1 Discovering successful pathways in children's development: Mixed Methods in the Study of Childhood and Family Life Conference Symposium: Culture and developmental pathways: New methods and findings. Tom Weisner, organizer
An ethnographic study of parents' constructions of developmental opportunities in contexts of poverty and disability
We have two main goals in this presentation. One is to demonstrate the combination of ethnographic methods and geographic information system/analysis (GIS/GIA) technologies to examine how low-income families construct developmental opportunities for their young children with disabilities. Another goal is to discuss how these two methods, alone and in combination, contribute to sociocultural and ecological understandings of development, help situate families’ actions and experiences in time and space, and enhance data analysis and interpretation. The data reported here were collected as part the larger Welfare, Children and Families: A Three City Study, currently being conducted in Boston, Chicago, and San Antonio. The Welfare, Children, and Families Study combines surveys, an embedded development study, and ethnographic research to evaluate the consequences of welfare reform for the well-being of children and families (Slide 1). The ethnographic component consists of 215 African American, Latino, and European American families across the three cities. Of these, forty-five families were recruited specifically because they had a child birth to 8 years of age with a moderate or severe disability.
2 For all families in the ethnographic sample, fieldworkers employ participant observation and in-depth interviews to assess how children and families are faring in contexts of economic hardship and reforms in public assistance programs. We follow a method of “structured discovery,” where interview and observation protocols focus on specific topics of interest, but allow for flexibility to capture unexpected findings and relationships (Burton ref ). In the intensive data collection period (12-18 months), ethnographers meet once or twice a month with families, focusing interviews and observations on the family’s work and welfare experiences, routines, health status and health care access, child rearing practices and beliefs, child care arrangements, home and neighborhood environments, economics and resources; and how these and other domains interrelate (Slide 2). Over the next 18-24 months, fieldworkers will continue to meet with families, though less often, to collect more data on these topics and note changes in these domains (Slide 3). For this presentation, we have analyzed the ethnographic data collected so far on 43 families of young children with disabilities, specifically for the ways in which these families construct developmental opportunities for their children with disabilities. Guiding our analysis are anthropological and sociocultural perspectives on child development that provide models for conceptualizing and documenting the influence of sociocultural contexts and activities on child outcomes. There is a long history of anthropologists examining child socialization and development within cultural contexts (Super & Harkness, 1980; Whiting & Edwards, 1988; Whiting & Whiting, 1975), and a more recent movement among some developmental psychologists to examine closely the sociocultural context and activity settings of child development (Cole & Cole, 1996; Rogoff, 1990; Valsiner, 1989; Winegar & Valsiner, 1992). Whether the emphasis is on developmental niches (Super & Harkness, 1980), ecocultural niches
3 (Weisner, 1984), ecological contexts of child development (Bronfenbrenner, 1979), activity settings (Farver, 1999; Rogoff, 1990; Tharp & Gallimore, 1988), cultural places (Weisner, 1996), or cultural worlds (Holland, Lachicotte, Skinner, & Cain, 1998), the basic idea is that children develop within settings and daily activities that are co-constructed and inhabited by cultural and social others, imbued with meanings, and shaped to some degree by larger sociocultural, economic, and political conditions. Specific settings and activities, such as the family’s daily routines, caregiving practices, or early intervention services, organize children’s experiences and work to place the child on a particular developmental trajectory (Harkness & Super, 1996). Also significant to our analysis is the understanding of development as a process taking place on and among different levels: the individual, interpersonal, community, national, and even global. As Rogoff et al. (1995) state: “Development is a process of participating in sociocultural activities. Individual development is inseparable from interpersonal and community processes.” Viewed from this approach, when parents of children with disabilities work with professionals to plan the therapeutic and educational interventions their child may need, they are involved in a culturally organized activity, one shaped and mutually constituted by parents themselves, professionals, formal institutions, programs, and policies. Not only does the activity have implications for the child’s development, but the development of other individuals and systems. Our analysis is also informed by an ecological approach, especially as it has been developed and expanded by a number of studies on families of children with disabilities, the adaptations they make, and the ecological and systems factors that influence adaptations and outcomes (Gallimore, Coots, Weisner, Garnier, & Guthrie, 1996; Guralnick, 1997; Sameroff &
