AXILLARY OR RECTAL TEMPERATURES IN CHILDREN?

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/24315/1/0000581.pd

A Tough Decision: Parents’ Perspective on Shared Decision-Making About Tracheostomies

Often when patients and families face the decision to pursue a tracheostomy or not, there is not a clear “right answer” as to whether this is in the child’s best interest. These decisions should be instead based on anticipated outcomes and patient/family values around those possible outcomes, and the burden of making these decisions shared between clinicians and patients/parents. Limited decision tools exist, however to support parents and clinicians facing pediatric tracheostomy decisions. This is likely because most patient- or parent-facing decision tools focus on communicating specific information about the options, risks, and outcomes, which differ widely across pediatric conditions. For many of these conditions, no population data exist to guide decision-making. Most the education around shared decision-making has targeted clinicians; relying on the assumption that clinicians will become adept at this and utilize it effectively in practice. Unfortunately, not all clinicians receive or use this training, and evidence shows that patients and families are not well engaged in shared decision-making in practice. To address this gap, we sought to develop a clinical, bedside intervention with peer parent narratives to help parents understand the shared decision making (SDM) process, their role in the decision, and other parents’ considerations in this context. We identified nine parents of eight parents who had faced a tracheostomy decision for their child and were willing to talk about their experiences on a video recording. Half of the parents had chosen tracheostomy; some children of parents making either choice had died. We included parents of diverse racial backgrounds whose children had different diagnoses. Parent interviews, along with an explanation of SDM for parents based on the literature and professional society recommendations, were edited into a 17-minute video guided by iterative feedback from parents and clinicians. This video is intended to complement individualized counseling about the tracheostomy decision and discussions of patients/families goals, values, and preferences.University of Michigan M-Cubed 3.0 Granthttp://deepblue.lib.umich.edu/bitstream/2027.42/192788/1/ToughDecisionAbstract.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/192788/4/PituchEmailCorrespondence.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/192788/5/KukoraEmailCorrespondence.pdfDescription of ToughDecisionAbstract.pdf : AbstractSEL

Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy

Abstract Background Parents who have to make tracheostomy decisions for their critically ill child may face forecasting errors and wish to learn from peer parents. We sought to develop an intervention with peer parent narratives to help parents anticipate and prepare for future challenges before making a decision. Methods To ensure that the intervention reflects parents’ needs (rather than experts’ opinions), we adapted a user-centered design (UCD) process to identify decision-critical information and refine the presentation format by interviewing parents who had tracheostomy decision making experience. Phase 1 (n = 10) presented 15 possible forecasting errors and asked participants to prioritize and justify the problematic ones. It also asked participants to comment on the draft narratives and preferred delivery mode and time of the intervention. Phase 2 (n = 9 additional parents and 1 previous parent) iteratively collected feedback over four waves of user interviews to guide revisions to the informational booklet. Results Phase 1 revealed that parents wanted information to address all forecasting errors as soon as tracheostomy becomes an option. They also highlighted diverse family situations and the importance of offering management strategies. The resulting prototype booklet contained five sections: introduction, child’s quality of life, home care, practical challenges, and resources. Feedback from Phase 2 focused on emphasizing individualized situations, personal choice, seriousness of the decision, and caregiver health as well as presenting concrete illustrations of future challenges with acknowledgement of positive outcomes and advice. We also learned that parents preferred to use the booklet with support from the care team rather than read it alone. Conclusions A UCD process enabled inclusion of parental perspectives that were initially overlooked and tailoring of the intervention to meet parental expectations. Similar UCD-based approaches may be valuable in the design of other types of patient communications (e.g., decision aids).http://deepblue.lib.umich.edu/bitstream/2027.42/173157/1/12911_2022_Article_1911.pd

James P. WilsonRISK OF MYOPATHY ASSOCIATED WITH THE USE OF STATINS AND POTENTIALLY INTERACTING MEDICATIONS: A RETROSPECTIVE ANALYSIS

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