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All research has the potential to affect people, ethnographers delve into the life of the every day of their participants, they walk their walk, talk their talk and strive for valid, in-depth contextualised data, gathered over a longitudinal and often intimate basis. Ethnography is explorative and inductive. It is messy, unpredictable and complex. Ethnography conducted with young people and children adds to the intricacy of managing ethically sound research practice within and beyond the field. In recent years, ethnographies with children, young people and families have become increasingly prominent, yet few scholars have written about conducting ethnographic research with children and young people (Albon & Barley, 2021; Levey, 2009; Mayeza, 2017). The ethnographer that works with children and young people needs to be aware that the power relationship between adults and children operates in complex and sometimes surprising ways and so needs to be ethically aware, ethically reactive and be prepared to be ethically challenged.

Barbara M. Altman, a Sociologist with a Ph.D. from the University of Maryland, is currently a Special Assistant on Disability Statistics at the National Center for Health Statistics and an Adjunct Associate Professor at the University of Maryland, College Park. Her previous position was Senior Research Fellow with the Agency for Healthcare Research and Quality. She is a past president of the Society for Disability Studies and served on the founding Board of Directors of that organization. Her disability research interests focus in three areas: operationalization of disability definitions/measures in survey data; access to, financing and utilization of health care services by persons with disabilities, particularly working age persons and women with disabilities; and disability among minority groups. She is the author of a number of articles and book chapters on disability topics, and has served as editor of special issues of Disability Studies Quarterly and Journal of Disability Policy Studies. She is co-editor of this series Research in Social Science and Disability.Deborah J. Anderson, Ph.D., has conducted policy research in the area of Aging and Developmental Disabilities at the University of Minnesota since 1985. Her studies have included analyses of the health status, health conditions and health-related limitations and needs of older adults with mental retardation living in a variety of residential settings as well as in their own homes. These studies have included a longitudinal study of a 10% sample of older adults living in residential facilities licensed by developmental disabilities agencies, the National Nursing Home Survey of 1985, the National Medical Expenditure Survey of 1987, and the National Health Interview Disability Supplement (NHIS-D) of 1994–1995. She has also studied careproviders of older adults with mental retardation, innovative programs serving aging adults with developmental disabilities/mental retardation, and state agencies’ preparation for serving adults with mental retardation as they aged. Most of this research has been conducted as part of the NIDRR-funded RRTC on Aging and Developmental Disabilities. Dr. Anderson is also an Associate Professor in the Department of Psychology at St. Olaf College in Northfield, MN.Lynda L. Anderson, M.A., M.P.H., is a Resource Manager at No Place like Home in Robbinsdale, Minnesota. Ms. Anderson earned a Master of Arts degree in Human Service Administration and a Master of Public Health degree in Community Health. Ms. Anderson is a doctoral candidate in Work, Community and Family Education at the University of Minnesota. She has more than eighteen years of experience working with people with disabilities as a Direct Support Professional, Program Director, and Researcher. She has participated in NHIS-D analysis activities for the last five years.Sharon N. Barnartt, Ph.D., is Professor of Sociology at Gallaudet University. She has co-authored two books: Deaf President Now: The 1988 Revolution at Gallaudet University (1995) and Contentious Politics in the Disability and Deaf Communities (2001). She has also presented papers and published widely in the areas of socio-economic status and disability/deafness, legal and disability policy issues, and social movements in the deaf and disability communities. She is a former president of the Society for Disability Studies, co-editor of Research in Social Science and Disability and on the editorial board of Journal of Disability Policy Studies.Phillip W. Beatty, M.A., is a Senior Research Associate at the National Rehabilitation Hospital Center for Health & Disability Research in Washington, DC. His recent research focuses on predictors of access to health services among adults with disabilities. Mr. Beatty is also conducting research to determine the ways in which functional outcomes information is being used by stakeholders in the medical rehabilitation industry.Edward Brann, M.D., M.P.H., is Acting Director of the Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention. The division conducts a number of research and program activities for people with disabilities.Hong Chen, M.S., is an Economist in RTI International’s Division of Health Economics Research. His work focuses primarily on the analysis of large