4 Fiese, 2000; ; Trivette, Dunst, & Deal, 1997; Weisner, Matheson, & Bernheimer, 1996). It is from this literature that we borrow the notion of developmental opportunities. Garbarino and Ganzel (2000), in a chapter entitled “The Human Ecology of Early Risk,” defined “opportunities for development” as “relationships in which children find material, emotional, and social encouragement compatible with their needs and capacities as they exist at a specific point in their developmental lives.” Employing a ecological systems approach, they see both developmental risks and opportunities for the child in the interaction of biological, psychological, social and cultural forces. For children at risk or with disabilities, developmental opportunities (and risks) exist in the home; in community institutions such as hospitals, day care, early intervention services, and schools; and in state and federal programs that provide services and financial assistance (e.g., Medicaid SSI, early intervention, TANF). Creating developmental opportunities for children with disabilities takes caregivers beyond the confines of the home to interactions with a number of individuals, agencies, and policies. Their ability to garner resources, navigate a path through bureaucracies, link agencies and information, fight for their child’s services and rights, and access sources of support in these endeavors may significantly affect their child’s developmental trajectory. Although important ethnographic studies of persons with disabilities and families of children with disabilities exist (Edgerton, Angrosino, Gallimore, Weisner, & colleagues), relatively few ethnographies have focused specifically on the intersection of poverty, childhood disability, and child development: what it means to a child’s development to have a disability and to live in a family with limited economic resources. We address this question in part by examining our ethnographic data for the ways in which low-income families organize or construct developmental opportunities for their child with a disability, and noting the broader
5 contexts that shape these constructions. Weisner (1996) contends, and we agree, that the ethnographic method is the most important method in the study of human development because it ensures the description and understanding of those places, practices, and activities in and by which children and families develop, and the factors that constrain or enable their efforts. It allows us to examine the complex relationships among contexts and activities that sociocultural and ecological approaches require.
The Study The data reported here are from observations and interviews with 43 families, who at the time of recruitment into the study, had a child 8 years or younger with a moderate to severe disability. We purposely included families whose children represented a broad range of disabilities and needs, and thus, presented different issues for families (e.g., children with autism [high impact behavioral issues]; Down syndrome [cognitive delays and possible health problems]; spina bifida [high impact medical]; and cerebral palsy [physical and perhaps cognitive delays]). Diagnoses of the children include cerebral palsy, Down syndrome, seizure disorder, severe ADHD, significant developmental delays, visual and hearing impairments, spina bifida, Pervasive Developmental Disorder, autism, chondrodysplasia punetata, various syndromes (e.g., Kartagener syndrome, Angelman syndrome, and Cri-du-chat syndrome), severe asthma, and other involved medical conditions. Twenty-seven of these children receive SSI payments for their disability. The average age of focal children from the 43 families at the time of recruitment was 52 months. Thirty-three were 5 years of age or younger. The average age of the main caregiver (in most cases, the biological mother) was 33 years. In 35 of the 43 families, biological mothers
6 were the main caregivers. In 4 families, grandmothers were the guardians or foster mothers of the child, and in 2 families, aunts served as adoptive mothers or guardians. There was one family where a widowed father was the main caregiver and another where the adoptive mother was not a relative of the child. One-fourth of the caregivers worked, though mostly at part-time jobs with low wages and few benefits. One-fourth had some kind of disability or functional limitation themselves. Twenty-three percent (n=10) of the households had another member with a disability in addition to the focal child and caregiver. This incidence of disability resulted in 77% of the households receiving SSI payments for at least one member. At the time of recruitment, half of the 43 families were receiving cash assistance from TANF. Forty-four percent of all households received both SSI and TANF support.
