Children's decision making in cancer therapy: A long-term observational study.

BACKGROUND: The survival rate of children with cancer has increased substantially in recent years. Shared decision making (i.e., the ability of children with cancer to express their will and share it with medical personnel) has become a particularly important issue. The nature and developmental processes of children's decision making in hospital should be understood. There is, however, a lack of research in this area. METHODS: From January 2016 to March 2018, we conducted a longitudinal qualitative observational study, within the context of medical anthropology, in a hospital pediatric ward in Japan. We investigated the nature and development of decision making among seven children aged 5-12 years with hematologic cancers. We recorded their everyday behaviors, interactions, narratives, and events in the ward. The recording was conducted systematically and it was analyzed thematically using both variable-oriented and process-oriented modes to assess causal relationships between phenomena. RESULTS: The thematic analysis identified three thematic scenes in which children developed their will regarding cancer treatment: (1) adjusting to hospital life; (2) forming friendships with other children; and (3) communicating with medical personnel. Sharing information, building trusting relationships, and sharing treatment goals with medical personnel were identified as forms of children's participation in medical decision making. Through cultivated friendships, children's peer groups were sources of resilience and strength in overcoming difficulties in hospital life. CONCLUSIONS: The development of children's decision making in a pediatric oncology ward was based on various rich human relationships. Such relationships should be promoted to improve shared decision making substantially.

Perceptions of family medicine among long-term patients of a family medicine clinic in Japan: a mixed-methods study.

OBJECTIVES: To examine the perceptions of family medicine among patients attending a family medicine clinic for over 10 years in Japan and explore the unique characteristics of a family medicine which was developed in the local community in northern Japan. DESIGN: Explanatory, sequential mixed-method design comprising a survey by questionnaires and semistructured interviews. SETTING: The study was conducted at one of the oldest family medicine primary care clinics in Japan. We surveyed and interviewed participants from November 2019 to March 2020. PARTICIPANTS: 144 patients who have attended a family medicine clinic since April 2009 completed the questionnaires. Semistructured interviews with nine participants were conducted. RESULTS: Among the respondents, 131 (91%) reported having attended a family medicine clinic. In terms of their perceptions of what 'family physicians' do, 42 (35%) stated 'a doctor who treats various diseases with a general view', 34 (29%) stated 'a doctor who treats outpatients and visit patients' houses', and 15 (13%) stated 'a doctor whom one can consult for anything and is familiar with one's family and lifestyle'. The results of the qualitative analysis revealed two themes with regard to patients' perceptions of family medicine: 'seeing the whole person and referring suitably' and 'medical care at home'. Patients' perceptions of family medicine identified in the quantitative study were strongly associated with the characteristics extracted from the qualitative study. CONCLUSION: Patients attending the family medicine clinic had clear perceptions of what family physicians do. The two major perceptions of the characteristics of family medicine were identified as 'seeing the whole person and referring suitably' and 'medical care at home'.

Children's cognition and attitudes during long-term cancer treatment: an ethnographic study.

BACKGROUND: Cancer treatment for children is typically long-term and difficult, and the experience is unique for each child. When designing child-centred care, individuals' values and preferences are considered equally important as the clinical evidence; therefore, understanding children's thoughts and attitudes while they receive long-term treatment could offer valuable insights for better clinical practice. METHODS: We conducted long-term consecutive participatory observations and interviews with seven children, who were hospitalised and receiving cancer treatment for the first time. The daily observational data on those children's discourses, behaviours and interactions with health professionals were systematically collected and thematically examined. The analysis was expanded to explore significant narratives for each child to capture their narrative sequence over time. RESULTS: The initial analysis identified 685 narrative indexes for all observation data, which were categorised into 21 sub-codes. Those sub-codes were assembled into five main themes by thematic analysis: making promises with health professionals, learning about the treatment procedures through participation, taking care of oneself, increasing the range of activities one can perform and living an ordinary life. CONCLUSION: We observed a forward-looking attitude toward understanding cancer, accepting treatment and looking forward to the future among children undergoing in-hospital cancer treatment. In addition, the children developed cognitively, affectively and relationally throughout cancer treatment processes. These findings have implications for better clinical practice in child-centred care, including children's participation in shared decision-making in paediatric oncology.

Parental Decision-Making in Cancer Therapy: A Long-Term Observational Study.

Parental participation in shared decision-making in children's cancer therapy is essential because parents advocate for and support their children's wishes. However, little research has focused on this issue. We conducted a longitudinal observational study of 7 parents whose child had received their first cancer treatment. We recorded parents' behaviors, interactions, and narratives in 1 pediatric ward and 2 outpatient clinics. The recordings were systematically conducted and thematically analyzed using variable-oriented and process-oriented modes to assess the causal relationships among phenomena. We found 4 themes describing the processes by which parents developed and participated in shared decision-making. The first 2 themes reflected the development of reciprocal parental relationships and parent-other child relationships. These 2 types of relationship generated mutual trust and a sense of solidarity among parents (the third theme). This, in turn, became the foundation for parents to share decision-making with health care professionals (the fourth theme).

Mixed methods study protocol to examine perceptions of family medicine among long-term patients of a family medicine clinic in Japan.

