Journal of the Society for Social Work and Research, 2021
In its quest to improve social work practice and design interventions to reach a broader swath of... more In its quest to improve social work practice and design interventions to reach a broader swath of its diverse clientele, the discipline of social work continues to recognize and encourage research within underserved communities of color. Researchers are increasingly turning to qualitative methods to better understand marginalized groups and the nuances of their experiences. Although there are a number of benefits to conducting qualitative research within communities of color, researchers frequently encounter challenges, which range from access to community members to getting participants to speak on topics that they and/or their communities consider to be private or taboo. Research strategies thus far have been directed at researchers who are narrowly defined as “outsiders” or have recommended including scholars of color as members of the research team. However, barriers can persist. Thus, our group of authors—four researchers of color and one white researcher with experience conducting community-based participatory research within marginalized communities where she had previous relationships—share our experiences in this paper. We highlight lessons learned and effective strategies that scholars, especially scholars of color, may use in qualitative research with marginalized and underserved communities, including communities of color.
Latinx children with cancer generally have poorer health outcomes than their non-Latinx White cou... more Latinx children with cancer generally have poorer health outcomes than their non-Latinx White counterparts. The purpose of this study was to examine the experience of Latinx mothers whose children have been diagnosed with cancer at the onset of symptoms, the barriers surrounding the diagnostic process, and the resources families identify are needed post-diagnosis. The researchers conducted two focus groups (one in Spanish, one in English) with Latina mothers of children who have or experienced pediatric cancer in the United States. Two researchers conducted constant comparative analysis of the transcribed focus group audio recordings to identify themes. Themes included a sense of community support at the onset of symptoms, feelings of disbelief, helplessness, overload of information, and a need for advocacy in medical settings. Needs included more palatable and simplified information, financial assistance and resources, increased parental social support, accessible Spanish-speaking ...
Epilepsy is a neurodevelopmental disorder that affects millions of adults and children. Several d... more Epilepsy is a neurodevelopmental disorder that affects millions of adults and children. Several different types of seizures, ranging from generalized which affect both sides of the brain to focal seizures that are rooted in one location of the brain. In addition to the physical impact of epilepsy, there are many emotional and identity consequences of living with epilepsy. An area that is not yet explored is the impact of epilepsy on the lives of women of color. In this paper, we fill this gap by exploring the experiences of two women of color who have had epilepsy beginning in early childhood through motherhood. One of the women is Mexican-American and an early career faculty in social work. The other identifies as a Chinese immigrant doctoral student in disability studies. Together, these stories bring to the literature voices that have not been actively engaged by epilepsy research or academia. We use a duoethnographic approach in this work given that this method provides an oppor...
LAY ABSTRACT Background: We conducted a follow-up investigation of a two-site randomized controll... more LAY ABSTRACT Background: We conducted a follow-up investigation of a two-site randomized controlled trial in the United States. We examined whether the treatment effects in a culturally tailored parent education program for Latinx families of children with autism spectrum disorder were maintained over time.Methods: Using linear mixed models, we compared differences in parent and child outcomes across three timepoints: baseline, 4 months after baseline (Time 2), and 8 months after baseline (T3). Parent outcomes included family empowerment, self-reported confidence in, and frequency of using evidence-based strategies. Child outcomes included parent-reported challenging behaviors, social communication impairments, and the number of services received. Participants were 109 Latina mothers (intervention = 54, control = 55) of children with autism spectrum disorder.Results: After intervention at both Time 2 and Time 3 in both sites, mothers in the intervention groups reported significantly...