Ethnographic findings (will be expanded for chapter) For many of the families, because the needs of the child with a disability are sometimes profoundly evident, the child’s development is not a taken-for-granted experience. The families in our sample had a heightened sensitivity of having to work harder to facilitate their child’s health and development. There was often an immediacy and an emotional and moral urgency to caring for their child on an hour to hour basis, standing by as needed for emergencies, and procuring the services and resources that they perceived their child as needing. For most of the families, having a child with a disability necessitated routines built around the child and piecing together and navigating a network of therapeutic, educational and social services. The majority of families in our study viewed fostering their children’s health and development as encompassing a range of activities. When asked how they promoted their child’s development, they talked about trying to provide a safe and clean environment, good nutrition,
7 and a variety of learning opportunities. They sought out inexpensive toys, games, books and recreational and educational experiences for their children, and worked to include the child with disabilities in these and other family activities. Salient also to their notions of development was the provision of appropriate health and medical care and therapeutic treatments. It was not unusual for a child to have a host of therapists, doctors, and teachers, and for caregivers to have numerous appointments every week with these and other specialists. Rosa, a Mexican American mother living in San Antonio, recounted to the interviewer how she promotes her daughter’s development. Her daughter Maria, aged 3, has severe visual impairment. Rosa is concerned especially with her physical and language development. Maria receives services in a school-based program, but Rosa devotes much of her time to working with Maria at home. Rosa says she constantly exercises Maria’s arms and legs. She uses musical toys to help Maria learn to discriminate different sounds and hum different tunes; she gives her stuffed animals and other objects so that she can palpitate them and feel their texture, size and shape. During any activity with Maria (mealtime, bedtime, bathing time), Rosa talks to her, telling her what she is going to do. She works to promote her self-help skills, but this is more difficult since Maria does not have the physical capacity to feed or dress herself. For this reason, Rosa is searching for a physical therapist who can come to the home to work with Maria on her motor skills. Previously, when the early interventionists came to her house, she watched what they were doing with Maria and learned from them techniques and therapies she continues to carry out with her. Rosa sees her work with Maria as crucial to developing the skills she will need to succeed in school, and this work includes not only her own activities with Maria in the home, but finding the specialists she feels Maria needs.
8 Most of the families were involved in enlisting a wider community in aiding their child as they sought out and pieced together a range of services they saw as enhancing the child’s health and development. They had constructed, sometimes on their own and sometimes with the aid of other persons and agencies, a community of resources focused on the child with disabilities: early intervention or special education services; specialized medical care and treatments; social services and public assistance programs that could help provide necessities for the child and family (e.g., SSI, TANF, food stamps, Medicaid, transportation, specialized equipment); and other supports (counseling, advocacy and legal efforts). Some of them became increasingly involved in monitoring their child’s services, volunteering in their child’s classroom, becoming active participants in deciding therapies, and sometimes fighting with the schools for certain services. Caregivers also learned therapies from child’s service providers or teachers, which they administered at home. Leticia, a mother in Boston, whose 7-year-old son has been diagnosed with Pervasive Developmental Disorder, provides an example of these kinds of activities. Her son, Roberto, is in a special program at school where he receives some services. She told the interviewer, “Roberto is a very, very difficult child.” She sought out special training on how to care for him in the home, and she attends a mothers’ support group which she says provides support for the issues involving her children. Leticia told the interviewer, “So many people work together for me,” and named the therapists, psychiatrist, counselors, teachers, physicians, pediatrician, nutritionist, and social worker who work with Roberto. She also talked about SSI, food stamps, and Medicaid as crucial resources. Managing all the appointments and paperwork puts stress on her and other family members. She says she sometimes feels depressed and wants to run away, but she continues her efforts to help Roberto.
