Distributed expertise: qualitative study of a British network of multidisciplinary teams supporting parents of children with chronic kidney disease

Abstract

BackgroundLong-term childhood conditions are often managed by hospital-based multidisciplinary teams (MDTs) of professionals with discipline specific expertise of a condition, in partnership with parents. However, little evidence exists on professional–parent interactions in this context. An exploration of professionals' accounts of the way they individually and collectively teach parents to manage their child's clinical care at home is, therefore, important for meeting parents' needs, informing policy and educating novice professionals. Using chronic kidney disease as an exemplar this paper reports on one aspect of a study of interactions between professionals and parents in a network of 12 children's kidney units in Britain.MethodsWe conducted semi-structured, qualitative interviews with a convenience sample of 112 professionals (clinical-psychologists, dietitians, doctors, nurses, pharmacists, play-workers, therapists and social workers), exploring accounts of their parent-educative activity. We analysed data using framework and the concept of distributed expertise.ResultsFour themes emerged that related to the way expertise was distributed within and across teams: (i) recognizing each other's' expertise, (ii) sharing expertise within the MDT, (iii) language interpretation, and (iv) acting as brokers. Two different professional identifications were also seen to co-exist within MDTs, with participants using the term ‘we’ both as the intra-professional ‘we’ (relating to the professional identity) when describing expertise within a disciplinary group (for example: ‘As dietitians we aim to give tailored advice to optimize children's growth’), and the inter-professional ‘we’ (a ‘team-identification’), when discussing expertise within the team (for example: ‘We work as a team and make sure we're all happy with every aspect of their training before they go home’).ConclusionsThis study highlights the dual identifications implicit in ‘being professional’ in this context (to the team and to one's profession) as well as the unique role that each member of a team contributes to children's care. Our methodology and results have the potential to be transferred to teams managing other conditions.

Qualitative exploration of the experiences of renal dietitians and how they help patients with end stage kidney disease to understand the renal diet

“…Receiving dietary advice from other members of the team was considered desirable, if it reinforced or supported the key messages delivered by the renal dietitian. This is consistent with previous work on successful lifestyle change in the paediatric context, 46,47 where all of the multidisciplinary health-care team are 'singing off the same song sheet'. 46 However, little is known about the knowledge base or impact of non-dietetic nephrology staff providing dietary advice to patients.…”

How do patients and carers make sense of renal dietary advice? A qualitative exploration

“…Interestingly, the emotional experience of carers was similar to that of patients. This finding appears to be novel in the context of dietetic advice, but is similar to previous work by others investigating psychological adaptation to self-management in CKD or other chronic illness contexts (Sidell 1997;Telford et al 2006;Boer et al 2014;Swallow et al 2014;Marlow et al 2016;Pitt et al 2017). However, participants in this study also described moving on from feeling overwhelmed and frustrated, to accepting that the diet was important to maintain their health and developed strategies enabling them to apply the renal diet to their everyday lives.…”

Cuidado à família da criança com doença crônica

“…To evaluate the factors associated with the time taken to access the specialists and explore the issues experienced by parents before evaluation in a specialized service. As for the year of publication, there was one (2.57%) article published in the years 2007 43 , 2009 14 and 2010 37 , three (7.69%) articles published in the year 2016 12,40,47 , five (12.82%) in 2012 20,29,31,41,44 , six (15,38%) in 2011 21,26,34,36,39,49 seven (17,95%) in 2015 22,24,45,48 and 2014 13,23,30,32,35 and eight (20,51%) in 2013 25,33,38,42,46,50 .…”

“…Regarding the object of the studies, 11 (28.20%) articles focused on the family 12,14,19,21,31,39, , three (7,69%) on the mothers 13,40-1 , one (2.57%) on the children, parents and health professionals 15 , seven (17.95%) studies dealt with children 16,20,22,25,28,34,48 , four (10,26 %) with children and their families 17,35 , six (15,38%) studies focused on parents (mother and father) 18,24,27,38,[49][50] , two (5,12%) studies on parents and health professionals 23,26 , one (2.57%) on the child and the parents 29 , one (2.57%) on the health professionals 30 , two (5.12%) on the nursing professionals, 45,47 and, finally, one (2.57%) focused on the nursing professionals and the family. 46 A synthesis of the results found in the articles gave origin to two thematic categories: Facing the diagnosis of a chronic disease, change of habits and family reorganization; Care routines of families with children with chronic conditions.…”

“…Thus, there is an obvious financial impact on these families. [17][18][19][20][21][22][23][24][25][26][27][28][29][30][31][32] The routine of the families, especially of the mothers who play the role of main caregivers, is affected. They have to reorganize things in the face of new responsibilities and constant demands.…”