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    Reaction to Down Syndrome Report


    Reaction to Down Syndrome Report Empty Down syndrome

    Post  mfnierra on Mon 07 Sep 2009, 11:01 am

    Very good Thea Smile you may now add updates from raiza and your new evidence-based material to your final report. Please follow precribed format specially on the matrix part, then submit a hard copy to Prof. Butcon.
    Althea Perez

    Posts : 33
    Join date : 2009-08-11

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    Post  Althea Perez on Fri 04 Sep 2009, 7:09 pm

    thank you for taking the time to read my report raiza. Smile

    i agree that besides giving care to the baby, we should also assess the coping level and their acceptance of the situation.

    A study "Quality of life of parents with Down syndrome children" done by Buzatto and Beresin (2008), which investigate the social and demographic features and quality of life of parents that have children with Down syndrome, and to verify the influence that the care of these children has on the quality of life of their parents, in the sample of 30 parents of children with Down syndrome, 80% were female. The age ranged from 28 to 49 years, mean of 37 years. The quality of life was described as “good” by 60% of the sample. The following World Health Organization Quality of Life assessment tool (WHOQOL-BREF) scores were found:
    social (80.72);
    physical (73.36);
    environmental (69.74); and
    psychological (60.28).

    There were 12 responses about the influence of the care of Down syndrome children on quality of life, of which 58.3% reported major involvement with the education and care of the children, which resulted in satisfaction. They've come to a conclusion that the psychological domain had the lowest score in the quality of life evaluation, suggesting that parents need to be offered psychological support.

    A low score in the psychological domain of the parent’s quality of life confirms the conclusions of Carswell and Grossi. They state that the birth of a child with Down syndrome may result in psychological pain for their parents. This psychological impact is responsible for generating confused feelings that may persist throughout life.

    Parents and children with down syndrome

    Following birth and definition of the genetic condition, a dialogue is started to convey this information. Parents initially tend to remain silent, a so-called “silent thunder”, during which feelings such as anger, sadness, discomfort and others may arise in response to this new imposed reality.
    After the diagnosis is defined, the syndrome needs to be clarified to provide relevant basic healthcare for the child, but most of all, to overcome barriers and bring parents closer to their child.

    Among the factors that affect the physical and mental development of the child, the most important is the stimulation from close contact between mother and child; this becomes extremely relevant when dealing with Down syndrome children.

    Down syndrome children develop slower; parents, therefore, need to dedicate themselves significantly to foster their development. These children require increased stimulus and attention in their daily activities.
    Such level of care on the part of parents of Down syndrome children alters daily routines. Thus, functional, structural and emotional changes occur in all family members, particularly in parents relative to their quality of life.


    Quality of life of parents with Down syndrome children
    Author: Leandro Loureiro Buzatto --- Ruth Beresin Journal: Einstein Year: 2008 Vol: 6 Issue: 2 Pages/record No.: 175-181

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    Post  railibo- on Thu 03 Sep 2009, 7:20 am

    Hello thea, ^_^

    I think it would also be great to include interventions that addresses the parents psychologically since having a child with down syndrome is difficult for them. Study shows that parents of children with Down's syndrome may experience symptoms of depression, while other studies find that parents adapt well. One study aimed to clarify this variability in adaptive strength by investigating a stress-coping model to explain depressive symptoms and positive affect. Results shows that coping strategies of self-blame and rumination were positively related to depressive symptoms, and positive reappraisal was positively related to positive affect. Partner bonding characteristics played relevant roles in both models, as did coping self-efficacy and goal disturbance. Social support seemed mainly relevant in explaining positive affect. So there is really a need to assess the stress coping mechanisms used by parents and provide them support.

    VAN DER VEEK, S., KRAAIJ, V., & GARNEFSKI, N. (2009, September). Down or up? Explaining positive and negative emotions in parents of children with Down's syndrome: Goals, cognitive coping, and resources. Journal of Intellectual & Developmental Disability, 34(3), 216-229. Retrieved September 2, 2009, doi:10.1080/13668250903093133

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