الفهرس 
IntroductionOnly 14 pages are availabe for public view
 |  | from | 207 |  |  |
| | | from | 207 | | |
Abstract
DS (DS) is the most common chromosomal abnormality among live-born infants. The task of rearing a child with DS is among the most demanding and stressful tasks that family may face. Extra-care and extra-attention is necessary and may be an additional source for family caregivers’ worries and fears. They more frequently suffer from more strained emotional relationships, a higher rate of depression, modified work and leisure activities, a limited social life, greater time constraints due to care demands, as well as economic and financial difficulties.
So, it requires use of effective coping strategies that may have a buffering effect on psychological well-being in family caregivers of children with DS. These coping strategies may include: 1) problem-focused coping, which is directed on dealing with the source of stress, reducing environmental demands or increasing personal resources, 2) emotion-focused coping, which is concentrated on controlling emotional response to a stressful situation.
Aim of the study
This study aimed at assessing the relationship between psychological well-being and coping strategies among family caregivers of children with DS through answering the following questions:
1. What is the level of psychological well-being among family caregivers of children with DS?
2. What are coping strategies among family caregivers of children with DS?
3. Is there a relationship between psychological well-being and coping strategies among family caregivers of children with DS?
Research Design
A descriptive design was utilized in this study.
Research Setting: -
This study was conducted in the Genes Clinics of DS in the specialized clinics of the university pediatric hospital affiliated to Ain Shams University Hospitals.
Subjects of the study: -
A sample of 120 family caregivers of children with DS who agreed to participate in the study and fulfilled the following criteria:
-Inclusion criteria for children with DS:
1) Intelligence Quotient (IQ) from (25-70).
2) Sex: both sexes (males and females).
3) Free from any neurological or psychiatric illness.
-Exclusion criteria for children with DS:
1) Have another disability that is not associated with DS
2) Have a sibling or another family member with disability
-Inclusion criteria for family caregivers of children with DS:
1. Family members who give direct care to the child.
2. Have only one disabled child.
3. Free from any psychiatric illness.
4. Took care of the child for at least one year.
-Exclusion criteria for family caregivers of children with DS:
1. Have more than one disabled child
2. Have a physical disability or psychiatric illness
D-Tools of data collection: -
1-Interviewing Socio Demographic Questionnaire “Appendix I”
It was designed by the researcher after reviewing related literature to assess socio demographic data of both family caregivers and DS children and it was divided into two parts:-
A-First part (Socio Demographic Data of Family Caregivers): included data related to socio- demographic characteristics of family caregivers such as; age, sex, address, level of education, occupation, relation to child and history of psychiatric or mental illness within the family.
B- Second part (Socio Demographic Data of DS Child): included data related to socio demographic characteristics of DS child such as; age, sex, education, rank and data related to physical complains and disabilities of the child such as Heart Disease, Gastro Intestinal Tract Disorders (GIT) and other chronic Diseases “renal or hepatic or bone diseases”.
2- Ryff’s 2- Ryff’s Psychological well-being scale “Appendix II”:
It was developed by Ryff (1989) and adapted by the researcher to assess the level of psychological well-being among family caregivers of children with DS. It consisted of 42 items classified into 6 subscales) Autonomy, Environmental mastery, Personal growth, Positive relations, Self-acceptance and Purpose in life(, each subscale consisted of 7 items.
3- Brief-COPE inventory “Appendix III”:
It was originally developed by Carver (1997) and adapted by the researcher to assess coping strategies among family caregivers of children with DS. It consisted of two parts: emotion-focused coping strategies and problem-focused coping strategies. Emotion-focused coping strategies included 10 coping strategies as the following: (Self distraction, Denial, Substance use, Use of emotional support, Behavioral disengagement, Venting, Humor, Acceptance, Religion and Self-blame); While problem-focused coping strategies included 4 coping strategies as the following: (Active coping, Use of instrumental support, Positive reframing and planning).Each coping strategy in both emotion-focused and problem-focused coping strategies included two statements.
The study findings were as follows:
• The highest proportion (91.7%) of family caregivers was mother, more than half (60.9%) were in age group (35-<55) years old, the married caregivers are more than two thirds of the study sample (69.2%), also the illiterate caregivers represents (55.8%), the majority of the study sample (86.7%) are unemployed and most of the sample (75.8%) have not enough family income.
• More than half of DS children were male and had IQ from (40-<55) which constitute (54.2%) and (55.0%) respectively, as regards to their number of siblings, more than third (35.8%) had more than 2 siblings.
• Heart disease, GIT Disorders and urinary incontinence were the most common physical complains and disabilities among children with DS which constitute (69.2%), (54.2%) and (48.3%) respectively. Regarding previous hospitalization, it was found that more than two thirds (67.5%) were previously hospitalized.
