الفهرس 
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Abstract
SUMMARY
Autism spectrum disorder (ASD) is one of the most common lifelong neurodevelopmental disorders, characterized by persistent social communication and interaction difficulties, stereotypical behaviors, and restricted interests. These symptoms start in the early years of lifetime, during the first two years of lifespan (Nagib, et al., 2023). According to the World Health Organization, prevalence of ASD worldwide is 1 in every 100 children (Kieling, et al., 2024). ASD in Egypt estimated that great variability of it prevalence ranging from 5.4/1000 among children (Metwally, et al., 2023).
Caregiving of children with ASD often experience mental health issues, including higher levels of stress, anxiety, feeling of guilt, isolation, and depression, a poorer quality of life and wellbeing, and caregiving burden. In addition, physical problems, social stigmatization of both mothers and their children, financial challenges; such as economic burden and the need for extra income to cover the lifelong high cost of ASD-related special education and treatment ((Talha & Gopal, 2024).
Compassion fatigue is a form of exhaustion that result from direct exposure to traumatic events or secondary exposure and are focused on helping others through extremely stressful or traumatic situations. CF is containing two parts secondary traumatic stress (STS) and cumulative burnout (BO). STS has the same meaning of CF while BO refers to exhaustion of physical or emotional strength or motivation usually as a result of prolonged stress or frustration (Kara, et al., 2024).
The most crucial part of a nurse’s responsibility is in identifying the interventions to support caregivers are mainly psychoeducational and focus on developing caregiving skills or raising awareness and cognitive abilities, recognition, and capacity to effectively manage associated challenges and risks for both caregivers and children to promote socialization, facilitate learning and development, and minimize maladaptive behaviors (Magor, et al., 2021).
Significance of the study:
Parenting with ASD is suffering from psychological problem such as burden and stress because of caring and dealing with their children`s misbehavior. Moreover they may experience compassion fatigue among them. So, It`s important of psychiatric mental health nursing to support caregiver`s who have children with ASD to deal with their psychological problem as well as finding hope that increases their life satisfaction, and quality of life also optimism helps these caregivers to acknowledge the autistic experience regarding their children treatment and good prognosis (Genecov & Seligman, 2023). So, this study aim to assess the compassion fatigue, satisfaction and optimism among family caregiver`s of children with autism and help to increase the understanding of the lived experiences and perceptions of parents and caregivers of children with ASD, focus on the power of optimism in caring for children with autism, and look at them in a different way.
Aim of the study:
The aim of the study was to assess compassion fatigue, satisfaction and optimism among family caregivers of children with autism through:
1. Assessing compassion fatigue and satisfaction level among family caregivers of children with autism.
2. Assessing level of optimism among family caregivers of children with autism.
3. Determining the relation between compassion fatigue/ satisfaction and optimism among family caregivers of children with autism.
Research Questions:
This aim was achieved through answering the following questions:
1. What is the level of compassion fatigue and satisfaction among family caregivers of children with autism?
2. What is the level of optimism among family caregivers of children with autism?
3. Is there a relation between compassion fatigue, satisfaction and optimism among family caregivers of children with autism?
Subjects and methods:
The study portrayed under four main designs as following:
A- Research design:
A descriptive relational design was utilized to carry out the study.
B- Setting:
The study was conducted at autistic unit in faculty of postgraduate studies of childhood affiliated to Ain Shams University. The faculty provides different therapeutic services for different child psychiatry disorders such as autism, ADHD, learning difficulties in 35 units for example autistic, and pediatric unites, behavior modification, and family counseling.
Subject of the study:
Type of sample:
Purposive sample of 200 family caregivers caring children with autism in previously mentioned setting.
Inclusion criteria for child:
1- Age from 6 to12 years old (school age).
2- No neurological or physical disorders or disability.
Family caregivers:
Primary caregivers who provide direct care for the children at the same home and don`t have other children with special needs or disability.
Sample size:
The sample size was estimated using the following equation after reviewing the annual census about 384 children with autism who attending the autistic units, according to formula for determining sample size for research activities by Krejcie & Morgan (1970).
Tools for data collection:
The tools used for data collection were:
Tool I: Structured interview questionnaire.
