The lived experience of parents whose children are deafblind: an occupational perspective...College of Occupational Therapists Conference, June 28-30, 2016

This study explores the lived experience of parents whose children are deafblind and examines whether it can be considered a meaningful occupation. The number of people who are deafblind is growing (Robertson and Emerson 2010), as are the number of parent-carers, yet deafblind research traditionally follows a medical model, focusing on older people (Brennan et al. 2005). Parents whose children are deafblind have not been consulted about their own experiences, despite family-centred practice playing parents central to a child's care, and legislation and policy which aims to protect carers' needs and recognise their vital role (Department of Health 2009). This research begins to address this gap in knowledge. Interpretative Phenomenological Analysis was used to explore the experience of four parents whose children are deafblind, using semi-structured face-to-face interviews. Parents were recruited through Sense UK, with Brunel University granting ethical approval. Analysis produced five main themes alongside extracts from the interviews: The moment of diagnosis - Isn't quite what I expected, Working and self-preservation - A little bit of normality back, Learning to manage - It can be rewarding in and of itself to have a disabled child, The tough times - It's so far away from normal, and What deafblindness really means - If you have multisensory loss [it] becomes really difficult. The findings demonstrated how turbulent the parenting experience was for these parents. Traditional mothering roles were often lost, although new roles developed that could provide them with a purposeful and often fulfilling parenting experience. The findings have implications for both family centred practice and occupational science theory. Recommendations for further research include: repeat studies to strength validity longitudinal studies to capture the life-long parenting experience and action research to develop a parent-professional support group.