Introduction

In Chapter One, we argued that the literature on parenting and disability was dominated by medical, rather than social, model approaches. This appendix describes the methodological dilemmas we faced in attempting to address this absence, and the methods we used in response.

Key variables

This study was informed partly by concerns about the way in which policy, practice and research around ‘young carers’ had gained an almost hegemonic pre-eminence as a way of looking at parenting and disability. A key aim of our study, therefore, was to address the factors that might enable disabled parents to avoid dependence on their children for ‘care’. However, it was important to address two particular issues that the ‘young carer’ literature had identified as significant: parental mental health impairments, and the presence of one or both parents.

The ‘young carer’ literature highlighted not only the significant number of children caring for parents with mental health impairments, but also the particular nature of that caring experience (Dearden and Becker, 1995, 1998). In addition, parental mental health impairments have featured strongly in research on, among other things, the incidence of child abuse (Sheppard, 1997), child protection procedures (Dartington Social Research Unit, 1995), and the characteristics of children ‘looked after’ (Bebbington and Miles, 1989). Consequently, we designed our study in a way that enabled us to compare the experiences of parents with mental health impairments with those of other disabled parents.

The ‘young carer’ literature also pointed to the likelihood that children of single disabled parents will be less protected from involvement in caring activity than those children who have two co-resident parents (the assumption being that the other, implicitly non-disabled, parent would act as a buffer between parental disability and child involvement). It was important for our study to be designed in such a way as to allow comparison between single-parent and dual-parent families. Our materials and analysis, and the data presented in this book, are therefore frequently couched in terms of these two variables, which we have termed impairment group and family shape.

We were also aware that an understanding of the experiences of disabled parents would be impossible without reflecting adequately the importance of change.