claims and survey databases, with an emphasis on diabetes prevention, substance abuse, and competitive bidding for durable medical equipment.Lisa J. Colpe, Ph.D., M.P.H., is a Clinical Epidemiologist Specializing in Survey Design and Research. At the time the work on this chapter was done, she was an Epidemiology Training Program Fellow in the Division of Health Interview Statistics, National Center for Health Statistics.Roger B. Davis, Sc.D., is Associate Professor of Medicine at Harvard Medical School and Associate Professor of Biostatistics at the Harvard School of Public Health. Dr. Davis has overseen the statistical design of numerous clinical trials, especially involving cancer and AIDS therapies. An expert in survival analysis, he also participates in health services research and clinical epidemiology studies with colleagues at Beth Israel Deaconess Medical Center, where he serves as Biostatistician in the Division of General Medicine and Primary Care.John Drabek, is an Economist in Office of Disability, Aging, and Long-Term Care Policy in the U.S. Department of Health and Human Services. He received his B.A. in Economics from Northwestern University, and his Ph.D. in Economics from the University of California, Santa Barbara. Prior to joining the federal government, he performed research at the University of Southern California, and at the University of California, Los Angeles.Laura J. Dunlap, M.A., is a Health Economist in RTI International’s Center for Interdisciplinary Substance Abuse Research. Since joining RTI in 1994, she has worked on studies analyzing the costs and benefits of substance abuse treatment, the effect of treatment services on post-treatment outcomes, and the costs and cost-effectiveness of public health and treatment interventions aimed at special populations such as drug users and low-income women.Holly J. Fedeyko is a former employee of the Disability and Health Branch, CDC in Atlanta, Georgia. While at the CDC she focused her efforts on Research in disability issues as related to questions from the National Health Interview Survey. She received her M.P.H. in Epidemiology and Environmental Health from Emory and her B.S. in Biology from McGill. She is currently employed as an analytical consultant for a private company and now resides in the San Francisco Bay area.Frances K. Goldscheider, University Professor and Professor of Sociology, began her Brown career in 1974. Since obtaining her Ph.D. in Demography from the University of Pennsylvania in 1971, Goldscheider has focused her research on census and survey data to address questions related to family structure and coresidential relationships, examining causes and consequences of change. Goldscheider pioneered research on the single-person household, and on home leaving and return to the nest of young adults, and has examined issues of labor force and family decisions of 20th century American women. She is an expert on family structure and relationships, fertility, parenthood, household economy, and marriage. Her intergenerational focus (on the living arrangements of young adults and the elderly) has expanded to include gender issues, particularly marriage and divorce, with a strong concern with the consequences of family structure for investments in childhood and young adulthood. Recent research interests include men’s roles in parenting and in the family.Scott D. Grosse, Ph.D., is a Health Economist at the National Center for Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention. He conducts applied research on the costs associated with various childhood conditions and economic evaluations of screening programs and interventions intended to improve health and developmental outcomes in children.Gerry E. Hendershot, Ph.D., is a Consultant on Disability and Health Statistics. From 1985 to 2001, he held various positions on the staff of the National Health Interview Survey, including Assistant to the Director for Data Analysis and Dissemination. He had a lead role in promoting, designing, and analyzing the National Health Interview Survey on Disability. He is the author of many published statistical reports on disability and other health-related topics.Dennis P. Hogan, Professor of Sociology, joined the Population Studies and Training Center at Brown University in 1995. He received a Ph.D. in Sociology from the University of Wisconsin-Madison in 1976. He has taught at both the University of Chicago, where he acted as associate director of the Population Research Center, and Pennsylvania State University, where he served as director of the Population Research Institute. In 1997, Hogan was named to an endowed professorship as the Robert E. Turner Distinguished Professor of Population Studies. Some of his research interests include the interrelationships of the family lives of individuals and their social environments, the measurement of disability, family consequences of disability, and the transition to adulthood. Hogan’s current research focuses on child disability. He is the principal investigator on grants supporting this program from the National Institute for Child Health and Human Development, the National Center for Medical Rehabilitation Research, the Assistant Secretary for Planning and Evaluation, the Federal Interagency Forum on Child and Family Statistics Subcommittee on Disability and the Spencer