The challenges of life story work with people with PMLD
Research type
Research Study
Full title
Making Memory Sites: Extending opportunities for people with profound and multiple learning disabilities to participate in life story work.
IRAS ID
161810
Contact name
Noelle McCormack
Contact email
Sponsor organisation
University of East London
Research summary
This project seeks to explore and address the challenges of doing life story work with people who have profound and multiple learning disabilities. This marginalized and underrepresented group experience extensive communication difficulties and, as a result, their stories are usually constructed on their behalf. This project aims to use a range of qualitative research methods to identify the individual communication repertoires of three people diagnosed with profound and multiple learning disabilities by working with them and their circles of support i.e. parents, siblings, support workers and friends in the family home. The thematic analysis of a wide variety of personal archival materials, together with semi-structured interviews and ethnographic observation will be used to identify the unique communication repertoires of the three disabled participants. These repertoires will be matched with augmentative and alternative communication tools and new media technologies to create meaningful and creative opportunities for engagement in the various stages of life story work. The fifteen-month project will highlight the tensions of capturing and sharing the individual’s unique lived experience within the educational, social and cultural contexts that define it and will form the fieldwork element of a three-year PhD thesis.
REC name
Social Care REC
REC reference
14/IEC08/1014
Date of REC Opinion
16 Sep 2014
REC opinion
Favourable Opinion