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Introduction to Alport Syndrome

Melissa Stepney

BA (Hons), MSc, PhD

Senior Researcher

  • Qualitative methodologist NIHR Research Design Service
  • Level 5 Coaching Professional trainee & mentor

I am a social and cultural geographer with research interests in young people’s health, mental health and gender, with a focus on social justice and health inequalities. As a qualitative methodologist for the NIHR Research Design Service I have extensive experience of designing and analysing qualitative research in the field of health and social care, with an interest in creative research methods and dissemination routes (video, photo, drawing, art-based, animation etc).

I am Principle Investigator for a NIHR funded study on the health and care needs of young trans and gender diverse people. Working alongside fantastic charity partners and community organisations, we interviewed over 90 young people, parents/carers and health professionals. This project culminated in an educational and comprehensive online resource on the award winning website Healthtalk.orgHere you can hear young people and parents/carers talk about their experiences through video, audio and written clips. The resource aims to support other trans youth, family members/friends as well as inform health professionals and the wider public about the health needs of young trans people.

Prior to this, I have worked with Prof Mina Fazel, Department of Psychiatry as a qualitative researcher evaluating new models of care in Child and Adolescent Mental Health Services (CAMHS) in England. Increased demand for CAMHS, alongside evidence that services are not meeting the needs of young people, have led to the re-organisation of some CAMHS to improve accessibility, quality of care and health outcomes. This mixed methods project included both qualitative methods and an economic evaluation to help understand the complexity of CAMHS re-organisation, and the impact these changes will have on young people and their families. I led the qualitative component which included in-depth interviews with young people, families and CAMHS staff, alongside ethnographic observation and documentary analysis.

Previously, I have worked on a number of projects as a qualitative researcher including the 100,000 Genomes Project and the experiences of people who have the genetic condition Alport Syndrome (see example on the left).

I completed my PhD on youth, gender and drinking cultures at the University of Reading before taking up a position as a Human Geography Lecturer for four years at the University of Worcester.  I have a long-standing interest in psychoanalytic theory and how the (un)conscious shapes our everyday experiences, behaviours, health and wellbeing. Published work includes research on gender, alcohol and friendship as well as the use of online forums in understanding health behaviour.