Using the Reproducible Open Coding Kit & Epistemic Network Analysis to model qualitative data.

Background: Epistemic Network Analysis (ENA) is a unified, quantitative - qualitative method aiming to draw from both methodological worlds by leveraging a data set containing raw and quantified qualitative data, as well as metadata about data providers or the data itself. ENA generates network models depicting the relative frequencies of co-occurrences for each unique pair of codes in designated segments of qualitative data. Methods: This step-by-step tutorial demonstrates how to model qualitative data with ENA through its quantification via coding and segmentation. Data was curated with the Reproducible Open Coding Kit (ROCK), a human- and machine-readable standard for representing coded qualitative data, enabling researchers to document their workflow, as well as organize their data in a format that is agnostic to software of any kind. Results: ENA allows researchers to obtain insights otherwise unavailable by depicting relative code frequencies and co-occurrence patterns, facilitating a comparison of those patterns between groups and individual data providers. Conclusions: ENA aids reflexivity, moves beyond code frequencies to depict their interactions, allows researchers to easily create post-hoc groupings of data providers for various comparisons, and enables conveying complex results in a visualization that caters to both qualitative and quantitative sensibilities.

A feasibility study for a unified, multimodal analysis of online information foraging in health-related topics.

Background: Digital health literacy (DHL) is the ability to find, understand, and appraise online health-related information, as well as apply it to health behavior. It has become a core competence for navigating online information and health service environments. DHL involves solving ill-structured problems, where the problem and its solution are not clearcut and may have no single answer, such as in the process of sensemaking. We employ and expand on information foraging theory to address how experts and novices in information retrieval perform a search task. Our overarching aim is to pinpoint best practices and pitfalls in understanding and appraising health-related information online to develop a digital intervention to increase DHL and critical thinking. Methods: In this feasibility study, we recruited a total of twenty participants for our expert and novice subsamples. We collected sociodemographic data with a self-developed survey, video data through an observation protocol of a 10-minute search task, as well as audio-video data via a retrospective think-aloud. The three, multimodal data streams were transcribed and aligned. Codes were developed inductively in several iterations, then applied deductively to the entire dataset. Tabularized, coded and segmented qualitative data were used to create various quantitative models, which demonstrate viability for the qualitative and statistical comparison of our two subsamples. Results: Data were visualized with Epistemic Network Analysis to analyze code co-occurrences in the three aligned data streams, and with Qualitative/Unified Exploration of State Transitions to examine the order in which participants in our two subsamples encountered online content. Conclusions: This paper describes our methods and planned analyses elaborated with mock figures. Quantifying qualitative data, aligning data streams, and representing all information in a tabularized dataset allows us to group data according to various participant attributes and employ data visualization techniques to pinpoint patterns therein.

Medical Communication during the Transition to Palliative Care in Pediatric Oncology in Hungary-The Parents' Perspective.

The transition to palliative care (PC) is a critical aspect of pediatric oncology, and it requires a high level of communication skills from doctors, which could be best judged by the parents of children who have died from cancer. Our aim was to explore the parents' perspectives regarding the timing of the consultation on the implementation of PC, as well as facets of verbal and nonverbal communication in Hungary. Semistructured interviews were conducted with parents who had lost a child to cancer within the past 1-5 years. Interview transcripts (n = 23) were scrutinized with interpretative phenomenological analysis. The parents frequently associated palliation with end-of-life care and they clearly delimited the transition to PC after curative treatments had been exhausted. The parents were ambivalent with regard to the use of the word "death" during this consultation, and they often did not receive information on what to expect (e.g., regarding symptoms) or on who to turn to for further information or support (e.g., concerning bereavement). Although significant progress could be observed in the organization of pediatric palliative care in Hungary, there is still no widely accepted communication method for the transition to sole PC. There is a need for a culturally sensitive approach to refining the recommendations on the word use and communication protocol in pediatric PC in Hungary.

Attitudes Underlying Reliance on Complementary and Alternative Medicine.

