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Book part
Publication date: 27 December 2013

Sara E. Green, Rosalyn Benjamin Darling and Loren Wilbers

This chapter reviews qualitative research on parenting children with disabilities published over the last 50 years to explore whether shifts in academic discourse and…

Abstract

Purpose

This chapter reviews qualitative research on parenting children with disabilities published over the last 50 years to explore whether shifts in academic discourse and changes in professional training have affected research on parenting and/or the experiences of parents who are the subject of such research.

Methodology/approach

An extensive literature search was conducted, and 78 peer-reviewed, qualitative studies on the experience of parenting a child with a disability were included in the sample. Themes were extracted from the reviewed literature and compared across decades.

Findings

The findings of the present review suggest that some aspects of the parenting experience have changed very little. In particular, parents continue to experience negative reactions such as stress and anomie, especially early in their children’s lives, and socially imposed barriers such as unhelpful professionals, and a lack of needed services continue to create problems and inspire an entrepreneurial response. In addition, stigmatizing encounters with others continue to be a common occurrence. In contrast to earlier decades, studies conducted in more recent years have begun to use the social model of disability as an analytic frame and also increasingly report that parents are questioning and challenging the concept of “normal” itself.

Social/practical implications

Additional improvements are needed in professional education and services to reduce the negative reactions experienced by parents of children with disabilities.

Originality/value of chapter

The findings of this meta-analysis can serve as a guide to future research on parenting children with disabilities.

Details

Disability and Intersecting Statuses
Type: Book
ISBN: 978-1-78350-157-1

Keywords

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Book part
Publication date: 17 December 2016

Sara E. Green, Rosalyn Benjamin Darling and Loren Wilbers

This paper presents an updated summary of a meta-analysis of qualitative research on parenting children with disabilities published over the last 50 years. In this…

Abstract

Purpose

This paper presents an updated summary of a meta-analysis of qualitative research on parenting children with disabilities published over the last 50 years. In this summary, we explore whether shifts in academic discourse and changes in professional training are reflected in research on parenting and/or the experiences of parents who are the subject of such research. The detailed findings of the original analysis were published in Volume 7 of Research in Social Science and Disability.

Methodology/approach

An extensive literature search was conducted, and 79 peer-reviewed qualitative studies on the experience of parenting a child with a disability were included in the sample. Themes were extracted from the reviewed literature and compared across decades.

Findings

The findings of the present review suggest that some aspects of the parenting experience have changed very little. In particular, parents continue to experience negative reactions such as stress and anomie, especially early in their children’s lives, and socially imposed barriers such as unhelpful professionals and a lack of needed services continue to create problems and inspire an entrepreneurial response. In addition, stigmatizing encounters with others continue to be a common occurrence. In contrast to earlier decades, studies conducted in more recent years have begun to use the social model of disability as an analytic frame and also increasingly report that parents are questioning and challenging the concept of “normal” itself.

Originality/value

Additional improvements are needed in professional education and services to reduce the negative reactions experienced by parents of children with disabilities. The findings of this meta-analysis can serve as a guide to future research on parenting children with disabilities.

Details

Sociology Looking at Disability: What Did We Know and When Did We Know it
Type: Book
ISBN: 978-1-78635-478-5

Keywords

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Book part
Publication date: 17 December 2016

Rosalyn Benjamin Darling

This paper was written to show that what has come to be called the social model of disability appeared as the primary analytical framework in research published by…

Abstract

Purpose

This paper was written to show that what has come to be called the social model of disability appeared as the primary analytical framework in research published by sociologists in the 1960s and 1970s. Although the name and constructs of the model have changed over the years, its roots are clearly present in the earlier sociological literature. The author looked for evidence of these roots.

Methodology/approach

The paper’s findings are based on a literature review and synthesis. For illustrative purposes, four publications were selected as case examples.

Findings

All of the components of the social model – locus of the problem in society, activism as a solution, and consumer control – appeared in the earlier literature. In addition, these studies conducted in the 1970s and earlier distinguished between the individual and social model, although they used different terminology.

Research implications

Researchers need to go beyond simple electronic literature searches in order to find books and articles written prior to 1980. Otherwise, they may be “reinventing the wheel.”

Originality/value

Most recent literature in disability studies acknowledges a debt to the social model theorists of the 1990s. This paper suggests that their debt extends back much further and that the social model is part of a long tradition of sociological thinking.

Details

Sociology Looking at Disability: What Did We Know and When Did We Know it
Type: Book
ISBN: 978-1-78635-478-5

Keywords

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Book part
Publication date: 21 December 2010

Rosalyn Benjamin Darling and D. Alex Heckert

The concept that guides the present research is orientation toward disability. This concept is related to, but broader than, the concept of disability identity that has…

Abstract

The concept that guides the present research is orientation toward disability. This concept is related to, but broader than, the concept of disability identity that has driven some previous research in this area (see, e.g., Gill, 1997; Putnam, 2005). The concept of identity or self suggests a person's definition of him or herself and usually includes both cognitive (“I am a person with a disability”) and evaluative (“I am proud to be a person with a disability”) components.

