Maternal perspectives of disability: an interpretative analysis of mothers’ experiences of having a child with Dravet syndrome

Research suggests families managing disability or chronic illness in a child are at greater risk of adverse psychosocial outcomes. Traditional theories have focused on the unfavourable impact of a child’s condition, describing family and maternal stress or burden of care and have conceptualised disablement in terms of tragedy, loss and grief. Contemporary psychological literature brings theories of acceptance and adjustment into understanding the impact of conditions, but fails to accommodate individuals who deviate from this. The social model of disability moves the focus away from impairment to the role played by society. This describes society as disabling people by its failure to remove barriers to accommodate their needs. The concept of disability is under addressed in counselling psychology although other marginal groups in society are seen as falling within the broader social justice agenda. Further understanding of this complex paradigm is needed, which the discipline of counselling psychology is well placed to contribute towards. This study explored mothers’ experiences of having a child with a disability. Nine mothers were interviewed using semi structured interviews, analysed using Interpretative Phenomenological Analysis (IPA). Four meta themes emerged from the data: ‘Diagnosis’, ‘Family’, ‘Struggle’ and ‘Disablement’; demonstrating the range and complexities of the mothers' experiences. Together the themes highlighted the challenge of conceptualising a multidimensional phenomenon such as disability. It is also argued that these insights justify a greater role for counselling psychology in supporting families and disabled individuals as well as in making contributions to inform the delivery of services