Caregiver burden in paediatric chronic kidney disease

Section A provides an overview of the role of family caregivers of individuals with chronic illness, and describes key conceptualisations and theories posited in the caregiver literature. This is followed by an overview of research conducted with caregivers of children with chronic kidney disease (CKD), a summary of the limitations of this research, and suggestions for future research.
Section B Despite a recognised need to monitor caregiver burden in caregivers of children with CKD, there is no measurement tool currently available to meet this aim. The present research documents the development of a measure of caregiver burden specific to family caregivers of children with CKD. Methods: Interviews were conducted with 16 caregivers of children with CKD and 10 healthcare professionals in order to generate measure items. A provisional version of the measure was developed and piloted with 18 caregivers of children with CKD and five healthcare professionals. Results: An initial pool of 97 items was generated from the content of interviews, which was reduced to 60 items following review for item redundancy. A piloting exercise provided preliminary evidence for the usability, readability, and relevance of measure items; adaptations further to piloting resulted in the 51-item ‘Paediatric Renal Caregiver Burden Scale’ (PR-CBS). Conclusions: It is hoped that the PR-CBS will serve to identify areas of need amongst caregivers of children with CKD, and in turn improve outcomes for this caregiver population and children with CKD.
Section C is a critical appraisal of the conducted research study, and includes an overview of research abilities acquired during its completion, reflections on how the research may have been conducted differently, implications for future clinical practice, and ideas for future research.