Pan-Britain, mixed-methods study of multidisciplinary teams teaching parents to manage children's long-term kidney conditions at home: Study protocol

Abstract

BackgroundCare of children and young people (children) with long-term kidney conditions is usually managed by multidisciplinary teams. Published guidance recommends that whenever possible children with long-term conditions remain at home, meaning parents may be responsible for performing the majority of clinical care-giving. Multidisciplinary team members, therefore, spend considerable time promoting parents' learning about care-delivery and monitoring care-giving. However, this parent-educative aspect of clinicians' role is rarely articulated in the literature so little evidence exists to inform professionals' parent-teaching interventions.Methods/DesignThis ongoing study addresses this issue using a combination of quantitative and qualitative methods involving the twelve children's kidney units in England, Scotland and Wales. Phase I involves a survey of multidisciplinary team members' parent-teaching interventions using:i) A telephone-administered questionnaire to determine: the numbers of professionals from different disciplines in each team, the information/skills individual professionals relay to parents and the teaching strategies/interventions they use. Data will be managed using SPSS to produce descriptive statisticsii) Digitally-recorded, qualitative group or individual interviews with multidisciplinary team members to explore their accounts of the parent-teaching component of their role. Interviews will be transcribed anonymously and analysed using Framework Technique. Sampling criteria will be derived from analysis to identify one/two unit(s) for subsequent in-depth studyPhase II involves six prospective, ethnographic case-studies of professional-parent interactions during parent-teaching encounters. Parents of six children with a long-term kidney condition will be purposively sampled according to their child's age, diagnosis, ethnicity and the clinical care-giving required; snowball sampling will identify the professionals involved in each case-study. Participants will provide signed consent; data gathering will involve a combination of: minimally-obtrusive observations in the clinical setting and families' homes; de-briefing interviews with participants to obtain views on selected interactions; focussed 'verbatim' field-notes, and case-note reviews. Data gathering will focus on communication between parents and professionals as parents learn care-giving skills and knowledge. Interviews will be digitally recorded and transcribed anonymously.DiscussionThis study involves an iterative-inductive approach and will provide a unique, detailed insight into the social context in which professionals teach and parents learn; it will inform professionals' parent-educative roles, educational curricula, and health care policy

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

“…In summary, the way professionals share clinical expertise with parents is not currently well understood so research is needed which provides a better understanding of professionals' views on the way they share discipline-specific clinical expertise with parents. The data reported here address this gap in line with our published protocol (Swallow et al 2012).…”

Parents' experiences of living with a child with a long‐term condition: a rapid structured review of the literature

“…Although effective communication is a core professional skill and a pre‐request for engaging effectively with patients, professionals may not be equipped to meet the learning, information and support needs of parents . Research exploring ways to support the learning and information needs of expert parents has potential to assist health professionals develop interventions and strategies to meet parents' needs as the care manager of their child's long‐term condition.…”

Primary Care Physicians' Perceived Barriers and Facilitators to Conservative Care for Older Adults with Chronic Kidney Disease: Design of a Mixed Methods Study

“…The qualitative and quantitative phases are assigned equal priority and the two phases will be integrated sequentially (i.e., the quantitative phase will build on the qualitative phase). A study in the field of nephrology using a similar type of design has been previously reported [ 7 ]. Ethical approval of this mixed methods study has been obtained from the Conjoint Health Research Ethics Board at the University of Calgary.…”