Allen D

Crosier J

Lambert H

Qizalbash L

Smith T

Swallow VM

Webb NJA

Williams J

Wirz L

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\u27 learning about care-delivery and monitoring care-giving. However, this parent-educative aspect of clinicians\u27 role is rarely articulated in the literature so little evidence exists to inform professionals\u27 parent-teaching interventions. Methods/Design: This ongoing study addresses this issue using a combination of quantitative and qualitative methods involving the twelve children\u27s kidney units in England, Scotland and Wales. Phase I involves a survey of multidisciplinary team members\u27 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 statistics ii) 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 study Phase 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\u27s 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\u27 homes; de-briefing interviews with participants to obtain views on selected interactions; focussed \u27verbatim\u27 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. Discussion: 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\u27 parent-educative roles, educational curricula, and health care polic

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Pan-Britain, mixed-methods study of multidisciplinary teams teaching parents to manage children\u27s long-term kidney conditions at home: Study protocol

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Pan-Britain, mixed-methods study of multidisciplinary teams teaching parents to manage children\u27s long-term kidney conditions at home: Study protocol

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