Objective: We aimed to map attitudes underlying complementary and alternative medicine (CAM) use, especially those involved in "dysfunctional CAM reliance," that is, forgoing biomedical treatment in a life-threatening situation in favor of alternative treatment. Analyses of modifiable determinants of CAM use were conducted at a sufficiently specific level to inform intervention development. Methods: We collected usable data on CAM-related attitudinal beliefs from 151 participants in Budapest with varying degrees of CAM use, which we analyzed using confidence interval-based estimation of relevance plots. Results: Although there were beliefs that the entire sample shared, there was a marked difference between the biomedical and CAM groups. These differences were beliefs concerning trust in various medical systems, the level of importance assigned to emotions in falling ill, and vitalism or Eastern concepts. Regarding CAM users in general, the most successful intervention targets are beliefs in vitalism on the one hand, and distrust in biomedicine on the other. In addressing dysfunctional CAM use specifically, the most significant beliefs pertain to "natural" cures and reliance on biomedical testing. Conclusions: Albeit much research has been carried out on the motivations behind CAM use, rarely do studies treat CAM users separately in order to scrutinize patterns of nonconventional medicine use and underlying cognition. This is the first study to begin pinpointing specific attitudes involved in dysfunctional CAM use to inform future intervention development. Such interventions would be essential for the prevention of incidents and mortality.

Patient Journeys of Nonintegration in Hungary: A Qualitative Study of Possible Reasons for Considering Medical Modalities as Mutually Exclusive.

INTRODUCTION: Complementary and alternative medicine (CAM) use has been increasing in the past decades in tandem with changes regarding the notions of health and illness. Comparing conventional medicine (CM) and CAM in how they address health problems has been a point of focus for both the health sciences and individuals dealing with health problems. Various social, cultural, political, economic, and personal factors play a role in whether different health approaches are integrated or not when addressing illness experiences. METHODS: The qualitative study comprised semistructured interviews (N = 9) and participant observation involving 105 patients conducted between January 2015 and May 2017 at 4 clinics of Traditional Chinese Medicine in Budapest, Hungary. Code structures were created inductively with Interpretative Phenomenological Analysis. RESULTS: The mutually exclusive view of CM/CAM use occurred due to loss of trust in the doctor-patient relationship causing problems in communication, and also as a result of the patient espousing certain cultural dispositions. Significant dispositions included a preference for the "natural" and psychologization, the latter often manifested in psychosocial etiology, vitalism, and illness symbolism. DISCUSSION: A polarized choice of therapy may occur as a result of a competitive health care market in which medical modalities and their underlying cultural systems compete within a global milieu of information proliferation and a hybridization of individual worldviews. Through a process of "cultural creolization", changing concepts of health and illness create varying patient expectations and meanings regarding illness, which in turn affect therapy choice as well. CONCLUSION: Mirrored in the articulation of an individual's illness trajectory is a tension that is also reflected in the struggles in the health care system to more adequately understand health/illness processes from a pluralistic perspective. The power relations in the health arena (among CAM/CM practitioners and systems) play a role in legitimizing or undermining different health practices, which as consequence affects the possibility of integrating them into the processes of care. Thus, therapy choice is not only linked to changing notions of health and illness, but also to shifting conceptualizations of self, identity, and the practitioner-patient relationship.

The timing and circumstances of the implementation of pediatric palliative care in Hungarian pediatric oncology.

Despite the continuous improvement of pediatric palliative care, medical professionals still face various barriers regarding its implementation; our aim was to investigate this question in Hungarian pediatric oncology practice. Structured interviews were carried out in person with physicians from the Hungarian Pediatric Oncology Group (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. Most physicians placed the palliative care discussion at the end of curative treatment (n = 21) and preferred to conduct it in a team setting (n = 18), mainly in the presence of a psychologist. Preparing parents for the child's death can occur during the palliative care discussion (n = 3), in the child's final days/h (n = 6), gradually (n = 10), or never (n = 3). There are words consciously utilized and avoided during this discussion, with the word "death" proving to be the most ambivalent (utilized n = 5, avoided n = 6). CONCLUSIONS: There is no widely accepted unified practice among pediatric oncologists concerning the implementation of palliative care in Hungary. Despite the international recommendation, the common practice of timing is still at the end of curative treatment. Physicians rely on multidisciplinary teamwork, where the psychologist's role is the most prominent in this discussion. What is Known: • There is an international consensus that palliative care should commence at the diagnosis of a pediatric malignant disease regardless of illness outcome. • Barriers to the early implementation of palliative care in pediatric oncology involve resource-based and attitudinal factors. What is New: • In Hungary, where pediatric oncologists are sole decision-makers, early implementation of palliative care is rare. • There is a strong preference among physicians for working within a team, while also asserting that presence of team members may decrease the level of intimacy.

