الفهرس 
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Abstract
Summary
Down Syndrome influences the capacity of a child to conduct daily tasks and results in significant family time, emotional and financial costs and ineffective coping. The length of time family caregivers have to adopt the caregiving role for the child is also much longer that extends even when the child is well into adulthood (Darla & Bhat, 2020). During this time span, Family caregivers of children with DS experience higher levels of stress, poorer coping and lower psychological wellbeing than families with typically developing children. Family caregivers may avoid psychological distress by using effective coping strategies that aim at either altering or managing the stressful situation or reducing emotional distress (Pastor-Cerezuela, et al., 2021).
Nurses are in an excellent position to give emotional support and provide guidance throughout this challenging situation. By recognizing the coping strategies used by the family caregivers, nurse can develop effective intervention programs to help these family caregivers enhance their coping strategies, improve their psychological well-being, overcome their anxiety and depression, and find the right ways to support them (Hegazy & Baraka, 2021). Hence, the study intended to assess the effect of psycho-educational nursing intervention on coping strategies and psychological well-being among family caregivers of children with DS.
Aim of the study
This study aimed at assessing the effect of psycho-educational nursing intervention on coping strategies and psychological well-being among family caregivers of children with DS through:-
1. Assessing coping strategies among family caregivers of children with DS.
2. Assessing psychological well-being among family caregivers of children with DS.
3. Developing and implementing a psycho-educational nursing intervention for family caregivers of children with DS.
4. Evaluating the effect of the psycho-educational nursing intervention on coping strategies and psychological wellbeing among family caregivers of children with DS.
Research Hypothesis:
Psycho-educational nursing intervention has a positive effect on enhancing coping strategies and psychological well-being among family caregivers of children with Down syndrome.
Research Design
A quasi-experimental design has been 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 60 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. Age :( 6-12) years old.
3. Sex: both sexes.
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 a 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.
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 Mohammed, et al, (2018) to assess socio demographic data of both family caregivers and DS children and it includes two parts:-
A- First part (Socio Demographic Data of Family Caregivers): includes 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 (Demographic Data of DS Child): includes data related to 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- Brief-COPE inventory “Appendix II”:
It was originally developed by Carver, (1997) and adapted by Mohammed, et al, (2018) to assess coping strategies among family caregivers of children with DS. It consists of two parts: emotion-focused coping strategies and problem-focused coping strategies. Emotion-focused coping strategies include 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 include 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 includes two statements.
3- Ryff’s Psychological well-being scale “Appendix III”:
It was developed by Ryff, (1989) and adapted by Mohammed, et al, (2018) to assess the level of psychological well-being among family caregivers of children with DS. It consists of 42 items classified into 6 subscales including: (Autonomy, Environmental mastery, Personal growth, Positive relations, Self-acceptance and Purpose in life (, each subscale consists of 7 items.
4- Psycho-educational program:
The aim of the psycho-educational program was to enhance coping strategies and psychological well-being among family caregivers of children with DS. It was designed by the researcher based on related recent literatures. It was written in a simple Arabic language and included two parts as the following:
Part I- Theoretical part: It was concerned with knowledge about the problems associated with DS, needs of children with DS, family caregivers role in caring of a child with DS, available services, types of coping strategies, steps of effective coping, the six dimensions of psychological well-being and methods of enhancing coping strategies and psychological well-being.
Part II- Practical part: It was concerned with practical guidelines to deal with child problems, role of family caregiver in modifying behaviors of a child with DS, methods of effective coping, methods of enhancing psychological well-being, methods of developing positive thoughts and enhancing self-esteem, anger management, ways of expressing emotions, time management and performing different relaxation techniques.
-The content of the intervention program was achieved through (33) sessions, covered in (25) hours; 3 theoretical hours, 20 practical hours and 2 hours for data collection and orientation. By the end of the program, family caregivers of children with DS acquired the necessary knowledge and skills required to improve their coping strategies and psychological well-being. This is achieved through:
Session (1) Orientation session:
Objective: At the end of this session, each family caregiver of children with DS acquainted the educational intervention program content and its objectives and answered questions of data collection tools (first assessment).
First, the researcher established rapport with the family caregivers, introduced himself, and each family caregiver introduced herself as well. The researcher explained the program, its objectives and meeting time.
Sessions (2 &3) Awareness of child problems and needs:
Objective: At the end of these sessions, each family caregiver of children with DS obtained overview about child problems and determined her own child needs.
These sessions included definition of DS, problems of children with DS, definite criteria of children with DS, impact of mental retardation on children with DS and needs of children with DS. This was done by using open discussion, brain storming and handout.
Sessions (4:8) How to deal with child problems:
Objective: At the end of these sessions, each family caregiver of children with DS was able to apply methods of dealing with child problems and developing abilities and talents, social skills, educational level and self-responsibility of his own child.
These sessions included methods of dealing with DS child problems, encouraging DS child to be compliant to a specific routine, occupational therapy for children with DS, improving DS child communication with others, importance of engaging DS child in community, methods of learning, educational skills, steps of improving positive behaviors and enhancing self-responsibility for DS child. This was done by using open discussion, brain storming, pictures, videos and handout.
