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

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 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'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. 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' parent-educative roles, educational curricula, and health care polic

End-of-life care in the intensive care unit: the perceived barriers, supports, and changes needed

Objective. To identify perceived barriers, supports and changes needed to improve end-of-life care (EOLC) in the intensive care unit (ICU) and to compare physicians’ perceptions with those of nurses. Methods. We conducted a survey of critical care physicians and nurses in an academic medical center via a 3-item survey with open-ended statements regarding the strongest barriers, supports and changes needed to improve EOLC in ICU. Results. Thirty-four percent of all respondents identified physicians as the biggest barrier and thirty-three percent recognized nursing staff as the strongest support towards optimal EOLC. Improved communication was identified by 30% of respondents as the change most needed to improve EOLC. No significant differences between physicians and nurses were observed. Conclusions. Critical care physicians and nurses identified similar barriers, supports and the changes most needed to improve EOLC in the ICU. Recognition of physicians as the strongest barrier, and communication as the change most needed indicate areas for improvement. The finding of nurses as the strongest support for good EOLC provides the opportunity to strengthen their role in the care of the dying patient. Further study of these findings will help develop strategies to improve EOLC in the ICU