Using focused ethnography in paediatric settings to explore professionals' and parents' attitudes towards expertise in managing chronic kidney disease stage 3-5

Abstract

Background: Interactions between parents and healthcare professionals are essential when parents of children with chronic conditions are learning to share expertise about clinical care, but limited evidence exists on how they actually interact. This paper discusses the use of focused ethnography in paediatric settings as an effective means of exploring attitudes towards expertise. Methods: The paper draws on repeated observations, interviews and field-notes involving the parents of six children with chronic kidney disease, and 28 healthcare professionals at two, tertiary, children's hospital-based units. Data were analysed using the Framework approach and the concepts of expertise and self-management. Results: Our study highlighted rewards and challenges associated with focused ethnography in this context. Rewards included the ability to gain a richer understanding of the complex phenomena of mutual acknowledgement of expertise that occurs during parent/ healthcare professional interactions. Challenges related to gaining informed consent and ensuring potential participants had an adequate understanding of the purpose of the study. Two dimensions of parental expertise around their child (personal and clinical) were evident in our data. Parents' and professionals' expertise about the child and their condition was acknowledged and exchanged as parents learnt to share clinical-care with the multi-disciplinary team. Healthcare professionals acknowledged parents' need to understand aspects of each of the eight disciplinary knowledge bases relating to their child' s management and recognised parents' expert knowledge of their child, found ways to mobilise this knowledge, and wove parents' expertise into the management plan. Parents spoke of the degree to which their own expert knowledge of their child complemented healthcare professionals' clinical knowledge. However, ambivalence around expertise was evident as both parents and healthcare professionals questioned what the expertise was, and who the expert was. Our discussion focuses on the ways healthcare professionals and parents share expertise around the child's condition as parents take on responsibility for home-based clinical care. Conclusions: Our findings point to focused ethnography being an effective way of capturing new insights into parent and professional interactions in a paediatric setting and mutual acknowledgement of expertise; these insights may help redress the reported limitations of previous, retrospective studies.