PPI case study

The project

Jo is a Colt Foundation PhD Fellow and a Speech and Language Therapist (currently researcher), reading for a DPhil in Primary Health Care. She is a member of the Interdisciplinary Research in Health Sciences group and a member of Green Templeton College.

This study focuses on the educational, training and work experiences of adults with Developmental Language Disorder (DLD); difficulty acquiring, understanding and/or using one’s own home language/s with unknown cause. It documents the life stories and work histories of young people and adults with DLD, exploring their experiences, with a particular focus on work. Through narrative interviews and linked co-design sessions, the study aims to inform workplace support for adults with DLD.

DLD is a common condition in childhood that has received little research funding. Hence, there is limited research evidence on the long-term impact and support needs when DLD persists into adulthood. DLD and reading difficulties frequently co-occur, causing hidden challenges for individuals in education, training and at work.

This project is about persistent language difficulties, in people’s own home language/s, and language difficulties can be hidden. This makes applying for work and carrying out some tasks more challenging. There is poor awareness of DLD in adulthood and so it is not easy for people to gain accommodations or reasonable adjustments at work.

The PPI

This project is part of a new vision for patient-led research, at the Nuffield Department of Primary Care Health Sciences, in which people with a particular diagnosis undertake research into their own condition. 

In conducting this study, Jo draws on her own profile of Dyslexia and Developmental Co-ordination Disorder, conditions which can co-occur with DLD and cause her persistent and hidden difficulties at work.

Meaningful advice, participation of and co-production with potential service users, is the central methodological approach, working with people for whom the research is intended. PPI has been key to this, and fundamental to planning and preparing this study.

Participatory elements include:

• An experience informed researcher
• A PPI advisor
• A stakeholder advisory group
• Participant piloting of interviews
• Participant led, supported, narrative interviews
• Post interview co-design sessions which aim to influence the design of future support.

The impact of PPI

Jo’s PPI advisor brought their lived experience of language difficulties to the project, helping to prepare study recruitment materials, interview processes and plan a co-design session.

Jo valued working alongside someone else with a shared experience and understanding of the project. She appreciated combining similar and differing perspectives, of language and literacy difficulties, to prepare materials and approaches to include and support a range of eligible participants.

The PPI advisor brought thought, care and insight to the project and helped Jo to view the project from the perspective of potential participants. They thought seriously about the tasks that people would be asked to do in this study and advised on preparation and layout of materials and tasks.

This is an example of a situation where someone experiencing language difficulties could be a more effective colleague than another person without the same level of commitment, insight and experience.

Working together helped Jo to consider how she will work with people in the study, focusing her preparation as a qualitative researcher and as a partner in the co-design process.

The PPI sessions directly contributed to a successful application for ethical approval. This represents progress in including an under-served group in research.