The Lived Experience of Older Women with Learning Disabilities

Abstract

Background: In recent decades, improvements in medical treatment, public health, technology and education have resulted in people living much longer. This includes people with learning disabilities, the fastest growing sector being the over-70s, and those who are women. There have been a limited number of studies exploring ageing in the population of people with learning disabilities, and very few of these have studied ageing from the perspectives of women. Aim: To develop a contemporary perspective of the lived experiences of older women with learning disabilities. Objectives - To identify how women with learning disabilities construct the experience of ageing, through the lens of an asset theoretical framework - To examine how older women with learning disabilities experience the wider cultural and socio-political influences, and how these impact on their lives - To utilise a narrative approach that integrates stories and photo elicitation to facilitate a more in-depth understanding of their experiences - To indicate how a refined model could be developed to improve policy and practice in the provision of services for older women with learning disabilities An inclusive methodology is central to this thesis, with an expert reference group of four women with learning disabilities working in partnership with the researcher. The expert reference group ensure that this work is grounded in everyday experience, providing both support and challenge. Ten women over 55 with mild or moderate learning disabilities were purposively invited to take part. Narrative methods integrated with photograph elicitation captured their lived experiences, facilitating a more in-depth 3 understanding of their experiences of ageing. In methodological terms this offered a number of strengths in helping the women to engage with the research process and provided a visual reference that promoted a more inclusive and flexible approach to capturing the lived experiences of older women with learning disabilities. Findings The findings identify how a group of older women construct their experiences of ageing. The equanimity and positive outlook on life is interpreted and understood through developing and understanding their protective health assets. A central theme is the importance of friendships and relationships, providing a buffer during adverse times and helping the women to feel supported and valued by their local community. Conclusion In its contribution to service development and knowledge, this thesis provides a contemporary perspective of the lived experience of women with learning disabilities as they age. Furthermore, mapping the narrated assets of these women introduces a new and alternative model for representing individual experiences that challenge the mainstream perspective that has been central to UK policy and practice during the 21st century. This thesis has begun to address a gap between policy and the reality of the lived experience, and presents an alternative asset-based relationship framework (Fig 30 p. 248) that has the potential to guide and shape future learning disability practices. Finally, this appears to be the first study to apply an asset theoretical framework to underpin research with women who have learning disabilities, offering an alternative perspective that challenges social care policy and professionally-defined integration and social inclusion indicators.