Percepciones parentales sobre el impacto del síndrome de Down en la familia

Abstract

La parentalidad de un hijo con síndrome de Down supone un desafío, no sólo para los padres, sino también para el conjunto del sistema familiar. La presente investigación se propone analizar, desde un punto de vista cualitativo, la visión que los propios padres tienen sobre el impacto, tanto positivo como negativo, que la presencia de un hijo con SD provoca en la familia. Para ello, se han analizado las entrevistas realizadas a 10 participantes (3 padres, 3 madres y 4 profesionales del ámbito de la educación especial). Los resultados revelan que, a pesar de que el diagnóstico del SD en un hijo sea un evento inesperado y estresante para la familia, la percepción general del impacto familiar es positiva. PalabraS clave: síndrome de Down; impacto familiar; familia; discapacidad intelectual.

Quality of Life in Higher Education for Individuals with Intellectual Disabilities and Family Perceptions

“…The impact of disability on the family is very noticeable as it entails a whole series of changes in its *Address correspondence to this author at the Faculty of Education and Psychology, Universidad Francisco de Vitoria, Madrid, Spain; Tel: +34913510303; E-mail: esther.vela@ufv.es structure, both in terms of acceptance and adaptation to new patterns of action and daily difficulties [3,4]. In addition, many families enter into depressive phases and generally conceive their future in a pessimistic way [5].…”

“…However, a structured family environment is one of the factors that facilitate the process of acceptance and care of the person with a disability [4,6]. On the social aspect, it should be noted that many of these families report the numerous prejudices and negative reactions that people in their social environment have towards their children, which generates a lot of pain and helplessness in parents [3]. Concerning parents' perceptions of their own children, studies such as that of Arellano and Peralta [7] reveal that parents highlight a lack of self-determination, interests that are very limited to a series of activities, and the search for immediate pleasure, which sometimes makes it difficult for them to set long-term goals.…”

Nurturing Grandchildren With Down Syndrome: A Qualitative Study on Grandparents’ Needs Using Digital Tools†

“…Research by Fernández and Izuzquiza (2017) on parental perceptions about Down syndrome's impact on the family exposes how greater importance is placed on the extended family, particularly grandparents, upon learning of the diagnosis. They stated the need to have better resources and support in relation to the disability, as well as to establish stable contact with other grandparents and families with similar characteristics.…”

Mission Impossible? Preventing discrimination on grounds of disability of foetuses with Down syndrome in Spain after the emergence of non-invasive prenatal testing

“…However, there is empirical evidence of just the opposite: the percentage of people with DS declaring themselves happy with their lives, the way they look and who they are is 99% (Skotko et al, 2011a, p. 17); the siblings of people with DS show love (97%) and pride (87%) for their sibling with DS and even think they are a better person because of their brother or sister with DS (88%) (Skotko et al, 2011b, pp. 18–20); 99–97% of parents express love and pride towards their children with DS (Skotko et al, 2011c, p. 21), considering their family has been enriched positively with their child with DS (Serrano Fernández and Izuzquiza Gasset, 2017, p. 90) and not affecting negatively marital functioning (Van Riper et al, 1992). Many autobiographical books (such as Beck, 1999; Groneberg, 2008; Soper, 2009) are a testimony of change and happiness for having them.…”