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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]

This article argues for the concurrent and comparative use of genograms and ecomaps in family caregiving research. A genogram is a graphic portrayal of the composition and structure of one's family and an ecomap is a graphic portrayal of personal and family social relationships. Although development and utilization of genograms and ecomaps is rooted in clinical practice with families, as research tools they provide data that can enhance the researcher's understanding of family member experiences. In qualitative research of the supportive and nonsupportive interactions experienced by male family caregivers, the interactive use of genograms and ecomaps (a) facilitated increased understanding of social networks as a context for caregiving, (b) promoted a relational process between researcher and participant, and (c) uncovered findings such as unrealized potential in the participant's social network that may not be revealed with the use of the genogram or ecomap alone, or the noncomparative use of both. [ABSTRACT FROM AUTHOR]

The purpose of this study is to describe the process of parenting a child with life-threatening heart disease. Despite advances in pediatric cardiac sciences, hypoplastic left heart syndrome remains difficult and controversial to treat. The Norwood surgical approach is a developing technology, and little is known about how mothers and fathers experience parenting a child who survives this treatment. Constructivist grounded theory informed this Canadian study that involved multiple interactive interviews with 9 mothers and 7 fathers of children with hypoplastic left heart syndrome who were at various stages of treatment. Extraordinary parenting in a context of uncertainty was evident as parents simultaneously safeguarded their child's precarious survival as well as their own survival. As technologically advanced treatment contributes to the survival of children with complex health conditions, health care professionals must consider how to promote and support parenting strategies that benefit the new survivors of technology as well as their families. [ABSTRACT FROM AUTHOR]

The authors successfully used the card sort data collection technique with 17 female family caregivers in a large ethnographic study of nonsupport. In this article, they describe the practical issues they addressed. Initially, they developed strategies to construct meaningful statements that reflected key themes and were manageable in an interview. Later, to address challenges for participants, they developed approaches to assist women in moving beyond their own experience, dealing with test anxiety, and anticipating an emotional response. To facilitate effective data collection, they made detailed arrangements in advance, collected "talk aloud" data that captured women's decisions, and maintained accurate records. The women felt validated in their caregiving roles, as the card statements reflected their experience and rich data was elicited. The card sort exercise contributed information about variability in the meaning of similar interactions for different women and a beginning understanding of the criteria women used to make decisions. [ABSTRACT FROM AUTHOR]