People with learning disabilities are living to a much older age. There have been very few studies that have explored old age in this population and very few of these have asked women with learning disabilities about their experience of ageing.
An expert group of older women with learning disabilities worked alongside the researcher and helped to design the research study. This group met regularly and developed questions that would help women talk about their experiences.
A group of ten women were invited to take part in face-to-face interviews and were given cameras to take photographs of people and places that were important in their lives. Their stories and the photographs they had taken were used in the interviews to get a better understanding of their experiences of ageing.
The study used a theory known as 'health assets'; this was used because of it looked at strengths rather than problems. This helped to gain an understanding of what was important in the everyday lives of the women participants. Friendships, family, partners, staff, and keeping busy were all key external assets and being valued, level headed and having hopes for the future were the inner assets that emerged from their stories and photographs.
This paper will focus on how the partnership work with experts influenced the design of the study. The presentation will also discuss how the photographs and narratives helped me to understand their lived experiences.
Alison Pointu - Alison has been a registered nurse for people with learning disabilities for over 30 years. Alison's career began at a long stay hospital before moving to work in the community in the early 90s. She has worked in both clinical, leadership and management roles, where she has actively promoted the rights of individuals and the need for high quality health and social care services.
After a long career in the NHS, Alison now has two part time roles one as an external governing body nurse for Surrey Downs Clinical Commissioning Group, ensuring that health services are safe and offer a good experience for patients. Alison also works as an associate for Verita where she has helped to investigate the quality of services that support individuals with a learning disability.
Alison has had a life-long interest in how women with learning disabilities experience old age. In March this year, as part of a part time Doctorate in Health Research at the University of Hertfordshire, Alison submitted her thesis 'The Lived Experience of Older Women with Learning Disabilities'.
Alison's career and research has given her the opportunity to meet and work with some inspiring individuals and families, and to contribute to positive changes to service delivery.
If you woud like to get in touch with the Social History of Learning Disability (SHLD) Research Group, please contact:
Chair of the Social History of Learning Disability (SHLD) Research Group
School of Health, Wellbeing and Social Care
Faculty of Wellbeing, Education and Language Studies
The Open University
If you have any feedback or would like to report a problem with the website, please contact WELS-Research-Admin@open.ac.uk.