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Members of the autistic community have long advocated for more input into and participation with autism-related research. Currently, the power to determine the direction of autism-related research and knowledge production related to autism lies with non-autistic researchers, while the wishes and perspectives of the autistic community are largely ignored. There is a growing trend toward ethical autism-related research, however, in which the perspectives of all stakeholders, particularly those of autistic individuals, are sought and their expertise on autism is foregrounded. In a study exploring the experiences of childhood adversity and resilience among autistic adults, we strove to conduct our research in an inclusive and ethical way, by integrating participatory methods, such as community engagement to inform research design, and credibility checking with participants to confirm that the analysis resonated with their experiences. Five stakeholders, representing parents of children on the autism spectrum, professionals, and autistic community members were recruited to provide input into the research design and provide insight into autistic ways of communicating, interacting, and being. The recommendations generated through this community engagement were then integrated into an interpretative phenomenological analysis (IPA) framework and implemented with four adult autistic participants. Through reflection on the process of community engagement, development of research design, implementation of the study, and credibility checking, it is clear that incorporating participatory methods into IPA increases rigor and ensures that autistic perspectives are represented through research. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]