Family Variables Associated With Well-Being in Siblings of Children With Down Syndrome

The purpose of this scoping review was to identify the family and child quality of life variables that have been studied in relation to one another in children with Down syndrome, the frequency with which different relationships have been studied, and the extent to which family variables were the focus of the research aims. A literature search was conducted to find studies published between January 2007 and June 2018. The initial search yielded 2314 studies; of these, 43 were selected for a final review. Researchers most often addressed family resources and family problem-solving and coping concerning child personal development and physical well-being. Little attention to child emotional well-being was observed, with none considering family appraisal of child emotional well-being. The relationship between family variables and child QoL rarely was the primary focus of the study. Methodologically, most reviewed studies used cross-sectional designs, were conducted in North America and based on maternal report. From future research considering the issues found in this review, healthcare providers can obtain an in-depth understanding of relationships between children and family variables.

Download Full-text

Psycho-educational Nursing Intervention for Improving Coping Strategies and Psychological Well-Being among Family Caregivers of Children with Down Syndrome

NeuroQuantology ◽

10.14704/nq.2021.19.5.nq21048 ◽

2021 ◽

Vol 19 (5) ◽

pp. 49-60

Author(s):

Amgad Said Mohammed ◽

Sahar Mahmoud Mohamed ◽

Rania Abdel-Hamid Zaki

Keyword(s):

Down Syndrome ◽

Coping Strategies ◽

Family Caregivers ◽

Well Being ◽

Nursing Intervention ◽

Instrumental Support ◽

Post Intervention ◽

Psychological Well Being ◽

Children With Down Syndrome ◽

Brief Cope

Background: Training family caregivers of children with Down Syndrome on how to promote their own psychological well-being and to cope effectively is essential as they are frequently unstable and forego their psychological well-being. Aim: This study aimed to assess the effect of psycho-educational nursing intervention on coping strategies and psychological well-being among family caregivers of children with Down Syndrome. Design: A quasi-experimental design was utilized in this study. Setting: This study was carried out in the Genes Clinics of Down Syndrome in the specialized clinics of the university pediatric hospital affiliated to Ain Shams University Hospitals. Subjects: A sample of 60 family caregivers of children with Down Syndrome. The study tools were: 1) Interviewing Questionnaire, 2) Brief-COPE inventory (Carver, 1997), 3) Ryff’s Psychological well-being scale (1989) and 4) Psycho-educational program. The results: 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. Conclusions: There were highly statistically significant differences between pre & post intervention regarding the level of psychological well-being. 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. Meanwhile, 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. Recommendations: Future research to assess challenges encountered by siblings of Down Syndrome children and to apply supportive intervention that promotes positive relationships and attitudes.

Download Full-text