title: From informed consent to dissemination: Using participatory visual methods with young people with long-term conditions at different stages of research.
abstract: Research with young people suffering from a long-term illness has more recently incorporated the use of visual methods to foster engagement of research participants from a wide age range, capture the longitudinal and complex factors involved in young people's experiences of care, and allow young people to express their views in multiple ways. Despite its contributions, these methods are not always easy to implement and there is a possibility that they might not generate the results or engagement initially anticipated by researchers. We hope to expand on the emerging discussion on the use of participatory visual methods by presenting the practical issues we have faced while using this methodology during different stages of research: informed assent/consent, data collection, and the dissemination of findings. We propose a combination of techniques to make sure that the research design is flexible enough to allow research participants to shape the research process according to their needs and interests.
authors.affiliation: a Department of Applied Health Research , University College London , London , UK.
authors.forename: Cecilia
authors.initials: C
authors.lastname: Vindrola-Padros
authors.affiliation: b Department of Children's Nursing , London South Bank University , London , UK.
authors.forename: Ana
authors.initials: A
authors.lastname: Martins
authors.affiliation: c School of Nursing & Midwifery , Trinity College Dublin , Dublin , Ireland.
authors.forename: Imelda
authors.initials: I
authors.lastname: Coyne
authors.affiliation: b Department of Children's Nursing , London South Bank University , London , UK.
authors.forename: Gemma
authors.initials: G
authors.lastname: Bryan
authors.affiliation: b Department of Children's Nursing , London South Bank University , London , UK.|d Great Ormond Street Hospital NHS Foundation Trust , London , UK.
authors.forename: Faith
authors.initials: F
authors.lastname: Gibson
mesh_terms: D000293:Adolescent; D000298:Adolescent, Hospitalized / Q000523:psychology*; D000884:Anthropology, Cultural; D001294:Attitude to Health; D001296:Audiovisual Aids; D002648:Child; D002673:Child, Hospitalized / Q000523:psychology*; D002675:Child, Preschool; D002908:Chronic Disease / Q000523:psychology*; D055812:Community-Based Participatory Research / Q000379:methods* / Q000592:standards; D004739:England; D005260:Female; D006801:Humans; D033181:Information Dissemination / Q000941:ethics; D057828:Informed Consent By Minors / Q000941:ethics*; D008297:Male; D036301:Qualitative Research; D012107:Research Design / Q000592:standards; D035842:Research Subjects / Q000523:psychology*; D055815:Young Adult
keywords: Participatory research; long-term illness; visual methods; young people