Improving equity in diabetes technology use: Voices of youth and their parents.

AIMS: There are marked inequities in clinical outcomes and rates of diabetes technology use among youth with type 1 diabetes (T1D). The quantitative data from our mixed methods cohort study identified significant improvements in glycaemia and quality of life in participants. We aimed to use qualitative methods to provide further insight into our quantitative findings in the setting of underlying health disparities. METHODS: Fifteen publicly insured, insulin pump-naïve non-Hispanic Black youth aged 6-21 years with T1D and baseline haemoglobin A1c (HbA1c) ≥86 mmol/mol (10%) and their parents participated in a mixed methods cohort study. Semi-structured interviews were conducted separately with parents and youth after completion of 6 months of HCL use. Three topic areas were explored: (1) Experience using HCL, (2) barriers to HCL and (3) facilitators to accessing HCL. Semantic content analysis and consensus coding involving two team members were used to generate themes. Thematic saturation was achieved. RESULTS: Youth (Medianage 14.9 years, 67% female) and parents (92% female) were interviewed. Youth and their parents reported that access to HCL provides a new outlook on living with T1D, although managing T1D is still hard. They felt that diabetes technology is most helpful for those struggling with management. Participants experienced barriers to access including misconceptions of HCL systems, clinician bias and systemic racism. They suggested these barriers can be overcome by offering diabetes technology education for all people with T1D, increasing awareness of HCL in the community and providing resources to overcome barriers created by social determinants of health. CONCLUSIONS: The voices of historically minoritised youth with suboptimal T1D control and their parents provide important, previously unreported experiences and perspectives on barriers and facilitators to using HCL that will shape interventions to improve equity in access to diabetes technology.

Being a "Good Parent" to a NICU Infant With a Major Congenital Anomaly.

BACKGROUND: In the United States, up to one-third of infants with a congenital anomaly require neonatal intensive care unit (NICU) hospitalization. Parents of these infants may have different decision-making priorities, which may be influenced by the timing of the infant's diagnosis. PURPOSE: (1) To compare the ranked importance of decision-making beliefs for parents of infants who received a prenatal versus postnatal congenital diagnosis and (2) explore how parents describe their decision-making beliefs. METHODS: A cross-sectional, sequential mixed-methods pilot design was applied to collect quantitative data using the Good Parent Ranking Exercise and further explore parents' decision-making beliefs through qualitative interviews. Maximum difference scaling/hierarchical Bayes estimation and content analysis were used to analyze the quantitative and qualitative data, respectively. RESULTS: Forty mothers completed the Good Parent Ranking Exercise and 20 mothers completed qualitative interviews. Four of the top 5 ranked parenting beliefs were shared by mothers in the prenatal and postnatal groups. Mothers in the postnatal group ranked "focusing on my child's quality of life" higher. Qualitative interviews revealed that previously identified decision-making beliefs were consistent in this NICU parent population, with 1 additional belief identified. Mixed-methods analysis revealed high concordance between the prenatal and postnatal groups. IMPLICATIONS FOR PRACTICE: NICU nurses need to know that decision-making beliefs for parents who receive a prenatal versus postnatal congenital diagnosis, while largely similar, may have differences. IMPLICATIONS FOR RESEARCH: Future research should explore decision-making beliefs in demographically diverse parent groups (ie, fathers, partnered vs nonpartnered couples) and effective strategies for promoting NICU parents' decision-making beliefs.

Child and caregiver voices about inpatient care: What do they report as positive and as needing improvement?

PURPOSE: In pediatric healthcare, patient satisfaction queries exclude children and solicit quantitative ratings from caregivers. We sought satisfaction perspectives from hospitalized children 7 to 17 years and their caregivers by qualitatively analyzing interview responses. DESIGN AND METHODS: English and Spanish-speaking children and their parents on five inpatient units completed two open-ended questions about their satisfaction at hospital discharge (T1, face to face) and 7 to 10 days later (T2, telephone). The questions asked about what was good and what could be better at the hospital. Responses were analyzed using descriptive semantic content analysis and consensus coding methods. RESULTS: Patients' mean age was 11.9 years (SD = 3.17); 51% were male. At T1, 362 patients offered 833 responses; 600 parents offered 1496 responses. At T2, 252 patients offered 552 responses; 488 parents offered 1290 responses. At T1 and T2, the most frequent patient response to what was good was 'Staff took good care of me' and for caregivers was 'Staff behaving professionally'. At T1, the most frequent patient response about what could be better was 'more activities for kids', and at T2, 'Nothing' and 'More food options and better food quality'; for caregivers at T1, 'Nothing' and 'Not liking the physical space', and at T2, 'Nothing', and 'More communication and professionalism from hospital staff'. CONCLUSIONS: Pediatric patients and their caregivers are willing and able to offer perspectives about satisfaction with care, and suggestions for improvement before discharge. PRACTICE IMPLICATIONS: Pediatric patients and their caregivers' perspectives about care yield actionable recommendations for hospital systems.

