title: Pan-Britain, mixed-methods study of multidisciplinary teams teaching parents to manage children's long-term kidney conditions at home: study protocol.
abstract: BACKGROUND
  Care 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
  This 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.
  
  
  CONCLUSIONS
  This 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.
authors.affiliation: School of Nursing, Midwifery and Social Work, University of Manchester, Oxford Road, Manchester, M13 9Pl, UK. veronica.swallow@manchester.ac.uk
authors.forename: Veronica M
authors.initials: VM
authors.lastname: Swallow
authors.forename: Davina
authors.initials: D
authors.lastname: Allen
authors.forename: Julian
authors.initials: J
authors.lastname: Williams
authors.forename: Trish
authors.initials: T
authors.lastname: Smith
authors.forename: Jean
authors.initials: J
authors.lastname: Crosier
authors.forename: Heather
authors.initials: H
authors.lastname: Lambert
authors.forename: Leila
authors.initials: L
authors.lastname: Qizalbash
authors.forename: Lucy
authors.initials: L
authors.lastname: Wirz
authors.forename: Nicholas J A
authors.initials: NJ
authors.lastname: Webb
mesh_terms: D000293:Adolescent; D017028:Caregivers / Q000193:education* / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D005260:Female; D006701:Home Nursing / Q000193:education / Q000379:methods* / Q000523:psychology; D006801:Humans; D007223:Infant; D007674:Kidney Diseases / Q000628:therapy*; D008134:Long-Term Care / Q000379:methods*; D008297:Male; D010290:Parents / Q000193:education* / Q000523:psychology; D010348:Patient Care Team; D011368:Professional-Family Relations; D011446:Prospective Studies; D036301:Qualitative Research; D006113:United Kingdom