Struggles and Joys: A Review of Research on the Social Experience of Parenting Disabled Children

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.

Citation

Green, S.E., Darling, R.B. and Wilbers, L. (2016), "Struggles and Joys: A Review of Research on the Social Experience of Parenting Disabled Children", Sociology Looking at Disability: What Did We Know and When Did We Know it (Research in Social Science and Disability, Vol. 9), Emerald Group Publishing Limited, Leeds, pp. 261-285. https://doi.org/10.1108/S1479-354720160000009013