Sandra Magaña

Racial and ethnic disparities in quality of health care among children with autism and other developmental disabilities.

We examined racial and ethnic disparities in quality of care for children with autism and other developmental disabilities and whether disparities varied for children with autism compared to children with other developmental disabilities. Analyzing data from the National Survey of Children with Special Health Care Needs (N  =  4,414), we compared Black and Latino children to White children. We found racial and ethnic disparities on 5 of 6 quality outcomes. The interaction between race and disability status indicated that disparities in quality indicators were exacerbated among families of children with autism. These analyses suggest that children with autism, particularly those who are Latino and Black, face greater challenges in receiving high-quality health care.

Access to diagnosis and treatment services among latino children with autism spectrum disorders

There is greater identification of children with autism spectrum disorders (ASD) and, as a result, more attention to specialty services to address the challenges children with ASD face. Along with the growth in identification of ASD is a growth in the population of Latino children, yet there is some evidence that disparities exist in diagnosis and services between Latino and non-Latino White children. This study further documents these disparities and investigates the mechanisms that may contribute to them. Diagnosis and specialty services were compared between 48 Latino and 56 non-Latino White children diagnosed with ASD, and factors that contribute to differences are explored. Results show that Latino children were diagnosed almost one year later than White children, received fewer specialty services, and had higher unmet service needs. Factors that accounted for differences in the number of services received were maternal level of education and the number of sources of knowledge about autism. Findings suggest that service providers need to work to provide greater awareness and knowledge about autism, and make services more accessible to Latino families.

Psychological distress and well-being of latina and non-latina white mothers of youth and adults with an autism spectrum disorder: Cultural attitudes towards coresidence status

This article examined the emotional well-being of 108 Latina and non-Latina White mothers who were coresiding with a youth or adult with an autism spectrum disorder (ASD). It was hypothesized that Latina mothers would be more satisfied with coresidence than non-Latina White mothers, and that satisfaction with coresidence would mediate the relationship between ethnicity and outcomes. When controlling for demographic characteristics, non-Latina White mothers were more distressed and had lower levels of psychological well-being than Latina mothers. As hypothesized, satisfaction with coresidence mediated this difference. Qualitative analysis revealed that both groups of mothers valued family cohesion as a positive aspect of coresidence. However, Latina mothers were less likely to report negative aspects of coresidence than non-Latina White mothers.

Health outcomes of midlife and older latina and black american mothers of children with developmental disabilities

The impact of caring for a child with a developmental disability on the physical and mental health of Latina and Black American women was examined. We used the National Health Interview Survey to compare the health of older mothers who were co-residing with a child who had a developmental disability to the health of same age mothers without caregiving responsibilities. Findings show that for both groups, older adult caregivers were more likely to report having limitations from arthritis than their noncaregiving counterparts. Caregiving was associated with more depressive symptoms for Latinas, but this relationship was not found for Black American women. Findings suggest that physical and mental health of caregivers need more attention in research and practice.

Cultural Context of Caregiving: Differences in Depression Between Puerto Rican and Non-Latina White Mothers of Adults With Mental Retardation

Differences in depression between Puerto Rican and non-Latina White mothers providing care to their adult child with mental retardation were examined. The focus of this study is on how family problems may mediate the effect of the adults behavior problems on the mothers level of depressive symptoms and how this process differs across the two groups of mothers. As hypothesized, family problems was a stronger predictor of depressive symptoms for Puerto Rican mothers than for non-Latina White mothers. In addition, Puerto Rican mothers were in poorer physical health, which further accounted for differences in depression between the two groups.

Hispanic caregivers of adults with mental retardation: importance of family functioning.

Our aim in this study was to validate a stress-process model for Hispanic caregivers of adults with mental retardation that incorporates family functioning. The model postulates that maladaptive adult behaviors are related to poorer family relationships and higher levels of family burden, which in turn is related to caregiver psychological distress and self-reported health. The 153 Hispanic caregivers were interviewed in their homes with structured interviews and self-report measures. We analyzed cross-sectional data using structural equation modeling. The hypothesized model provided an excellent fit to the data. Also, family relationships mediated the relationship between maladaptive adult behaviors and family burden, and higher levels of family burden were related to greater caregiver distress. Acculturation was negatively related to caregiver distress.

Service Utilization Patterns of Adults with Intellectual Disabilities: A Comparison of Puerto Rican and Non-Latino White Families

Abstract The increasing ethnic diversity in the U.S. population raises important challenges for community service systems. Little is known about the extent to which service systems meet the needs of different communities of color. This paper examines service utilization and unmet needs of Puerto Rican adults with intellectual disabilities (ID) in comparison to non-Latino white adults with ID to understand better the experiences of midlife and aging families from diverse backgrounds who have entered the service system. In addition, we examine the relationship of maternal support groups to service utilization and unmet service needs. We hypothesize that support groups would be an important resource for Puerto Rican mothers of adults with ID in facilitating greater use of formal services and decreasing the level of unmet service needs for their son or daughter with ID. Findings indicate that Puerto Rican adults with ID in this study had more severe impairments, received a comparable number of services, and had higher unmet service needs than non-Latino white adults with ID. In the multivariate analysis we examined factors that contribute to service utilization and unmet need for each group. We found that maternal support group participation was a significant predictor of greater service utilization and lower unmet need for Puerto Rican adults with ID, but not for non-Latino whites. These findings suggest that offering caregiver support groups may be a culturally relevant way for service systems to reach out to Puerto Rican families.

Mental retardation research methods in Latino communities.

The importance of understanding specific methods and strategies for conducting mental retardation research in Latino communities is discussed. Research methods used in the recruitment and analysis of a sample of 72 Puerto Rican mothers of a son or daughter with mental retardation are described. The emphasis is on the importance of involving the community in many aspects of the study in order to (a) ensure that the community benefits, (b) strengthen the scientific integrity of the study, and (c) facilitate sample recruitment.

It's Just That Much Harder Multilayered Hardship Experiences of Low-Income Mothers With Disabilities

This article reports on a focus-group study that examined the experiences and perspectives of low-income mothers with disabilities who were receiving disability income transfers. The women faced severe deprivation and multilayered hardships. Their impairments were not their central problem, but they intersected with the challenges associated with the womens poverty and single-parent status. The women coped with or resisted their hardships by serving as advocates for their and their childrens needs, accessing resources from safety-net services and their families, and relying on their religious beliefs. The womens aspirations included setting a moral example for their children, securing a better life for their children, and wanting to work. Implications for policy and practice are discussed.

Well-Being and Family Role Strains Among Cuban American and Puerto Rican Mothers of Adults with Mental Retardation

Abstract This article examines predictors of depressive symptoms and caregiving burden in a sample of Cuban American and Puerto Rican caregivers of an adult child with mental retardation. Using a stress process model of caregiving, the focus of this analysis was on family role strains that result from the caregiving process, which were hypothesized to be particularly strong predictors of maternal well-being in Latino families. Findings indicate that Cuban American mothers of adults with mental retardation had higher socioeconomic status than Puerto Rican mothers, yet there was a substantial amount of within-group heterogeneity in family socio-demographic characteristics, linked closely with immigration patterns for the Cuban American mothers. However, taking into account socio-demographic diversity and ethnicity, findings demonstrate that mothers whose family had more problems had higher levels of burden and depressive symptoms, supporting the hypothesized importance of family functioning to Latina mothers with a non-normative parenting challenge.