Parenting children with Down syndrome: Societal influences

Most studies of parenting children with Down syndrome (DS) have been conducted in industrialized countries. They suggest that sensitive communication on the part of professionals, and social support, can lead to acceptance and positive adjustments in the family. This study examined the impact of a diagnosis of DS on Ecuadorian families, in particular at how the diagnosis had been communicated and received, as well as the feelings and experiences which followed. Despite considerable progress in recent years, Ecuador is still marked by discriminatory attitudes which affect children with disabilities and their families, and by the persistence of widespread poverty. This qualitative study, conducted in Cuenca, Ecuador’s third largest city, is based on a focus group discussion and four in-depth interviews with Ecuadorian parents of DS children attending a specialist center in the city. The study shows that, reflecting the effects of status differences and lack of appropriate training, professionals rarely communicate a DS diagnosis in an appropriate manner. Further, it is shown that lack of social support, and the widespread stigmatization confronting children with DS and their families, hinder development of positive and empowering adjustments that would best serve the child’s and the family’s interest

Maskana. Revista Científica

Estudio cualitativo exploratorio con enfoque fenomenológico que estudió en 10 Niños, Niñas y Adolescentes Sordos / HipoAcústicos (NNA-S/HA) las relaciones de convivencia con la familia, los profesionales de salud, los maestros, los amigos, la comunidad sorda; las cualidades de resiliencia de los NNA-S/HA encontró que las madres aunque tienen altos niveles de estrés son las que afrontan las dificultades y apoyan la intervención, los NNA-S/HA se refugian en sus madres; y los padres se retraen en sus sentimientos y evaden los problemas, y por eso abandonan el hogar al enterarse de que su hijo es sordo. Los profesionales carecen de estrategias para la atención y la comunicación, son distantes del NNA-S/HA, las familias relatan mala calidad en los servicios de salud. Los maestros y los amigos de los NNA-S/HA que van escuelas regulares les excluyen causando convivencias desagradables para los NNA-S/HA. Aquellos que se encuentran en la escuela para sordos se sienten más adaptados, con mejor autoestima y son más resiliente. La mitad de los NNA-S/HA usan dispositivos auditivos pero todos usan o lengua de señas formal o señas familiares para comunicarse con sus amigos y familias. Los NNA-S/HA que usan los dispositivos auditivos no tienen contacto con la comunidad sorda de su región no así los otros que no lo usan y cuya lengua principal es la de señas. Los NNA-S/HA desarrollan como todos los demás sueños, proyectos de vida y luchan por conseguirlo. El estudio permite plantear hipótesis para futuras investigaciones en torno a las estrategias de afrontamiento de las familias, la resiliencia de los NNA-S/HA y la asociación con las relaciones de convivencia.Qualitative exploratory study with phenomenological focus probing the relation of 10 Deaf and Hard of Hearing Children and Adolescents (D/HH-CA) with their family, health professionals, teachers, friends and the deaf community; the resilience qualities of those children and adolescents seeking shelter with their mothers who possess relative high levels of stress nurtured by the difficulties to support and intervene with them, while fathers in general retreat in their feelings not seeing the true dimension and leaving home when they learn that their child is deaf. Professionals lack strategies for care and communication, are distant from deaf and hard of hearing children and adolescents, and families are usually disappointed in the poor quality they receive from health services. Teachers and friends of the D/HH-CA avoid them, causing unpleasant feelings and early dropouts from school. Those who have the opportunity to attend a school for deaf more easily develop resiliency and self-esteem. Half of the surveyed D/HH-CA use hearing aids and all use the sign language or family signs to communicate with family and friends. The D/HH-CA using hearing devices maintain no contact with the deaf community in their region, nor do the children not having access to hearing aids and for whom the sign language is the primary language, maintain contact with the children having hearing aids. D/HH-CA’s, like all other children and adolescents, have their dreams and aspirations to make it in life. The survey-based research provided hypotheses to direct in future research on the development of family strategies to cope with deaf and hard of hearing children, to improve the resilience of those children, and to enhance their coexistence and partnership relation.Cuencavol. 6, no.

