Challenges of Families of Patients Hospitalized in the PICU: A Preplanned Secondary Analysis From the Navigate Dataset.

OBJECTIVES: To describe challenges experienced by parents of children hospitalized in the PICU during PICU admission as reported by family navigators. DESIGN: A preplanned secondary analysis of open-response data coded via inductive qualitative approach from the Navigate randomized controlled trial (RCT) dataset (ID NCT02333396). SETTING: Two university-affiliated PICUs in the Midwestern United States as part of an RCT. PATIENTS: Two hundred twenty-four parents of 190 PICU patients. INTERVENTIONS: In 2015-2017, trained family navigators assessed and addressed parent needs, offered weekly family meetings, and provided post-PICU discharge parent check-ins as part of a study investigating the effectiveness of a communication support intervention ("PICU Supports"). MEASUREMENTS AND MAIN RESULTS: We analyzed qualitative data recorded by family navigators weekly across 338 encounters. Navigators described families' "biggest challenge," "communication challenges," and ways the team could better support the family. We used an inductive qualitative coding approach and a modified member-checking exercise. The most common difficulties included home life , hospitalization , and diagnosis distress (45.2%, 29.0%, and 17.2% of families, respectively). Navigators often identified that parents had co-occurring challenges. Communication was identified as a "biggest challenge" for 8% of families. Communication challenges included lack of information, team communication , and communication quality (7.0%, 4.8%, and 4.8% of families, respectively). Suggestions for improving care included better medical communication, listening, rapport, and resources. CONCLUSIONS: This study describes families' experiences and challenges assessed throughout the PICU stay. Family navigators reported families frequently experience stressors both internal and external to the hospital environment, and communication challenges between families and providers may be additional sources of distress. Further research should develop and assess interventions aimed at improving provider-family communication and reducing stressors outside the hospitalization itself, such as home life difficulties.

Refusals of the Determination of Death by Neurologic Criteria: A Mixed Methods Study of Physician Perspectives on Refusals Cases.

OBJECTIVES: Refusals to allow examination for determination of death by neurologic criteria (DNC) challenge pediatric physicians and create distress for medical teams and families of patients suspected to meet criteria for DNC. The objective of this study was to inquire about and assess experiences with such refusals from the perspective of physicians. DESIGN: We conducted a mixed-methods survey and interview-based study to understand physicians' experiences with refusals. SETTING: An online survey was sent to pediatric intensivists and neurologists; phone interviews were conducted in a subset. PATIENTS/PARTICIPANTS: The study included 80 physician survey respondents and 12 interview physician respondents. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Refusals occur for many reasons regarding patients with both acute and progressive brain injury. The most common reasons were consistent in surveys and interviews and include "waiting on a miracle," not wanting to give up, religious objections and disbelief in brain death. Time was an important mediator in many cases. Physicians described several approaches to managing refusals, highlighting the impact on medical teams, distraction from other patients, and need for resources to support physicians. CONCLUSIONS: Refusals may have important sociodemographic associations that should be considered in managing complex cases. Physicians seek more guidance in law and policies to manage refusals.

Ethical issues involving fertility preservation for transgender youth.

PURPOSE: To investigate ethical issues associated with fertility preservation (FP) in transgender youth based on reports of patients and their parents. METHODS: Our qualitative study involved in-person interviews with 54 subjects (35 patients and 19 parents). Interviews were audio recorded, transcribed, and verified. Each subject completed a demographic questionnaire, and each patient's medical chart was reviewed for additional information. We analyzed the data using inductive thematic content analysis. RESULTS: Themes that emerged included a range of desires and ambivalence about having genetically related children, variability in understanding the potentially irreversible impact of gender affirming hormones (GAHs) on fertility, use of adoption, and the impact of age on decision-making. Subjects (patients and parents) noted barriers to FP, such as cost and insurance coverage. Several parents expressed concern that their transgender children may have future regret about not attempting FP. Both transgender youth and their parents felt FP was an important precaution. CONCLUSIONS: Our study took advantage of the richness of personal narratives to identify ongoing ethical issues associated with fertility preservation in transgender youth. Transgender youth and their parents did not fully understand the process of FP, especially regarding the effects of GAHs, had fears that FP could reactivate gender dysphoria, and noted barriers to FP, such as cost, highlighting economic disparity and lack of justice. These findings highlight ethical issues involving the adequacy of informed consent and economic injustice in access to FP despite expressed interest in the topic.

Plus ça change: Renée Fox and the Sociology of Organ Replacement Therapy.

