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.

Adaptation at the Family Level in Families of Individuals With Down Syndrome: A Scoping Review

“…These studies were conducted in the following 20 countries: Belgium (2), Brazil (4), Canada (2), Croatia (1), Denmark (1), Ecuador (1), France (1), India (1), Iran (1), Ireland (2), Israel (1), Italy (1), Japan (1), Korea (1), Poland (2), Saudi Arabia (3), Spain (1), Thailand (2), the United Kingdom (1), and the United States (10). The study conducted by Van Riper et al (2021) was a cross-cultural investigation that included participants from 11 countries (Brazil, Ireland, Italy, Japan, Korea, Netherlands, Portugal, Spain, Thailand, the United Kingdom, and the United States), and country-specific findings were reported. The study by A.…”

“…Twelve of the 19 studies that included an assessment of family appraisal were qualitative (Clark et al, 2020; De Clercq, Prinzie, Swerts, et al, 2022; De Clercq, Prinzie, Warreyn, et al, 2022; Duarte et al, 2022; Finkelstein et al, 2021; Huiracocha et al, 2017; Korkow-Moradi et al, 2017; Persons, 2017; Ronca et al, 2019; Sheldon et al, 2021; Steffensen et al, 2022; Watanabe et al, 2021), six were quantitative (Caples et al, 2018; Choi & Van Riper, 2020; Darla & Bhat, 2021; A. Lee et al, 2020; Van Riper et al, 2018, 2021), and one was mixed-methods (E. Y. Lee et al, 2021).…”

“…Y. Lee et al, 2021), measures were positioned as correlates. There were six studies (Marshall et al, 2019; Pisula & Banasiak, 2020; Robles-Bello & Sánchez-Teruel, 2022; Van Riper et al, 2018, 2021; Shivers et al, 2019) in which measures were used for description or descriptive comparison. In four studies (Caples et al, 2018; Cless et al, 2017; A.…”

“…x Van Riper et al, 2021 The purpose of this analysis was to (a) determine the reliability of the Dutch, Italian, Japanese, Korean, Portuguese, Spanish, and Thai translations of the six FaMM scales; (b) determine the reliability of the English version of the FaMM scales when used with samples from Ireland, the United States, and the United Kingdom and the reliability of the Portuguese version of the FaMM scales when used with samples from Brazil and Portugal; and (c) compare family management across diverse cultural contexts.…”

“…K. Choi & Yoo, 2015; Corrice & Glidden, 2009; Dabrowska & Pisula, 2010; Foley et al, 2014; Gau et al, 2008; Griffith et al, 2010; Hsiao, 2014; Hsiao & Van Riper, 2011; King et al, 2009, 2011; Lanfranchi & Vianello, 2012; Leonard et al, 2016; Marchal et al, 2016; McGrath et al, 2011; Mitchell et al, 2015; Muggli et al, 2009; Neely-Barnes et al, 2010; Nelson Goff et al, 2016; Phelps et al, 2012; Povee et al, 2012; Rieger & McGrail, 2013; Skotko et al, 2016; Stoneman, 2007; van der Veek et al, 2009; Van Riper, 2007). Another limitation of the current research noted by Van Riper et al (2021) was that the majority of the studies were conducted with English-speaking families of individuals with DS living in Western countries.…”