ABSTRACT Background and Purpose Latino/Hispanic children and families encounter numerous factors ... more ABSTRACT Background and Purpose Latino/Hispanic children and families encounter numerous factors which threaten their physical and mental health (Flores, Abreu, & Kastner, 1998; Kataoka, Zhang, & Wells, 2002). The Socio-cultural Framework for Health Service Disparities (Alegria Pescosolido, Williams, & Canino, 2011) proposes factors across micro, mezo, and macro levels of the health care and community systems result in cumulative disadvantage which creates disparities in health. This study sought to explore the SCF-HSD model by investigating the impact of child and maternal micro level factors on mother-reported child health at one year of age. Methods Data from the Fragile Families and Child Wellbeing Study (FFCWB; see http://www.fragilefamilies.princeton.edu/) were used. The FFCWB is a longitudinal survey of 5,000 children born in large cities in the U.S. between 1998 and 2000 (Reichman, Teitler, Garfinkel, & McLanahan, 2001). Children were followed from birth to age 9. Parent interviews were conducted at birth, age 12 months, three years, five years and nine years. Interviews comprised questions pertaining to socio-demographic characteristics, parenting, health, child health and wellbeing. For this study, data from the birth and age one interviews were used. Child health was categorized as excellent/very good, good, or fair/poor. A constructed ethnicity/race variable based on mother self-reported race and ethnicity was used. Symptoms of maternal depression were assessed utilizing the Composite International Diagnostic Interview Short Form (CIDI-SF). Women were categorized dichotomously (yes/no) as meeting depression criteria based on a conservative threshold determined by the FFCWB researchers. Chi square analyses and logistic regressions were performed to investigate sociodemographic factors at birth and the impact on child health. For proper estimation of regression coefficients and standard errors the Complex Samples module in SPSS 19 was used. Results Significant differences at birth were found among non-Hispanic Whites, non-Hispanic Blacks, and Hispanics on maternal education level, married/cohabitation status, family income, and low birth weight. Chi square analyses revealed racial/ethnic differences in mother-reported child health status at 12 months postpartum. More Latina mothers reported their children’s health status as fair/poor than either Whites or Blacks. Latina mothers also reported the lowest rates of Excellent/Very Good child health. To assess the impact of factors on child health status logistic regression was performed. The model contained race/ethnicity, maternal education, maternal age, low birth weight, and maternal depression. The full model containing all predictors was statistically significant. The full model explained 12.3% (Cox and Snell R square) and 21.1% (Nagelkerke R square) of the variance in children’s health status, and correctly classified 87.5% of cases. Only ethnicity/race, maternal education, and maternal depression made a unique statistically significant contribution to the model. Conclusions and Implications The results demonstrate the impact of child and maternal sociodemographic factors as well as maternal depression on children’s health at one year of age. The findings support the SCF-HSD model which emphasizes the impact of micro factors on disparities in health. Implications for approaching child health research with the SCF-HSD approach and practices to reduce disparities across racial/ethnic groups are reported.
The Centers for Disease Control (2014) estimates that 1 in every 68 children is affected by autis... more The Centers for Disease Control (2014) estimates that 1 in every 68 children is affected by autism spectrum disorder (ASD). Although a plethora of information is available about the possible causes, developmental trajectories of affected children, and diagnosis and treatment services, there remains a significant delay in diagnosis and treatment services for racial/ethnic minority children. The literature shows discrepant findings on prevalence, service access, and service use across race, maternal education level (Mandell et al., 2009), income (Porterfield & McBride, 2007), amount of health insurance coverage (Kilbourne, Switzer, Hyman, Crowley-Matoka, & Fine, 2006), and residence location (Mandell et al., 2009) among racial/ethnic minority children with ASD. Moreover, children with racial/ethnic minority backgrounds who receive a diagnosis of ASD often receive lower quality services than white children (Levy, Mandell, Merhar, Ittenbach, & Pinto-Martin, 2003; Mandell, Ittenbach, Lev...
