Policies and guidance acknowledge that parents of children with CKD perform the vast majority of complex and demanding clinical care at home, and that the paediatric renal MDT is a focus for parents to seek specialist support for this aspect of their parenting role [4, 38]. The fact that parents develop considerable expertise in managing a range of children’s long-term conditions is widely acknowledged, but research has consistently indicated that parents believe their expertise is not valued by health professionals, and tension and conflict between parents and professionals are often reported .
In this paper, we have developed an account of parent-professional practice using a conceptual and methodological framework not previously used in this context to help illuminate the process of shared clinical caring. Through progressively focussing on the research topic whereby we moved from describing, exploring and discussing the broader context of CKD management in a national network of renal MDTs, to observing and exploring parent-professional interactions in particular cases, we have provided new insights into shared clinical caring activities. Using participant observation combined with interviews, case-note reviews and field-notes enabled us to explore professional/parent interactions and the way tools were used to accomplish common ground within the three dimensions of practice (mutual engagement, joint enterprise and shared repertoire) [27, 29].
Professionals’ primary focus was on diagnosis and treatment of the child’s clinical problem, while parents’ primary focus was on their child’s overall wellbeing, and the role(s) they themselves needed to adopt to share their child’s clinical care with the MDT. Because many aspects of the clinical role were delegated to parents to undertake at home, there was a shared assumption that parents would lead the day-to-day clinical role, and therefore, that parents need MDT support to help them deal with the associated practical and emotional challenges.
Our data have demonstrated both similarity to and divergence from the literature concerning family management of long-term conditions. This study’s primary contribution is in shifting the focus away from that reported in the literature that investigated the work associated with family management, information needs and parents’ roles in a range of long-term conditions (but rarely including CKD); notably these studies looked broadly and usually retrospectively at parents’ management activity [14, 17, 20, 39–41]. Furthermore, a Cochrane review  that highlights ineffective negotiations about roles in hospital settings calls for researchers to identify effective models of care which may ameliorate such communication breakdowns. The current study addresses this issue; to the best of our knowledge it is the first to elicit data, foster longitudinal and focussed insights, and report on the actual parent-professional experience of shared care and negotiation between parents and renal-MDTs. These insights are generally not as accessible through other research approaches such as those reported in the literature (e.g. quantitative methods or retrospective qualitative accounts).
Contrary to reports in the literature (e.g. [17, 21]) we did not observe or elicit accounts of tension or conflict between parents and professionals. Where tensions were occasionally evident in our data this was either within families or within MDTs, but not between professionals and parents. We have reported and discussed this issue elsewhere .
As is usual in observational research the Phase 3 sample was small and may not represent all phenomena that affect parents using child-health services, so we do not claim that our findings are representative of all parents. Therefore, our findings may be an anomaly of this particular population, or may have been influenced by the presence of the researcher , so further research is needed to investigate these issues.
Additionally, the findings may differ from other reports because previous studies tended to rely on respondents’ retrospective accounts, or the research questions posed may have focused only on participants’ difficulties and negative experiences whilst our approach was prospective and asked a range of closed and open-ended questions about participants’ experiences.
Moreover, recent research into family-management of long-term conditions of childhood , including our own prior research around CKD management [11, 41] highlights a gap in our understanding of the way health-care professionals provide specialist support, and the ways parents learn to master treatment regimens and fit them into their everyday life . Our study also addresses this gap through a methodological approach that is novel in the field of shared clinical care; therefore, we argue that this paper makes a methodological contribution to knowledge in this area.
Previous studies in this area mostly drew on data collected from parents whose care-giving practices were already well established, and who had consequently developed their own unique management styles (e.g. ). There is little prior evidence of observational research that captures parent/professional interactions when parents are actually learning to administer clinical care to their child with CKD, or that uses the progressively focused approach we adopted in this study.