Foundation.Ghada al Homsi, M.S., is an Economist in RTI International’s Center for Interdisciplinary Substance Abuse Research. Her work focuses on the analysis of large surveys and the design and maintenance of databases of program costs.Amanda A. Honeycutt, Ph.D., is an Economist in RTI International’s Division of Health Economics Research. Since joining RTI in 1998, she has led a number of studies on the cost-of-illness, the cost of intervention programs, and the cost-effectiveness of prevention and treatment interventions that focus primarily on diabetes, HIV/AIDS prevention, and children’s health, disability, and development.Peter C. Hunt, M.P.H., was an Association of Schools of Public Health Fellow in the Division of Health Interview Statistics, National Center for Health Statistics, at the time work on this chapter was done. He subsequently served as a Special Assistant to the Director of the National Institute of Disability and Rehabilitation Research. He is currently a Research Associate at the University of Pittsburgh Model Center on Spinal Cord Injury.Lisa I. Iezzoni, M.D., M.Sc., is Professor of Medicine at Harvard Medical School and Co-Director of Research in the Division of General Medicine and Primary Care, Department of Medicine, at Beth Israel Deaconess Medical Center in Boston. Her primary research interest is risk adjustment for assessing health care quality and improving the fairness of payments. A 1996 recipient of The Robert Wood Johnson Foundation Investigator Award in Health Policy Research, she also studies health policy issues relating to mobility impairments. Dr. Iezzoni is a member of the Institute of Medicine.Gwyn C. Jones, Ph.D., M.S.W., M.Ed., is a Senior Research Associate at the National Rehabilitation Hospital Center for Health & Disability Research in Washington, DC. She is a former ATPM/CDC Fellow and current grantee. Her research and publications have focused on health risks, chronic conditions, and use of preventive services among working-age adults with disabilities, prescription drug use among non-elderly adults with disabilities, and rural Medicaid managed care for adults with disabilities.Judith D. Kasper, Ph.D., is a Professor in the Department of Health Policy and Management, and a Senior Research Associate in the Center for Health Services Research, at The Johns Hopkins Bloomberg School of Public Health. Her research interests include health policy in long-term care, aging and disability, access to health care for vulnerable populations, and the development and application of data sources for health policy and health services research. Dr. Kasper holds a Ph.D. in sociology from the University of Chicago.K. Charlie Lakin, Ph.D., is the Director of the Research and Training Center on Community Living at the University of Minnesota. Mr. Lakin has had extensive experience in gathering, analyzing, and using statistics from many primary and secondary data sources with the products of this work included in more than 200 publications in developmental disabilities and related services. Mr. Lakin was a member of the six-person external technical advisory panel on the instrumentation for the Disability Supplement. Mr. Lakin serves as Associate Editor of Mental Retardation, and consulting editor of The Journal of the Association for Persons with Severe Handicaps (JASH), the Journal on Intellectual and Developmental Disability and Social Science and Disability.Sheryl A. Larson, Ph.D., is a Research Associate at the Research and Training Center on Community Living at the University of Minnesota. She earned her Ph.D. in Educational Psychology from the University of Minnesota. She has 20 years of experience in services to persons with DD as a residential counselor, behavior analyst, social worker, and program evaluator and has worked for the RTC for the last 14 years. Ms. Larson was the Co-Principal Investigator for a two-year NIDRR Field Initiated Project which used the National Health Interview Survey Disability Supplement to examine the characteristics and service needs of persons with intellectual or developmental disabilities. She directed a supplement to the Research and Training Center on Community Living’s core grant that funded an international user’s conference in June 2000 for researchers analyzing NHIS-D topics. She has co-authored several papers using NHIS-D data. Dr. Larson has also co-authored several books, book chapters, journal articles and technical reports on workforce development issues, residential services, and community integration for persons with developmental disabilities and is a consulting editor of Mental Retardation.Donald J. Lollar, Ed.D., Senior Research Scientist, Division for Human Development and Disability, National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention in Atlanta. His advanced degrees are from Indiana University, and his most recent writings include co-editing an Archives of Physical Medicine and Rehabilitation supplement on the Science of Disability Outcomes, and articles for the 2003 Annual Review of Public Health and 2002 Public Health Reports outlining public health strategies to improve the health and well-being of people with disabilities. He has spent the past seven years developing public health science and programs to improve the health of people with disabilities, prevent secondary conditions, and increase