الفهرس 
IntroductionOnly 14 pages are availabe for public view
 |  | from | 246 |  |  |
| | | from | 246 | | |
Abstract
Summary
Children with neuromuscular diseases experience common complications, primarily due to immobility and weakness. Most Neuromuscular diseases (NMD) have no cure. The goal of treatment is to improve symptoms, increase mobility and lengthen life (Mercuri et al, 2018).
Parents of children with NMDs report Parents of children with neurodevelopmental disorders (NMDs) report greater stress, depression, and anxiety than the general population. NMDs have serious impact on various aspects of family life, such as finances, relationships, parent’s quality of life and health-related quality-of-life (Ortega et al, 2022).
Parents may feel isolated when they find out their child has a neuromuscular disease. Feelings of helplessness and despair are common as they initially learn about the disease, but these feelings often turn to hope and determination as they discover ways to be active in their child’s treatment (Obeidat et al, 2020).
Aim of the study:
This study aimed to assess psychological problems and coping patterns among parents of children with neuromuscular diseases.
Research question:
1- What are the psychological problems among parents of children’s with neuromuscular diseases?
2- What are the coping patterns that used by parents of children’s with neuromuscular diseases to adapted with psychological problems they faced?
Research Design:
A descriptive research design was utilized in this study.
Study Settings:
The study was conducted at pediatric intensive care unit affiliated to Benha university hospital, Qalyubia, Egypt. The PICU contains 20 beds divided in 8 rooms. Benha university hospital very huge hospital with a land scape over two thousands and five hundred square meters. It consists of two buildings; the main building consists of eight floors with capacity of six hundred beds.
The researcher held the meeting by interviewing each parents individually at rest area .rest area is a large and well-ventilated room containing 30 to 35 chairs. The rest area was located at fourth floor, In front of the pediatric intensive care unit.
Subjects:
A convenience sample of (80) parents of children with neuromuscular diseases who admitted to the previously mentioned setting.
Tools for data collection:
The data were collected using the three following tools:
Tool (I): Socio - demographic and clinical characteristics data (appendix 1)
A- For parent: it includes age, sex, marital status, family members, level of education, and occupation.
B- For children: it includes ages, sex, Child sibling number, Ranking of the child among his sibling , age of discovered disease, heredity of the disease in the family, activities that require the most help, Time of child care, family help with care, problems while taking care of a child.
Tool (II): Assess psychological problems for parents of children with neuromuscular diseases (appendix 2):
1- Beck depression inventory scale.
It had been originally developed by Aaron beck (1978), and Arabic version (BDI-II) modified by Gharib Abd Elfattah (1996), to measure the intensity, severity&depth of depression. The inventory is composed of items relating to depressive symptoms such as hopelessness, irritability, cognitive such as guilt or feeling of being punished as well as physical symptoms such as fatigue, weight loss & lack of interest in sex .The scale consists of 21 questions, each with four possible responses.
2-Taylor manfist anxiety scale:
It is originally developed by Janet taylor (1953) , and Arabic version of taylor manfist anxiety scale modified by Mostafa Fahmi and Mohamed Ahmed Ghali, to measure the severity of anxiety of parents of children with neuromuscular diseases. It is consists of 50 statements, describe the different aspect of anxiety disorder including psychological, somatic or autonomic symptoms.
Tool (III):- Parental coping strategy (appendix 3)
It was developed by Yeh (2001), to measure the coping methods among parents of children with neuromuscular diseases. It was consisted of 68items divided into 12 subscales.
Results can be summarized as the following:
• High percent of the parents were in age group 36-50 with mean age 36.08 ±6.22. Also, 42.5% of them had secondary level of education. In relation to job, 40.0% of the studied caregivers were employee. Additionally, 58.8% of them were from urban residence.
• Concerning demographic characteristics of the studied children, 46.3% of children in age group 2-5 years, 61.3% of children were boys.
• More than half of the studied parent of children with neuromuscular disease, (58.8%) had moderate depression.
• Concerning total level of anxiety among the parent of children with neuromuscular disease, 30.0% of the studied parents had moderate level of anxiety.
• Regarding total level of coping among the parent of children with neuromuscular disease, 78.75% of the studied parents had effective coping.
• There was a significant statistical relationship between gender of the studied parents and their total depression level at p-value= 0.031.
• There was a significant statistical relationship between gender and education of the studied parents and their total anxiety level at p-value= 0.034 and 0.026 respectively.
• There was a significant statistical relationship between education of the studied parents and their total coping level at p-value= 0.028.
On The light of the Findings of the present study, it can concluded that:
Parents of children with neuromuscular diseases prone to moderate level of anxiety and depression and had effective coping strategies .parents of children with neuromuscular diseases needed different types of support that to continual care of their child .
The findings of the present study suggest the following recommendations:
• Psychosocial counseling program can be designed and administered to parents of child with neuromuscular disease to improve their psychological problems such as (anxiety, and depression)
• Applying educational interventional program for enhancing mental health of family caregiver of Children with neuromuscular disease