It was translated into Arabic language to assess demographic data of child and sociodemographic for their family caregivers including as follows:
For the child: Age in years, sex, and number of siblings, child order, level of education.
For family caregiver: Age, sex, marital status, level of education, degree of contingency, and occupation, residence, income.
Tool II: Clinical data sheet: It assess clinical data for children with autism such as enrollment in the behavioral modification program, onset of diagnosis. And family history of psychiatric or mental illness.
Tool III: Professional Quality of Life Scale Version 5 (PROQOL)
It was developed by Stamm (2009) and was used to evaluate CF and CS among family caregivers of children with autism. It was modified and translated into Arabic then back translated by the researcher. It consists of 30 items that divided into two main classification: CF 20 items and CS 10 items.
Scoring system
The scale was a five-point rating scale: ranging from 1 (never) to 5 (very often). In all items expect items number 1, 4, 15, 17 and 29 items, it`s score was reversed in which 1 (very often) to 5 (never).
Total scale Low Moderate High
30-70 70.1-110 110.1-150
Tool IV: Life Orientation Test-Revised (LOT-R)
It was adopted from Scheier et al. (1994) and was used to assess optimism versus pessimism among caregivers of children with autism through identifying family caregiver’s willingness to support their children with autism. It was translated into Arabic then back translated by the researcher. This scale consists of 10 items.
Scoring system:
The scale was rated on a 5-point Likert scale: ranging from 0 (strongly disagree) to 4 (strongly agree). In all items expect items number 3, 7, 9, its score was reversed in which 0 (strongly agree) to 4 (strongly disagree).
Score Low optimism/
High pessimism Moderate optimism High optimism/
Low pessimism
0-13 13.1-18 18.1-24
The findings of the study can be summarized in the followings:
- The mean age of studied children with autism was 9.19 ±3.32 years and 81.5% of them were between 6 - 9 years old. 78.5% of studied children with autism were male. And 99.0% of them were in primary school.
- The mean age of studied caregivers of children with autism was 31.40 ±9.31years old and 60% of studied caregivers age confined between 26:35 years. 97.5% of primary caregivers of children with autism were mothers 95.5% of studied family caregivers were married, and 50.5% & 52.5% of them were secondary educated and employed. 76.0% of them had sufficient income to some extent.
- 86.5% of the studied children with autism was enrolled in the behavior modification program in the autistic unite.
- 55.5% of the studied children with autism were diagnosed with the disease between age of 6 to 12 years.
- 67% of the studied family caregivers of children with autism had high level of secondary traumatic stress.
- 91.5% of the studied family caregivers of children with autism had average level of burnout.
- 56.5% of the studied family caregivers of children with autism had average level of total compassion fatigue.
- 83.5% of the studied family caregivers of children with autism had average level of compassion satisfaction.
- 47.5% of the studied family caregivers had low optimism level/ high pessimism.
- There were statistically significant differences between onset of diagnosis of studied children and optimism versus pessimism among studied family caregivers, in which (P ≤ 0.05).
- There was a mild positive correlation between optimism of the studied family Caregiver and their total compassion satisfaction (p ≤ 0.001). Meanwhile, there was no statically significant correlation between optimism of studied family caregivers and their total compassion fatigue (p >0.05).
Conclusion:
Based on the results of the present study and research questions, the following can be concluded:
More than half of family caregivers of children with autism had an average of compassion fatigue and many of them had an average of compassion satisfaction. Slightly less than half of studied family caregivers of children with autism had low level of optimism/high pessimism. In addition, there was a mild statistically positive correlation between optimism of the studied family Caregivers and their total compassion satisfaction (p ≤ 0.001). Meanwhile, there was no statically significant correlation between optimism of studied family caregivers and their total compassion fatigue (p >0.05).
Recommendations
Based upon the results of the current study, the following recommendations were suggested:
For family:
Developing a counseling program for family caregivers of children with autism to improve their coping skills and compassion satisfaction and promote their optimism.
For community:
Developing awareness program about ASD as knowledge about nature of disease& the role caregiving for caregivers of children with autism.
For research:
Further research is needed to examine the relationship between compassion fatigue and optimism in large size of family caregivers of children with autism.