Multidisciplinary teams, and parents, negotiating common ground in shared-care of children with long-term conditions: A mixed methods study

Abstract

BackgroundLimited negotiation around care decisions is believed to undermine collaborative working between parents of children with long-term conditions and professionals, but there is little evidence of how they actually negotiate their respective roles. Using chronic kidney disease as an exemplar this paper reports on a multi-method study of social interaction between multidisciplinary teams and parents as they shared clinical care.MethodsPhases 1 and 2: a telephone survey mapping multidisciplinary teams’ parent-educative activities, and qualitative interviews with 112 professionals (Clinical-psychologists, Dietitians, Doctors, Nurses, Play-specialists, Pharmacists, Therapists and Social-workers) exploring their accounts of parent-teaching in the 12 British children’s kidney units. Phase 3: six ethnographic case studies in two units involving observations of professional/parent interactions during shared-care, and individual interviews. We used an analytical framework based on concepts drawn from Communities of Practice and Activity Theory.ResultsProfessionals spoke of the challenge of explaining to each other how they are aware of parents’ understanding of clinical knowledge, and described three patterns of parent-educative activity that were common across MDTs: Engaging parents in shared practice; Knowledge exchange and role negotiation, and Promoting common ground. Over time, professionals had developed a shared repertoire of tools to support their negotiations with parents that helped them accomplish common ground during the practice of shared-care. We observed mutual engagement between professionals and parents where a common understanding of the joint enterprise of clinical caring was negotiated.ConclusionsFor professionals, making implicit knowledge explicit is important as it can provide them with a language through which to articulate more clearly to each other what is the basis of their intuition-based hunches about parents’ support needs, and may help them to negotiate with parents and accelerate parents’ learning about shared caring. Our methodology and results are potentially transferrable to shared management of other conditions.

Parents’ learning needs and preferences when sharing management of their child’s long-term/chronic condition: A systematic review

“…This means HCPs may not be aware of parents' needs and preferences, especially in the initial stages following diagnosis [34] when information provision and the formation of relationships is critical. HCPs may rely on their own 'tacit knowledge' to help determine how to pitch information [34], which can result in HCPs misjudging (often underestimating) parents' learning and information needs [28].…”

“…Povlsen et al [27:41] suggested that with ethnic minority families it was useful for HCPs to ascertain parents' understanding of their child's condition and its 'impact on the family within the context of their cultural reality'. HCPs and parents discussing, and where possible sharing, concepts of LTCs, self-care and shared management was thought to facilitate parents' learning [34]. Some parents reported benefiting from meeting other parents of children with the same LTC [25] and from HCPs sharing anecdotes and anonymous examples of other families' learning [10,34].…”

“…Concerns were expressed about multi-disciplinary team (MDT) and multi-agency working, with parents experiencing poor information provision due to lack of communication within the team [38], resulting in information either not being provided at all, being duplicated [21], or information overload [28]. However, MDT working in renal services facilitated parents' learning as it provided multiple opportunities for interaction between HCPs and parents and for HCPs to feedback to the team about parents' understanding of their child's condition [34]. This variation in findings may be a result of differing study designs or be specific to renal MDTs.…”

“…HCPs developing good working relationships with parents [34], combined with creating a reciprocal atmosphere where parents would feel able to ask questions and express opinions [33], facilitated the process of teaching. Povlsen et al [27:41] suggested that with ethnic minority families it was useful for HCPs to ascertain parents' understanding of their child's condition and its 'impact on the family within the context of their cultural reality'.…”

“…The importance of tailoring information provision and teaching to individual parents' requirements [32] means HCPs can be required to: elicit parents' individual concerns, learning needs and understanding on an ongoing basis [28]; take into account parents' previous experiences and knowledge [33]; and take an interest in the family's whole life situation [26]. Use of various teaching methods and tools to support parents' learning was believed to be effective [34,35]. This included combining verbal, written and audio-visual materials [33,36], using dummies and vignettes [37] and demonstration [4].…”