• As regards with autonomy, the majority of family caregivers (86.7%) are influenced by others strong opinions, (75.8%) care about what other people think of them and have difficulty to voice their own opinions on controversial matters. But concerning environmental mastery, the majority of family caregivers (100%) feel that they are in charge of the situation in which they live, while (65.0%) aren’t able to manage their daily living responsibilities, (69.2%) not fit very well with the people and the community around them and (82.5%) haven’t been able to build a home and a lifestyle for themselves that is much to their liking.
• Regarding personal growth, the highest percentage (90.0%) of family caregivers didn’t have the sense of developing their cognitive functioning and personality over the years, most of caregivers (75.8%) haven’t really improved much professionally and socially over the years, majority of caregivers (75%) don’t enjoy being in new situations that require them to change their old familiar ways of doing things and think that life hasn’t been a continuous process of learning, changing, and growth. But concerning positive relations, the highest percentage of caregivers feel lonely because they have few or no close friends with whom to share their concerns and don’t enjoy personal or mutual conversations with family members or friends which constitute (85.8%) and (80.0%) respectively.
• Concerning purpose in life, the highest percentage of family caregivers have a good sense of what they are trying to accomplish in life and think that their daily activities are important and not trivial representing (86.7%) and (82.5%) respectively. However, most of caregivers (76.7%) don’t enjoy making plans for the future and more than half of the study sample (58.3%) feel as they have done all there is to do in life. As regards with self-acceptance, the majority of family caregivers didn’t feel like many of the people they know have gotten more out of life than they have, didn’t feel confident and positive about themselves and aren’t pleased with how things have turned out on looking at the story of their life representing (85.8%), (82.5%) and (79.2%) respectively.
• More than two thirds of family caregivers (70.8%) had no self-acceptance, while more than one quarter (27.5%) had positive relations and purpose in life and one quarter (25.0%) had personal growth.
• Concerning to level of psychological well-being among the study sample, near two thirds of family caregivers (65.83%) had psychological well-being less than usual and only (3.3%) have psychological well-being better than usual.
• There was a highly significant relation between level of psychological well-being and socio demographic characteristics of family caregivers of children with DS regarding age of mother, level of education, family income and family history for DS.
• Concerning acceptance, all family caregivers (100.0%) had acceptance as they had been considering the child disability as a test from Allah as well as accepting the reality and becoming satisfied of it. With regards to religion and humor, all family caregivers (100%) have been seeking help from Allah to solve the child problems and making fun during bizarre child behaviors. But regarding substance use, no one (0.0%) have been using sedatives or barbiturates to be out of painful reality.
• Family caregivers used different emotion – focused coping strategies and the most common used strategies were acceptance (100%) and religion (96.67%) but substance abuse was the least used one (1.67%).
• There was a highly significant relation between emotion-focused coping strategies used by family caregivers and their socio-demographic characteristics regarding to marital status, level of education, residence as well as family history for DS and psychiatric Illness.
• As regards with use of instrumental support, majority of caregivers (96.7%) have been getting help and advice from psychiatrist, psychologist or social worker and according to positive reframing, (76.7%) have been concentrating on a good thing as achieving certain degree of the child autonomy. On the other hand, according to planning and active coping, (39.2%) have been trying with their family members to come up with a strategy about solution for the child problems and only (30.8%) have been attending lectures that touch DS children related problems or use of books or internet to help the child.
• Family caregivers use different problem-focused coping strategies, the most common used strategy is use of instrumental support (89.17%) but active coping is the least used one (45.83%).
• There was a highly significant relation between problem-focused coping strategies used by family caregivers and their socio demographic characteristics regarding to level of education and family history for DS and there is a statistically significant relation between such variables regarding to marital status, family income and family history for psychiatric illness.
In conclusion, In the light of the current study results, it can be concluded that, family caregivers of children with DS combined between emotion-focused and problem-focused coping strategies in managing burden of child caregiving and the majority of family caregivers had psychological well-being less than usual. There was a negative significant correlation between level of psychological well-being and emotion-focused coping strategies except for emotional support, acceptance, self-distraction, venting, humor and religion. Meanwhile, there was a positive significant correlation between level of psychological well-being and problem-focused coping strategies except for positive reframing.
In the light of the study findings, the following recommendations were suggested:
1. Establishment of counseling clinics for family caregivers of children with DS to improve their coping strategies.
2. Applying educational interventional program for enhancement of psychological well-being of family caregivers of children with DS.
3. Future research to assess factors that may influence role of caregiving and different challenges faced by family caregivers in rearing different aged children with DS.
4. Health care team should engage family caregivers in discussion related to available treatment options for children with DS in a trial to reduce burden of care.