INTRODUCTION: Family physicians or general practitioners play central roles in many countries' primary care systems, but family medicine (FM) remains relatively unestablished in Japan. Previous studies in Japan have examined the general population's understanding of FM as a medical specialty, but none have explored this topic using actual FM clinic patients. Here, we describe a protocol to explore the perceptions of FM among long-term patients of one of Japan's oldest FM clinics. METHODS AND ANALYSIS: The study will be conducted at the Motowanishi Family Clinic in Hokkaido, Japan, using patients who have attended the clinic for over 10 years. The analysis will adopt a two-phase explanatory sequential mixed methods design. During phase I, quantitative data from participants' medical records will be collected and reviewed, and patients' perceptions of FM will be assessed through a questionnaire. The correlations between participants' knowledge that the clinic specialises in FM and various characteristics will be examined. In phase II, qualitative data will be collected through semi-structured interviews of approximately 10 participants selected using maximum variation sampling based on phase I results. A thematic analysis will be conducted in phase II to identify patients' perceptions and changes in perceptions. Finally, each theme identified in phase II will be transformed into a quantitative variable to analyse the relationships between the phases. A joint display will be used to integrate the phases' findings and examine how phase II results explain phase I results. ETHICS AND DISSEMINATION: The institutional review board of the Japan Primary Care Association has approved this research (2019-003). The results will be presented at the association's annual academic meeting and submitted for publication in relevant journals. The findings will also be provided to the patients via the clinic's internal newsletter.

"HIV is irrelevant to our company": everyday practices and the logic of relationships in HIV/AIDS management by Japanese multinational corporations in northern Thailand.

Multinational corporations (MNCs) are important participants in workplace initiatives on HIV/AIDS as they collaborate with international organizations to globally promote various policies and guidelines. To date, MNCs have enacted the majority of such initiatives in North America, Europe and South Africa, but we have little information on how MNCs elsewhere, especially in Japan, have responded to the issue of HIV/AIDS in the workplace. This study examines the actual on the ground situation of HIV/AIDS management in Japanese MNCs, specifically investigating everyday corporate practices in the context of internal interactions and relationships and the resulting practices and outlook concerning HIV/AIDS. It is based on a secondary analysis of ethnographic case studies conducted in 10 Japanese-affiliated companies in northern Thailand. Japanese managers, Thai managers and ordinary Thai workers all considered HIV/AIDS to be "irrelevant" to their company and/or themselves. HIV/AIDS measures in the companies were limited to provision of information. This perception and management of HIV/AIDS developed from their everyday interactions governed by the logic of relationships in the companies. In these interactions, they categorized others based on their ascriptive status, primarily based on class, ethnicity and nationality. They sought scapegoat groups that were lower than them in the class- and ethnicity/nationality-based hierarchical system, and cast the risk of HIV infection upon the scapegoat groups, thus reducing their own sense of risk. The paper shows that the relational logic, not ideals or principles, influences their views of and actions concerning HIV/AIDS management in the companies. This is why Japanese companies are unable to deal with HIV/AIDS in terms of international policies and guidelines that are based on the logic of human rights and the logic of business principles. The results suggest a need for international policymakers to pay more attention to everyday practices in the actual field of policy dissemination.

[Sexual relations and condom use among young male factory workers in northern Thailand].

PURPOSE: This article analyzes sexual relations and condom use among young male factory workers at an industrial estate in Northern Thailand, so as to clarify their HIV risk situation. METHODS: The analysis is based on data obtained from a total of 13 months of ethnographic field research at an industrial estate between June 1997 and March 2000. During this period, I interviewed 27 male factory workers, gathering information on their knowledge and awareness of AIDS, HIV preventive behavior, lifestyles, relations with friends, sexual relations, health, and contraception. RESULTS: This study identified the emergence of positive self-images among participants as diligent and respectable factory workers, as a result of life changes, such as having a stable job at the estate and improvement of their social status. Having a wife/lover also stabilized the sexual life, as they tried to avoid sexual relationships with commercial sex workers. All participants had accurate knowledge about HIV/AIDS. They had negative images of HIV risk groups such as "poor," "uneductated," and "sexually promiscuous," which stood in opposition to their positive self-images such as "financially stable," "educated," and "self-controlled," Such formation of self-images resulted in the denial of their risk potential. Believing that their sexual partners posed no risk of infection, they hardly ever took HIV preventive measures. In marriage and loving relationships, oral pills were mostly used for contraception, and condom use was seen as unnatural and unnecessary. CONCLUSIONS: It was inferred from the present study that formation of new sexual norms in opposition to traditional sexual norms of Thai men that value sexual philandering would possibly control their risk-taking behavior. New sexual norms emerged as a result of their life and status change from sons of peasants' families to factory workers, and also their conscious effort to differentiate themselves from HIV risk groups. Insofar as their life remains stable and their mutually exclusive relations with their wife/lover are maintained, they should have no risk of infection. However, some of the participants in this study were in multiple sexual relationships and almost all of the participants did not take any preventive measures, suggesting a potential hazard. Effective HIV prevention campaigns for factory workers that clearly state that every sexual activity involves a potential risk of infection are required.