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.
The birth of a child with cerebral palsy is an enormous challenge for the parents which has a direct impact on their quality of life. Therefore, we believe it is important to pay attention to this topic. To that end, we conducted research on the quality of life of parents of children with cerebral palsy in 2018. To achieve our goal, we applied quantitative research strategy and used a valid research tool, i.e. a standardized quality of life questionnaire – Family Quality of Life Scale ("FQOL"). The average score reached by respondents was 94.0918 points which indicates a higher quality of life in respondents than expected. The evaluation of the average score for each dimension of the scale showed that respondents scored the lowest in the "Emotional Well-Being" dimension (13.2551 points) and "Social Support" (15.6429 points). The research further confirmed that there were statistically significant differences in the quality of life of respondents depending on their age (t = -2.341, p = 0.021), marital status (F = 3.476, p = 0.019) and the territorial region (χ2 = 15.39, p = 0.031). A statistically significant relationship between the quality of life of respondents and the age of the child with cerebral palsy (0.288 **, p = 0.004) was confirmed. Despite a relatively high score that indicated a higher quality of life in respondents, the research identified two areas in which parents of children with cerebral palsy had a lower quality of life, namely, their emotional well-being and social support.
La Dystrophie Musculaire de Duchenne (DMD) a un impact significatif sur la qualité de vie des enfants atteints de DMD ainsi que de toute la famille. Cet article aborde entre autres la problématique du manque d’ informations sur l’ expérience des parents à l’ égard d’ un enfant vivant avec une maladie grave en Slovaquie. En particulier, la question de la dystrophie musculaire de Duchenne chez les enfants n’ a pas encore été étudiée. Le but de l’ étude était de comprendre comment les parents décrivent leur parentalité et ce qu’ ils considèrent comme le plus important en ce qui concerne les soins à leurs enfants atteints de la DMD. 26 personnes (16 femmes, 10 hommes) ont participé à trois groupes de discussion. L’ analyse du contenu a identifié les thèmes et a fourni des réponses aux questions de recherche abordées. Quatre thèmes ont émergé comme des moments clés dans la parentalité des enfants avec DMD : (1) Acceptation du diagnostic, (2) Gestion de la vie familiale, (3) Impact du soin du bien-être des parents (4) Accès aux services.
Child protection work in the UK has to navigate between the rights of parents and the rights of children. This is because our law states that the best interests of the child must be paramount, whilst there is also government guidance and professional codes saying that we should work in collaboration with parents to achieve this. In a small minority of situations, social workers in the UK have to be part of recommending that the court makes an order to remove parental responsibility from the parents they have been working with. So, social workers have to try to empower parents'participation in order to help them be the best parents that they can, whilst balancing this against the ongoing situation for the child. This chapter in particular examines issues of the rights of parents to participate in such processes, balancing these up against our knowledge of the effects of situations in which we are working with resistance/disguised compliance in safeguarding children work, where principles of empowering parents and encouraging their participation, but where this is may only be on their terms, can lead to serious adverse consequences for the children involved.
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