title: Development of a measure of caregiver burden in paediatric chronic kidney disease: The Paediatric Renal Caregiver Burden Scale.
abstract: To inform the development of a measure of caregiver burden for carers of children with chronic kidney disease, interviews were conducted with 16 caregivers and 10 renal healthcare professionals. A pool of 97 items generated from interviews was reduced to 60 items following review. A piloting exercise provided evidence for the usability, readability and relevance of items and informed further adaptations resulting in the 51-item Paediatric Renal Caregiver Burden Scale. Further to assessment of its psychometric properties, it is hoped that that the Paediatric Renal Caregiver Burden Scale will serve as a useful measure of caregiver burden in paediatric chronic kidney disease.
authors.affiliation: Canterbury Christ Church University, UK.
authors.forename: Rhian
authors.initials: R
authors.lastname: Parham
authors.affiliation: Canterbury Christ Church University, UK nicolajacyna@nhs.net.
authors.forename: Nicola
authors.initials: N
authors.lastname: Jacyna
authors.affiliation: Great Ormond Street Hospital for Children NHS Foundation Trust, London.
authors.forename: Daljit
authors.initials: D
authors.lastname: Hothi
authors.affiliation: Great Ormond Street Hospital for Children NHS Foundation Trust, London.
authors.forename: Stephen D
authors.initials: SD
authors.lastname: Marks
authors.affiliation: Canterbury Christ Church University, UK.
authors.forename: Sue
authors.initials: S
authors.lastname: Holttum
authors.affiliation: Canterbury Christ Church University, UK.
authors.forename: Paul
authors.initials: P
authors.lastname: Camic
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011594:Psychometrics; D051436:Renal Insufficiency, Chronic / Q000523:psychology / Q000628:therapy*; D011795:Surveys and Questionnaires
keywords: caregiver burden; measure development; paediatric chronic kidney disease