"At Least I Can Push this Morphine": PICU Nurses' Approaches to Suffering Among Dying Children.

CONTEXT: Parents of children who die in the pediatric intensive care unit (PICU) carry memories of their child's suffering throughout a lifelong grieving experience. Given their prolonged time at the bedside, PICU nurses are poised to attend to dying children's suffering. OBJECTIVES: We aimed to explore how PICU nurses identify, assess, and attend to EOL suffering. METHODS: Interpretive descriptive qualitative study with thematic analysis of virtual focus groups from a geographically diverse sample of PICU nurses. RESULTS: Nurses participated in five focus groups (N = 19). Most identified as White (89%) females (95%) with a range of 1-24 years of PICU experience and involvement in >10 EOL care cases (89%). Nurses described approaches to suffering within five themes: 1) Identifying and easing perceptible elements; 2) Recognizing and responding to subtleties moment-to-moment; 3) Acclimating to family interdependence; 4) Synchronizing nurse in-the-room insight with systemic complexity; and 5) Accounting for ambiguity. Nurses detailed elements of suffering they could "fix" with straightforward, external interventions (e.g., pain medication). More complex tasks like optimizing care within familial and interprofessional team relationships while navigating psychosocial responses from children and families challenged nurses. Nurses attempted to minimize EOL suffering amidst ambiguity and complexity using internal processes including managing the environment and titrating moment-to-moment care. CONCLUSIONS: While physical suffering may be remedied with direct nursing care, holistically attending to EOL suffering in the PICU requires both bolstering external processes and strengthening PICU nurses' internal resources. Improving psychosocial training and optimizing interprofessional care systems could better support dying children and their families.

Development and Validation of a Ready-to-Talk Measure for Use in Adolescents and Young Adults Living With Advanced Cancer.

BACKGROUND: In the era of evolving and emerging therapies, adolescents and young adults (AYAs) living with advanced cancer experience a high degree of uncertainty, making palliative care and end-of-life (PCEOL) discussions difficult. Clinical conversations determine values/preferences that guide shared decision-making and goals of treatment, including end-of-life care when cancer progresses. Initiating PCEOL conversations is challenging for clinicians. OBJECTIVE: This study describes the development and validation of an instrument that measures AYA readiness to engage in PCEOL clinical conversations. METHODS: A Ready-to-Talk Measure (R-T-M) was developed, guided by the revised conceptual model of readiness across 3 domains (awareness, acceptance, and willingness). Content experts evaluated validity, and 13 AYAs with advanced cancer participated in cognitive interviews. Acceptability (item applicability, clarity, interpretation, sensitivity, missingness) and experiences (benefit, burden) were analyzed. RESULTS: The scale content validity index was ≥0.90 for each domain. Forty-two of the 55 R-T-M items were acceptable without any change. Three items were deleted. Ten items were modified, and 3 were added. Adolescents and young adults wanted more items about friends/siblings and about AYA unique qualities for clinicians to know them better. Adolescents and young adults acknowledged benefit through talking about difficult, relevant topics. CONCLUSION: Ready-to-Talk Measure validity was strengthened by deleting or modifying unclear or misinterpreted items and by adding items. Next steps include psychometric analysis to determine reliability/dimensionality and stakeholder input to make the R-T-M a clinically useful tool. IMPLICATIONS FOR PRACTICE: Ready-to-Talk Measure assessment of readiness to engage in PCEOL conversations while identifying unique preferences of AYAs holds promise for facilitating ongoing discussions.

A digital, coach-assisted intervention to address the psychosocial needs of young adult cancer survivors: Randomized controlled trial protocol and intervention adaptation process.