participation in society. He currently serves as the co-lead of the Healthy People 2010 workgroup on Disability and Secondary Conditions (Chap. 6 of HP 2010). Dr. Lollar began involvement with the WHO classification ICIDH in 1994 while still in private practice, assessing potential utility of ICIDH-2 for clinical records. He is currently a part of the team to adapt the ICF to improve its utility for children and youth.Pamela Loprest is a Labor Economist and Senior Research Associate at the Urban Institute. Her research focuses on low-wage labor markets and how government policies can help to reduce and remove barriers to work among disadvantaged populations. Dr. Loprest has a Ph.D. in Economics from the Massachusetts Institute of Technology and has been at the Urban Institute since 1991.Elaine Maag is a Research Associate in the Urban Institute’s Income and Benefits Policy Center. Her research focuses on policies affecting youth with disabilities and employment opportunities for adults. She also conducts research on how tax policy affects low-income families. Ms. Maag holds an M.S. in Public Policy from the University of Rochester.Jennifer M. Park is a Post-Doctoral Fellow at the Harvard Graduate School of Education. Her current research is funded by a grant she holds from the American Education Research Association to examine cognitive development among first grade youth with and without emotional impairment. Her dissertation explored cognitive growth among kindergarteners with and without perceptual impairment. Dr. Park holds a Ph.D. in Sociology from Brown University, where her research examined the diverse effects of child disability on family outcomes.Elizabeth K. Rasch, M.S., P.T., is an Associate Service Fellow at the National Center for Health Statistics, CDC, working in the area of disability statistics. She is a Ph.D. candidate at the University of Maryland, Department of Physical Therapy and Rehabilitation Science, with a concentration in Epidemiology. Her research interests include the health of persons with disabilities, factors that contribute to disability, as well as the use of and access to healthcare services by persons with disabilities. She has been actively involved in research since 1985 and has published articles and book chapters on topics related to disability and rehabilitation.Anne W. Riley, is an Associate Professor in the Department of Health Policy and Management, in the division of Health Services Research, at the Johns Hopkins Bloomberg School of Public Health. Dr. Riley has expertise in the assessment of mental health and health, especially of children and adolescents, methods development, and evaluation systems for monitoring the outcomes of care for youth.Diana E. Schendel, Ph.D., is a Lead Health Scientist at the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention. She directs both intramural and extramural epidemiologic studies of reproductive and developmental outcomes, with a primary focus on cerebral palsy, autism, and other neurodevelopmental problems.Hilary Siebens, M.D., is Lecturer in the Department of Physical Medicine and Rehabilitation (PMR) at Harvard Medical School and Associate Director, PMR Service, at the Massachusetts General Hospital. She received clinical training in internal medicine, geriatrics, and PMR. Her publications address exercise among older adults, models of rehabilitation, and quality improvement initiatives.Lois M. Verbrugge, Ph.D., M.P.H., is Distinguished Senior Research Scientist in the Institute of Gerontology at the University of Michigan. She has contributed to disability theory and has conducted analyses of arthritis disability, gender differences in morbidity and mortality, and co-morbidity, using large-scale data sets. Her recent publications have emphasized the relative benefits of equipment and personal assistance for disability, the interleaving of aging and disability, and global indicators of disability. She was awarded the American Psychological Association Distinguished Contribution to Women’s Health Award in 1994.Whitney P. Witt, Ph.D., M.P.H., is an Assistant Professor of Medicine in the Division of General Internal Medicine and Center for Healthcare Studies at the Northwestern University, Feinberg School of Medicine. Dr. Witt’s prior work focuses predominately on people living with HIV/AIDS, including children and their families. Over the last five years, she has applied her experience in advocacy, policy, and research on vulnerable and high-cost, chronically ill populations to the field of maternal and child health services research. Dr. Witt’s research emphasizes the importance of family adaptation in ensuring the mental health of children with disabilities and for helping these children obtain access to mental health services. Most recently, her work has focused on the impact of maternal depression on familial health and mental health, preventive care practices, and use of health and mental healthcare services. She holds a Ph.D. in health services research and a M.P.H. from the Johns Hopkins Bloomberg School of Public Health and a B.A. in women’s studies and law from Hampshire College.Li-shou Yang, Ph.D., is Research Investigator in the Institute for Social Research at the University of Michigan. Trained in social demography, her research focuses on the family, the life course, and social change.

