Communication Priorities and Experiences of Caregivers of Children With Cancer in Guatemala

PURPOSE Although > 90% of children with cancer live in low- and middle-income countries, little is known about communication priorities and experiences of families in these settings. We examined communication priorities and the quality of information exchange for Guatemalan caregivers of children with cancer during diagnostic communication. METHODS A cross-sectional survey including items used in pediatric communication studies from high-income countries and novel questions was verbally administered to 100 caregivers of children with cancer in Guatemala. RESULTS Guatemalan caregivers prioritized communication functions of exchanging information (99%), fostering healing relationships (98%), decision making (97%), enabling self-management (96%), and managing uncertainty (94%) over responding to emotions (66%) and cultural awareness (48%). Almost all caregivers wanted as many details as possible about their child's diagnosis and treatment (96%), likelihood of cure (99%), and late effects (97%). Only 67% were always given the information they needed without asking for it, and most caregivers sometimes (56%) or always (18%) had questions they wanted to discuss but did not. Approximately half of the caregivers (54%) correctly identified their child's diagnosis, primary site, disease extent (localized v metastatic), proposed treatment length, and treatment intent (curative v palliative). Caregivers of children with leukemia were more likely to correctly identify all attributes than those whose children had solid tumors ( P < .001). CONCLUSION Caregivers in Guatemala prioritize many of the same aspects of diagnostic communication as parents in the United States, and experience similar challenges. Shared communication values offer potential for adaptation of communication interventions across settings with varying resources and diverse cultures.

Pediatric cancer communication in Guatemala.

e18508 Background: Effective diagnostic communication is a cornerstone of cancer care. While > 90% of children with cancer live in low- and middle-income countries, little is known about patients’ and families’ communication priorities and experiences. We examined parent priorities for communication and the quality of information-exchange and decision-making during diagnostic communication in Guatemala. Methods: This study was conducted at Unidad Nacional de Oncologia Pediatrica. A cross-sectional survey was verbally administered in Spanish to 100 parents of children with cancer within 8 weeks of diagnosis. The survey included items utilized in pediatric communication studies from high-income countries and novel questions developed specifically for the study population. Results: Guatemalan parents prioritized communication functions including information exchange (99%), fostering healing relationships (98%), decision-making (97%), enabling self-management (96%) and managing uncertainty (94%) over functions such as responding to emotions (66%) and cultural awareness (48%). Almost all Guatemalan parents (96%) wanted as many details as possible about their child’s cancer. However, only 67% reported that they were always given the information they needed without asking for it, and most said they sometimes (56%) or always (18%) had questions they wanted to discuss with the doctor but did not. Half of parents (54%) correctly identified their child’s diagnosis, primary site, extent of disease (localized versus metastatic), length of proposed treatment, and treatment intent (curative versus palliative). Parents of children diagnosed with leukemia were more likely to understand all pieces of information than those whose children had solid tumors (p < 0.001). Most parents (76%) preferred to share in decision-making with oncologists. Two-thirds of parents (65%) held their preferred role in decision-making, with fathers more likely to hold their preferred role than mothers (p = 0.02). Reflecting on decisions they had made, 94% of parents strongly agreed they had made the right decisions. However, 17% of parents endorsed feeling that their choices had caused their children harm. Conclusions: Similar to findings from the United States, parents in Guatemala prioritize many aspects of diagnostic communication, especially information exchange, development of healing relationships, and decision-making. Nonetheless, many parents report challenges in information exchange and decision-making, suggesting a need for interventions to support communication processes.

Authentic and ethical leadership during a crisis

In today’s climate and environment, the conventional relationship between caring, economic, and leadership practices may no longer meet the needs of patients, clinicians, providers, or systems. It is asserted that in the current complicated and complex healthcare environment challenged by a multitude of issues, a shift toward human caring values and an ethic of authentic healing relationships is required, especially in light of the current COVID-19 pandemic. The costs of unethical behaviour can be even greater for followers. When we assume the benefits of leadership, we also assume ethical burdens. It is the assertion and experience of the authors that the triangle of ethics and ethical behaviour, followers, and patient’s outcomes is closely interrelated and affects each other in a very intimate and direct way. Unethical leadership may lead to follower disappointment and distrust, leading to lack of interest and commitment, consequently negatively impacting patient outcomes and organizational effectiveness.