BACKGROUND: Given the increasing number of young adult cancer survivors and the impacts of cancer on various life domains, interventions addressing the psychosocial needs of young adult survivors are crucial. However, such intervention research is limited, and the existing literature has often: 1) overlooked young adult survivors' psychosocial needs; 2) targeted depression, anxiety, or fear of recurrence - rather than positive outcomes like well-being; and 3) failed to consider scalable approaches, like digital health. METHODS: This paper documents the development and refinement of an 8-week digital, coach-assisted intervention targeting hope among young adult cancer survivors (ages 18-39, within 3 years of treatment completion) and presents the protocol of the 2-arm RCT (comparing intervention vs. attention control). The intervention builds upon a 2017-2018 pilot trial (n = 56); intervention refinements were based on subsequent semi-structured interviews among young adult survivors (n = 23). RESULTS: The pending trial design involves an increased sample size (n = 150) to increase power and diversified recruitment efforts (i.e., clinic-based, social media, community-based organizations, etc.) to facilitate intervention reach, accessibility, and scalability. The intervention was enhanced by integrating highly relevant theoretical and therapeutic frameworks, specifically the concept of hope and Acceptance and Commitment Therapy, as well as updating intervention delivery technology. Intervention outcomes include feasibility and acceptability at end-of-treatment and preliminary efficacy on hope (primary outcome) and quality of life measures (secondary outcomes) at end-of-treatment and 16-week follow-up. CONCLUSIONS: This paper may facilitate discussion regarding approaches for addressing the significant psychosocial challenges faced by young adult survivors and catalyze dissemination of trial results. TRIAL REGISTRATION: NCT05905250.

Disparities in Racial, Ethnic, and Payer Groups for Pediatric Safety Events in US Hospitals.

BACKGROUND AND OBJECTIVES: Health care disparities are pervasive, but little is known about disparities in pediatric safety. We analyzed a national sample of hospitalizations to identify disparities in safety events. METHODS: In this population-based, retrospective cohort study of the 2019 Kids' Inpatient Database, independent variables were race, ethnicity, and payer. Outcomes were Agency for Healthcare Research and Quality pediatric safety indicators (PDIs). Risk-adjusted odds ratios were calculated using white and private payer reference groups. Differences by payer were evaluated by stratifying race and ethnicity. RESULTS: Race and ethnicity of the 5 243 750 discharged patients were white, 46%; Hispanic, 19%; Black, 15%; missing, 8%; other race/multiracial, 7%, Asian American/Pacific Islander, 5%; and Native American, 1%. PDI rates (per 10 000 discharges) were 331.4 for neonatal blood stream infection, 267.5 for postoperative respiratory failure, 114.9 for postoperative sepsis, 29.5 for postoperative hemorrhage/hematoma, 5.6 for central-line blood stream infection, 3.5 for accidental puncture/laceration, and 0.7 for iatrogenic pneumothorax. Compared with white patients, Black and Hispanic patients had significantly greater odds in 5 of 7 PDIs; the largest disparities occurred in postoperative sepsis (adjusted odds ratio, 1.55 [1.38-1.73]) for Black patients and postoperative respiratory failure (adjusted odds ratio, 1.34 [1.21-1.49]) for Hispanic patients. Compared with privately insured patients, Medicaid-covered patients had significantly greater odds in 4 of 7 PDIs; the largest disparity occurred in postoperative sepsis (adjusted odds ratios, 1.45 [1.33-1.59]). Stratified analyses demonstrated persistent disparities by race and ethnicity, even among privately insured children. CONCLUSIONS: Disparities in safety events were identified for Black and Hispanic children, indicating a need for targeted interventions to improve patient safety in the hospital.

Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data Repository.

Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it clear that qualitative studies are not exempt from this data sharing requirement. Recognizing this trend, the Palliative Care Research Cooperative Group (PCRC) realized the value of creating a de-identified qualitative data repository to complement its existing de-identified quantitative data repository. The PCRC Data Informatics and Statistics Core leadership partnered with the Qualitative Data Repository (QDR) to establish the first serious illness and palliative care qualitative data repository in the U.S. We describe the processes used to develop this repository, called the PCRC-QDR, as well as our outreach and education among the palliative care researcher community, which led to the first ten projects to share the data in the new repository. Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. We also describe how PCRC was able to leverage its existing community to recruit and guide early depositors and outline lessons learned in evaluating the experience. This work advances the establishment of best practices in qualitative data sharing.

The Impact of Demographics on Child and Parent Ratings of Satisfaction with Hospital Care.

Introduction: Patient satisfaction ratings differ between minority and nonminority respondents in studies of hospitalized adults, but little is known about such differences in pediatrics. Our goal was to determine if patient satisfaction ratings completed by hospitalized children and their parents at the point of discharge differed by race/ethnicity, language, child gender, and age. Methods: We used a mixed-methods design. English and Spanish-speaking families from 5 inpatient units at 1 pediatric hospital completed ratings, face-to-face, before scheduled hospital discharge (T1), and again by telephone after discharge (T2). Participating children and their parents completed an 8-item satisfaction survey, and parents additionally completed 7 discharge readiness items. Results: The refusal rate was 10.7%, with 600 families enrolled; non-white families represented 66% of both study refusals and completions. The proportion of racial/ethnic groups in our study exceeded those in our standard survey sample. There were no significant differences in satisfaction ratings between non-white and white families or by child gender, age, or language. Conclusions: The lack of rating differences by demographic characteristics, the low refusal and attrition rates, and a more racially/ethnically representative sample of both child and parent perspectives indicate this approach to measuring satisfaction is acceptable and feasible to demographically diverse families.

