Little evidence exists to inform our understanding of the interactions between parents and HCPs as parents learn to master the clinical skills to manage their child’s CKD at home. This gap in the evidence may exist because of the perceived difficulty and ethical concerns around obtaining consent and safeguarding privacy when conducting research that involves observing interactions in clinical settings [
5,
6]. Ethnographic research is one methodological approach that can address these challenges but it is argued that it has been rarely used as a methodology for the in-depth study of paediatric healthcare issues in the context in which they occur, due to these reported concerns [
7]. Whilst ethnography remains challenging in paediatric settings and in the wider healthcare sector, there is evidence of use of this approach in a wide range of other settings and with a range of participants [
8,
9]. However, with careful consideration, discussion with stakeholders, and appropriate approvals, users of ethnographic research findings in paediatric settings can be reassured about the rigour of studies using this methodology.
In this paper we discuss phase 3 of a three phased study in which we sought to obtain a detailed insight into the way multidisciplinary teams (MDTs) in a network of 12 UK children’s kidney units teach parents to share CKD management in preparation for home-based clinical care [
10]. We previously outlined the way parents and professionals in this study negotiated common ground in shared-care, as part of this process we noted that professionals drew on parents’ expert knowledge of their child [
11]. This paper explores and discusses how we used a focused ethnographic methodology as an effective means of exploring professionals’ and parents’ attitudes towards expertise and of considering the strengths and limitations of using observational methods in an acute child-health care setting.
The rationale for using focused ethnography
Parents are increasingly responsible for managing complex aspects of clinical care at home for children with long-term conditions, yet few researchers have attempted to explore the actual process of teaching and learning within HCP-parent encounters in acute child-health settings. A limitation of previous studies is that they were either retrospective or used participants’ reports of their experience rather than observation, and so were unable to focus on actual encounters between HCPs and parents at times when parents were learning to become home-based clinical caregivers. Therefore, detailed, prospective research that investigates the ways HCPs promote learning from early in the parents’ clinical care-giving journey is needed. This has the potential to inform MDTs about the factors that are seen to be important in HCP-parent interactions as HCPs teach parents to deliver safe and effective home-based clinical management, thereby contributing to optimum clinical outcomes for children.
We, therefore, used a prospective methodological approach that would enable us to contribute to the evidence base on the way HCPs teach parents of children with CKD, and the way parents learn to become home-based clinical care-givers. We sought to shift the focus away from that reported in the literature that investigated parents’: management of conditions such as CKD, [
13,
14], work associated with managing chronic illness [
15], information needs [
16‐
18]; and roles [
19‐
22]; notably these studies looked broadly and usually retrospectively at parents’ management activity.
A focused ethnographic approach [
23] was utilised in this phase. Ethnography aims to understand the cultural meanings people in a specific culture use to interpret their experiences [
24,
25] whereas focused ethnography has emerged as a method for applying ethnography to ‘focus on a distinct issue or shared experience in cultures or sub-cultures in specific settings…..rather than throughout entire communities’ [23:36]. A central assumption of this approach is that to understand what people are doing and why: ‘…one needs to understand the meanings involved: how they interpret and evaluate the situations they face, and their own identities’ [25:168]. Focused ethnographic research often uses small sample sizes as its aim is to explore participants’ beliefs and practices, viewing them within the context in which they actually occur rather than aiming to produce findings which can be generalised [
26].
Using this approach enabled us to gain a detailed insight into the social context in which MDTs support the learning process of parents, and to report on the actual parent-HCP experience of sharing knowledge and skills around clinical management. These insights are generally not as accessible through other research approaches such as those widely reported in the literature (e.g. quantitative methods or qualitative accounts that are retrospective).
Focused ethnographic research involves generating data by observing a group or everyday social setting [
26,
27]. Observing events in their natural social context can provide valuable insights, in particular into the relationships and communications between parents and HCPs and the cultural meanings they use to understand these social processes. Though this type of research is recognised as particularly valuable in researching child healthcare as it aims to create more balanced relationships between researchers and participants compared to other methods [
24], its use has been limited, especially in the area of shared management of CKD and in acute paediatric settings.
Ethnographic fieldwork was undertaken in one hospital renal unit to explore the experience of long-term renal illness from the perspective of children and young people [
1]. Through using ethnographic methodologies, new information was uncovered around children’s compliance with treatment and adolescents’ experiences of renal replacement therapies. Other studies which have used observational methods to focus on parents’ experiences in acute settings have explored the level at which parents participate in decision-making whilst their child is in hospital, and relationships between HCPs and parents in neonatal intensive care units [
28,
29]. Coyne [
30] explored children’s, parents’ and nurses’ views on participation in healthcare on paediatric wards using observational methods and interviews. She found consultation with children about their care was widely believed to be important, but in reality children’s views were underused; however, only the interview data appeared to be included in the analysis. Observational methods were utilised in children’s outpatient settings to look at exchange of information between children, young people and staff [
31] and how HCPs share responsibility with children and parents [
32].
As illustrated by these studies, ethnographic and observational research can provide valuable insights, in particular into the relationships and communications between children, parents and HCPs. However, only one of these studies specifically focused on children with CKD and none focused on the actual interactions between HCPs and parents as they begin to share clinical management.
Through utilising focused ethnography, we found we were able to explore HCPs’ and parents’ attitudes towards expertise; therefore we adopted an analytical framework based on concepts of expertise and self-management [
33]. These concepts are of particular relevance in healthcare for children and adults living with chronic conditions, where the White Paper, Our Healthier Nation – Saving Lives [
34] outlines a philosophy which recognises how a chronically ill individual’s expertise and knowledge about their own condition, should be utilised [
35]. This concept of an expert patient as someone who is empowered to self-manage their own condition, and on an equal footing with HCPs [
36], is also relevant when considering parents of children with chronic conditions such as CKD as they are often required to deliver complex clinical care to their child at home.
Expertise in healthcare has various definitions. Kirk [
19] suggests that parents of children with chronic illness view their own expertise as consisting of two different types of knowledge; the specialised medical knowledge associated with their child’s condition which they have acquired from HCPs, and the experiential knowledge obtained through caring for their child on a daily basis. The differences between parental and HCP expertise can result in difficulties integrating these two different knowledge bases and lead to HCPs failing to recognise and utilise parents expertise [
37‐
39]. Both Thorne [
40] and Kirk [
19] argue that the scientific expertise of HCPs is privileged during interactions between parents and HCPs, as medical expertise is viewed as more reliable and valid than that of the lay person [
35]. A recent literature review by Smith et al. [
41] confirmed the overwhelming picture presented in research evidence that parents perceive their expertise is not always valued and HCPs’ attitudes and willingness to collaborate in relation to care-decisions is variable and inconsistent. Smith et al. [
41] concluded that further research is necessary both around the concept of the expert parent and how parents develop the expertise to manage their child’s condition. They believe this would ensure parents get suitable support when learning to share clinical care. The contemporaneous study reported here addresses this gap by exploring parents and HCPs attitudes towards expertise as parents learned the skills and knowledge needed to carry out clinical care at home for their child with CKD stage 3–5.