Sessions (9:11) Role of family caregivers in modifying child behaviors:
Objective: At the end of these sessions, each family caregiver of children with DS was able to follow therapeutic measures for modifying behaviors and enhancing positive behaviors of his own child.
These sessions included methods of accepting child with DS, Importance of learning by play and role modeling in modifying DS child behavior, Positive reinforcement, methods of enhancing positive behaviors and available services for children with DS in Egypt. This was done by using open discussion, brain storming, pictures, videos and handout.
Sessions (12:16) Coping Methods:
Objective: At the end of these sessions, each family caregiver of children with DS was able to explore and apply methods of effective coping
These sessions included definition of coping, difference between problem-focused and emotion-focused coping methods, examples for both problem-focused and emotion-focused coping methods as well as steps of effective coping. This was done by using open discussion, brain storming and handout.
Sessions (17) Overview about psychological well-being
Objective: At the end of this session, each family caregiver of children with DS obtained an overview about psychological well-being.
This session included definition, dimensions and benefits of psychological wellbeing. This was done by using brain storming, open discussion and handout.
Sessions (18:32) Applying methods for enhancing psychological well-being:
Objective: At the end of these sessions, each family caregiver of children with DS was able to apply methods of enhancing psychological well-being.
These sessions included methods of enhancing psychological well-being, positive thinking skills, tips for enhancing self-esteem, anger management skills, ways of expressing emotions, time management skills and relaxation techniques (meditation, breathing exercises, muscle relaxation technique, massage and gradual muscles relaxation technique). This was done using open discussion, brain storming, demonstration, role play, videos and handout and evaluated by asking questions, oral feedback and re-demonstration.
Session (33) closure and data collection session (post assessment):
Objective: At the end of this session, each family caregiver of children with DS was able to fill in the data collection tools.
Finally, the researcher gave feedback and made post assessment after the intervention program has been completely applied. The researcher provided thanks for cooperation to all family caregivers who participated in this study.
The study findings were as the following:
• All family caregivers (100%) were mother and more than half (55%) were in age group (35-<55) years old, the married caregivers were more than two thirds (70%), the illiterate caregivers represented (55%), the majority of the study sample were unemployed and had not enough family income which constituted (86.7%) and (91.7%) respectively, and more than half (60%) lived in rural areas. According to family history, all family caregivers (100%) had no family history for psychiatric illness or DS.
• Two thirds of DS children (66.7%) were in age group (6-<8) years old, and more than half of DS children (55%) were male and had IQ from (40-<55), as regards to number of siblings and child’s rank, more than third (35%) had more than 2 siblings and their rank was more than third. According to level of education, the majority of children (95%) were illiterate. Heart disease, GIT Disorders and urinary incontinence were the most common physical complains and disabilities among children with DS which constituted (70%), (55%) and (48.3%) respectively. Additionally, it was found that the majority of children were previously hospitalized, took medications continuously and had a history of previous surgery which constituted (91.7%), (75%) and (70%) respectively.
• There were highly statistically significant differences between pre and post intervention regarding autonomy and environmental mastery where regarding to autonomy, post intervention the majority of family caregivers (75%) didn’t care about what other people think of them and had no difficult to voice their own opinions on controversial matters while pre intervention they constituted only (18.3%) & (16.7%) respectively. Regarding to environmental mastery, the most of family caregivers post intervention were able to manage daily living responsibilities and fitted very well with the people and the community around them which constituted (75%) & (70%) respectively while pre intervention the percentages were only (5%) & (18.3%) respectively. As well, Two thirds of family caregivers (66.7%) post intervention had been able to build a home and a lifestyle for themselves that was much to their liking and didn’t often feel overwhelmed by their responsibilities while pre intervention they only constituted (10%) & (11.7%) respectively.
• There were highly statistically significant differences between pre and post intervention regarding personal growth and positive relations where regarding to personal growth, post intervention the majority of family caregivers believed that life had been a continuous process of learning, changing, and growth and didn’t give up trying to make big improvements or changes in their life which constituted (83.3%) & (75%) respectively while pre intervention they constituted only (33.3%) & (16.7%) respectively. As well, pre intervention two thirds or near of family caregivers were not interested in activities that expand their horizons and didn’t have the sense that they had been really improved professionally and socially over the years which constituted (63.3%) & (66.7%) respectively while post intervention they constituted only (3.3%) & (6.7%). Regarding to positive relations, two thirds of family caregivers (66.7%) pre intervention didn’t enjoy personal and mutual conversations with family members or friends and feel lonely because they didn’t have close friends with whom to share their concerns while post intervention the percentages were only (25%) & (13.3%) respectively.
