الفهرس 
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Abstract
Neonatal cholestasis constitutes a significant morbidity burden for the affected children and their parents. If not properly managed, it can lead to significant complications or even death. Without understanding the magnitude of this problem, management strategies will be defective (Gottesman et al., 2015; Hoerning et al., 2017).
Purpose of the Study:
The purpose of the current study was to assess the effect of guided palliative care on quality of life among children with cholestasis.
Research Design:
A quasi-experimental design was utilized (study/control group).
Research Setting:
The study was conducted in the Pediatric Department at National Liver Institute - Menoufia University.
Subject:
A convenience sample of 50 children with cholestasis and their mothers who met the inclusion criteria were included in this study.
A simple random sample used to assign children equally into study and control group.
1- Study group: involved 25 children and their mothers (20 infant and 5 toddler), they received palliative care intervention; 5 sessions for 7 hours twice / week along with routine hospital care.2- Control group: involved 25 children and their mothers (20 infant and 5 toddler), they didn’t receive any intervention only routine hospital care.
Instruments of the Study:
Four instruments were developed for data collection.
Instrument 1: Infant Toddler Quality of life Questionnaire (ITQOl). It was adopted from Landgraf (1994). It was divided into three parts:-
Part one: characteristics of children. It included data such as child age, gender, date of admission and medications.
Part two: characteristics of parents. It included age, level of education, job and socioeconomic status.
Part three: It was divided into eight subparts (physical performance, growth and development, physical pain, temperament and mood, general behavior, parental involvement, effect on family and general health perceptions).
Instrument 2: Pain assessment: - It was measured by two scales:
1- Pain assessment scale: It was adopted from Bell (1994) to assess both physiological and behavioral indicators of pain.
2- Wong- Baker Faces Pain Rating Scale: It was adopted from Hicks et al., (2001) to assess pain in toddler stage.
Instrument 3: Palliative care questionnaire: it was divided into two parts ”problem severity and Palliative outcome scale (POS)”.
Instrument 4: Pediateric End Stage Liver Disease (PELD).The main results of the study showed that:
1- Approximately about two third of studied children in the study group were female (68%). While, more than half in the control group were male (52%).
2- Half of studied children were short stature in the study group (56%), While, only one third in the control group (36%).
3- Forty percent or more of studied children in both study and control group were underweight.
4- More than half or less of studied mothers in the study and control group had secondary education.
5- All children (100.0%) had high quality of life score post intervention in the study group compared to control group (68.0%).
6- Pain was released in children>1year and < 1 year post intervention in the study group compared to control group.
7- There were positive correlation between quality of life score and total palliative outcome score.
The study concluded that
Children with cholestasis who received palliative care intervention had better quality of life than those who didn’t received palliative care intervention.
Based on the result of the study, it was recommended that:
Adopting a suitable assessment tools for early detection and management of any health problems for children with cholestasis to enhance their quality of life.
Palliative care interventions should be implemented for cholestatic children as early as possible.