Factors affecting disparities in early diagnosis and care for Latino children with autism spectru... more Factors affecting disparities in early diagnosis and care for Latino children with autism spectrum disorders (ASD) are reviewed through a socio-cultural lens. Other models of disparities do not include the expansive factors that contribute to disparities among Latino children nor do they incorporate the family experience raising a child with autism. This dissertation provides a summary model that serves as a foundation for two studies. Study 1 applies the summary model to Latino families raising children with ASD. The findings suggest that Latina mothers reported lower levels of family burden and pessimism compared to White mothers and endorsed positively worded items on family well-being and functioning. Study 2 tests the feasibility of a novel intervention that blends evidence-based practices for autism with culturally informed practices to specifically meet the needs of Latino children and families. Spanish speaking Latina immigrant mothers of children with autism participated in two eight session modules about general autism knowledge and services, advocacy skills, and strategies to work with their children. Post-test data revealed mothers reported increased knowledge about autism, better understanding of how to advocate for their children and themselves, and increased efficacy in using intervention strategies compared to their pre-tests. Suggestions for future research in psychology, and social work practice to improve the development and implementation of policies for and practice with Latino children with ASD and their families are discussed. strategies to improve diagnosis and treatment of autism among these populations (Interagency Autism Coordinating Committee, 2011). The Latino 1 population presents a unique challenge to exploring disparities in diagnosis and treatment among underserved children with autism. The young, diverse, and growing population of Latinos is faced with a confluence of factors impacting disparities. Little is known about culturally specific factors and organizational factors contributing and protecting against disparities. The purpose of this chapter is to investigate disparities in diagnosis and treatment, as well as help-seeking and receiving with a focus on autism spectrum disorders (ASD; interchangeable with autism) among Latino children and families. The Socio-Cultural Framework for Health Service Disparities (Alegría, Pescosolido, Williams, & Canino, 2011) frames the investigation with a particular focus on factors at the child, caregiver, and provider levels that contribute to the impact of autism on families. Treatment, service access and utilization are also examined across the child, caregiver, and provider levels Chapter II provides a review of the literature pertaining to children's health disparities 2 , Latino children and families, and autism, as well as a summary model of factors contributing to the impact of autism on families and factors to consider in developing interventions for Latinos are provided with implications for Latino children with autism and their families. 1 The term Latino is utilized throughout the paper. However, several literature sources and data use the term Hispanic. Thus, the terms are interchangeable throughout the text depending on the reference. Most studies have lumped subgroups under the Latino or Hispanic labels without distinguishing among groups. Latino or Hispanic include any person of Latin-American origin or ancestry. Subgroups are Cuban, Mexican, Puerto Rican, South or Central American. Although Latinos are continually lumped into one category, each group and members within it have diverse experiences with treatment seeking, feelings of support, and service utilization that should be taken into account in the development of interventions to improve early diagnosis and treatment of Latino children with autism. 2 The literature available for disparities in early diagnosis and treatment of Latino children with autism is limited. Therefore, research pertaining to Latino children with other developmental disabilities and chronic illnesses are included where appropriate.
Autism spectrum disorder (ASD) affects a substantial number of individuals and their families. Ea... more Autism spectrum disorder (ASD) affects a substantial number of individuals and their families. Early diagnosis followed by intensive behavioral services is critical to reducing social communication deficits and behavioral challenges. Research has continually demonstrated health disparities with Latinx families that perpetuate lower ASD prevalence rates, later ASD diagnosis, and limited access to treatment compared with white children. Moreover, Latinx children who are diagnosed with ASD receive less intense and fewer treatment services. Given the number of Latinx children and those with ASD, social workers are likely to encounter the intersection throughout their careers. Thus, it is critical for social workers to have general knowledge about autism and the complexity of accessing diagnostic and treatment services. In this article, the authors review the literature on Latinx children and ASD, and identify opportunities for social workers to be innovative in their use of frameworks, ...
Latinx faculty have an opportunity to influence a growing population of incoming Latinx students.... more Latinx faculty have an opportunity to influence a growing population of incoming Latinx students. As Chicana/Latina social work faculty, we seek to raise consciousness about our biculturalism and demonstrate how it could play a role in educating students. To that end, we highlight issues related to language. The meaning of language is complex, manifesting personally and politically. It is unclear how the relationship between identity and language intersect for individuals working in higher education. Thus, we draw on a theoretical model of bicultural competence and testimonios or first-person narratives to explore these issues in-depth, extrapolate meaning from experience, and report implications for research, teaching, and practice.
