mixed methods approach, 30 parents of children with CAH attending the outdoor department of pediatric medicine and surgery in a tertiary care hospital were enrolled. The CAH knowledge questionnaire, parental stress scale (PSS), and COPE inventory were the standardized tools used along with demographic profile sheet to assess the knowledge of parents related to CAH, stress, and coping strategies used by them. Results: Majority of the parents (67%) had poor knowledge (<7) and moderate stress (42-65) scores. Knowledge and stress were negatively correlated (r=−0.39, p=0.035). Coping strategies used by the parents in dealing with stress in moderate amount were mainly problem-focused (active coping [60%] and planning [60%], instrumental social support [53%], suppression of competing activities [50%]), and emotion-focused (positive reinterpretation [60%], emotional social support [67%], acceptance [53%], and religious coping [50%]). Less useful coping strategies such as focus on and venting of emotions, behavioral disengagement, mental disengagement, humor, and substance abuse were not used by the majority parents. Conclusion: Parents of children with CAH had poor knowledge and moderate stress related to the disease condition of their children and were using problem focused and emotion focused coping strategies to reduce their stress.
Authors and Affiliations
Poonam Joshi, Babita Yadav, Vandana Jain, Shilpa Sharma
Keywords
Related Articles
- EP ID EP454668
- DOI -
- Views 99
- Downloads 0
Preparedness of nurses to work in neonatal intensive care unit in a selected tertiary care facility: An observational study
Background: Neonates admitted in neonatal intensive care units (NICUs) require specialized neonatal nursing care. Objective: The objective of this study was to generate evidence on quality of neonatal nursing by assessin...
Infant feeding practices in an urban tertiary care hospital: A descriptive longitudinal study
Background: Infant and young child feeding are the corner stone for child development. More than a third of the world’s undernourished children reside in India. Inadequate infant and young child feeding practices with in...
Nonsurgical device closure of isolated ostium secundum atrial septal defect in a case of genetically proven tuberous sclerosis
Tuberous sclerosis (TSC) is an autosomal dominant multisystem disease associated with multiple cardiac Rhabdomyomas; however, congenital cardiac malformations are very rare in TSC. A 5-year-old girl with classical featur...
Antiepileptic drug compliance among caregivers of children with epilepsy: An observational cohort study
Background: Poor compliance with antiepileptic drugs (AEDs) not only increases morbidity and mortality rates among the children with epilepsy but it also leads to multiple hospital emergency room visits and enhanced heal...
Validity of non-invasive hemoglobin measured by pulse co-oximeter in neonates - An observational study
Background: Hemoglobin is a frequently ordered investigation in neonatal intensive care units. There is a need for hemoglobin estimation by point of care methods to reduce iatrogenic anemia and to alleviate pain associat...