Exploring the Experiences of “Not Being Listened To” from the Perspective of Parents with Disabled Children

Abstract

Several studies report that parents of children with disabilities complain about professionals ignoring the parents’ view and understanding of the child's needs. The aim of this paper is to explore the parents’ experience of not being listened to from their own perspective. Findings are based on a longitudinal study including qualitative interviews with parents of 31 children with different types of impairments in pre-school (1999) and early school years (2002). Incidents where parents reported “not being listened to” were distinguished according to different types of conflicts or disagreements: (1) problem-defining; (2) gate-keeping; and (3) jurisdiction. The underlying problem as viewed by the parents was that their knowledge was not valued. Dilemmas and obstacles towards practising user-participation in parent–professional relationships are discussed. The findings suggest a necessity of negotiating partnership, as well as a more humble approach towards parents.

Keywords

• Parents, disabled children, empowerment, user-perspective