Parent-provider communication dynamics during the pediatric oncology diagnostic process in Guatemala: A qualitative study.

BACKGROUND: Effective communication is founded on bidirectional participation from families and healthcare providers. In adult medicine, bidirectional communication promotes treatment adherence and builds the family-provider relationship. However, the relationship between communication styles in pediatrics remains poorly understood, particularly in culturally diverse settings. This study aims to investigate parent-provider communication dynamics and parental involvement during diagnostic cancer communication in Guatemala. PROCEDURE: This qualitative study included 20 families of children with cancer and 10 providers at Unidad Nacional de Oncología Pediátrica in Guatemala. Psychoeducation and diagnostic conversations between parents, psychologists, and oncologists were recorded and thematically analyzed using a priori and novel codes exploring communication behaviors, parental engagement, and interpersonal dynamics. RESULTS: Participating parents had children with various diagnoses. Only 15% of fathers and 5% of mothers reported education beyond primary school. Providers spoke 68% of words during psychoeducation and 85% of words during diagnosis conversations. Providers used supportive communication behaviors providing explanations, demonstrating verbal attentiveness, and soliciting questions and non-supportive behaviors including paternalistic talk. Parental participation was considered active when they asked questions, expressed hopes or concerns, or asserted their opinions, and non-active when participation was limited to brief responses to closed-ended questions. Supportive provider communication often encouraged active participation; non-supportive communication did not. Furthermore, active parental participation prompted supportive communication from providers, while non-active participation did not. CONCLUSIONS: Our findings highlight the bidirectional nature of effective communication, establishing that provider communication styles both influence and are influenced by parental participation, and emphasizing the importance of supportive provider communication for patient-centered care.

Factors influencing caregiver decisions to use complementary and integrative therapies in pediatric oncology settings: Findings from a qualitative analysis.

PURPOSE: Complementary and integrative medicine (CIM) therapies (i.e., non-conventional Western medicine interventions) may reduce side-effects associated with pediatric oncology treatment. CIM therapies may also improve caregiver psychological and physical health that is exacerbated during pediatric cancer treatment. Despite known benefits, these therapies are not widely used within pediatric oncology populations in the United States. To guide and promote CIM use among this population, the aim of this project was to qualitatively explore factors that contribute to caregivers' decision to include CIM use in their own and child's care. METHODS: Twenty caregivers of children (ages 0.5-14 years) being treated for cancer participated in this study. Each completed a demographic form and the CIM use questionnaire. Qualitative interviews followed by a card sort task were used to assess barriers and facilitators of uptake for caregivers and their child with cancer. RESULTS: A number of predisposing (e.g., child age, beliefs) and needs factors (e.g., potential to treatment-related side-effects) provide insight into caregivers' decisions to use CIM for their child. Analyses also revealed the importance of enabling factors (e.g., resources) for caregiver use. Caregivers also reported benefiting from additional information about risk/benefit analysis of these therapies, and current research for CIM use in caregivers and children being treated for cancer. CONCLUSION: Children may benefit from individually tailored complementary and integrative medicine consultations that explore patient history and specific needs factors to improve preference concordant care and uptake. Caregivers may benefit from support that improves enabling factors associated with care (e.g., improved accessibility).

Understanding hope at diagnosis: A study among Guatemalan parents of children with cancer.

BACKGROUND: In high-income countries, hope facilitates parental coping and builds the clinical relationship between families of children with cancer and their clinicians. However, the manifestation of hope in low- and middle-income countries (LMICs) remains poorly understood. Our study explores Guatemalan parents' experiences with hope during the pediatric oncology diagnostic process and aims to identify discrete actions clinicians take to support hope. METHODS: This qualitative study utilized audio-recordings of the diagnostic process and an additional semi-structured interview for 20 families of children with cancer at Unidad Nacional de Oncología Pediátrica in Guatemala. Spanish audio-recordings were translated into English, transcribed, and coded using a priori and novel codes. Thematic content analysis using constant comparative methods explored parents' hopes and concerns. RESULTS: At diagnosis, Guatemalan parents expressed both hopes and concerns related to the entire cancer continuum. Throughout the diagnostic process, hope grew as concerns were alleviated. Clinicians supported hope by creating a supportive environment, providing information, affirming religious beliefs, and empowering parents. These strategies helped parents shift their focus from fear and uncertainty toward hope for their child's future. Parents expressed that establishing hope improved mood, promoted acceptance, and enabled them to care for themselves and their children. CONCLUSION: These results confirm the relevance of supporting hope in pediatric oncology settings in LMICs and suggest that culture informs hope-related needs. Supporting hope is critical across cultures and can be integrated into clinical conversation using the four processes identified by our results.

The Yoga Instructor Beliefs Scales Epistemic (YIBS-E) and Pedagogic (YIBS-P): Development and Initial Assessment of the Factor Structure.

