"We're tired, not sad": benefits and burdens of mothering a child with a disability

Abstract

Caregiver burden has received considerable emphasis in the literature on the social experience of mothering children with disabilities. Little attention has been paid, however, to either the nature of the burdens perceived or to maternal ability to see beyond the burdens to the benefits of their caregiving role. This study utilizes a mixed methods approach to examine these neglected aspects of the social experience of mothering children with disabilities. Findings of a survey of 81 mothers of children with disabilities in Florida, USA and follow-up interviews with 7 of these mothers indicate that: 1. For most of the mothers included in the study, "the burden of care" is a matter of socio-structural constraints (Objective Burden) rather than emotional distress (Subjective Burden); 2. Despite the socio-structural constraints associated with caring for a child with complex needs, most mothers perceive valuable benefits in having a child with a disability; and 3. Perceived Stigma has an important positive impact on both dimensions of burden and, through its impact on Subjective Burden, can decrease the perceived benefits of caring for a child with a disability.