Research into the needs of families who have children with Down syndrome (in the Slovak framework)

Abstract

Objective: The objective of the research was to identify the current needs of parents who have children with Down syndrome (DS); needs which were not satisfied at the time when DS was diagnosed in the child, and to describe the nature of the relationship between the needs of parents who have children with DS and their quality of life. Methods: Two valid standardized scales were applied in the research: the Family Needs Survey (FNS) and the Family Quality of Life Scale (FQOL). The research sample consisted of 102 parents of children with DS. The obtained data were processed using content analysis of data and statistical data processing through SPSS. Results: The research shows that it was right after the birth of their DS child that parents felt they most lacked information and psychological assistance. As their children grew older, they needed more formal or informal support, financial assistance, engagement of their DS child in the educational process, and they also felt a shortage of time. At the same time, a strong factor with a positive impact on the needs of parents of DS children (U = 448; p < 0.05) and their quality of life (U = 146; p < 0.05) was the support of grandparents and self-help communities (α = 52.78; p < 0.05). The higher the quality of the parents life, the lower the needs in terms of family functioning (r s = -0.267; p > 0.01), use of community services (r s = -0.278; p > 0.01) or the necessity to acquaint the community with the child's disability (r s = -0.280; p > 0.01). Conclusions: In order to satisfy the needs of families with DS children, formal and informal support is equally important. The types of support vary throughout the children's lives. Services provided to these families should not only be complex, but also coordinated and continuous.

Anxiety, Depression, Quality of Life, and Family Support Among Family Caregivers of Children with Disabilities

“… 31 The content analysis in one research conducted in Slovakia showed that in the current situation, finance/compensation is the most needed element for families of children with Down syndrome. 3 A study conducted in Beijing and Shenyang in mainland China confirmed that financial support was necessary for families across disability categories. 12 For rehabilitation support, family caregivers in our study received them frequently thanks to the rapid development of rehabilitation system for children with disabilities in China.…”

“…2 Besides, a child with a disability usually has multiple care and rehabilitation needs, consequently requiring increased time, money, and energy from family caregivers. 3 Compared with family caregivers of typically developing children, evidence showed that family caregivers of children with disabilities are chronically plagued by economic burdens, lack of practical parenting skills and information, little personal time, stigma in society, or other problems. [4][5][6] Therefore, this population usually has more needs for information, community service, finance, and family functioning.…”

Self-Compassion pada Orang Tua yang Memiliki Anak dengan Down Syndrome

“…Memiliki anak dengan down syndrome merupakan tantangan tersendiri bagi orang tua, karena kondisi ini dapat menyebabkan berbagai hambatan di berbagai bidang perkembangan fisik dan mental anak, serta risiko terjadinya masalah tertentu juga meningkat, sehinga orang tua perlu mencegah terjadinya masalah tersebut [9]. Berbagai gambaran permasalahan yang dialami orang tua dengan anak down syndrome, khususnya pada permasalahan yang berkaitan dengan kondisi psikologis memerlukan solusi tersendiri agar orang tua dapat melalui masa sulit ketika beradaptasi dengan kondisi anak dengan down syndrome; salah satu strategi yang dapat mereka gunakan adalah strategi coping [10].…”