Yoga is a multidimensional and heterogeneous mind-body practice led by a therapist or teacher (e.g., yoga instructor). Although they constitute an integral part of delivery, content, and curriculum, factors that influence yoga instructors' choices have yet to be explored. Using a mixed methods sequential design for development of an instrument that identifies measurable epistemic (YIBS-E) and pedagogic (YIBS-P) beliefs, the Yoga Instructor Beliefs Scale (YIBS) reports validity evidence from four distinct phases. Phase I presents qualitative findings from literature-informed semistructured interviews to give a comprehensive construct model of yoga instructor beliefs from diverse styles/ schools/lineages of yoga (nine content-specific clusters). In Phase II, focus group panels of experts evaluated construct novelty and importance of themes, resulting in a pool of potential questionnaire items. Phase III employed cognitive interviews to assess the perceived meaning and clarity of using the preliminary YIBS items. Phase IV included exploratory factor analysis and correlational analyses using 204 yoga instructor responses, suggesting a 44-item instrument with distinct epistemic (Experiential, Energetic, Systems-Based, Affectual, Mindful, and Physical) and pedagogic (Curricular Integration, Student Awareness, Accessibility, and Differentiated Instruction) factors (YIBS- E α = 0.90, YIBS-P α = 0.85). Measurable belief constructs can inform research on individual yoga instructor differences that may influence curriculum content choices and delivery. The purpose of this instrument is to enable research linking instructor beliefs to the presence of various components of a yoga program and to contextualize defining qualities of yoga programs. Long-term use of this instrument should enable in-depth analyses such as mediation or moderation of yoga instructor beliefs on intervention components/content or outcomes.

"Making it okay": professionals in high-stress environments construct their understanding of the impact of a yoga-based retreat designed to build resilience.

PURPOSE: While there is growing evidence for resilience building programmes, to date research has not explored how professionals construct understanding of programme impact. RISE (resilience, integration, self-awareness, engagement), a 5-day yoga-based retreat programme, has been linked with positive wellness outcomes. This qualitative inquiry explores participants' reflection and experience 3 months after programme completion. METHODS: Through a grounded constructivist lens, in-depth semi-structured phone interviews were conducted with 17 adult professionals in high-stress work environments who attended RISE. Initial hand-coding informed codebook development for systematic coding using directed content analysis using sensitizing structuring. RESULTS: Two integrated perceptions woven through five themes. Persistent threads of experiential learning and sense of permission provided structure for themes found. Five interrelated themes related to psychological health and workplace dynamics were (1) use of acquired behavioural skills and practices; (2) lived mindfulness; (3) resilience to stress and emotion regulation (4) self-care and self-compassion, and (5) sharing with others. CONCLUSION: Findings provide meaningful interpretation of previously reported programme efficacy by contextualizing perceived benefits within participants' constructed understanding of change. Specifically, environmental, social, and experiential considerations have suggested implications for resilience building programmes.Abbreviations: RISE (resilience, integration, self-awareness, engagement).

Racial and Ethnic Disparities in Health Outcomes Among Long-Term Survivors of Childhood Cancer: A Scoping Review.

The five-year survival rate of childhood cancer has increased substantially over the past 50 yr; however, racial/ethnic disparities in health outcomes of survival have not been systematically reviewed. This scoping review summarized health disparities between racial/ethnic minorities (specifically non-Hispanic Black and Hispanic) and non-Hispanic White childhood cancer survivors, and elucidated factors that may explain disparities in health outcomes. We used the terms "race", "ethnicity", "childhood cancer", "pediatric cancer", and "survivor" to search the title and abstract for the articles published in PubMed and Scopus from inception to February 2021. After removing duplicates, 189 articles were screened, and 23 empirical articles were included in this review study. All study populations were from North America, and the mean distribution of race/ethnicity was 6.9% for non-Hispanic Black and 4.5% for Hispanic. Health outcomes were categorized as healthcare utilization, patient-reported outcomes, chronic health conditions, and survival status. We found robust evidence of racial/ethnic disparities over four domains of health outcomes. However, health disparities were explained by clinical factors (e.g., diagnosis, treatment), demographic (e.g., age, sex), individual-level socioeconomic status (SES; e.g., educational attainment, personal income, health insurance coverage), family-level SES (e.g., family income, parent educational attainment), neighborhood-level SES (e.g., geographic location), and lifestyle health risk (e.g., cardiovascular risk) in some but not all articles. We discuss the importance of collecting comprehensive social determinants of racial/ethnic disparities inclusive of individual-level, family-level, and neighborhood-level SES. We suggest integrating these variables into healthcare systems (e.g., electronic health records), and utilizing information technology and analytics to better understand the disparity gap for racial/ethnic minorities of childhood cancer survivors. Furthermore, we suggest national and local efforts to close the gap through improving health insurance access, education and transportation aid, racial-culture-specific social learning interventions, and diversity informed training.