Children and adolescents who live with chronic conditions are rarely participants in research specifically focused on meeting their needs, nor in intervention planning research. There are, however, special considerations required when conducting research with children and adolescents. This article offers Interview Guidelines designed to ensure children and adolescents’ control of and comfort with interviewing and to maximize the caliber of ethically co-constructed data. We developed, tested, and revised these guidelines with 80 children and adolescents aged 5 to 17 years: 27 with complex Congenital Heart Disease (CCHD) (5–17 years) and 13 with Early Onset Scoliosis (5–12 years) and 28 siblings (7–17 years). The guidelines were further tested with 12 adolescents with Adolescent Idiopathic Scoliosis (10–16 years) and 10 children and adolescents with CCHD (8–12 years). The children and adolescents recounted stories about their everyday life and activities through digitally recorded face-to-face interviews that were transcribed. Detailed field notes were recorded before and after the interview. Our Interview Guidelines address ethics, informed assent and consent, pre-interview planning, establishing trust, and engaging children and adolescents in research. Special attention is given to involving parents in pre-interview planning and disclosing sensitive information post interview. Involving children and adolescents as research participants to gain information from them, not only about them, will assist those in planning appropriate intervention research to meet the needs of children and adolescents living with chronic conditions and their siblings.

患有慢性疾病的儿童和青少年很少参加专门针对其需求的研究，也不参与干预计划研究。但是，在与儿童和青少年进行研究时，需要特殊考虑。本文提供了面试指南，旨在确保儿童和青少年对面试的控制和舒适度，并最大程度地提高道德合构数据的口径。我们针对80例5至17岁的儿童和青少年制定，测试和修订了这些指南：27例患有复杂的先天性心脏病（CCHD）（5-17岁），13例患有早发性脊柱侧弯（5-12岁）和28个兄弟姐妹（7-17年）。该指南对12名青少年特发性脊柱侧弯青少年（10-16岁）和10名CCHD儿童和青少年（8-12岁）进行了进一步测试。儿童和青少年通过数字记录的面对面采访记录了他们日常生活和活动的故事。访谈前后记录了详细的现场笔记。我们的采访指南涉及道德，知情同意和同意，采访前计划，建立信任以及让儿童和青少年参与研究。特别注意让父母参与面试前的计划并在面试后披露敏感信息。让儿童和青少年作为研究参与者，从他们那里获得信息，不仅是关于他们的信息，