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

Marcia Van Riper; George J. Knafl; Maria do Céu Barbieri-Figueiredo; Maria Caples; Hyunkyung Choi; Gert de Graaf; Elysângela Dittz Duarte; Junko Honda; Elena Marta; Supapak Phetrasuwan; Sara Alfieri; Margareth Angelo; Wannee Deoisres; Louise Fleming; Aline Soares dos Santos; Maria João Rocha da Silva; Beth Skelton; Shelley van der Veek; Kathleen A. Knafl

doi:10.1177/1074840720975167

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

Marcia Van Riper, George J. Knafl, Maria do Céu Barbieri-Figueiredo, Maria Caples, Hyunkyung Choi, Gert de Graaf, Elysângela Dittz Duarte, Junko Honda, Elena Marta, Supapak Phetrasuwan, Sara Alfieri, Margareth Angelo, Wannee Deoisres, Louise Fleming, Aline Soares dos Santos, Maria João Rocha da Silva, Beth Skelton, Shelley van der Veek, Kathleen A. Knafl

Department of Nursing

Research output: Contribution to journal › Article › peer-review

9 Scopus citations

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.

Original language	English
Pages (from-to)	8-22
Number of pages	15
Journal	Journal of Family Nursing
Volume	27
Issue number	1
DOIs	https://doi.org/10.1177/1074840720975167
State	Published - Feb 2021

Keywords

cross-cultural
Down syndrome
family
family management
measurement
quantitative

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1177/1074840720975167

Cite this

Van Riper, M., Knafl, G. J., Barbieri-Figueiredo, M. D. C., Caples, M., Choi, H., de Graaf, G., Duarte, E. D., Honda, J., Marta, E., Phetrasuwan, S., Alfieri, S., Angelo, M., Deoisres, W., Fleming, L., dos Santos, A. S., Rocha da Silva, M. J., Skelton, B., van der Veek, S., & Knafl, K. A. (2021). Measurement of Family Management in Families of Individuals With Down Syndrome: A Cross-Cultural Investigation. Journal of Family Nursing, 27(1), 8-22. https://doi.org/10.1177/1074840720975167

@article{8386a3d1ee8a4a81a62256b09f0cd840,

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

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.",

keywords = "cross-cultural, Down syndrome, family, family management, measurement, quantitative",

author = "{Van Riper}, Marcia and Knafl, {George J.} and Barbieri-Figueiredo, {Maria do C{\'e}u} and Maria Caples and Hyunkyung Choi and {de Graaf}, Gert and Duarte, {Elys{\^a}ngela Dittz} and Junko Honda and Elena Marta and Supapak Phetrasuwan and Sara Alfieri and Margareth Angelo and Wannee Deoisres and Louise Fleming and {dos Santos}, {Aline Soares} and {Rocha da Silva}, {Maria Jo{\~a}o} and Beth Skelton and {van der Veek}, Shelley and Knafl, {Kathleen A.}",

note = "Publisher Copyright: {\textcopyright} The Author(s) 2020.",

year = "2021",

month = feb,

doi = "10.1177/1074840720975167",

language = "English",

volume = "27",

pages = "8--22",

journal = "Journal of Family Nursing",

issn = "1074-8407",

publisher = "SAGE Publications Inc.",

number = "1",

}

Van Riper, M, Knafl, GJ, Barbieri-Figueiredo, MDC, Caples, M, Choi, H, de Graaf, G, Duarte, ED, Honda, J, Marta, E, Phetrasuwan, S, Alfieri, S, Angelo, M, Deoisres, W, Fleming, L, dos Santos, AS, Rocha da Silva, MJ, Skelton, B, van der Veek, S & Knafl, KA 2021, 'Measurement of Family Management in Families of Individuals With Down Syndrome: A Cross-Cultural Investigation', Journal of Family Nursing, vol. 27, no. 1, pp. 8-22. https://doi.org/10.1177/1074840720975167

TY - JOUR

T1 - Measurement of Family Management in Families of Individuals With Down Syndrome

T2 - A Cross-Cultural Investigation

AU - Van Riper, Marcia

AU - Knafl, George J.

AU - Barbieri-Figueiredo, Maria do Céu

AU - Caples, Maria

AU - Choi, Hyunkyung

AU - de Graaf, Gert

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 - Rocha da Silva, Maria João

AU - Skelton, Beth

AU - van der Veek, Shelley

AU - Knafl, Kathleen A.

PY - 2021/2

Y1 - 2021/2

N2 - 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.

AB - 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.

KW - cross-cultural

KW - Down syndrome

KW - family

KW - family management

KW - measurement

KW - quantitative

UR - http://www.scopus.com/inward/record.url?scp=85097163167&partnerID=8YFLogxK

U2 - 10.1177/1074840720975167

DO - 10.1177/1074840720975167

M3 - Article

C2 - 33272069

AN - SCOPUS:85097163167

SN - 1074-8407

VL - 27

SP - 8

EP - 22

JO - Journal of Family Nursing

JF - Journal of Family Nursing

IS - 1

ER -

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

Abstract

Keywords

UN SDGs

Access to Document

Other files and links

Fingerprint

Cite this