Debra Skinner

Needs and Supports Reported by Latino Families of Young Children with Developmental Disabilities.

We interviewed 200 Latino parents (50 Mexican couples, 50 Puerto Rican couples) living in the United States to determine needs and supports related to raising a child with a disability and to identify variables related to reported needs and supports. The pattern of needs expressed was similar to that found in previous studies, but the number was substantially higher. More support was reported from family and formal sources than from friends or informal sources. Using repeated measures of analysis of covariance involving six family variables and three child variables, we found that English language proficiency was the only variable to account for significant variance in needs and supports.

Narrating Self and Disability: Latino Mothers' Construction of Identities vis-à-vis Their Child with Special Needs:

We examine how 150 Latino mothers of young children with developmental disabilities use narratives to express and create self-understandings vis-à-vis their child. The purpose is twofold: (a) to introduce narrative as a tool that people use to make sense of disability, and (b) to demonstrate how these mothers draw on cultural beliefs and the narrative form to construct meanings of self in relationship to disability. An analysis of spontaneous narratives of self and disability reveal that the majority of mothers portrayed themselves as good mothers in line with larger cultural notions, and viewed their child as bringing about positive transformations in their lives. We end by suggesting ways that narrative analysis could be used in future research and practice.

Ethical, Legal, and Social Concerns About Expanded Newborn Screening: Fragile X Syndrome as a Prototype for Emerging Issues

Technology will make it possible to screen for fragile X syndrome and other conditions that do not meet current guidelines for routine newborn screening. This possibility evokes at least 8 broad ethical, legal, and social concerns: (1) early identification of fragile X syndrome, an “untreatable” condition, could lead to heightened anxiety about parenting, oversensitivity to development, alterations in parenting, or disrupted bonding; (2) because fragile X syndrome screening should be voluntary, informed consent could overwhelm parents with information, significantly burden hospitals, and reduce participation in the core screening program; (3) screening will identify some children who are or appear to be phenotypically normal; (4) screening might identify children with other conditions not originally targeted for screening; (5) screening could overwhelm an already limited capacity for genetic counseling and comprehensive care; (6) screening for fragile X syndrome, especially if carrier status is disclosed, increases the likelihood of negative self-concept, societal stigmatization, and insurance or employment discrimination; (7) screening will suggest risk in extended family members, raising ethical and legal issues (because they never consented to screening) and creating a communication burden for parents or expanding the scope of physician responsibility; and (8) screening for fragile X syndrome could heighten discrepancies in how men and women experience genetic risk or decide about testing. To address these concerns we recommend a national newborn screening research network; the development of models for informed decision-making; materials and approaches for helping families understand genetic information and communicating it to others; a national forum to address carrier testing and the disclosure of secondary or incidental findings; and public engagement of scientists, policy makers, ethicists, practitioners, and other citizens to discuss the desired aims of newborn screening and the characteristics of a system needed to achieve those aims.

Role of Religion in the Lives of Latino Families of Young Children With Developmental Delays

We interviewed 250 parents of Mexican and Puerto Rican origin living in the United States who had young children with developmental delays to determine the role of religion in their lives. Quantitative results indicate that parents largely viewed themselves as religious, were affiliated with a formal religion, and participated in religious activities. Most parents viewed both church and faith as supportive, but faith was shown to provide more support. Repeated measures a analysis of variance found some intragroup variations in religious support and changes in support after learning of the childs condition. Thematic analysis revealed specific religious beliefs and practices parents viewed as supportive, and content and cultural models analyses indicated the religious frameworks by which parents interpreted their childs disability.

Producing genetic knowledge and citizenship through the Internet : mothers, pediatric genetics, and cybermedicine

This article analyses data from a longitudinal, ethnographic study conducted in the United States to examine how 100 mothers of children with genetic disorders used the Internet to interpret, produce, and circulate genetic knowledge pertaining to their childs condition. We describe how they came to value their own experiential knowledge, helped shift the boundaries of what counts as authoritative knowledge, and assumed the role of genetic citizen, fighting for specific rights while shouldering and contesting concomitant duties and obligations. This exploration of e-health use contributes to our understanding of the social practices and power relations that cut across online and off-line worlds to co-produce genetic knowledge and genetic citizenship in multiple contexts.

Awareness, Use, and Satisfaction with Services for Latino Parents of Young Children with Disabilities.

We interviewed 200 Latino parents of young children with disabilities to determine awareness, use, and satisfaction with services. We also examined use of alternative treatments and the relationship between child and family variables and awareness, use, and satisfaction. A high degree of awareness was noted but only a moderate degree of satisfaction was found. Mothers were more aware of and perceived use of more services than fathers. With few exceptions, family and child variables bore little relationship to awareness, use, or satisfaction. No families pursued alternative treatments as their primary source of help, although several used them in a minor way. Program variables may be more likely determinants of service use and satisfaction than family factors alone.

Family experiences and factors associated with the diagnosis of fragile X syndrome.

&NA; The authors interviewed 41 mothers of young boys with fragile X syndrome to determine the process by which they learned their child had fragile X syndrome. The average family had concerns about the childs development at 9 months of age. Developmental delay was determined at an average age of 24 months, and fragile X syndrome was diagnosed at a mean age of 35 months. Considerable variability was found in age of first concern, determination of delay, and diagnosis of fragile X syndrome. Three child variables (severity of delay, autistic behavior, temperament style) and four family variables (mothers age, mothers education, sibling status, social support) did not account for this variability, although birth year did (children born more recently were somewhat more likely to be identified earlier). Families often encountered physicians who initially discounted concerns or said that it was too early to determine whether a problem did indeed exist. Given current knowledge and practice, improving the early identification (under 3 years of age) of children with fragile X syndrome is likely to remain difficult if based solely on behavioral and clinical observations.

Newborn Screening for Developmental Disabilities: Reframing Presumptive Benefit

A fundamental tenet of newborn screening is that screening should lead to a proven benefit for the infant. The standard is usually construed as medical benefit that significantly improves a childs health. Screening for many conditions that cause developmental disabilities does not currently meet this standard. We argue for expanding concepts of presumptive benefit. Newborn screening provides access to early intervention programs that are shown to positively influence child development and support families. Consumers want information about their childrens health and their own reproductive risk, and they have a broader view than policymakers of what constitutes a treatable disorder. Newborn screening provides other societal benefits that, in the absence of data showing harm and with appropriate attention to ethical and legal issues, warrant consideration of an expansion of targets for newborn screening.

Perceived Quality of Life in Mothers of Children With Fragile X Syndrome

A mixed method approach was used to explore quality of life of 101 mothers of children with fragile X syndrome. Mothers completed a self-report of personal quality of life and measures of mental health and well-being. A subset was interviewed about quality of life. The distribution of scores on the Quality of Life Inventory was similar to the norms, indicating that these mothers do not, as a whole, report a lower quality of life than does the average woman. Significant predictors of quality of life were trait hope and parenting stress. The most common positive factor was being a mother. However, they also indicated that parenting a child with fragile X presented challenges and stressors, primarily when the social environment was not supportive.

Qualitative Analysis of Latino Parents' Religious Interpretations of Their Child's Disability.

The purpose of this study is to demonstrate three ways of analyzing qualitative interview data: content, cultural models, and narrative analyses. We draw upon the same set of interview data with 250 Latino parents of young children with mental retardation or developmental delay to illustrate these three types of analyses. Interwoven with the analyses are suggestions for ways in which studies in early intervention could be extended by considering different approaches to examining qualitative data.