Evaluating the challenges and needs of parents caring for children with Williams syndrome: A preliminary study from Poland

J Domaradzki, D Walkowiak - Research in Developmental Disabilities, 2024 - Elsevier
Background Although physical, cognitive and behavioural manifestations of Williams
syndrome (WS) affect every dimension of caregivers lives, no studies on the parental …

[PDF][PDF] Exploring Value-Added Tax Impact on Middle and Low-Income Citizens: A Bibliometric Analysis

H Ishaqi, NH Mastor - … of Academic Research in Business and …, 2024 - kwpublications.com
This study aims to perform a comprehensive bibliometric analysis of impacting Value-Added
Tax (VAT) on the standard of living of middle and low-income citizens. To reach our goal, we …

Pragmatic skills in people with Williams syndrome: the perception of families

EM Sepúlveda, PL Resa - Orphanet Journal of Rare Diseases, 2024 - Springer
Background One of the most challenging linguistic areas in people with Williams Syndrome
throughout their evolutionary stage is the development of pragmatic skills. The research …

Quality of life of Brazilian families who have children with Williams syndrome

RCM Pereira, A Apis, TR Dos Santos… - Journal of …, 2023 - journals.sagepub.com
This cross-sectional and descriptive study examined the family quality of life (FQoL) among
72 Brazilian families who have children with Williams syndrome, a rare genetic disorder in …

[HTML][HTML] Assessment of Quality of Life Using the Kidslife Scale in Individuals With Cornelia de Lange Syndrome

L Trujillano, A Ayerza-Casas, B Puisac… - Cureus, 2024 - ncbi.nlm.nih.gov
Background: Cornelia de Lange syndrome (CdLS) is a rare polymalformative genetic
disorder with multisystemic involvement. Despite numerous clinical and molecular studies …

Health-related quality of life of children with Williams syndrome and caregivers in China

W Chen, L Sun, X He, Z Li, C Ji, F Li, J Shen… - Frontiers in Public …, 2023 - frontiersin.org
Introduction Williams syndrome (WS) is a rare genetic disorder that impacts multiple systems
and may cause developmental delays. These medical and developmental issues impose a …

“In God We Trust”: An Exploratory Study of the Associations Between Religiosity and the Caregiving Experiences of Parents of Children with Rare Diseases in Poland

J Domaradzki, D Walkowiak - Journal of religion and health, 2024 - Springer
Most children with a rare disease are cared for by their family members but parenting such a
child is extremely demanding due to the complexity and severity of symptoms, with serious …

Restricción de la participación y determinantes sociales de la salud. Análisis desde la terapia ocupacional

N Menéndez Álvarez - 2023 - gredos.usal.es
[ES] La terapia ocupacional se define como una profesión que se encarga del bienestar de
las personas a través de la ocupación. Si bien la ocupación ocupa el quehacer de nuestra …

Pragmatic Skills in People With Williams Syndrome: the Perception of Families

E Moraleda-Sepúlveda, P López-Resa - 2023 - researchsquare.com
Background One of the most challenging linguistic areas in people with Williams Syndrome
throughout their evolutionary stage is the development of pragmatic skills. The research …

Desafios e riscos à saúde do cuidador familiar da pessoa com deficiência: uma revisão integrativa da literatura

VP Simplicio, RMD da Silva… - … A LAS CIENCIAS …, 2023 - ojs.revistacontribuciones.com
A família é a primeira instituição social em que o indivíduo está inserido, o que gera uma
grande influência em seu desenvolvimento enquanto pessoa. Desse modo, o âmbito …