Methods

  • We employ well-established methods of qualitative research which are rigorous and systematic.
  • We typically conduct 40-50 in-depth interviews with individuals concerning their personal experiences of living with a health condition, or caring for someone with a health condition. These interviews are usually conducted at home using audio and video recording equipment. We explore questions and problems that matter to people when they have a newly diagnosed health issue or when they are ill, or caring for someone who is ill.
  • People with as many different experiences as possible are interviewed. We also recruit our participants representing different areas of the country, socio-economic and cultural / ethnic backgrounds, religious affiliations, ages, and gender. This way, we can make sure that a full range of perspectives is sampled.
  • Standardised research methods are used for analysing the interview data. The results are published on our website, in peer-reviewed journals, disseminated at conferences and in the media, and reported to our funding bodies.
  • The findings are used to develop publicly accessible websites on particular health or health-related conditions. Each website provides support and information for patients, their family and carers. Around 25-30 thematic summaries of what is important to those people who were interviewed are provided. These are illustrated with video, audio and written excerpts from the interviews, as well as short summaries of each of our interviewees' stories.
  • An Advisory Panel, comprising people with expertise or experience relevant to a given health condition, plays an important role guiding the development and conduct of the research. Members share their expertise in relation to recruitment, research materials, feedback on thematic summaries written for the websites, and dissemination of research findings.
  • The websites are also available for health professional education and professional development, and for informing person-centred policy development.