title: Why do adolescents with type 1 diabetes and their parents participate in focus groups?
abstract: Almost all patient-centered research is dependent on voluntary participation by participants. Many forces, however, act to either encourage or inhibit people from deciding to participate. This study explored adolescents' with type 1 diabetes and their parents' reasons for participating in a research study. We recruited adolescents with type 1 diabetes mellitus and their parents to participate in a focus group study. Qualitative analysis of the focus group data followed a set procedure: (a) audio review, (b) reading through transcriptions, (c) discussions among investigators regarding key elements of participants' perceptions, (d) determination of conceptual themes, and (e) assignment of relevant responses to appropriate thematic constructs. The 10 focus groups involved 59 participants. The three major themes that developed were giving and receiving, desire for peer socialization, and need for validation. Themes captured the reasons adolescents with type 1 diabetes and their parents decided to participate in this research. A better understanding of why people participate in research may help us to meet their needs and desires more completely. Designing research to meet these reasons will have the dual affect of increasing participation while also better serving those who choose to be studied.
authors.affiliation: Children's Health Services Research, Indiana University, School of Medicine, The Regenstrief Institute for Health Care, Indianapolis 46202, USA. aaecarro@iupui.edu
authors.forename: Aaron E
authors.initials: AE
authors.lastname: Carroll
authors.forename: David G
authors.initials: DG
authors.lastname: Marrero
authors.forename: Melinda M
authors.initials: MM
authors.lastname: Swenson
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000294:Adolescent Behavior / Q000523:psychology; D000328:Adult; D003922:Diabetes Mellitus, Type 1 / Q000517:prevention & control / Q000523:psychology*; D005260:Female; D017144:Focus Groups / Q000706:statistics & numerical data; D007722:Health Knowledge, Attitudes, Practice; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D015146:Midwestern United States; D009042:Motivation; D015404:Nursing Methodology Research; D010290:Parents / Q000193:education / Q000523:psychology*; D010342:Patient Acceptance of Health Care / Q000523:psychology* / Q000706:statistics & numerical data; D018579:Patient Selection; D010379:Peer Group; D000297:Psychology, Adolescent; D036301:Qualitative Research; D012201:Reward; D012649:Self Concept; D012951:Socialization; D011795:Surveys and Questionnaires; D035141:Voluntary Programs