A qualitative study of culturally embedded factors in complementary and alternative medicine use.

BACKGROUND: Within the intercultural milieu of medical pluralism, a nexus of worldviews espousing distinct explanatory models of illness, our research aims at exploring factors leading to complementary and alternative medicine (CAM) use with special attention to their cultural context. METHODS: The results are based on medical anthropological fieldwork (participant observation and in-depth interviews) spanning a period from January 2015 to May 2017 at four clinics of Traditional Chinese Medicine in Budapest, Hungary. Participant observation involved 105 patients (males N = 42); in-depth interviews were conducted with patients (N = 9) and practitioners (N = 9). The interviews were coded with Interpretative Phenomenological Analysis; all information was aggregated employing Atlas.ti software. RESULTS: In order to avoid the dichotomization of "push and pull factors," results obtained from the fieldwork and interviews were structured along milestones of the patient journey. These points of reference include orientation among sources of information, biomedical diagnosis, patient expectations and the physician-patient relationship, the biomedical treatment trajectory and reasons for non-adherence, philosophical congruence, and alternate routes of entry into the world of CAM. All discussed points which are a departure from the strictly western therapy, entail an underlying socio-cultural disposition and must be scrutinized in this context. CONCLUSIONS: The influence of one's culturally determined explanatory model is ubiquitous from the onset of the patient journey and exhibits a reciprocal relationship with subjective experience. Firsthand experience (or that of the Other) signifies the most reliable source of information in matters of illness and choice of therapy. Furthermore, the theme of (building and losing) trust is present throughout the patient journey, a determining factor in patient decision-making and dispositions toward both CAM and biomedicine.

[Difficulties in communication with parents of pediatric cancer patients during the transition to palliative care]. / A kommunikáció nehézségei daganatos gyermekek szüleivel a palliatív ellátásra történo áttérés során.

INTRODUCTION: Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. AIM: To investigate the timing and manner of communication with parents concerning the introduction of palliative care in pediatric oncology. METHOD: Structured interviews, containing 14 questions, were carried out with physicians working in pediatric oncology (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. RESULTS: Interviews show a tendency of a one-step transition to palliative care following curative therapy. Another expert is usually involved in communication, most likely a psychologist. Regarding communication, there are expressions utilized or avoided, such as expressing clarity, self-defense and empathy. The communication of death and dying was the most contradictory. CONCLUSION: This was the first investigation regarding communication in pediatric palliative care in Hungary. Our results show that a modern perspective of palliative communication is present, but necessitates more time to become entrenched. Orv Hetil. 2017; 158(30): 1175-1181.

[Factors determining the selection of treatment options of complementary and alternative medicine]. / A komplementer és alternatív medicina felé orientálódó terápiaválasztást meghatározó tényezok.

INTRODUCTION: Complementary and alternative medicine have undoubtedly been gaining ground on the healthcare market, thus the vital question arises why patients choose these treatments, oftentimes at the cost of discontinuing the Western medical therapy. AIM: The aim of the authors was to investigate and scrutinize factors leading to the utilization of various alternative medical services. METHOD: The basis of this qualitative research was medical anthropological fieldwork conducted at a clinic of Traditional Chinese Medicine including participant observation (355 hours), unstructured interviews with patients (n = 93) and in-depth interviews (n = 14). RESULTS: Patients of alternative medical systems often do not receive a diagnosis, explanation or cure for their illness from Western medicine, or they do not agree with what they are offered. In other instances, patients choose alternative medicine because it exhibits a philosophical congruence with their already existing explanatory model, that is, previous concepts of world, man or illness. CONCLUSIONS: A particular therapy is always part of a cultural system and it is embedded in a specific psycho-social context, hence choice of therapy must be interpreted in accordance with this perspective.