Cross-cultural perspectives on the meaning of family quality of life: Comparing Korean immigrant families and Canadian families of children with autism spectrum disorder

Fong, Vanessa C.; Gardiner, Emily; Iarocci, Grace

doi:10.1177/1362361321989221

Cited by 17 publications

(14 citation statements)

References 41 publications

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“…They are able to draw strength from various areas and appreciate the individual talents and sense of fulfillment and joy their child brings to their families. This finding is consistent with previous research revealing positive aspects of caregiving and improvements in family functioning for Korean parents raising autistic children (Cho et al, 2000; Fong et al, 2021).…”

Section: Discussionsupporting

confidence: 93%

“…Families of autistic children report a number of strengths and challenges across the lifespan. Strengths reported include greater closeness among family members, positive relationships between siblings, personal growth, and improved marital relationships (Fong et al, 2021; Mount & Dillon, 2014; Orsmond et al, 2009; Phelps et al, 2009; Rivers & Stoneman, 2003). Families also report a number of challenges raising their autistic child due to the nature and complexity of their child’s social, behavioral, physical, and medical needs (Estes et al, 2013).…”

mentioning

confidence: 99%

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A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families

Fong

Lee²,

Iarocci

2021

Autism

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This study adopted a community-engaged approach to explore Korean parents’ perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Understanding the experiences of culturally and linguistically diverse families and their children may help facilitate the development of more inclusive, appropriate, and culturally sensitive services. Semi-structured interviews with 20 Korean parents of autistic children were analyzed using a thematic approach. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children. Lay abstract Perceptions and experiences of culturally and linguistically diverse groups in accessing autism services in Canada are extremely limited. Thus, this study partnered with a community member to explore Korean immigrant parents’ perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Interviews were conducted with 20 Korean parents of autistic children. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, these included language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children.

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Section: Discussionsupporting

confidence: 93%

mentioning

confidence: 99%

A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families

Fong

Lee²,

Iarocci

2021

Autism

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“…FQoL is therefore one of the main outcome measures of services and the provision of family support for people with intellectual disabilities [7,9,13]. Guidance from family members is helpful for individuals with disabilities [14][15][16][17]. In this sense, in the past two decades, the FQoL concept received greater attention for its development and utilization [9,18], especially in the field of disability studies [19,20].…”

Section: Zuna Et Al Four Combined Concepts Changed To Practices Of In...mentioning

confidence: 99%

The cross-cultural validation of the Beach Center Family Quality of Life Scale among persons affected by leprosy and podoconiosis in Northwest, Ethiopia

Aycheh

Noordende²,

Moges

et al. 2023

Preprint

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Background The Beach Center Family Quality of Life Scale was developed and validated in different languages in different countries. However, this scale is not yet validated in the Ethiopian Amharic language context. Therefore, this study aimed to investigate the Beach Center Family Quality of Life Scale's cross-cultural validity among Ethiopian families of persons affected by leprosy and podoconiosis. Methodology We explored the semantic equivalence, internal consistency, reproducibility, floor and ceiling effects, and interpretability of the Beach Centre Family Quality of Life Scale in Amharic. After translating and back-translating the instrument, a cross-sectional study was conducted. A total of 302 adult persons affected by leprosy and podoconiosis who have a view of their family life were asked about their level of satisfaction using the Beach Center Family Quality of Life Scale. In addition, 50 participants were interviewed again two weeks after the first assessment to check the reproducibility of the scale. Participants were recruited in the East Gojjam zone in Northwest Ethiopia. Results The findings of this study showed that the Beach Center Family Quality of Life Scale had high internal consistency (Cronbach alpha of 0.913) and reproducibility (intra-class correlation coefficient of 0.857). The standard error of measurement was 3.01, which is 2.4% of the total score range. The smallest detectable change was 8.34. Confirmatory factor analysis showed adequate factor loadings and model fit indices like the original scale. The composite reliability and average variance extracted from the scale were acceptable. No floor and ceiling effects were found. Conclusions Our findings indicate that the Amharic version of the Beach Center Family Quality of Life scale has adequate cultural validity to assess the family quality of life in Ethiopian families of persons affected by leprosy and podoconiosis.

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“…Though families and caregivers of autistic children report many positive outcomes and enhanced quality of life ( Fong, Gardiner, & Iarocci, 2021 ), various social, systemic, and environmental barriers exist that place them at greater risk for stress and mental health problems ( Shakespeare & Watson, 2001 ). Research has shown that caregivers of autistic children report higher levels of stress compared to parents of typically developing (TD) children and children with other developmental disabilities ( Hayes & Watson, 2013 ).…”

Section: Coping In Parents Of Autistic Childrenmentioning

confidence: 99%

A preliminary exploration of different coping strategies used by Korean immigrant parents of autistic children in high versus low family quality of life ratings

Fong

Shim

Yoon

et al. 2022

Autism

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The experiences of coping in parents of autistic children have been extensively studied in the literature. While this research has identified both effective and ineffective coping strategies used by caregivers, no studies to date have examined how coping strategies used by parents might be linked to family quality of life outcomes. Furthermore, few studies exist examining both coping strategies and family quality of life in culturally and linguistically diverse populations. Thus, this study aimed to address both limitations. A total of 12 Korean immigrant parents of autistic children, 6 representing the high family quality of life group and 6 representing the low family quality of life group, shared their experiences related to coping and managing stress. Responses fell under three broad categories (problem-focused, emotion-focused, and adjustment-focused) with differences observed when comparing the high versus low family quality of life groups. A better understanding of the link between coping strategies and family quality of life outcomes may help identify effective and culturally sensitive supports for caregivers and families to improve their quality of life and well-being. Lay abstract The experiences of coping in parents of autistic children have been extensively studied in the literature. While this research has identified both effective and ineffective coping strategies used by caregivers, no studies to date have examined how coping strategies used by parents might be linked to family quality of life outcomes. Furthermore, few studies exist examining both coping strategies and family quality of life in culturally and linguistically diverse populations. Thus, this study aimed to address both limitations. A total of 12 Korean immigrant parents of autistic children, 6 representing the high family quality of life group and 6 representing the low family quality of life group, shared their experiences related to coping and managing stress. Responses fell under three broad categories (problem-focused, emotion-focused, and adjustment-focused) with differences observed when comparing the high versus low family quality of life groups. A better understanding of the link between coping strategies and family quality of life outcomes may help identify effective and culturally sensitive supports for caregivers and families to improve their quality of life and well-being.

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Cross-cultural perspectives on the meaning of family quality of life: Comparing Korean immigrant families and Canadian families of children with autism spectrum disorder

Cited by 17 publications

References 41 publications

A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families

A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families

The cross-cultural validation of the Beach Center Family Quality of Life Scale among persons affected by leprosy and podoconiosis in Northwest, Ethiopia

A preliminary exploration of different coping strategies used by Korean immigrant parents of autistic children in high versus low family quality of life ratings

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