Journal of the Society for Social Work and Research, 2021
In its quest to improve social work practice and design interventions to reach a broader swath of... more In its quest to improve social work practice and design interventions to reach a broader swath of its diverse clientele, the discipline of social work continues to recognize and encourage research within underserved communities of color. Researchers are increasingly turning to qualitative methods to better understand marginalized groups and the nuances of their experiences. Although there are a number of benefits to conducting qualitative research within communities of color, researchers frequently encounter challenges, which range from access to community members to getting participants to speak on topics that they and/or their communities consider to be private or taboo. Research strategies thus far have been directed at researchers who are narrowly defined as “outsiders” or have recommended including scholars of color as members of the research team. However, barriers can persist. Thus, our group of authors—four researchers of color and one white researcher with experience conducting community-based participatory research within marginalized communities where she had previous relationships—share our experiences in this paper. We highlight lessons learned and effective strategies that scholars, especially scholars of color, may use in qualitative research with marginalized and underserved communities, including communities of color.
Latinx children with cancer generally have poorer health outcomes than their non-Latinx White cou... more Latinx children with cancer generally have poorer health outcomes than their non-Latinx White counterparts. The purpose of this study was to examine the experience of Latinx mothers whose children have been diagnosed with cancer at the onset of symptoms, the barriers surrounding the diagnostic process, and the resources families identify are needed post-diagnosis. The researchers conducted two focus groups (one in Spanish, one in English) with Latina mothers of children who have or experienced pediatric cancer in the United States. Two researchers conducted constant comparative analysis of the transcribed focus group audio recordings to identify themes. Themes included a sense of community support at the onset of symptoms, feelings of disbelief, helplessness, overload of information, and a need for advocacy in medical settings. Needs included more palatable and simplified information, financial assistance and resources, increased parental social support, accessible Spanish-speaking ...
Epilepsy is a neurodevelopmental disorder that affects millions of adults and children. Several d... more Epilepsy is a neurodevelopmental disorder that affects millions of adults and children. Several different types of seizures, ranging from generalized which affect both sides of the brain to focal seizures that are rooted in one location of the brain. In addition to the physical impact of epilepsy, there are many emotional and identity consequences of living with epilepsy. An area that is not yet explored is the impact of epilepsy on the lives of women of color. In this paper, we fill this gap by exploring the experiences of two women of color who have had epilepsy beginning in early childhood through motherhood. One of the women is Mexican-American and an early career faculty in social work. The other identifies as a Chinese immigrant doctoral student in disability studies. Together, these stories bring to the literature voices that have not been actively engaged by epilepsy research or academia. We use a duoethnographic approach in this work given that this method provides an oppor...
LAY ABSTRACT Background: We conducted a follow-up investigation of a two-site randomized controll... more LAY ABSTRACT Background: We conducted a follow-up investigation of a two-site randomized controlled trial in the United States. We examined whether the treatment effects in a culturally tailored parent education program for Latinx families of children with autism spectrum disorder were maintained over time.Methods: Using linear mixed models, we compared differences in parent and child outcomes across three timepoints: baseline, 4 months after baseline (Time 2), and 8 months after baseline (T3). Parent outcomes included family empowerment, self-reported confidence in, and frequency of using evidence-based strategies. Child outcomes included parent-reported challenging behaviors, social communication impairments, and the number of services received. Participants were 109 Latina mothers (intervention = 54, control = 55) of children with autism spectrum disorder.Results: After intervention at both Time 2 and Time 3 in both sites, mothers in the intervention groups reported significantly...
