Abstract
A new approach has been designed at the Bambino Gesù Children’s Hospital in Rome aimed at increasing empowerment in Williams Syndrome individuals through tutor-assisted work activities. Williams Syndrome is characterized by a combination of distinguishing physical traits, congenital anomalies, intellectual disabilities, and a specific developmental profile. This manuscript describes the case of a Williams Syndrome patient. There are only few papers in the scientific literature describing interventions targeting improvement in the quality of life of adult Williams Syndrome individuals. Therefore, this experience may prove useful to several patients, their families, and the experts helping them. We described an example of intervention aimed at guiding and facilitating a Williams Syndrome patient within a work environment, taking into consideration the peaks and valleys of these individuals’ specific abilities. Based on our results, we also stressed the need to promote a set of projects and initiatives aimed at enhancing as much as possible self-sufficiency and psycho-affective balance in Williams Syndrome individuals, in order to protect their dignity and self-esteem.
| Original language | English |
|---|---|
| Article number | 107 |
| Journal | Orphanet Journal of Rare Diseases |
| Volume | 12 |
| Issue number | 1 |
| DOIs | |
| Publication status | Published - May 31 2017 |
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Keywords
- Inter-individual variability
- Williams Syndrome
- Work experience
ASJC Scopus subject areas
- Genetics(clinical)
- Pharmacology (medical)
Cite this
The work experience of a patient affected by Williams Syndrome : a pilot project at the Bambino Gesù Children’s Hospital. / De Lorenzo, Francesca; Macchiaiolo, Marina; Carlevaris, Carla Maria; Bartuli, Andrea.
In: Orphanet Journal of Rare Diseases, Vol. 12, No. 1, 107, 31.05.2017.Research output: Contribution to journal › Article
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TY - JOUR
T1 - The work experience of a patient affected by Williams Syndrome
T2 - a pilot project at the Bambino Gesù Children’s Hospital
AU - De Lorenzo, Francesca
AU - Macchiaiolo, Marina
AU - Carlevaris, Carla Maria
AU - Bartuli, Andrea
PY - 2017/5/31
Y1 - 2017/5/31
N2 - A new approach has been designed at the Bambino Gesù Children’s Hospital in Rome aimed at increasing empowerment in Williams Syndrome individuals through tutor-assisted work activities. Williams Syndrome is characterized by a combination of distinguishing physical traits, congenital anomalies, intellectual disabilities, and a specific developmental profile. This manuscript describes the case of a Williams Syndrome patient. There are only few papers in the scientific literature describing interventions targeting improvement in the quality of life of adult Williams Syndrome individuals. Therefore, this experience may prove useful to several patients, their families, and the experts helping them. We described an example of intervention aimed at guiding and facilitating a Williams Syndrome patient within a work environment, taking into consideration the peaks and valleys of these individuals’ specific abilities. Based on our results, we also stressed the need to promote a set of projects and initiatives aimed at enhancing as much as possible self-sufficiency and psycho-affective balance in Williams Syndrome individuals, in order to protect their dignity and self-esteem.
AB - A new approach has been designed at the Bambino Gesù Children’s Hospital in Rome aimed at increasing empowerment in Williams Syndrome individuals through tutor-assisted work activities. Williams Syndrome is characterized by a combination of distinguishing physical traits, congenital anomalies, intellectual disabilities, and a specific developmental profile. This manuscript describes the case of a Williams Syndrome patient. There are only few papers in the scientific literature describing interventions targeting improvement in the quality of life of adult Williams Syndrome individuals. Therefore, this experience may prove useful to several patients, their families, and the experts helping them. We described an example of intervention aimed at guiding and facilitating a Williams Syndrome patient within a work environment, taking into consideration the peaks and valleys of these individuals’ specific abilities. Based on our results, we also stressed the need to promote a set of projects and initiatives aimed at enhancing as much as possible self-sufficiency and psycho-affective balance in Williams Syndrome individuals, in order to protect their dignity and self-esteem.
KW - Inter-individual variability
KW - Williams Syndrome
KW - Work experience
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U2 - 10.1186/s13023-017-0657-6
DO - 10.1186/s13023-017-0657-6
M3 - Article
AN - SCOPUS:85019997835
VL - 12
JO - Orphanet Journal of Rare Diseases
JF - Orphanet Journal of Rare Diseases
SN - 1750-1172
IS - 1
M1 - 107
ER -