How do Clinicians View the Process of Shared Decision-Making with Parents Facing Extremely Early Deliveries? Results from an Online Survey

Objective The objective of this study was to better understand how neonatology (Neo) and maternal–fetal medicine (MFM) physicians approach the process of shared decision-making (SDM) with parents facing extremely premature (<25 weeks estimated gestational age) delivery during antenatal counseling. Study Design Attending physicians at U.S. centers with both Neo and MFM fellowships were invited to answer an original online survey about antenatal counseling for extremely early newborns. Preferences for conveying information are reported elsewhere. Here, we report clinicians' self-assessments of their ability to engage in deliberations and decision-making and perceptions of what is important to parents in the SDM process. Multivariable logistic regression analyzed respondents' views with respect to individual characteristics, such as specialty, gender, and years of clinical experience. Results In total, 74 MFMs and 167 Neos representing 94% of the 81 centers surveyed responded. Neos versus MFMs reported repeat visits with parents less often (<0.001) and agreed that parents were more likely to have made delivery room decisions before they counseled them less often (p < 0.001). Respondents reported regularly achieving most goals of SDM, with the exception of providing spiritual support. Most respondents reported that spiritual and religious views, risk to an infant's survival, and the infant's quality of life were important to parental decision-making, while a physician's own personal choice and family political views were reported as less important. While many barriers to SDM exist, respondents rated language barriers and family views that differ from those of a provider as the most difficult barriers to overcome. Conclusion This study provides insights into how consultants from different specialties and demographic groups facilitate SDM, thereby informing future efforts for improving counseling and engaging in SDM with parents facing extremely early deliveries and supporting evidence-based training for these complex communication skills. Key Points

Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions

Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.

Location of end-of-life care of children with cancer: a systematic review of parent experiences

Objective: To synthesise existing qualitative research exploring the experiences of parents caring for children with cancer during the end-of-life phase, and the factors that influence parental decision making when choosing the location of end-of-life care and death for their child. Results: This review included 15 studies involving 460 parents of 333 children and adolescents who died from progressive cancer. Where reported, the majority (58%) of children died at home or in a hospital (39%), with only a small fraction dying in a hospice. Factors impacting decision-making for location of care included the quality of communication and the quality of care available. Themes related to choosing home for end-of-life care and death included: honouring the child’s wishes, familiarity of home, and parents’ desire to be their child’s primary carer. Preference for location of death in hospital included trust in hospital staff, practical logistics and the safety of the hospital environment.

Saudi Parents' Knowledge and Attitude towards Pediatric Organ Donation in Al-Riyadh, Kingdom of Saudi Arabia

Background: Organ donation is a life-saving process of removing an organ or tissue surgically from one person (the organ donor) and placing it into another person (the recipient). As well as The demand for organ donation is increasing over time Thus, understanding the attitudes and beliefs associated with parental decision making improve the rate of transplantation. Aims: To Evaluate the perception of Saudi parents towards pediatric organ donation, and to assess the role of cultural and religious beliefs in the parental decision-making regarding organ donation, and to discover the misconceptions leading to the refusal of organ donation. Methods: A cross-sectional study was conducted in Riyadh region from 1 July 2020 to 31 August 2020 among all Saudi parents aged 18-60 years in Riyadh at the kingdom of Saudi Arabia via an online questionnaire, the responses were Statistically analysis using R v 3.6.3. The mean ±standard deviation was used to summarize the distribution of continuous variables. Chi-square test of independence was used to assess the association between categorical variables. Linear regression was used to assess factors associated with knowledge regarding organ donation. Results: Among 588, the majority of responses, female 91.5%, showed that better education was associated with knowing about organ donation in children, with 60.7% of respondents who completed university education reporting so compared to 49.6% of those who completed high school education or more minor. Socio-economic status showed a statistically significant association with knowledge score (B = 0.36, P < 0.05). Moreover, higher education level showed a statistically significant association with accepting organ donation from one’s child (OR = 1.77, P = 0.05), in contrast to age, gender, and the number of children were not associated with organ donation acceptance. Respondents who did not think organ donation was permissible in Islam were less likely to accept organ donation than respondents who believed it was permissible (OR = 0.05, P < 0.001). More than half of the respondents heard about organ donation for children after death. At the same time, less than half of the respondents knew the correct definition for brain death. Only 34.7% of respondents knew that organ donation is allowed starting from birth. Most respondents knew about the possible organs to donate except for the lung. In addition, 45% of the respondents are either agreed or strongly agreed to discuss organ donation with their partner if they faced child loss. Conclusion: This study found a lack of knowledge regarding organ donation among parents and impressively shows that the parents are willing to discuss organ donation if they face child loss. There was an urgent need to introduce campaigns focussing on awareness of child organ donation, including the protocol used in Saudi Arabia, especially among low socioeconomic status and who do not know Islam permission.

Socioeconomic status and parent perceptions about the costs and benefits of youth sport

Objectives Describe what costs and benefits parents across the socioeconomic spectrum weight most heavily when making decisions about sport participation for their children. Method Cross-sectional survey of a nationally representative online panel of parents of children between the ages of 5 and 18 (n = 1025, 52% response rate). Parents rated the importance of a series of potential costs and benefits of youth sport and these responses were compared across tertiles of per capita family income. We first examined the association between family income tertiles and cost and benefit variables. Model-based cluster analysis was then used to identity homogeneous groups of responses to costs and benefits. Results In all income tertiles, the top two benefits of sport were the same: having fun and being physically active. Sport as a means of keeping children out of trouble was very important for 64% of low-income parents as compared to 40% of high-income parents. Obtaining a college athletic scholarship was very important for 26% of low-income parents, as compared to 8% of high-income parents. Relative rankings of potential costs were similar by income tertile, with risk of concussion and other injury and the impact of sport on schoolwork prioritized across tertiles. Conclusions Parents prioritized fun and fitness in sport, and were concerned about injury and the impact of sport on academics. Lower income parents were the most likely to view keeping their child out of trouble, and the potential for a college athletics scholarship, as benefits of sport. Efforts to support parental decision making should be grounded in an understanding that family preferences are contextually constrained. While all parents should be appropriately informed about the potential costs and benefits they are weighting in their sports-related decision making, such family-focused efforts should be balanced with the recognition that structural change is needed to address income-related concerns about sport participation.

“A Personal Decision”: A Mixed-Methods Study of Parents’ Opposition to School-Based Public Health Initiatives in the Wake of COVID-19

Schools play a key role in promoting public health. Yet, these initiatives also face opposition from parents, and such opposition may be increasing in the wake of misinformation campaigns and efforts to politicize public health. During the COVID-19 pandemic, for example, parent opposition helped derail schools’ efforts to require masks and vaccines. Thus, it is important for educators and policymakers to understand the extent, source, and nature of parents’ opposition to new school-based public health initiatives. Combining data from a national survey of US parents (N=1,945) with a content analysis of a Facebook group for parents in one politically divided school community, we found that, at the peak of the pandemic (December 2020), nearly one third of parents opposed each of our two focal initiatives. We also found that parents based their opposition to (or support for) school-based public health initiatives on individualistic calculations about the costs and benefits those initiatives would impose on their individual child. Those calculations, however, did not always follow the same logic. In light of those varied logics, vaccine opposition was most common among Republicans, mothers (especially white mothers), parents without college degrees, and Black parents. Meanwhile, opposition to mask mandates was disproportionately common among Republicans, fathers, and college-educated parents (especially among white parents), as well as among those who had COVID-19. We conclude that individualistic approaches to parental decision-making are preventing communities from enacting and maintaining school-based public health initiatives and undermining health and education as public goods.