Coaches have long been recognized as key contributors to youth sport (DCMS, 2000; Smoll & Smith, 1980). Coaches are singled out in ‘A Sporting Future for All’ (DCMS, 2000) as playing a central role in the development of sport at every level and improving the accessibility of coach education and the quality and quantity of coaches in all sports is deemed important. In the last decade in Britain, the demand for coaches has increased because organized sport experiences have become commonplace for children as young as six years of age (English Sports Council, 1997).

Early in the 20th century, many began to voice growing concern over such issues as infant mortality, childhood diseases, and child labor (Anastasiow & Nucci, 1994). At this time, physicians, child advocates, and the general public began to speak out about social concerns regarding children, including those living in orphanages and those with mental illness or intellectual disabilities. These concerns came about at a time when psychologists studying young children began to accept that a child's intelligence was impacted by both genetic and environmental factors (Hunt, 1961). Prior to this point, experts believed a child's IQ was set at birth with little that could be done to influence it over time. Although we were beginning to better understand the importance of environmental influences on young children, at this point, most children with disabilities such as intellectual disabilities, cerebral palsy, and epilepsy were institutionalized rather than treated. On the other hand, children who were deaf or blind were more likely to be treated, but were typically sent away to “schools” and were segregated from their families and peers while receiving treatment and education.

