Background: Adolescent and young adult advance care planning is beneficial in improving communication between patients, surrogates, and clinicians. The influences on treatment decisions among adolescents and young adults are underexplored in the literature. Aim: The aim of this study was to explore and better understand the influences on decision-making for adolescent and young adult bone marrow transplant patients about future medical care. Design: Clinical case studies and qualitative inductive content analysis of treatment decisions made during the Respecting Choices® Next Steps Pediatric Advance Care Planning conversation as a component of the Family-Centered Advance Care Planning Intervention. Settings/participants: A total of 10 adolescent and young adult patients (aged 14–27 years) undergoing bone marrow transplant at an academic Midwest children’s hospital were involved in the study. Results: Influences on participants’ decisions were consideration for family, quality of life, and awareness of self. Desire to avoid suffering and maintain an acceptable quality of life was often in competition with participant’s concern over the perceived negative impact of discontinuing treatment on their families. Conclusion: This study highlights that adolescent and young adult bone marrow transplant patients are capable of meaningful deliberation about future treatment decisions. Influences on decision-making should be incorporated into advance care planning conversations to facilitate communication between patients and their surrogates. Longitudinal research is needed to explore these influences throughout the trajectory of illness.

Highlights Nurses are positioned to respond to the epidemic of racism in our healthcare system and communities. This call to action highlights ways that nurses can adopt antiracist practices. Actions include recognition of personal biases, confronting systemic inequities, policy and political action, new approaches to research, and using antiracist pedagogy.

Purpose: Well-child care is the foundation of pediatric health promotion and disease prevention. Primary care quality is lower for low-income and African American children compared to white children, and social determinants have an increasingly acknowledged impact on child health. Ensuring that high-quality well-child care fulfills its potential to mitigate the negative effects of social determinants on African American children is imperative. This study provides an understanding of urban, low-income, African American well-child care experiences and expectations. Design and methods: A qualitative, focus group method was used. A purposive, volunteer sample of low-income, African American parents with children birth to age five was recruited from St. Louis and Milwaukee. Focus groups were held in convenient, community sites. Data was audio-digitally recorded. Transcribed data were coded and analyzed through inductive content analysis. Results: Thirty-five caregivers, 86% females, participated in four focus groups. Categories (and sub-categories) identified include: Community factors (We want better schools, It's getting more rough where I live); Sources of parenting advice (Google it, Call your parent, Older remedies); System challenges (Cost, Frequent new faces, Politics); Challenges with providers (Couldn't help me, Missed something important, Treated differently, Are you really listening?); Anticipatory guidance (Breastfeeding, Discipline, Vaccines, Development); and What parents desire (Know them, trust). Conclusions: This study reveals the contexts that give rise to health care disparities and provides insight into parent's healthcare behaviors. Practice implications: Results offer providers guidance in providing well-child care for this population to improve pediatric care quality and child health.

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Qualitative data collection offers a unique opportunity to partner with research participants. Lessons learned through the process of data collection with urban, low-income, African American parents are reflective of the research findings themselves. Carefully designed research studies can remove barriers and empower participants, broadening the reach and results. Recruitment within communities develops trust, and focus groups offer a more empowering method for interviewing marginalized populations. Parents desire to have solid partnerships with their children’s health-care providers so that with their providers’ guidance, their children can flourish. The process of implementing the research itself, and not just the results, reveals strategies for improving partnership between parents and health-care providers.