The work experience of a patient affected by Williams Syndrome: a pilot project at the Bambino Gesù Children’s Hospital

Francesca De Lorenzo, Marina Macchiaiolo, Carla Maria Carlevaris, Andrea Bartuli

Research output: Contribution to journalArticle

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 languageEnglish
Article number107
JournalOrphanet Journal of Rare Diseases
Volume12
Issue number1
DOIs
Publication statusPublished - May 31 2017

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Williams Syndrome
Literature
Aptitude
Self Concept
Intellectual Disability
Quality of Life

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 journalArticle

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