APCDG - Congenital Disorders of Glycosylation
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Work Package 7– CDG psychology and educational research



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Working Group (WG) Health psychology

Working Group Leader (WGL): Pf Luísa Barros (Professor at Faculdade de Psicologia e de Ciências da Educação. Universidade de Lisboa, Portugal).
The WG led by Pf Barros aims at studying the impact of parental subjective meanings, concerns, coping strategies and health behaviours on CDG children and adults. 
Results obtained so far from this research project:
  • Under the scope of a master degree program in health psychology, a student will start a master's thesis on September 2016. This involves conducting research for the pilot study conducted by Pr Barros.
Any student, research groups, researchers, clinicians, patient organisations or other stakeholders who would like to become more involved within this project, are most welcome to get in touch to discuss possible future opportunities and collaborations. Fulfill the contact form available below:

Future opportunities and collaborations:

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About Pr Luísa Barros

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PR Luísa Barros


Biography:

Prof. Luísa Barros received her/his Ph.D. in Clinical Psychology from the University of Lisbon, Portugal (1992). After completion of hers degree she was appointed as a Faculty Fellow in the Department of Psychology at the University of Lisbon. She is currently a Full Professor of Clinical and Health Psychology at the University of Lisbon and coordinates the Research Group on Health and Clinical Psychology – Familial and Individual Adaptation Processes. Her interests are focused on clinical and pediatric psychology. In particular her laboratory is currently working on understanding how parental processes are related to and affect children’s health and adaptation, both in healthy and chronically ill populations and developing measures of parenting processes and family adaptation. 
 
List of  6 publications in the field of CDG:
  1. Pedro,H.; Barros,L. & Pereira,A.I.(2015).Pediatric Immunization Distress: A Cluster Analyses of Children's, Parents' and Nurses' Behaviors During the Anticipatory Phase. The Clinical Journal of Pain. DOI: 10.1097/AJP.0000000000000287. 
  2. Pereira, A. I., Muris, P., Barros, L., Goes, R., Marques, T., & Russo, V. (2015). Agreement and discrepancy between mother and child in the evaluation of children’s anxiety symptoms and anxiety life interference. European Child & Adolescent Psychiatry, 24(3), 327-337. DOI: 10.1007/s00787-014-0583-2.
  3.  Silva,C. & Barros,L. (2014). Pediatric Asthma Management: Study of the Family Asthma Management System Scale with a Portuguese Sample. Children's Health Care, 43: 203-220. Doi: 10.1080/02739615.2013.837822. 
  4. Silva, C.; Barros, L. & Simões,F (2014). Health-related quality of life in pediatric asthma: children’s and parents’ perspectives. Psychology, Health & Medicine,14, 1-15. Doi: 10.1080/13548506.2014.969745
  5. Pereira, A. I., Barros, L., Muris, P. Mendonça, D. (2013). The Relationships Among Parental Anxiety, Parenting, and Children’s Anxiety: The Mediating Effects of Children’s Cognitive Vulnerabilities. Journal of Child and Family Studies. Doi 10.1007/s10826-013-9767-5. 
  6. Silva,C. & Barros,L. (2013). Asthma knowledge, subjective assessment of severity and symptom perception in parents of children with asthma. Journal of Asthma. Doi:10.3109/02770903.2013.822082

List of current grants focused on CDG:
  • ​Currently coordinating the Project: PainLess: OI youngsters take control, funded by the U.K.Brittle Bones Society, UL. (2015-2016).


Support our research, advocacy, awareness and education efforts now!


Our work is publicly available to help the CDG community and related rare disease communities. Importantly, we do not receive government funding. We rely solely on donations in order to continue our projects.

​
Consider to make a donation using Paypal, debit or credit card or bank transfer. 
DONATE
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  • About US
    • What we do
    • Who we help >
      • Research
  • Resources
    • Rare CDG
    • Publications
    • Guia Metabolica
    • CDG Facts
    • Task Force CDG Communication >
      • PMM2-CDG (CDG Ia)
      • PGM1-CDG (CDG It)
      • ALG6-CDG (CDG Ic)
  • EDUCATION
  • Awareness
    • Get involved World CDG Awareness Day 2019 >
      • Go Social World CDG Awareness Day 19
      • Spread World CDG Awareness Day 19
      • Plan An Event World CDG Awareness Day 19
      • Frame your CDG Awareness Campaign 19
      • Go green! Think CDG! ©Campaign 19
      • Volunteer World CDG Awareness Day 19
      • Press kit World CDG Awareness Day 19
    • Map of events for World CDG Awareness Day 2019
    • CrowdCDG
    • Awareness Day 2018
    • Awareness Day 2017
    • Awareness Day 2016
    • Rare Diseases
  • Community
    • Join Us - Membership
    • CDG Patient Groups
    • Empowerment
  • Events
    • 1st CDG Satellite Meeting
    • Speakers - World Conference on CDG 2019
    • Registrations - World Conference on CDG 2019
    • Poster submission - World Conference on CDG 2019
    • Follow up - World Conference on CDG 19
    • Volunteer Registration - World Conference on CDG 2019
    • Previous Edition World Conference on CDG 2017 >
      • Follow up - World Conference on CDG 17
      • Speakers - World Conference on CDG 17
  • DONATE
  • BLOG