ABSTRACT Background and Purpose Latino/Hispanic children and families encounter numerous factors ... more ABSTRACT Background and Purpose Latino/Hispanic children and families encounter numerous factors which threaten their physical and mental health (Flores, Abreu, & Kastner, 1998; Kataoka, Zhang, & Wells, 2002). The Socio-cultural Framework for Health Service Disparities (Alegria Pescosolido, Williams, & Canino, 2011) proposes factors across micro, mezo, and macro levels of the health care and community systems result in cumulative disadvantage which creates disparities in health. This study sought to explore the SCF-HSD model by investigating the impact of child and maternal micro level factors on mother-reported child health at one year of age. Methods Data from the Fragile Families and Child Wellbeing Study (FFCWB; see http://www.fragilefamilies.princeton.edu/) were used. The FFCWB is a longitudinal survey of 5,000 children born in large cities in the U.S. between 1998 and 2000 (Reichman, Teitler, Garfinkel, & McLanahan, 2001). Children were followed from birth to age 9. Parent interviews were conducted at birth, age 12 months, three years, five years and nine years. Interviews comprised questions pertaining to socio-demographic characteristics, parenting, health, child health and wellbeing. For this study, data from the birth and age one interviews were used. Child health was categorized as excellent/very good, good, or fair/poor. A constructed ethnicity/race variable based on mother self-reported race and ethnicity was used. Symptoms of maternal depression were assessed utilizing the Composite International Diagnostic Interview Short Form (CIDI-SF). Women were categorized dichotomously (yes/no) as meeting depression criteria based on a conservative threshold determined by the FFCWB researchers. Chi square analyses and logistic regressions were performed to investigate sociodemographic factors at birth and the impact on child health. For proper estimation of regression coefficients and standard errors the Complex Samples module in SPSS 19 was used. Results Significant differences at birth were found among non-Hispanic Whites, non-Hispanic Blacks, and Hispanics on maternal education level, married/cohabitation status, family income, and low birth weight. Chi square analyses revealed racial/ethnic differences in mother-reported child health status at 12 months postpartum. More Latina mothers reported their children’s health status as fair/poor than either Whites or Blacks. Latina mothers also reported the lowest rates of Excellent/Very Good child health. To assess the impact of factors on child health status logistic regression was performed. The model contained race/ethnicity, maternal education, maternal age, low birth weight, and maternal depression. The full model containing all predictors was statistically significant. The full model explained 12.3% (Cox and Snell R square) and 21.1% (Nagelkerke R square) of the variance in children’s health status, and correctly classified 87.5% of cases. Only ethnicity/race, maternal education, and maternal depression made a unique statistically significant contribution to the model. Conclusions and Implications The results demonstrate the impact of child and maternal sociodemographic factors as well as maternal depression on children’s health at one year of age. The findings support the SCF-HSD model which emphasizes the impact of micro factors on disparities in health. Implications for approaching child health research with the SCF-HSD approach and practices to reduce disparities across racial/ethnic groups are reported.
The Centers for Disease Control (2014) estimates that 1 in every 68 children is affected by autis... more The Centers for Disease Control (2014) estimates that 1 in every 68 children is affected by autism spectrum disorder (ASD). Although a plethora of information is available about the possible causes, developmental trajectories of affected children, and diagnosis and treatment services, there remains a significant delay in diagnosis and treatment services for racial/ethnic minority children. The literature shows discrepant findings on prevalence, service access, and service use across race, maternal education level (Mandell et al., 2009), income (Porterfield & McBride, 2007), amount of health insurance coverage (Kilbourne, Switzer, Hyman, Crowley-Matoka, & Fine, 2006), and residence location (Mandell et al., 2009) among racial/ethnic minority children with ASD. Moreover, children with racial/ethnic minority backgrounds who receive a diagnosis of ASD often receive lower quality services than white children (Levy, Mandell, Merhar, Ittenbach, & Pinto-Martin, 2003; Mandell, Ittenbach, Lev...