9 Families see this community of services as providing developmental opportunities for their child, or supports that help them in sustaining daily routines and basic needs that promote family well-being (see also Gallimore, Bernheimer, & Weisner, 1999). From the sociocultural and ecological perspective, these systems and activities in part shape parents’ notions of disability and what their child needs. As caregivers enter these worlds and become coparticipants with professionals in constructing services for the child, they may learn a language of early intervention, disability, development, services, and advocacy. They may become agents and advocates for the child, and their identities as mother or advocate may form in particular ways (see Skinner, Bailey, Correa, & Rodriguez, 1999). Many caregivers devote much of their time to optimizing developmental opportunities for that child by caring for him or her, procuring services and therapies, and garnering the resources necessary to make ends meet. As they construct these developmental opportunities, they are engaged in worlds and activities that may foster certain identities and transformations in themselves. There is a co-development of child and caregiver.
GIS Data GIS gives us another way to look at the time-consuming nature and intensity of effort many families put forth to piece together a community of services. GIS is a type of information management system that represents data in spatial images. Basically, it makes maps. Using the concept of geographic overlay, data from different sources can be linked to common geographic coordinates (e.g., streets, census tracts). GIS can pinpoint circumscribed areas and particular locations as well as depict events and movements. In this study, we use ethnographic fieldnotes,
10 geographic coordinates, and GIS technology to link data and create visual displays of the spatial and temporal aspects of how parents navigate services. We have tried, by integrating the ethnographic data on families and neighborhoods in our three cities within a GIS, to extend the work on child well-being both conceptually and methodologically. Our goals have been to think creatively about how GIS can be used in child well-being-related research, and to stretch the GIS technology and revise the methodologies we currently use. Our application of GIS focuses on both retrofitting data on contexts or "neighborhoods" (necessitating a re-conceptualization of context) and the integration of ethnographic data on low-income families of children with disabilities to help better understand their mobility, utilization and accessibility to services, and an array of well-being-related issues. Combining ethnographic data and GIS methods helps researchers see “context” as well as “content” (that is, helping researchers identify important spatial dimensions of a problem). In brief, we use existing data sets, augment them with new and refined measures of spatial context and structure (of the urban environment), integrate the data with ethnographic data and then analyze the data using data visualization/mapping techniques. Here we present case studies of two families’ routines built around meeting their child’s health and development needs. These cases highlight the daily, weekly and monthly routines of families as they navigate a world of services for their child with disabilities—services they view as promoting their child’s health and development. The following slides are geographic representations of selected fieldnotes on two families from Boston. The first family is European American. The mother, Delores, is 30 years old and has seizure disorder and partial paralysis due to a stroke when she was 5 years old. She is the main caretaker of John, her 14-month-old son with gastrointestinal problems, seizures, and allergies; a 2-year-old daughter who has bent legs
11 that require braces, and an 11-year-old son. The father of the two youngest children sometimes resides in the household. We have extensive fieldnotes on approximately 24 interview and observations over a one-year period on this family, including Delores’ records for one month of her activities related to her children’s medical, educational, and therapeutic services. During November 2000, Delores attended 27 meetings with her children’s specialists. Of these, 13 were in the home where early interventionists came to work with John. The remaining 14 meetings were held at one of 10 locations across the city: 3 Head Start locations, 2 hospitals, 1 early intervention center, 1 health clinic, 1 dentist. These meetings involved meeting with Head Start teachers to review her children’s progress and revise their education plans, attending a parent leadership project meeting, and other activities related educational and health services for her children. The fieldnotes include a list and description of the events and meetings she attended, but another way of representing the data is to use maps and integrate the ethnographic data within a Geographic Information System (GIS). Using a GIS, we are able to create maps that show the location of the places Delores had to travel for services and their distance from her home (Map 1). As you see here, this map includes links to fieldnote files that contain details of Delores’ visits. Map 1 also provides a representation of what we are calling “the community of development,”—those agencies that some families rely on to provide services that enhance their child’s development. Another example depicts both the spatial network of services and the intensity of time and effort in constructing developmental opportunities for children in community settings. This case involves an African American family, consisting of the mother, Marjorie, who receives SSI for her own disability, and her 4 children. Three of her children receive special health, counseling, or education services. On any given day, Marjorie may drive four hours to take her
12 children to school or Head Start where they receive some services, and to medical and health centers. Map 2 depicts the locations where Delores’ children receive services. Map 3 adds a depiction of the intensity of the visits per week.. Map 4 shows the link to fieldnotes that record the reasons Delores traveled to the health center 2-4 times per week in November (e.g., for a variety of therapies, counseling sessions, dental and medical treatments). Using GIS mapping, we gain a visual portrayal of the community resources that figure into Delores’ daily routines constructed around her children’s health and development.
