Ignite Creation Date:
2024-05-06 @ 5:58 PM
Last Modification Date:
2024-10-26 @ 2:39 PM
Study NCT ID:
NCT05497050
Status:
COMPLETED
Last Update Posted:
2023-10-26
First Post:
2022-08-08
Brief Title:
The Effect of Nursing Empowerment Program
Sponsor:
Cukurova University
Organization:
Cukurova University
Study Overview
Official Title:
The Effect of Nursing Empowerment Program Applied to Families of PKU Children Coping Attitudes of Families and Phenylalanine Levels of Children
Status:
COMPLETED
Status Verified Date:
2023-10
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
The study has shown that the strengthening program applied to the families of children diagnosed with phenylketonuria PKU and the education given It will be conducted in order to examine the effect of the familys coping attitudes knowledge scores about the disease and its management The research is of the randomized controlled experimental type Children from PKU constitute the universe in the city center of Van The families of children between the ages of 0-3 who were diagnosed with PKU will form the sample of the study A nursing strengthening program will be applied to families in the experimental group for 10 weeks The scope of this program It consists of face-to-face training on disease management giving the educational guide booklet for the families of babies diagnosed with PKU telephone calls during the education process and counseling services No application will be made to the families in the control group After the application of the last tests to the control group Face-to-face training and a booklet will be given to the experimental group Data It will be collected with Child and Family Introductory Information Form Parents Information Level Assessment Form about Phenylketonuria and Coping Attitudes Assessment Scale
In the literature there is no study showing the effect of the education given to the families of babies diagnosed with PKU on their coping attitudes Based on the need to fill this knowledge gap in the literature it is thought that the study will contribute to the field of child health and disease nursing
In the literature there is no study showing the effect of the education given to the families of babies diagnosed with PKU on their coping attitudes Based on the need to fill this knowledge gap in the literature it is thought that the study will contribute to the field of child health and disease nursing
Detailed Description:
Phenylketonuria is a disorder of phenylalanine metabolism and causes intellectual destruction if left untreated It is an autosomal recessive metabolic disease that develops as a result of the absence of the enzyme phenylalanine hydroxylase FAH which provides the necessary amino acid metabolism for protein production in the body which causes high phenylalanine in the blood In our country it is one of the places where PKU is commonly encountered Çavuşoğlu 2015 Hafid et al 2015 Törner and Büyükgönenç 2013 While the incidence of this disease in European countries is 110000-30000 it is 13000-4500 in our country Alparslan 2021 This situation is directly related to consanguineous marriages It is stated that one out of every five marriages in our country is consanguineous marriage If left untreated it can cause extreme mental retardation convulsions and death Alparslan 2021 Çavuşoğlu 2015 Hafid et al 2015 Törner and Büyükgönenç 2013
The care of the child with phenylketonuria is carried out by the parents Extra care diet therapy control of blood phenylalanine level etc for children in this diagnosis group is provided by their parents The treatment and care process of children with PKU affects family routines relationships and parenting styles Parents of children experience emotional and economic burden Therefore it is stated that the care burden of parents in this diagnosis group is higher than that of healthy parents and their quality of life is lower Hatzmann et al 2009 In addition studies have shown that families of children with PKU have high levels of anxiety depression Mahmoudi-Gharaei et al 2011 and stress Irannejad et al 2018 In another study It is reported that the familys routines have changed not eating in front of the child not eating in restaurants etc and that they experience anxiety about the effect of diet incompatibility on blood phenylalanine levels feeling overwhelmed and guilt in the care process Carpenter et al 2018 Therefore having a child with PKU may affect coping attitudes
Child health and diseases nurse should support children with PKU and their families on issues such as informing training and counseling about the disease and its management
The care of the child with phenylketonuria is carried out by the parents Extra care diet therapy control of blood phenylalanine level etc for children in this diagnosis group is provided by their parents The treatment and care process of children with PKU affects family routines relationships and parenting styles Parents of children experience emotional and economic burden Therefore it is stated that the care burden of parents in this diagnosis group is higher than that of healthy parents and their quality of life is lower Hatzmann et al 2009 In addition studies have shown that families of children with PKU have high levels of anxiety depression Mahmoudi-Gharaei et al 2011 and stress Irannejad et al 2018 In another study It is reported that the familys routines have changed not eating in front of the child not eating in restaurants etc and that they experience anxiety about the effect of diet incompatibility on blood phenylalanine levels feeling overwhelmed and guilt in the care process Carpenter et al 2018 Therefore having a child with PKU may affect coping attitudes
Child health and diseases nurse should support children with PKU and their families on issues such as informing training and counseling about the disease and its management
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None