Factors affecting disparities in early diagnosis and care for Latino children with autism spectru... more Factors affecting disparities in early diagnosis and care for Latino children with autism spectrum disorders (ASD) are reviewed through a socio-cultural lens. Other models of disparities do not include the expansive factors that contribute to disparities among Latino children nor do they incorporate the family experience raising a child with autism. This dissertation provides a summary model that serves as a foundation for two studies. Study 1 applies the summary model to Latino families raising children with ASD. The findings suggest that Latina mothers reported lower levels of family burden and pessimism compared to White mothers and endorsed positively worded items on family well-being and functioning. Study 2 tests the feasibility of a novel intervention that blends evidence-based practices for autism with culturally informed practices to specifically meet the needs of Latino children and families. Spanish speaking Latina immigrant mothers of children with autism participated in two eight session modules about general autism knowledge and services, advocacy skills, and strategies to work with their children. Post-test data revealed mothers reported increased knowledge about autism, better understanding of how to advocate for their children and themselves, and increased efficacy in using intervention strategies compared to their pre-tests. Suggestions for future research in psychology, and social work practice to improve the development and implementation of policies for and practice with Latino children with ASD and their families are discussed. strategies to improve diagnosis and treatment of autism among these populations (Interagency Autism Coordinating Committee, 2011). The Latino 1 population presents a unique challenge to exploring disparities in diagnosis and treatment among underserved children with autism. The young, diverse, and growing population of Latinos is faced with a confluence of factors impacting disparities. Little is known about culturally specific factors and organizational factors contributing and protecting against disparities. The purpose of this chapter is to investigate disparities in diagnosis and treatment, as well as help-seeking and receiving with a focus on autism spectrum disorders (ASD; interchangeable with autism) among Latino children and families. The Socio-Cultural Framework for Health Service Disparities (Alegría, Pescosolido, Williams, & Canino, 2011) frames the investigation with a particular focus on factors at the child, caregiver, and provider levels that contribute to the impact of autism on families. Treatment, service access and utilization are also examined across the child, caregiver, and provider levels Chapter II provides a review of the literature pertaining to children's health disparities 2 , Latino children and families, and autism, as well as a summary model of factors contributing to the impact of autism on families and factors to consider in developing interventions for Latinos are provided with implications for Latino children with autism and their families. 1 The term Latino is utilized throughout the paper. However, several literature sources and data use the term Hispanic. Thus, the terms are interchangeable throughout the text depending on the reference. Most studies have lumped subgroups under the Latino or Hispanic labels without distinguishing among groups. Latino or Hispanic include any person of Latin-American origin or ancestry. Subgroups are Cuban, Mexican, Puerto Rican, South or Central American. Although Latinos are continually lumped into one category, each group and members within it have diverse experiences with treatment seeking, feelings of support, and service utilization that should be taken into account in the development of interventions to improve early diagnosis and treatment of Latino children with autism. 2 The literature available for disparities in early diagnosis and treatment of Latino children with autism is limited. Therefore, research pertaining to Latino children with other developmental disabilities and chronic illnesses are included where appropriate.
Autism spectrum disorder (ASD) affects a substantial number of individuals and their families. Ea... more Autism spectrum disorder (ASD) affects a substantial number of individuals and their families. Early diagnosis followed by intensive behavioral services is critical to reducing social communication deficits and behavioral challenges. Research has continually demonstrated health disparities with Latinx families that perpetuate lower ASD prevalence rates, later ASD diagnosis, and limited access to treatment compared with white children. Moreover, Latinx children who are diagnosed with ASD receive less intense and fewer treatment services. Given the number of Latinx children and those with ASD, social workers are likely to encounter the intersection throughout their careers. Thus, it is critical for social workers to have general knowledge about autism and the complexity of accessing diagnostic and treatment services. In this article, the authors review the literature on Latinx children and ASD, and identify opportunities for social workers to be innovative in their use of frameworks, ...
Latinx faculty have an opportunity to influence a growing population of incoming Latinx students.... more Latinx faculty have an opportunity to influence a growing population of incoming Latinx students. As Chicana/Latina social work faculty, we seek to raise consciousness about our biculturalism and demonstrate how it could play a role in educating students. To that end, we highlight issues related to language. The meaning of language is complex, manifesting personally and politically. It is unclear how the relationship between identity and language intersect for individuals working in higher education. Thus, we draw on a theoretical model of bicultural competence and testimonios or first-person narratives to explore these issues in-depth, extrapolate meaning from experience, and report implications for research, teaching, and practice.
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