• There were highly statistically significant differences between pre and post intervention regarding purpose in life and self-acceptance where regarding to purpose in life, post intervention most of family caregivers (75%) had a sense of direction and purpose in life and had a good sense of what they were trying to accomplish in life while pre intervention they constituted only (16.7%). Additionally, pre intervention most of family caregivers lived life one day at a time and didn’t really think about the future, felt as if they had done all there was to do in life and didn’t enjoy making plans for the future or working to make them a reality which constituted (75%) & (75%) & (76.7%) respectively. Regarding to self-acceptance, the majority of family caregivers pre intervention didn’t feel confident and positive about themselves and felt that many of the people they knew had gotten more out of life than they had which constituted (81.7%) & (85%) respectively while post intervention the percentages were only (11.7%) & (6.7%) respectively. As well, More than two thirds of family caregivers (73.3%) post intervention when they looked at the story of their life; they were pleased with how things had turned out while pre intervention they only constituted (6.7%).
• There were highly statistically significant differences between pre and post intervention regarding self-distraction and denial where regarding to self-distraction, two thirds of family caregivers (66.7%) pre intervention had been turning to work or other activities to take their mind off child problems while post intervention they constituted only (13.3%). As well, most of family caregivers (76.7%) pre intervention had been watching TV, reading, sleeping, or shopping to think less about child disability problems while post intervention they constituted only (6.7%). Concerning denial, more than two thirds of family caregivers (71.7%) pre intervention said that the child bad health wasn’t real to relieve feeling of stress and had been refusing to believe child exposure to physical, mental and social problems that were related to DS while post intervention they constituted only (5%).
• There were highly statistically significant differences between pre and post intervention regarding use of emotional support where more than two thirds of family caregivers (73.3%) pre intervention had been expressing their sadness through talking to friends and relatives while post intervention they constituted only (15%). Concerning behavioral disengagement, there were highly statistically significant differences between pre and post intervention regarding behavioral disengagement where near two thirds of family caregivers (61.7%) pre intervention had been giving up trying to take assertive decision related to the child problems and preferring isolation and not talking to others while post intervention they constituted only (5%) & (8.3%) respectively.
• There were highly statistically significant differences between pre and post intervention regarding self-blame where pre intervention, most of family caregivers (75%) had been feeling shame on going with the child out of home while post intervention, they constituted only (8.3%). Additionally, near most of family caregivers (73.3%) pre intervention had been blaming themselves for the child disability while post intervention, they constituted only (3.3%). Unlike, there were no statistically significant differences between pre and post intervention regarding humor, acceptance, religion, venting and substance use.
• There were highly statistically significant differences between pre and post intervention regarding positive reframing and planning where regarding to positive reframing, pre intervention more than half of family caregivers hadn’t been concentrating on a good thing as achieving certain degree of the child autonomy and hadn’t been looking at the child disability as a challenge to show their abilities which constituted (56.7%) & (58.3%) respectively while post intervention they represented (0.0%). Concerning planning, most of family caregivers post intervention had been trying with their family members to come up with a strategy about solution for the child problems and had been rearranging their life priorities and what to be interested which constituted (73.3%) & (80%) respectively while pre intervention they constituted only (15%) & (33.3%) respectively.
• There were highly statistically significant differences between pre and post intervention regarding active coping where most of family caregivers (83.3%) pre intervention hadn’t been attending lectures that touch DS children related problems or use books or internet to help the child while post intervention they constituted (0.0%). Unlike, there were no statistically significant differences between pre and post intervention regarding use of instrumental support.
• There was a highly statistically significant relation between psychological well-being post intervention and socio-demographic characteristics regarding age of mother, level of education and residence and a statistically significant relationship regarding marital status. Additionally, there was a statistically significant relation between emotion-focused coping strategies post intervention and socio-demographic characteristics for family caregivers of DS children regarding age of mother, level of education and residence. Unlike, there was no statistically significant relation between problem-focused coping strategies post intervention and socio-demographic characteristics for family caregivers of DS children.
• In conclusion, in the light of the current study results, it can be concluded that, there were highly statistically significant differences between pre and post intervention regarding level of psychological well-being. There were highly statistically significant differences between pre & post intervention regarding to emotion-focused coping strategies except for humor, acceptance, religion, venting and substance use and there were highly statistically significant differences between pre & post intervention regarding to problem-focused coping strategies except for use of instrumental support. There was a highly positive statistically significant correlation between psychological well-being pre & post intervention and problem-focused coping strategies regarding active coping and positive reframing and a positive statistically significant correlation regarding use of instrumental support and planning. Meanwhile, there was a negative statistically significant correlation between psychological well-being pre & post intervention and all types of emotion-focused coping strategies except for humor, acceptance and religion.
In the light of the study findings, the following recommendations were suggested:
1. Establishment of counseling clinics for parents and siblings to improve psychological wellbeing and coping strategies.
2. Conducting periodic scientific seminars for nurses about strategies of effective coping and methods of enhancing psychological well-being for 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. Future research to assess the challenges encountered by sibling of DS children and providing supportive intervention that promote positive relationships and attitudes.
5. Applying the same educational interventional program for enhancement of coping strategies and psychological well-being among families of children with DS in other different institutions.