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95138

Assessment of Mothers Care toward their Children having Phenylketonuria

Article

Last updated: 22 Jan 2023

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Abstract

Phenylketoneuria is an autosomal recessive disorder and cause irreversible brain
damage if untreated. Aim: This study aimed to assess mothers care for children having
Phenylketoneuria through assessing the mothers' knowledge, self-reported practice and
coping patterns toward their children with PKU. Design: A descriptive study. Sampling: A
purposive sample comprised of 94 mothers accompying children with PKU. Setting: This
study was conducted at Specialized Genetic Outpatient Clinic, Children's Hospital affiliated
to Ain Shams University Hospital. Data collection tool: 1st tool: Interviewing Questionnaire
Format to assess socio- demographic data of the study children and their mothers, medical
history of children with PKU, mothers' knowledge about PKU, assessment of children'
health needs and problems, 2 nd tool: Mothers Reported Practice Format related to care of
their children with PKU, as diet management and follow up for growth and development as
weight, height. 3 rd tool: Psychometric Assessment for mothers as Coping Pattern Scale, Beck
Depression Inventory and State-Trait Anxiety Inventory. Results: This study revealed that
above half of studied children's were females, it ranged from birth to more than 9 years with
a mean age of 4.45 ± 2.07 years, the mean age of studied mothers was (32.26 ± 4.2 years),
Conclusion: about more than half of mothers had poor knowledge about PKU. As well more
than one tenth of the mothers had poor total reported practice. There is a significant
correlation between mothers' knowledge, practice and their caring roles, anxiety and
depression. Recommendation: Continuous health teaching to children and their caregivers
regarding PKU.

DOI

10.21608/ejhc.2020.95138

Keywords

Phenylketoneuria, health needs, Problems, Dietary Management, Psychometric Assessment

Authors

First Name

Elsayed,

Last Name

A.K.

MiddleName

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Affiliation

B.Sc. Nursing Sciences

Email

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City

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Orcid

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First Name

AlRafay,

Last Name

S.S.

MiddleName

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Affiliation

Pediatric Nursing Department, Faculty of Nursing Ain Shams University

Email

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City

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Orcid

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First Name

Khalifa,

Last Name

O.A.

MiddleName

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Affiliation

Clinical Genetics, Genetics Unit Faculty of Medicine

Email

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City

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Orcid

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First Name

Mohamed,

Last Name

I.A

MiddleName

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Affiliation

Pediatric Nursing Department, Faculty of Nursing Ain Shams University

Email

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City

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Orcid

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Volume

11

Article Issue

2

Related Issue

12465

Issue Date

2020-06-01

Receive Date

2020-06-11

Publish Date

2020-06-01

Page Start

241

Page End

254

Print ISSN

1687-9546

Link

https://ejhc.journals.ekb.eg/article_95138.html

Detail API

https://ejhc.journals.ekb.eg/service?article_code=95138

Order

17

Type

Original Article

Type Code

631

Publication Type

Journal

Publication Title

Egyptian Journal of Health Care

Publication Link

https://ejhc.journals.ekb.eg/

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Article

Created At

22 Jan 2023