Adolescents' understanding of chemotherapy-related adverse events: a concept elicitation study / Compreensão dos adolescentes sobre eventos adversos relacionados à quimioterapia: um estudo de elicitação de conceitos / La comprensión de los adolescentes de los efectos adversos relacionados con la quimioterapia: un estudio de elicitación de conceptos

Abstract Objective: to document adolescents' understanding of chemotherapy-related core adverse events from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events and thus begin the validation process of this tool's items with Brazilian adolescents. Method: this is a prospective, qualitative study of concept elicitation. The participants were 17 adolescents aged 13-18 years and undergoing chemotherapy in three hospitals in São Paulo - SP, Brazil. Cognitive interviews were conducted with questions based on chemotherapy-related adverse events. Data were analyzed for responsiveness and missingness. Results: adolescents could and were willing to provide descriptive information about their chemotherapy adverse events, including physical and emotional events. Some participants suggested alternative terms to name the adverse events and some used more complex terms, but most were satisfied with the primary terms used by the researchers. Conclusion: this study represents the first steps towards understanding how adolescent cancer patients identify, name, and describe these events by cognitive interviewing to help design future assessment instruments focused on this age group.

Resumo Objetivo: documentar a compreensão dos adolescentes sobre os principais eventos adversos relacionados à quimioterapia a partir da versão Pediátrica dos Desfechos Relatados pelo Paciente (Patient-Reported Outcomes) dos Critérios de Terminologia Comum para Eventos Adversos (Common Terminology Criteria for Adverse Events), e assim iniciar o processo de validação dos itens desta ferramenta com adolescentes brasileiros. Método: trata-se de um estudo prospectivo, qualitativo, de elicitação de conceitos. Participaram do estudo 17 adolescentes de 13 a 18 anos, submetidos à quimioterapia em três hospitais da cidade de São Paulo-SP, Brasil. Foram realizadas entrevistas cognitivas com perguntas baseadas em eventos adversos relacionados à quimioterapia. Os dados foram analisados quanto à responsividade e ausência de resposta. Resultados: os adolescentes puderam e estavam dispostos a fornecer informações descritivas sobre seus eventos adversos quimioterápicos, incluindo eventos físicos e emocionais. Alguns participantes sugeriram nomes alternativos para os eventos adversos e alguns usaram termos mais complexos, mas a maioria ficou satisfeita com aqueles utilizados pelos pesquisadores. Conclusão: este estudo representa os primeiros passos para entender como os adolescentes com câncer identificam, nomeiam e descrevem esses eventos por meio de entrevistas cognitivas para ajudar a criar futuros instrumentos de avaliação focados nessa faixa etária.

Resumen Objetivo: documentar la comprensión de los adolescentes de los principales eventos adversos relacionados con la quimioterapia a partir de la versión de los Criterios Terminológicos Comunes para Eventos Adversos reportados por los pacientes pediátricos y así iniciar el proceso de validación de los ítems de esta herramienta con adolescentes brasileños. Método: este es un estudio prospectivo y cualitativo de elicitación de conceptos. Los participantes fueron 17 adolescentes de entre 13 y 18 años de edad que recibían quimioterapia en tres hospitales de São Paulo-SP, Brasil. Se realizaron entrevistas cognitivas con preguntas basadas en eventos adversos relacionados con la quimioterapia. Los datos se analizaron en función de la presencia y ausencia de respuesta. Resultados: los adolescentes podían y estaban dispuestos a proporcionar información descriptiva sobre los efectos adversos de la quimioterapia, incluidos los físicos y emocionales. Algunos participantes sugirieron términos alternativos para denominar los eventos adversos y otros utilizaron términos más complejos, pero la mayoría se mostró satisfecha con los términos principales utilizados por los investigadores. Conclusión: este estudio representa los primeros pasos hacia la comprensión de cómo los pacientes adolescentes con cáncer identifican, nombran y describen estos eventos mediante entrevistas cognitivas para ayudar a diseñar futuros instrumentos de evaluación centrados en este grupo de edad.