Family adaptation in families of individuals with Down syndrome from 12 countries

Author:

Van Riper Marcia1ORCID,Knafl George J.1ORCID,Knafl Kathleen A.1ORCID,do Céu Barbieri‐Figueiredo Maria23,Barnoy Sivia4ORCID,Caples Maria5,Choi Hyunkyung6ORCID,Cosgrove Beth1ORCID,Duarte Elysângela Dittz7ORCID,Honda Junko8,Marta Elena9ORCID,Phetrasuwan Supapak10,Alfieri Sara9,Angelo Margareth11,Deoisres Wannee12,Fleming Louise1,dos Santos Aline Soares13,da Silva Maria João Rocha14

Affiliation:

1. School of Nursing University of North Carolina at Chapel Hill Chapel Hill North Carolina USA

2. Nursing Department University of Huelva Huelva Spain

3. NursID CINTESIS‐ESEP Porto Portugal

4. Tel‐Aviv University Aviv Israel

5. School of Nursing and Midwifery University College Cork Cork Ireland

6. Kyungpook National University Daegu South Korea

7. Nursing School of Federal University of Minas Gerais Belo Horizonte Brazil

8. University of Hyogo Akashi Japan

9. Università Cattolica del Sacro Cuore Milan Italy

10. Faculty of Nursing Mahidol University Bangkok Thailand

11. School of Nursing University of São Paulo São Paulo Brazil

12. Rambhai Barni Rajabhat University Chanthaburi Thailand

13. Garden Valley School Division Manitoba Canada

14. Abel Salazar Biomedical Sciences Institute, University of Porto Porto Portugal

Abstract

AbstractOur 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.

Publisher

Wiley

Subject

Genetics (clinical),Genetics

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