Use of composite NICU research outcomes for goals of care counselling creates ethical challenges

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/170945/1/apa16018_am.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/170945/2/apa16018.pd

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

Perspectives on Resuscitation Decisions at the Margin of Viability among Specialist Newborn Care Providers in Ghana and Ethiopia: A Qualitative Analysis

Abstract Background In high income countries, guidelines exist recommending gestational age thresholds for offering and obligating neonatal resuscitation for extremely preterm infants. In low- and middle- income countries, this approach may be impractical due to limited/inconsistent resource availability and challenges in gestational dating. Scant literature exists on how clinicians in these settings conceptualize viability or make resuscitation decisions for premature infants. Methods Qualitative interviews of interprofessional neonatal clinicians were conducted in Kumasi, Ghana, at Komfo Anokye Teaching Hospital and Suntreso Government Hospital, and in Addis Ababa, Ethiopia, at St. Paul’s Hospital Millennium Medical College. Transcribed interviews were coded through the constant comparative method. Results Three discrete major themes were identified. The principal theme was a respect for all life, regardless of the likelihood for survival. This sense of duty arose from a duty to God, a duty to the patient, and a duty intrinsic to one’s role as a medical provider. The duty to resuscitate was balanced by the second major theme, an acceptance of futility for many premature infants. Lack of resources, inappropriate staffing, and historically high local neonatal mortality rates were often described. The third theme was a desire to meet global standards of newborn care, including having resources to adopt the 22–25-week thresholds used in high income countries and being able to consistently provide life-saving measures to premature infants. Conclusions Neonatal clinicians in Ghana and Ethiopia described respect for all life and desire to meet global standards of newborn care, balanced with an awareness of futility based on local resource limitations. In both countries, clinicians highlighted how wide variations in regional survival outcomes limited their ability to rely on structured resuscitation guidelines based on gestational age and/or birthweight.http://deepblue.lib.umich.edu/bitstream/2027.42/173646/1/12887_2022_Article_3146.pd