The professional participants in this study were experts in clinical care of children with CKD, and in supporting parents in the shared caring role. However, novice practitioners will need explicit guidance for this aspect of their role so our data can be used to inform curricula for the education of undergraduate practitioners, thereby helping them to develop the skills to promote parents’ shared clinical caring skills from early in the child’s condition trajectory.
The key theoretical contribution of this paper focusses on the idea that professionals can find it challenging to make tacit knowledge explicit to each other and to parents when engaging parents in shared practice. Firstly, it identifies the existence of mutual engagement during interactions between professionals and parents around the shared concern of achieving optimum clinical management and wellbeing of each child with CKD. In line with Wenger’s definition of negotiation, our data and discussion illustrate continuous interaction between parents and professionals whereby gradual achievement was evidenced (by parents as they mastered clinical skills and knowledge, and by professionals as they acquired understanding about parents’ individual needs and preferences), and of ‘give-and-take’ between parents and professionals during the process of mutual engagement. Next, our theoretical contribution demonstrates a collective process of joint enterprise that was the result of a set of shared tasks, and a collective process of negotiation during which parents and professionals fine-tuned their practice and were observed to hold each other accountable to the achievement of optimum clinical outcomes for the child; this reflects the full complexity of mutual engagement. Finally, it introduces the idea of accomplishing common ground whereby professionals develop and use a shared repertoire of tools for negotiating meaning with each other and parents about children’s clinical caring needs.
Whereas the adaptive practice model  seems to imply that the only important communication in child-health care is unidirectional (i.e. from health professional to parent) and that professionals have little to learn from parents, our conceptual framework has illuminated a two-way process of communication where parents’ expertise is recognised and valued by professionals, and parents learn to communicate with professionals about shared caring. Although there is now a growing awareness in the health and social care field of the potential of Communities of Practice  and Activity Theory  to help address complex health care situations, to our knowledge no other reports use these concepts in the way we have used them to explore social interaction between MDTs and parents as they share children’s clinical care. Therefore, we argue that our contribution adds to this important field by extending the evidence base.
Previous ethnographic studies vividly demonstrate the insights that observational techniques can engender, and confirm the conclusion that they may be better suited than other methods to examining complex interventions in child-health contexts [45, 46]. However, ethnographic studies that focus on parents’ experiences are historically underutilised in child-health settings, in particular with research that seeks to understand the complex intervention  of shared caring in CKD management. A promising direction for future research would be to observe and analyse parent-professional interactions later in the trajectory when parents’ care-giving practices are established to determine whether the characteristics of shared caring change over time.
A body of evidence is emerging about a positive relationship between MDT support and clinical outcomes [15, 16] although this does not include qualitative studies to help interpret these results within the context of MDT/parent interactions. Our study contributes to this evidence-base by producing new insights into the way parents and MDTs embark on shared caring. One key advantage of MDT care as described in this paper is that an MDT gives multiple opportunities to interact with parents (using a combination of uni-disciplinary and multi-disciplinary tools), and feed back into the team their level of understanding as each professional engages with parents about different elements of their child’s care using different tools.
Previous studies mostly focussed on parent support provided by doctors and nurses, with little evidence of other disciplines’ contributions although multi-agency working has been explored in the context of complex health needs . However, we believe the study reported here is the first to focus on the way a national network of MDTs facilitates parents’ clinical role development, and the first to use a longitudinal, mixed-methods design to explore ‘live’ parent/professional communications. This study has started defining the vital ingredients of the complex-intervention  of shared renal care, future research that builds on this study could involve development and testing of a multidisciplinary assessment tool to determine parents’ individual support needs and preferences as they embark on the process of shared clinical caring.
Researchers and clinicians are sometimes reported to be working in isolation from each other thereby compromising coordinated attempts to develop a knowledge base ; a strength of this study is that it represents a multidisciplinary collaboration involving researchers, clinicians and parent advisors. Our results could also be transferred to other clinical contexts where parents undertake similar types of complex, home-based clinical care (e.g. cancer, rheumatology or cystic fibrosis services).