A study to assess the effectiveness of a nurse led empowerment programme on knowledge stress and coping of parents and bio physiological parameters of female children with congenital adrenal hyperplasia 21 hydroxylase deficiency at a selected tertiary care hospital

Abstract

Congenital adrenal hyperplasia CAH 21 hydroxylase deficiency results in severe life threatening cortisol and aldosterone deficiency Simultaneous excessive androgen production during fetal life leads to virilization of the external genitalia in affected female infants Early diagnosis is required for prompt initiation of lifesaving replacement therapy with glucocorticoids and mineralocorticoids Regular medical treatment and appropriate surgical management will help these children to grow normally into adulthood With the unexpected diagnosis of CAH the parents often experience severe stress and are faced with the need to learn quickly enormous information about CAH and lifelong management essential for their infant Under such stressful circumstances the parents require all possible supportive care from every reliable source Hence a nurse led empowerment programme was considered essential for them to acquire useful knowledge to overcome their stress to gain sufficient coping skills and to take functional control of their childs biophysiological parameters This study was done to evaluate parents receiving an additional intensive empowerment programme experimental group compared to the traditional counselling of parents control group Subjects where allocated in to experimental and control group by using RCT method Pre empowerment assessment was done for experimental group and initial assessment for control group Empowerment sessions where carried out in three phases followed by post empowerment 1 and post empowerment 2 was carried out, for experimental group and follow up 1 and 2 for control group The empowerment sessions significantly benefited the experimental group as compared to the control group by indicating improved knowledge of CAH and its management among parents of female children P equal to 0 point 0001reduction in their stress levels P equal to 0 point 0001enhancement of their coping skills P equal to 0 point 0001 and significant improvement in biophysiological parameters showing adequacy of CAH management