Exploring the world of profound intellectual disabilities: examining the use of multi-sensory storytelling and an exploration of the experience of mothers to first born children with profound intellectual disabilities making decisions about having more children

Abstract

People with profound intellectual disabilities are often not recognised or included in research. This thesis aims to explore their experiences and those of people who care for them.
A systematic literature review explores the use of multi-sensory storytelling (MSST) with people with profound intellectual disabilities. There is currently limited guidance on interventions for this population and this review aims to explore the possibility of MSST being used therapeutically. A mixed methods review was completed with four databases and three grey literature sources. Data quality was assessed, and an integrated convergent approach was used to synthesis data. Data was extracted verbatim and thematic analysis was conducted. Seven papers were included. Four themes emerged from thematic analysis: MSST is beneficial for people with profound intellectual disabilities, storytellers benefit from MSST, there is mutual enjoyment of MSST and factors to consider when developing, implementing and evaluating MSST. The findings indicate MSST is potentially a feasible and acceptable therapeutic intervention for people with profound intellectual disabilities and should be considered in future research.
The empirical chapter explores the lived experience of mothers with a first-born child, who has profound intellectual disabilities and their decision to have more children. Seven participants were interviewed about their experiences. Transcripts were analysed qualitatively using interpretative phenomenological analysis. Six group experiential themes emerged: ‘Grief and loss driving you to have another child’, ‘Isolation from the world around you’, ‘The burden of care splits you in two’, ‘The weight of responsibility of bringing another child into the world when your first has profound intellectual disabilities’, ‘Finding meaningful support is down to you’ and ‘Siblings heal and bring joy’. The findings highlight difficulties faced by mothers, demonstrating the need for professional support and the importance of peers for coping strategies and building resilience.

Keywords: Profound Intellectual Disabilities, Multi-Sensory Storytelling, Systematic Review, Mothers, Children, Interpretative Phenomenological Analysis

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ORCID for Jean Ruth Jevons: orcid.org/0009-0004-8336-1529

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