الفهرس 
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Abstract
Summary
Wilms’tumor is a type of cancer develops from cells in the kidney. It mainly affects children, most probably between 3 to 4 years old. In most cases, it affects only one or two kidneys (unilateral or bilateral). The most common sign of Wilms’tumor include a swelling or a hard mass in the abdomen. Risk factors for Wilms’tumor development include young children, family history of Wilms’tumor, certain genetic syndromes (e.g.WAGR syndrome) and birth defects. Diagnosis of Wilms’tumor needs chest X-ray, chest CT scan and bone scan to determine whether the tumor was disseminated beyond the kidneys which helps to determine the treatment options (Surgery, chemotherapy & radiotherapy) (Cone et al., 2016).
Acombination of chemotherapy drugs is used to treat children with Wilms’tumors such as dactinomycin and vincristine. Surgery is the treatment of choice for most cases of Wilms’tumors. The first goal of treatment is to remove the primary tumor and improve the quality of life (Zakaria et al., 2016).
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The current study aimed to to assess the roles of the caregivers’regarding care of their children suffering from Wilms’tumor.
Subjects and Methods:
This is a descriptive study aimed to:
Assess the role of caregivers having children with Wilms’ tumor
Design suggestion guidelines for caregivers having children with Wilms’ tumor.
Disseminate a guideline booklet for parent having children with Wilms’ tumor based on need assessment.
Subjects and Methods are discussed according to the following designs:
I-Technical design
II-Operational design
III-Administrative design
IV-Statistical design
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I-Technical design:
The technical design for this study includes research design, research setting, subjects and tools of data collection.
Research Design:
A descriptive design was utilized for this study.
Research Setting:
The study was conducted at both the Out-Patient clinic and In- Patient pediatric departments at Children’s Cancer Hospital (57357). Where, the hospital is considered as the highest admission rate of children suffering from Wilms’tumor.
Research Subjects:
Purposive Sample including 80 children with inclusion criteria were suffering from Wilms’tumor, both sex, aged from one day to less than or equal age 15 years, postoperative, start session of chemotherapy, radiotherapy and free from chronic illness and their accompanying caregivers regardless their characteristics.
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Tools of data collection:
Tools were developed and utilized by the researcher to collect data in the current study, it included:
A structure interviewing questionnaire sheet. It was developed by the researcher after reviewing the current related literature. It was written in simple Arabic language to suit the understanding level of the studied caregivers. It was consisted of three parts:
Part 1: It concerned with the characteristics of the studied children (the child’s age, gender, ranking, residence and duration of the disease). Also, it included data about the studied caregivers (age, gender, residence, educational level, occupation and family socioeconomic standard).
Part 2: The knowledge of the caregivers about Wilms’tumor (Definition, causes, signs, symptoms, management and the complications).
Part 3: Caregivers’reported practices related to care of their children with Wilms’tumor during chemotherapy and its complication as (alopecia, vomiting, anorexia, oral mucositis, fever and low immunity).
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Questions were in the form of open, closed ended multiple choices. Each questionnaire sheet was filled on spot individually. Time consumed for completion of each form was around 60-90 minutes according to caregivers’ knowledge and practice.
Scoring system:
Ascoring system was developed by the researcher to obtain the outcome of caregivers’ knowledge, according to the answers obtained from caregivers, zero degree was given to each incorrect answer, one degree was given to each correct but incomplete answer and two degree was given to each correct and complete answer. Accordingly, their knowledge & practices were categorized into either Poor (Score < 50%), average (Score 50 < 75%) and good level of knowledge & practices (Score 75 ≤ 100%).
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II. Operational Design
1- Preparatory phase
A review of the past, current related literature covering various aspects of the research problem was done by using available books, articles, magazines, and periodicals to be acquainted with the research problem, and to develop the study tools. Tool content validity and reliability ascertained by five nursing staff expertise from pediatric field.
2- Pilot study:
A pilot study was carried out at December 2012, involving 10% of the expected study sample(8 children suffering from Wilms’tumor& their caregivers) to test the validity of the study tools, the result of the data obtained from the pilot study helped in modifications of study tools where items were correct, omitted and added as necessary. All the children involved in the pilot study were excluded from the study sample.
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3-Ethical consideration:
Verbal approval was obtained from the studied caregivers accompanying with their children before inclusion in the study; a clear and simple explanation was given according to their level of understanding, physical and mental readiness. They secured that, all the gathered data was confidential and used for research purpose.
4- Field Work:
The actual field work was carried out over 6 month from the first week of January (2013) up to the end of June (2013). The researcher was available in the study setting four days / weekly at morning shift (2 days in inpatient & 2 days in outpatient).
Aim of the study and its expected outcome expressed/ described by the researcher, each caregiver was interviewed individually to gather the necessary data. The total time required fulfil the questionnaire was ranging from 60-90 minutes. The researcher checked each sheet after the caregivers had completed it, to be sure that no missing information were present. The researcher filled the data from illiterated caregivers after asking them.
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III. Administrative Design:
An official permission to carry out the study was obtained from administrator of 57357 hospitals through an issued letter from the Dean of Faculty of Nursing/ Ain Shams University to conduct the study