TY - JOUR
T1 - Beyond the Interview Guide
T2 - Experiences of Practically and Mindfully Implementing Interview Guidelines When Conducting Research With Children and Adolescents With Chronic Conditions and Their Siblings
AU - Rogers, Laura G.
AU - Shearer, Kathleen
AU - Hryniuk, Sarah Southon
AU - Ray, Lynne
AU - Rempel, Gwen R.
N1 - Funding Information:
We gratefully acknowledge the children and adolescents, parents and siblings who participated in this research. We also acknowledge the contributions of co-investigator Joyce Magill-Evans, Professor, Faculty of Rehabilitation Medicine, University of Alberta (U of A). We thank the U of A Bachelor of Science in Nursing Honors Program Undergraduate Honors students who were research assistants on the project—Heather Ulmer, Nicole Dahl, and Ross Ballantyne. We also acknowledge our partnership with Leanne Willson, Associate Professor, Psychology, Community Engaged Research, The King’s University, Edmonton, Alberta, and the research assistant work of Jeremy Kieftenbeld, Bachelor of Arts in Psychology Program, The King’s University. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Women and Children’s Research Health Institute, University of Alberta for the Heart Stories Study; the Canadian Pediatric Spinal Deformities Study Group for the Straight Talk about Scoliosis Study: Children’s Stories of Living with Early Onset Scoliosis. Undergraduate Honors Nursing student Heather Ulmer was funded by the Endowment Fund for the Future, Faculty of Nursing, and the Undergraduate Researcher Stipend, University of Alberta.
Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Women and Children’s Research Health Institute, University of Alberta for the Heart Stories Study; the Canadian Pediatric Spinal Deformities Study Group for the Straight Talk about Scoliosis Study: Children’s Stories of Living with Early Onset Scoliosis. Undergraduate Honors Nursing student Heather Ulmer was funded by the Endowment Fund for the Future, Faculty of Nursing, and the Undergraduate Researcher Stipend, University of Alberta.
Publisher Copyright:
© The Author(s) 2021.
PY - 2021
Y1 - 2021
N2 - 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.
AB - 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.
KW - congenital heart disease
KW - early onset scoliosis
KW - field notes
KW - interview guidelines
KW - interviewing adolescents
KW - interviewing children
KW - interviewing children and adolescents with chronic conditions
KW - interviewing siblings
KW - qualitative interviewing
UR - http://www.scopus.com/inward/record.url?scp=85103543699&partnerID=8YFLogxK
U2 - 10.1177/1609406920982148
DO - 10.1177/1609406920982148
M3 - Journal Article
AN - SCOPUS:85103543699
VL - 20
JO - International Journal of Qualitative Methods
JF - International Journal of Qualitative Methods
ER -