Measurement of Family Management in Families of Individuals With Down Syndrome: A Cross-Cultural Investigation

Author:

Van Riper Marcia1ORCID,Knafl George J.1,Barbieri-Figueiredo Maria do Céu2,Caples Maria3,Choi Hyunkyung4,de Graaf Gert5ORCID,Duarte Elysângela Dittz6,Honda Junko7,Marta Elena8,Phetrasuwan Supapak9,Alfieri Sara8,Angelo Margareth10,Deoisres Wannee11,Fleming Louise1,dos Santos Aline Soares12,Rocha da Silva Maria João13,Skelton Beth1ORCID,van der Veek Shelley14,Knafl Kathleen A.1

Affiliation:

1. University of North Carolina at Chapel Hill, USA

2. Center for Health Technology and Services Research, University of Porto, Portugal

3. University College Cork, Ireland

4. Kyungpook National University, Daegu, South Korea

5. Dutch Down Syndrome Foundation, Meppel, The Netherlands

6. Federal University of Minas Gerais, Belo Horizonte, Brazil

7. University of Hyogo, Akashi, Japan

8. Università Cattolica del Sacro Cuore, Milan, Italy

9. Mahidol University, Bangkoknoi, Thailand

10. University of São Paulo, Brazil

11. Rambhai Barni Rajabhat University, Muang, Thailand

12. Garden Valley School Division, Winkler, Manitoba, Canada

13. University of Porto, Portugal

14. Leiden University, The Netherlands

Abstract

Down syndrome (DS) is the most common genetic cause of intellectual disability worldwide. The purpose of this analysis was to determine the internal consistency reliability of eight language versions of the Family Management Measure (FaMM) and compare family management of DS across cultures. A total of 2,740 parents of individuals with DS from 11 countries completed the FaMM. The analysis provided evidence of internal consistency reliability exceeding .70 for four of six FaMM scales for the entire sample. Across countries, there was a pattern of positive family management. Cross-cultural comparisons revealed parents from Brazil, Spain, and the United States had the most positive family management and respondents from Ireland, Italy, Japan, and Korea had the least positive. The rankings were mixed for the four remaining countries. These findings provide evidence of overall strong internal consistency reliability of the FaMM. More cross-cultural research is needed to understand how social determinants of health influence family management in families of individuals with DS.

Publisher

SAGE Publications

Subject

Family Practice,Community and Home Care

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