Details

Disability as a Fluid State
Type: Book
ISBN: 978-0-85724-377-5

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Book part
Publication date: 11 December 2007

Rosalyn Benjamin Darling

In Great Britain in the 1960s and 1970s, a physician (Lorber, 1971) developed criteria that would exclude from treatment many babies born with spina bifida (“open spine”…

Abstract

In Great Britain in the 1960s and 1970s, a physician (Lorber, 1971) developed criteria that would exclude from treatment many babies born with spina bifida (“open spine”) based on what he perceived to be a poor projected quality of life. In the US, the parameters of the modern debate developed around the case of “Baby Doe,” a child born in the early 1980s with Down syndrome and duodenal atresia, an intestinal blockage. Without surgery to correct the blockage, the baby would not survive. Because the infant also had Down syndrome, which typically includes some degree of intellectual disability, the parents decided not to consent to the surgery. The parents’ decision was met with outrage by disability advocacy groups, as was a similar decision a few years later to forego surgery to repair a myelomeningocele (spina bifida) in the case of “Baby Jane Doe.” The publicity surrounding these and other non-treatment decisions resulted in the US in the passage of the Child Abuse Amendments of 1984, largely through the efforts of then Surgeon General C. Everett Koop. This legislation effectively mandated universal treatment of newborns with disabilities. However, several court cases since have resulted in rulings allowing parents to discontinue life support based on quality-of-life issues, resulting in the establishment of state standards in addition to the federal ones (Clark, 1994). Still, the norm in the case of Down syndrome and spina bifida, two of the most common childhood impairments apparent at birth, continues to support the treatment of virtually all children born with these conditions. As a result, most post-natal decision making today involves infants with other, often more serious, impairments that result from perinatal complications or from extreme prematurity. Even in those cases, a bias toward treatment seems to prevail (Levin, 1990).

Details

Bioethical Issues, Sociological Perspectives
Type: Book
ISBN: 978-0-7623-1438-6

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Book part
Publication date: 11 December 2007

Elizabeth Mitchell Armstrong

Like all tribes, bioethics has its own origin myths. According to these myths, bioethics emerged in the latter half of the twentieth century when new technologies and…

Abstract

Like all tribes, bioethics has its own origin myths. According to these myths, bioethics emerged in the latter half of the twentieth century when new technologies and scientific developments challenged the norms that had traditionally governed clinical practice. Theologians, philosophers, clergy, judges, lawyers, journalists and ordinary people – the “strangers at the bedside” in David J. Rothman's memorable phrasing – began to take an interest in moral matters that previously had been the realm of physicians alone. Codes of research ethics were formulated in response to the Nazi atrocities; hospital ethics committees were established in sensitivity to the emerging notion of “patients’ rights.” Bioethics was born.

Details

Bioethical Issues, Sociological Perspectives
Type: Book
ISBN: 978-0-7623-1438-6

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Article
Publication date: 1 February 1986

Ruth Friedman

The study of birth defects has increased in importance in recent years because the rate of infant mortality due to other causes (such as infection and nutritional disease…

Abstract

The study of birth defects has increased in importance in recent years because the rate of infant mortality due to other causes (such as infection and nutritional disease) has decreased more quickly than has the rate of deaths due to birth defects. Today, abnormalities are detected in approximately 3 percent of newborn humans, and twice as many prenatally acquired defects are found in children after infancy as are discovered at birth. In addition, many of the more than 500,000 miscarriages and stillbirths that occur each year in the United States are due to abnormal fetal development.

Details

Reference Services Review, vol. 14 no. 2
Type: Research Article
ISSN: 0090-7324

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Book part
Publication date: 21 December 2010

Sharon N. Barnartt is professor and department chair in the Department of Sociology at Gallaudet University. She has coauthored two books: Deaf President Now: The 1988

Abstract

Sharon N. Barnartt is professor and department chair in the Department of Sociology at Gallaudet University. She has coauthored two books: Deaf President Now: The 1988 Revolution at Gallaudet University (1995) and Disability Protests: Contentious Politics 19701999 (2000). She coedited Disability Studies Quarterly, Special Issue on Deafness, volume 18, issue 2, 1998, and the Journal of Disability Policy Studies: Special Issue on Women and Disability, volume 8, 1997. She has also presented papers and published widely in the areas of gender differences in socioeconomic status, disability policy issues, social movements in the deaf and disability communities, and disability in developing countries. She has been a board member and president of the Society for Disability Studies, member and chair of the American Sociological Association's Committee on the Status of Persons with Disabilities, and chair of the American Sociological Association's Disability and Society Section-in-Formation. She is a founder and coeditor of the Research in Social Science and Disability volume series.

Details

Disability as a Fluid State
Type: Book
ISBN: 978-0-85724-377-5

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Book part
Publication date: 11 December 2007

Abstract

Details

Bioethical Issues, Sociological Perspectives
Type: Book
ISBN: 978-0-7623-1438-6

To view the access options for this content please click here
Book part
Publication date: 27 December 2013

Abstract

Details

Disability and Intersecting Statuses
Type: Book
ISBN: 978-1-78350-157-1

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