title: In their own words: the value of qualitative research to improve the care of children with chronic kidney disease.
abstract: Patient- and family-centered care is hailed as a hallmark of high-quality pediatric care. This partnership between patients, families and their healthcare providers is central to caring for children with chronic kidney disease (CKD), given the long-term and profound impact of the disease and its treatment on the development and quality of life of these children. This paradigm hinges on a comprehensive and detailed understanding of the needs, beliefs and values of children with CKD and their families. However, their perspectives may remain undisclosed during time-limited clinical consultations and because of beliefs that if they did disclose their concerns, their care would be jeopardized. Qualitative research provides an avenue for children and families to articulate their perspectives and experiences and thereby to generate relevant, in-depth and often compelling insights to inform care. Yet, qualitative studies remain sparse in biomedical journals. Increasing both our awareness of the role of qualitative research in improving care and outcomes for children and adolescents with CKD and our understanding of the conduct and rigor of qualitative studies is required. This article will outline how qualitative research can generate relevant evidence to inform practice and policy in children with CKD, provide an overview of qualitative methods and introduce a framework to appraise qualitative research. More evidence derived from qualitative research is needed to inform shared decision-making and the development of interventions and policies that address the preferences and priorities of children with CKD and their families. Ultimately, this strategy may help to improve the outcomes that they regard as critical to their care.
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, 2006, Australia. camilla.hanson@sydney.edu.au.|Centre for Kidney Research, The Children's Hospital at Westmead, Cnr Hawkesbury Rd and Hainsworth Street, Westmead, NSW, 2145, Australia. camilla.hanson@sydney.edu.au.
authors.forename: Camilla S
authors.initials: CS
authors.lastname: Hanson
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, 2006, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Cnr Hawkesbury Rd and Hainsworth Street, Westmead, NSW, 2145, Australia.
authors.forename: Jonathan C
authors.initials: JC
authors.lastname: Craig
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, 2006, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Cnr Hawkesbury Rd and Hainsworth Street, Westmead, NSW, 2145, Australia.
authors.forename: Allison
authors.initials: A
authors.lastname: Tong
mesh_terms: D002648:Child; D003657:Decision Making; D019317:Evidence-Based Medicine / Q000379:methods / Q000458:organization & administration; D005190:Family; D006801:Humans; D010358:Patient Participation; D057240:Patient Preference; D018802:Patient-Centered Care / Q000379:methods / Q000458:organization & administration; D036301:Qualitative Research; D058996:Quality Improvement; D011788:Quality of Life; D051436:Renal Insufficiency, Chronic / Q000628:therapy*
keywords: Chronic kidney disease; Focus groups; Interviews; Patient-centered care; Pediatrics; Qualitative research