Benefits and Challenges of Combining Methods For this conference, we were asked to comment on what we perceive as the contributions and challenges of combining methods. For us, the value of the ethnographic approach is the rich descriptive data that allow us to represent to others what it is like to be low-income, minority, and disabled, within particular social, political, and community contexts. Ethnography provides a breadth and depth of information on the day-to-day lives of families of children with disabilities, the process and contexts of their development, and the larger cultural, economic and political worlds that influence them (see Weisner, 1996). It provides an in-depth examination of the constraints that poverty and disability place on an individual child’s developmental trajectory and on family adaptations, yet it also provides data on the ways that caregivers work to construct positive developmental outcomes, in part by constructing a network of services. As for GIS, I was resistant to combining GIS technology with the ethnography. I was not convinced that it added anything to the interpretations that could be made from textual data alone or that could be portrayed to others in a coherent narrative minus the pictures. I was worried that complex stories would be flattened out and simplified in two dimensional geographic models,
13 and that taken out of the context, these models could be used to reach the wrong conclusions. Curry (1998), in his critique of GIS, argues that there are substantial limits to this technology’s ability to enhance the objects, relationships, people, and places it is meant to represent. But GIS can act as an effective tool by depicting, in a way that has immediate impact, families’ movements through a community and the intense effort it takes for some families to create and maintain a network of services aimed at promoting their children’s health, well-being, and development—an effort that might surprise some policy makers. GIS may also prove to be an effective tool in suggesting interpretations that we might otherwise overlook. For instance, it may help us pinpoint more quickly those families who are more isolated, have fewer supports or outside resources and services. We can then look to the ethnographic data to examine why this may be the case. GIS may also help us see how far afield families have to go for different types of services, and lead us to conclusions about the relationship of community resources to family and child outcomes. An integration of GIS technologies with the ethnographic data will help us visualize the multiple sites where development takes place and the impact of child disability on family routines as depicted in time and space. Maps of families’ navigations may foster comparisons not as easily perceived through reading text alone, for example, how families’ constructions of developmental opportunities may differ within and between sites and ethnic groups, as well as by family and child characteristics and local resources. (Elaborate practice and policy implications—e.g., GIS a possible tool for service agencies to use to locate and provide convenient and appropriate services, to foster collaboration. One policy implication of concern to professional who provide services to children with disabilities: if mothers of these children are moved from welfare to work and have less time to devote to
14 locating and managing services, children may receive fewer services/interventions, and their development may be less optimal. Where will the climate of welfare reform and the rhetoric of self-sufficiency leave these families? Sameroff’s (2000) points out that many children with disabilities left without interventions would develop additional or secondary disorders, lose mobility and cognitive gains.)
Add Conclusion/Closing points (Go back to theoretical points of sociocultural/ecological perspectives on development—broaden the concept of development out more to the world of services, and taking that world as an integral part of the cultural context of a child’s development. Reiterate value of combining methods for our purposes.)
(For the chapter, we’ll probably do more analysis on the local ecologies of families, the influence of family management strategies on child outcomes, and families’ resource seeking beliefs, and notions of child development.)