Lived Experience of Older Women with Learning Disabilities

Alison Pointu & Nalinie Ranpurias a.pointu@nhs.net

Background1.5 million people with learning disabilitiesLargest group are older womenVery little knows about their experiences of older ageResearchers had talked to professionals and relatives but not listened to their stories

Participatory ResearchOver the past twenty years there has been an increase in inclusive research methods with individuals with a learning disability

Life story work - Professor Dorothy Atkinson, Professor Jan Walmsley, Booth & Booth & Dr Sheena Rolph

Partnership with people with learning disabilities

Key PrinciplesOwned by people with learning disabilitiesFurthers the interests of people with learning disabilitiesInvolves people with learning disabilities in the research processPeople with learning disabilities have some control over the process and outcomesThe questions, process and reports must be accessibleWalmsley & Johnson, 2003 p. 64

Sample: Expert Group The experience of growing olderYou are being asked if you would like to take part in an expert group. This letter will help you to decide if you want to say yes or no.The group will meet once a week for six weeks. We will then meet every month for a year.The research is about women with learning disabilities growing older. You will be helping me to get the research questions right. We will also take some photographs to help talk about our lives . You do not have to take part you can say yes or no.

Expert Reference Group

Experts: Photographs

Handing over the camera Photo-Elicitation

Visual methodology held some answersPhoto-elicitationVery little research using this method with people with learning disabilitiesPicture this: the use of participatory photographic research methods with people with learning disabilities (Aldridge, 2007)

The value of photographic methods

Richer understanding of their experienceCaptured BY the women themselves.Facilitated a window into their day to day lives as well as their contacts with peoplePride and accomplishmentImproved engagement and relationshipsHelped to bridge the gap

DesignTaking photographs and listening to stories helped me to understand their experiences

This shaped the design of the study that combined verbal and visual accounts

Main study

Inclusive ApproachTen WomenInterviews and PhotographsNarrative AnalysisAsset Framework

Women with learning disabilities should be included in research that is inclusive and brings them in from the shadows of society giving both visibility and voice.

Acknowledgement & Thanks

Nalinie, Christine and in memory of Pat and Wanda. All of the women who took part in this study and for allowing me to share some of their photographs

My doctorate supervisors Professor Fiona Brooks & Dr Roja Sooben

Photosymbol picture bank

ReferencesAldridge, J. (2007). "Picture this: the use of participatory photographic research methods with people with learning disabilities." Disability and Society 22(1): 1-17Atkinson, D. & Walmsley, J. (1999) Using Autobiographical Approaches with People with Learning Difficulties. Disability & Society. 14: 2, 203-216.Atkinson , D. (2004) Research and empowerment: involving people with learning difficulties in oral and life history research. Disability and Society 19 (7): 691-702.Booth, T. & Booth, W. (1996) Sounds of Silence. Disability and Society. 11(1): 55 -69.Booth, T. & Booth, W. (2003) In the Frame: photo voice and mothers with learning difficulties. Disability & Society, 18 (4), 431-442Boxall, K & Ralph, S. (2009) Research ethics and the use of visual images in research with people with learning disabilities. Journal of Intellectual and Development Disabilities. 34(1), 45-54Pink, S. (2007) Doing Visual Ethnography. 2nd Ed. London, Sage.Radley, A., Hodgetts, D. & Cullen, A. (2005) Visualizing Homelessness: a study in photography and estrangement, Journal of Community and Applied Social Psychology. 15, 273-95.Rolph, S. (1999) The History of Community Care for People with Learning Difficulties in Norfolk, 1930-1980. The role of two hostels. Unpublished PhD thesis, Milton Keynes, Open UniversityWalmsley, J. (2001) Normalisation, Emancipatory Research and Inclusive Research in Learning Disability. Disability and Society. 16, 2, 187-205.Walmsley, J. and K. Johnson (2003). Inclusive Research with People with Learning Disabilities. London, Jessica Kingsley Publisher.

******.*Researchers have struggled to resolve the tension of academic rigour and the inclusive needs of the participants, and conventional interview do not always accommodate the different cognitive and verbal skills of this population. Photo elicitation using photographs within an interview can make this a much more accessible. This has been demonstrated by Radley, Frith and Pink. Jo Aldridge in her 2007 paper concludes that the use of visual methods in an integrated research design had the potential to capture important evidence that other methods might miss, as they invoke memory, comment and discussion. At a side line I was familiar with the annual Snap competition and knew that people with LD were able to talk about their lives through this medium*********