Maskana. Revista Científica

Estudio cualitativo exploratorio con enfoque fenomenológico que estudió en 10 Niños, Niñas y Adolescentes Sordos / HipoAcústicos (NNA-S/HA) las relaciones de convivencia con la familia, los profesionales de salud, los maestros, los amigos, la comunidad sorda; las cualidades de resiliencia de los NNA-S/HA encontró que las madres aunque tienen altos niveles de estrés son las que afrontan las dificultades y apoyan la intervención, los NNA-S/HA se refugian en sus madres; y los padres se retraen en sus sentimientos y evaden los problemas, y por eso abandonan el hogar al enterarse de que su hijo es sordo. Los profesionales carecen de estrategias para la atención y la comunicación, son distantes del NNA-S/HA, las familias relatan mala calidad en los servicios de salud. Los maestros y los amigos de los NNA-S/HA que van escuelas regulares les excluyen causando convivencias desagradables para los NNA-S/HA. Aquellos que se encuentran en la escuela para sordos se sienten más adaptados, con mejor autoestima y son más resiliente. La mitad de los NNA-S/HA usan dispositivos auditivos pero todos usan o lengua de señas formal o señas familiares para comunicarse con sus amigos y familias. Los NNA-S/HA que usan los dispositivos auditivos no tienen contacto con la comunidad sorda de su región no así los otros que no lo usan y cuya lengua principal es la de señas. Los NNA-S/HA desarrollan como todos los demás sueños, proyectos de vida y luchan por conseguirlo. El estudio permite plantear hipótesis para futuras investigaciones en torno a las estrategias de afrontamiento de las familias, la resiliencia de los NNA-S/HA y la asociación con las relaciones de convivencia.Qualitative exploratory study with phenomenological focus probing the relation of 10 Deaf and Hard of Hearing Children and Adolescents (D/HH-CA) with their family, health professionals, teachers, friends and the deaf community; the resilience qualities of those children and adolescents seeking shelter with their mothers who possess relative high levels of stress nurtured by the difficulties to support and intervene with them, while fathers in general retreat in their feelings not seeing the true dimension and leaving home when they learn that their child is deaf. Professionals lack strategies for care and communication, are distant from deaf and hard of hearing children and adolescents, and families are usually disappointed in the poor quality they receive from health services. Teachers and friends of the D/HH-CA avoid them, causing unpleasant feelings and early dropouts from school. Those who have the opportunity to attend a school for deaf more easily develop resiliency and self-esteem. Half of the surveyed D/HH-CA use hearing aids and all use the sign language or family signs to communicate with family and friends. The D/HH-CA using hearing devices maintain no contact with the deaf community in their region, nor do the children not having access to hearing aids and for whom the sign language is the primary language, maintain contact with the children having hearing aids. D/HH-CA’s, like all other children and adolescents, have their dreams and aspirations to make it in life. The survey-based research provided hypotheses to direct in future research on the development of family strategies to cope with deaf and hard of hearing children, to improve the resilience of those children, and to enhance their coexistence and partnership relation.Cuencavol. 6, no.

Parents and grandparents of deaf children in Ecuador: concerns and expectations

Despite a growing number of anthropological studies of deaf communities, little attention has been paid to how socioeconomic and cultural factors influence the experiences and the concerns of hearing parents of deaf and hearing-impaired (DHI) children. This study draws on interviews with parents (and some grandparents) of DHI children in Ecuador, a country marked by profound inequality but also by considerable recent progress in poverty reduction and enhanced provisions for people with disabilities. Despite progress, many carers are nevertheless critical of the way in which new measures have been implemented, and of the schooling available to their child. They are also worried by their child’s vulnerability, the likelihood of discrimination, and the possibility of abuse