A repercussão de um diagnóstico de síndrome de Down no cotidiano familiar: perspectiva da mãe La repercusión de un diagnóstico de Síndrome de Down en el cotidiano familiar: perspectiva de la madre The impact of a Down Syndrome diagnosis on the family dynamic: mother's perspective

OBJETIVOS: Identificar como a mãe percebe o processo de revelação do diagnóstico de Síndrome de Down (SD) e as repercussões disto no cotidiano familiar, o conhecimento sobre a SD e as expectativas em relação ao futuro do filho. MÉTODOS: Estudo descritivo de natureza qualitativa. Os informantes foram três mães de crianças menores de um ano que estiveram internadas na Unidade de Terapia Intensiva pediátrica do Hospital Universitário da Universidade Estadual de Maringá nos anos de 2004 e 2005. RESULTADOS: Os dados revelaram que às vezes este diagnóstico é informado em circunstâncias e momentos inadequados, que as mães conhecem pouco sobre a SD e que quando os problemas de saúde são muitos, suas expectativas se restringem a melhoria e avanços em curto prazo. CONCLUSÃO: O desconhecimento, as reações e atitudes das famílias, como, por exemplo, esconder o diagnóstico da família ampliada e até mesmo do pai, constituem indicativos da necessidade de apoio profissional a essas mães/famílias.<br>OBJETIVOS: Identificar cómo percibe la madre el proceso de revelación del diagnóstico de Síndrome de Down (SD) y las repercusiones de éste en el cotidiano familiar, el conocimiento sobre el Síndrome de Down y las expectativas en relación al futuro del hijo. MÉTODOS: Estudio descriptivo de naturaleza cualitativa. Los informantes fueron tres madres de niños menores de un año que estuvieron internados en la Unidad de Cuidados Intensivos pediátrica del Hospital Universitario de la Universidade Estadual de Maringá en los años 2004 y 2005. RESULTADOS: Los datos revelaron que a veces este diagnóstico es informado en circunstancias y momentos inadecuados, que las madres conocen poco sobre el Síndrome de Down y que en cuanto a los problemas de salud son muchos, sus expectativas se restringen a la mejoría y avances a corto plazo. CONCLUSION: El desconocimiento, las reacciones y actitudes de las familias, como, por ejemplo, esconder el diagnóstico a la familia ampliada y hasta al mismo padre, constituyen indicativos de la necesidad de apoyo profesional a esas madres/familias.<br>OBJECTIVES: To describe mothers' perception of the information process of the diagnosis of Down Syndrome and its impact on the family dynamic, and to describe mothers' knowledge of Down Syndrome and expectations regarding their child's future. METHODS: This was a qualitative descriptive study. The sample consisted of three mothers of children under 12 months years old who were in-patients in a Pediatric Intensive Care Unit of a University Hospital in 2004 and 2005. RESULTS: The findings suggested that sometimes the information process of the diagnosis of Down syndrome is inappropriate, mothers lack knowledge of the Down syndrome, and mothers' expectations regarding their child's future are focused on short term progresses and improvements. CONCLUSION: Lack of knowledge and uncertainty of behaviors and attitudes of family members regarding the diagnosis of Down syndrome lead mothers to hide the diagnosis from extended family members and in many instances even from the father. These suggest the need of professional support for the mothers and their family

Behavioral Health Service Delivery Among Persons with Disabilities

Disability is a term often viewed negatively and with inaccurate assumptions. Many of these perceptions, while typically unfounded and incorrect, have been an embedded part of our society for many years. Compounding this phenomenon is the reality that many clinicians, including behavioral health professionals, receive minimum information and training about persons with disabilities, the importance of proper language, issues they encounter, adjustment to disability concerns, or therapeutic strategies (i.e., forgiveness, self-compassion, resilience) that may be of value—all of which are considered an essential part of the therapeutic relationship. In an effort to help clinicians better understand disability and the needs of persons with disabilities, many of these areas are explored as a part of this chapter. Furthermore, information is provided regarding suggested resources and interventions that are available to help clinicians learn more about forgiveness, self-compassion, and resilience as these relate to persons with disabilities