This chapter will begin by exploring the importance for people living with dementia of maintaining a sense of self or ‘personhood’, and how this is linked directly to wellbeing. It will chart how the initial pilot projects were developed to embrace older people living with a dementia diagnosis, and how we teamed up with different partners in Brazil and on Merseyside, showing how the methodology outlined in the toolkit can be used to foster this sense of self or ‘personhood’. In both geographical locations it proved vital to establish contacts with enthusiastic partners and to work closely with occupational therapists and/or nursing home staff. On Merseyside we also benefitted from the expertise of a local community cinema which had extensive experience of running dementia-friendly film screenings. Finally, drawing on concrete results from the use of the toolkit's methodology in a recent project that Lisa conducted in Brazil, this chapter will present some conclusions about how music and film can help carers connect with the person living with dementia, and be used as a powerful tool for restoring a sense of personhood, thus increasing a sense of wellbeing and improving the quality of care.

The law-oriented short stories and novels of lawyer/English professor John William Corrington are receiving increasing attention from legal scholars. However, no one has analyzed the science fiction screenplays he co-wrote with his wife, Joyce, from a legal perspective. This article analyzes two such screenplays and concludes that they are “Socratic” texts whose narrative structures and epistemological processes work in much the same way that the traditional participatory exchange works in law school. My analysis explores the links between law, allegory and science fiction as intersecting methods to imagine the possibilities for the future.

The purpose of this study was to explore low-income women’s perspectives of the shared meaning of work and employment values in their intergenerational family context from a critical and systemic lens. Participants were rural and urban women from low-income contexts (N = 14). Semi-structured interviews were designed to elicit thick description of lived experiences of work and family. Analyses were conducted using Van Manen’s hermeneutic phenomenology coding process (1990).

Four emergent categories (Purpose to Work, What Work Is, Motherhood and Work, and Loss, Resilience and Work) with 16 themes described work–family integration. These narratives evoked a deep interconnectedness of work, family, and life. Because participants were recruited in locations where they were either already employed or seeking employment, these findings may not represent other women.

Effectiveness of programs and policies could be expanded by incorporating women’s values and motivations for employment and targeting family-level interventions. Programs could better empower women to seek employment and skills training for lasting financial sustainability, rather than just getting any job. Because participants distinguished between careers and jobs based on college education, many felt they could never obtain a career. Additionally, participants described work–family integration, not the prevalent idea of “work–life balance.” Participants described fighting to provide a better life for their children.

This study highlights under-represented perspectives of low-income women about work. Understanding the experiences of low-income women is essential for designing programs and services that will be practical and useful.

Purpose – The purpose of this work is to explore ways in which parents of children with disabilities actively seek to create a place for themselves and their children within supportive communities of others – despite structural and attitudinal barriers.

Methodology – Semi-structured, interactive interviews were conducted with six mothers and six fathers of older teens and young adults with severe impairments. Interview transcripts were analyzed for themes related to barriers to social participation and strategies used to create and sustain communities of supportive others.

Findings – Results suggest that, while there are indeed many barriers to social participation, these mothers and fathers have successfully utilized a variety of strategies in order to create a sense of community for themselves and their children including: garnering support from family; creating enclaves of “wise” individuals; and active social networking. Findings also suggest that children with disabilities can provide opportunities for parental community involvement in unexpected ways.

Limitations, implications and value – The sample is small and selective and the study used retrospective interviews to examine parental memories. Despite these limitations, the narratives of these parents provide a provocative look at the potential role of personal agency in the community experiences of parents of children with disabilities. The stories told by these parents clearly suggest that it takes concerted effort to construct a village in the face of significant barriers to social participation. Once created, however, that village of supportive others can provide life enhancing support for children with disabilities and their families.

Purpose – Whilst everyday consumption, such as of cosmetics, creates meanings for our being-in-the-world, these meanings appear to be easily over-looked and conceal untapped significance from the experiencing individuals. This study addresses this opportunity for exploring selves in daily transformation, studying cosmetics consumption across key developmental phases of everyday life.

Design/methodology/approach – Phenomenological interviews were employed to investigate individuals' feelings, perceptions and experiences of cosmetics consumption. An iterative process of hermeneutical interpretation was adopted to identify the constellation of past-present-future relations that have underscored the individuals' intentions, motives and purposes.

Findings – This chapter highlights the intricacies of how the self changes on a daily basis. We illustrate how consumers use cosmetic consumption, at a transformational level, to create, redefine and defend aspects of the self and, strategically, to manipulate and even attack others.

Research limitations/implications – Beyond cosmetics consumption, we provide ‘food for thought’ on this very complicated subject-how does mundane consumption potentially address issues of sense of self, and vice versa?

Originality/value – The study highlights an individual's challenges in defining the self and how cosmetics function as a coping mechanism, responding to changes occurring at varying stages of life.