Rereading Renée C. Fox's "A Sociological Perspective on Organ Transplantation and Hemodialysis," published in 1970, one is likely to be struck more by continuity than by change. The most pressing of the social, policy, and ethical concerns that Fox raised remain problematic fifty years later. We still struggle with scientific and clinical uncertainty, with the boundary between experimentation and therapy, and with the cost of organ replacement therapies and disparities in how they are allocated. We still have an imperfect understanding of transplant immune responses. We still debate when a potential donor "actually" dies, and we still seem to think better empirical criteria could harmonize the diverse religious, cultural, and socioeconomic values of patients, providers, third-party payers, and policy-makers. Organ transplantation was for Fox both a particular case unfolding in time and an entryway for discussing the difficult moral questions presented by many new medical technologies in a context of high demand and limited resources.

"We want to do everything": how parents represent their experiences with maternal-fetal surgery online.

OBJECTIVE: There is little available evidence on how patients make decisions regarding maternal-fetal surgery. We studied online patient narratives for insight on how pregnant women and their partners consider such decisions. STUDY DESIGN: We used Google search strings and a purposive snowball method to locate patient blogs. We analyzed blog entries using qualitative methods to identify author details, medical information, and common themes. RESULTS: We located 32 blogs of patients who describe maternal-fetal surgery consultation. Twenty-eight (88%) underwent fetal interventions. Most (91%) explicitly described consultation with maternal-fetal surgery teams; 83% of those depicted making decisions prior to formal consultation. Few expressed regret for decisions made (6%). CONCLUSIONS AND RELEVANCE: Patients openly share experiences with maternal-fetal surgery online. Women portray their decisions as made outside of formal medical processes and overwhelmingly feel these decisions were "right". As the field of maternal-fetal surgery expands, prospective evaluation of patient decision-making is needed.

Why nondocumented residents should have access to kidney transplantation: arguments for lifting the federal ban on reimbursement.

Current U.S. legislation restricts reimbursement for organ transplantation for nondocumented residents, which makes it difficult for many immigrants, including children, to access the transplants they need. In this article, we offer moral, economic, and legal reasons that nondocumented immigrants deserve the same access to kidney transplantation as do legal residents. We argue that the current reasoning for such a ban is based on unjustified fears and unsupported assumptions, which are not a solid basis for determining eligibility for lifesaving therapy for the neediest members of our society.

Dismissing the family who refuses vaccines: a study of pediatrician attitudes.

BACKGROUND: Parent refusal or deliberate delay of their child's vaccinations poses a challenge for pediatricians. Some pediatricians may choose to dismiss these families from their practice. OBJECTIVES: To describe pediatricians' responses to scenarios of vaccine refusal, identify reasons pediatricians cite for both parent refusal and family dismissal, and illustrate pediatrician attitudes about well-established vs newer recommended vaccines. DESIGN/METHODS: We conducted a nationwide survey mailed to 1004 randomly selected American Academy of Pediatrics (Elk Grove Village, Ill) members. RESULTS: Fifty-four percent faced total vaccine refusal during a 12-month period. Pediatricians cited safety concerns as a top reason for parent refusal. Thirty-nine percent said they would dismiss a family for refusing all vaccinations. Twenty-eight percent said they would dismiss a family for refusing select vaccines. Pediatrician dismissers were not significantly different from nondismissers with respect to age, sex, and number of years in practice. Pediatrician dismissers were more likely than nondismissers to view traditional vaccines (diphtheria and tetanus toxoids and acellular pertussis; inactivated poliovirus; Haemophilus influenzae type b; measles, mumps, and rubella) as "extremely important," but they were no more likely to view newer vaccines (7-valent pneumococcal conjugate, varicella-zoster virus, hepatitis B) as "extremely important." CONCLUSIONS: Pediatricians commonly face vaccine refusal that they perceive to be due to parent safety concerns. In response, many pediatricians say they would discontinue care for families refusing some or all vaccines. This willingness to dismiss refusing families is inconsistent with an apparent ambivalence about newer, yet recommended, vaccines. The practice of family dismissal needs further study to examine its actual impact on vaccination rates, access to care, and doctor-patient relations.

A Pediatrician's View.

The experiences of individuals with intersex conditions include considerable abuse at the hands of medical personnel. Despite changes in expert opinion about full disclosure of the nature of each patient's condition and recommendations to defer cosmetic surgical interventions, we do not know how much actual practice has changed over several decades. Moreover, discrepancies continue between the views of who have these conditions and medical practitioners, especially about preventing cancer and retaining gonads for the purpose of providing "natural" hormone production. We have insufficient data to resolve these different perspectives.