Parents as Advocates for the Psychosocial Survival of Adolescents and Young Adults with Cancer

Many young people with cancer have a parent or parents who care for them during their hospitalisation and treatment, and remain an important part of their lives after the ‘crisis’ has passed and young people have moved into survivorship. This qualitative study explored the impact of cancer diagnosis, treatment and survival during adolescence and young adulthood on the practice and experiences of parenting. We conducted focus groups with a total of 22 parents of young people diagnosed with various cancers between the ages of 11 and 19 years old. The results indicated that parents advocated for their offspring in different ways at different points of the cancer journey. Parents used their parental knowledge of their offspring to secure a medical diagnosis and treatment, developed medical knowledge to advocate for appropriate treatment within the medical system, and then used parental and medical knowledge to advocate for their offspring’s successful psychosocial survival. In this final point in the journey, parents entered social worlds from which they would normally be absent and some went to great lengths to ensure their offspring were not socially disadvantaged

'In this scenario, I do this, for these reasons': narrative, genre and ethical reasoning in the clinic

Narrative analysis has been applied by health researchers to investigate (among other things) clinical reasoning, clinical ethics and human identity. The term 'narrative' is often used as a broad category that covers a variety of spoken genres, however, and it thereby lacks delicacy as an analytic tool. We introduce genre theory, which enables us to differentiate more clearly between story genres and other spoken genres. We then apply the theory to ten narrative-style interviews with clinicians involved in the treatment and management of colorectal cancer in Sydney, Australia. We characterise the narrative-style interview as a macro-genre, and draw attention to the occurrence of spoken genres other than stories. We focus our analysis on a policy genre that occurred naturally and frequently in the spoken discourse of the informants, but which has not been described before in either the literature of social linguistics or the health and medical literature. We analyse two examples of this genre in detail in order to characterise its main semantic features, and differentiate it from story genres. We then discuss the genre with reference to Aristotelian interpretations of ethical reasoning in the clinic. We conclude that the policy genre is both the unfolding of practical wisdom in speech, and the appropriate choice of genre where a display of ethical identity is called for. Finally, we discuss the implications of our findings for ongoing research, for ethics education, for bioethical theory, and for communication between some of the different stakeholder groups in clinical medicine.Narrative Genre Decision making Ethical analysis Professional identity Australia

Contextualising professional ethics : the impact of the prison context on the practices and norms of health care practitioners

Health care is provided in many contexts - not just hospitals, clinics, and community health settings. Different institutional settings may significantly influence the design and delivery of health care and the ethical obligations and practices of health care practitioners working within them. This is particularly true in institutions that are established to constrain freedom, ensure security and authority, and restrict movement and choice. We describe the results of a qualitative study of the experiences of doctors and nurses working within two women's prisons in the state of New South Wales (NSW), Australia. Their accounts make clear how the provision and ethics of health care may be compromised by the physical design of the prison, the institutional policies and practices restricting movement of prisoners and practitioners, the focus on maintaining control and security, and the very purpose of the prison and prison system itself. The results of this study make clear the impact that context has on professional practice and illustrate the importance of sociology and anthropology to bioethics and to the development of a more nuanced account of professional ethics.13 page(s

Views of health journalists, industry employees and news consumers about disclosure and regulation of industry-journalist relationships : an empirical ethical study

Bioethicists and policymakers are increasingly concerned about the effects on health journalism of relationships between journalists and private corporations. The concern is that relationships between journalists and manufacturers of medicines, medical devices, complementary medicines and food can and do distort health reporting. This is a problem because health news is known to have a major impact on the public's health-related expectations and behaviour. Commentators have proposed two related approaches to protecting the public from potential harms arising from industry-journalist interactions: greater transparency and external regulation. To date, few empirical studies have examined stakeholders’ views of industry-journalist relationships and how these should be managed. We conducted interviews with 13 journalists and 12 industry employees, and 2 focus groups with consumers. Our findings, which are synthesised here, provide empirical support for the need for greater transparency and regulation of industry-journalist relationships. Our findings also highlight several likely barriers to instituting such measures, which will need to be overcome if transparency and regulation are to be accepted by stakeholders and have their intended effect on the quality of journalism and the actions of news consumers.6 page(s

Life disruption and generic complexity: a social linguistic analysis of narratives of cancer illness

This paper draws on social linguistics to inquire into the meaning and function of complexity in illness narratives. According to social linguists, five different story-type genres occur in spoken English. These are illustrated and differentiated using examples drawn from 10 interviews with people who have undergone colectomy for colorectal cancer. In order to test a hypothesis that complexity in illness narratives is related to life disruption, the 10 accounts were ranked in terms of their generic complexity. Measures of life disruption were based on rankings furnished independently by two readers from different disciplines who were blind to the hypothesis being tested. These two rankings showed a high level of agreement (rs=0.85, p 0.05), age (p>0.7) nor time since diagnosis (p>0.1). We conclude that in this study, generic complexity was strongly and significantly related to life disruption. To explain the function of complexity in interaction, we characterise the illness narrative as a genre in its own right, and argue that illness narratives need to be considered both in terms of the work they do both on the listener and for the narrator. In the former case, complexity opens up a discursive space for the dynamic positioning of the interlocutor. In the latter case, we propose that complexity reflects the degree to which the process of re-ordering life by assigning meaning is occurring as the interaction unfolds. In both cases, complex narratives can thus be understood as "hard working" narratives.Social linguistics Illness narrative Colorectal cancer Story quote

Understanding of sarcasm and mental states in young children

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