Bhabha in the clinic

Before professional diagnosis, the determination of whether one is ‘ill’ or ‘well’ rests within the patient. These moments, when sufferers (re)cognize their own bodily and phenomenological experience as abnormal or different, are critical to the positioning of healer and patient. So too are moments when diagnosed patients, struggling with a treatment regime, compromise and adjust to embrace, if only partially, disparate ideas of health. In this article, I apply Homi Bhabha’s framework of hybridity and difference to think about the perception of illness, self-diagnosis, and power in healing relationships. I consider how sufferers enact hybrid positions between their bodily perceptions and their professional diagnoses. To illustrate the utility of Bhabha’s colonial critique for health care, I examine narratives by patients with diabetes-related vision loss about: (1) first realizations that something was wrong, what Bhabha might call the ‘intervention of difference’; (2) expressed differences between self-knowledge and biomedical knowledge, corresponding to Bhabha’s ‘partial embrace’ of the colonial ideal; and (3) the self-colonizing epistemological work that compliant patients do as they re-orient their pre-diagnostic self to a post-diagnostic habitus of self-monitoring, timed medications, and other treatments. I conclude with a discussion of how Bhabha’s colonial hybridity supports a more productively contentious medical anthropology that envisions and pursues decolonized health care.

PET VISITATION AS NARRATIVE CARE FOR OLDER ADULTS IN THERAPEUTIC SETTINGS

A growing body of research highlights the physiological and psychosocial benefits of pet visitation programs in therapeutic settings. These programs utilize the profound connection between humans and animals to promote holistic healing, foster greater quality of life, and influence meaningful communication between patients and providers. For older adults in hospitals or long-term care, these benefits are often correlated with moments of pleasure, comfort, relaxation, and entertainment. The current study builds on this prior knowledge by examining pet visitation programs as a novel form of narrative care that can also help preserve biographical continuity and promote the sharing of lived stories. We worked with two volunteer pet visitation programs in Houston and one in Los Angeles. Our research included a variety of ethnographic methods, including participant observation; informal interviews with providers, patients (or residents, depending on the context), and their families; semi-structured interviews with volunteers; and discourse review of organizational materials. We employed a method of constant comparison to identify and thematically analyze recurrent patterns of behavior and overarching meanings across the data. Three primary themes emerged from the data: (a) compassion, (b) connection, and (c) response. Collectively, the presence of pets prompted stories and behaviors that foster healing relationships characterized by empathy and mutual understanding between patients (or residents), family members, and providers. Pet visitation programs facilitate storied conversations, increased autonomy, and alternative ways of knowing that promote greater understandings of the patient’s (or resident’s) psychosocial context and biographical history, leading to more personalized care and improved well-being.

The other office

Across recent decades, profound changes in the practice of medicine have been accompanied by parallel developments in the daily mental efforts of medical professionals. Using visual metaphors and hand-drawn illustrations, the author explores the evolution of one physician’s brain over the past 25 years. At the completion of training, the patient-practitioner relationship, medical knowledge, and care decisions dominated clinician thought, time, and effort. During the 1990’s, the growing constraints of third-party payers and government regulations presented new challenges to delivering relationship-based care. Over the past decade, the electronic health record (EHR) has added further cognitive complexity, disrupted human relationships, and contributed significantly to the current epidemic of clinician burnout. Solutions to these challenges include rethinking education, documentation, professional standards, institutional barriers, and regulatory mandates. It is important to pursue all solutions with the underlying premise of protecting healing relationships as the foundation of clinical care.

Concepts and Principles of Integrative Nursing

The discipline of nursing has always had a holistic ontology and epistemology that aligns with the unitary paradigm. Yet nursing practice has not always been consistent with these perspectives. This chapter describes concepts and principles of integrative nursing, which offer a way of being-knowing-doing that advances the health and wellbeing of persons, families, and communities through caring/healing relationships in a manner that honors historical roots and transforms nursing care delivery. Six principles provide a framework that can shape the way nurses use evidence to select therapeutic strategies from the full range of possible interventions to support whole person/whole systems healing.