TY - JOUR
T1 - Family adaptation in families of individuals with Down syndrome from 12 countries
AU - Van Riper, Marcia
AU - Knafl, George J.
AU - Knafl, Kathleen A.
AU - Do Céu Barbieri-Figueiredo, Maria
AU - Barnoy, Sivia
AU - Caples, Maria
AU - Choi, Hyunkyung
AU - Cosgrove, Beth
AU - Duarte, Elysângela Dittz
AU - Honda, Junko
AU - Marta, Elena
AU - Phetrasuwan, Supapak
AU - Alfieri, Sara
AU - Angelo, Margareth
AU - Deoisres, Wannee
AU - Fleming, Louise
AU - Dos Santos, Aline Soares
AU - Da Silva, Maria João Rocha
PY - 2024
Y1 - 2024
N2 - Our current understanding of adaptation in families of individuals with Down syndrome (DS) is based primarily on findings from studies focused on participants from a single country. Guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, the purpose of this cross-country investigation, which is part of a larger, mixed methods study, was twofold: (1) to compare family adaptation in 12 countries, and (2) to examine the relationships between family variables and family adaptation. The focus of this study is data collected in the 12 countries where at least 30 parents completed the survey. Descriptive statistics were generated, and mean family adaptation was modeled in terms of each predictor independently, controlling for an effect on covariates. A parsimonious composite model for mean family adaptation was adaptively generated. While there were cross-country differences, standardized family adaptation mean scores fell within the average range for all 12 countries. Key components of the guiding framework (i.e., family demands, family appraisal, family resources, and family problem-solving communication) were important predictors of family adaptation. More cross-country studies, as well as longitudinal studies, are needed to fully understand how culture and social determinants of health influence family adaptation in families of individuals with DS.
AB - Our current understanding of adaptation in families of individuals with Down syndrome (DS) is based primarily on findings from studies focused on participants from a single country. Guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, the purpose of this cross-country investigation, which is part of a larger, mixed methods study, was twofold: (1) to compare family adaptation in 12 countries, and (2) to examine the relationships between family variables and family adaptation. The focus of this study is data collected in the 12 countries where at least 30 parents completed the survey. Descriptive statistics were generated, and mean family adaptation was modeled in terms of each predictor independently, controlling for an effect on covariates. A parsimonious composite model for mean family adaptation was adaptively generated. While there were cross-country differences, standardized family adaptation mean scores fell within the average range for all 12 countries. Key components of the guiding framework (i.e., family demands, family appraisal, family resources, and family problem-solving communication) were important predictors of family adaptation. More cross-country studies, as well as longitudinal studies, are needed to fully understand how culture and social determinants of health influence family adaptation in families of individuals with DS.
KW - Down syndrome
KW - adaptation
KW - cross-country
KW - family
KW - resiliency
KW - Down syndrome
KW - adaptation
KW - cross-country
KW - family
KW - resiliency
UR - http://hdl.handle.net/10807/269538
U2 - 10.1002/ajmg.c.32075
DO - 10.1002/ajmg.c.32075
M3 - Article
SN - 1552-4868
VL - 196
SP - 1
EP - 12
JO - AMERICAN JOURNAL OF MEDICAL GENETICS. PART C, SEMINARS IN MEDICAL GENETICS
JF - AMERICAN JOURNAL OF MEDICAL GENETICS. PART C, SEMINARS IN MEDICAL GENETICS
ER -