The Lived Experience of Mothering a Young Child With Severe Multiple Disability

Abstract

In the last two decades improvements in neonatal intensive care have resulted in an increase in survival rates for low birth weight babies. This increase in survival has resulted in a net increase in children living with severe disabilities and mothers who live with the burden of caring for them (Bowen, Gibson, & Hand, 2002). Mothering is a widely practiced social role; yet, little is known about the lived experiences of mothers with significant challenges, such as mothering a young child with severe multiple disability. This study exposes the unique and individual experiences of four women as they experience the everydayness of mothering, and how they come to terms with the demands of mothering a child with severe disability. This research uses the philosophical perspectives of hermeneutic phenomenology, drawing on the works of van Manen (1990) and Martin Heidegger (1959, 1971, 2000, 2010) to come to understand the essence of ‘being a mother’. The participants recruited were ‘mothering’ a child aged three to seven years with a physical disability coupled with at least one other significant disability of cognitive, behavioural or sensory origin. Semi-structured interviews of 60-90 minutes duration were conducted with participants. Interviews were taped and transcripts were worked into discrete stories of incidents and perceptions of mothering which were checked for accuracy by the mothers. Themes were identified through hermeneutic interpretation, with thematic statements isolated using selective highlighting. Commonalities in texts and themes from the participants were identified. The stories revealed the mothers’ deep and intense transition within mothering. The ‘being a mother’ of a young child with severe multiple disability is a mothering journey that starts at the same point as ‘mothers of typically developing children’ in conception; yet veers off on an altered path as the mothers experience being visible, being challenged and being acquiescent. The findings show that mothering a young child with severe multiple disability encompasses interconnected ‘being’, and that the transition experienced in mothering is not sequential. Rather, a mother can exist in multiple realities at any moment; shifting back and forth in the context of ‘being a mother’. The findings also recognise the duality of burden and joy experienced in mothering. Being a mother is a constant; a role that will only cease in death. Coming to acquiescence, in the lived experience of mothering a young child with severe multiple disability, a mother comes to recognise the ‘joy’ in spite of the burden, despite the unique journey, and towards acceptance in her own version of ‘being a mother’. The results of this research provide insights that will inform the development of partnerships between professionals and mothers of children with severe multiple disability, thus promoting working together. It highlights the struggles and intensity within the occupation of mothering in its everydayness, and how mothers evolve and endure.