The meaning of being in ethically difficult care situations in paediatric care as narrated by female Registered Nurses

Studies among physicians and nurses in paediatric care reveal experiences of loneliness and lack of open dialogue. The aim of this study was to illuminate the meaning of female Registered Nurses' lived experience of being in ethically difficult care situations in paediatric care. Twenty female Registered Nurses who had experienced being in ethically difficult care situations in paediatric care were interviewed as part of a comprehensive investigation into the narratives of male and female nurses and physicians about being in such situations. The transcribed interview texts were subjected to phenomenological-hermeneutic interpretation. The results showed that nurses appreciated social confirmation from their colleagues, patients and parents very much. This was a conditioned confirmation that was given when they performed the tasks expected from them. The nurses, however, felt that something was missing. They missed self-confirmation from their conscience. This gave them an identity problem. They were regarded as good care providers but at the same time, their conscience reminded them of not taking care of all the 'uninteresting' patients. This may be understood as ethics of memory where their conscience 'set them a test'. The emotional pain nurses felt was about remembering the children they overlooked, about bad conscience and lack of self-confirmation. Nurses felt lonely because of the lack of open dialogue about ethically difficulties, for example, between colleagues and about their feeling that the wrong things were prioritized in the clinics. In this study, problems arose when nurses complied with the unspoken rules and routines without discussing the ethical challenges in their caring culture. The rules and the routines of the caring culture represented structural barriers for creating open dialogue and an ethically justifiable practice, called inauthentic existence, blindness related to our own inauthentic understanding, which focuses on the routines, rules, theories and systems.     

Undocumented Motherhood: Gender,Maternal Identity,and the Politics of Health Care

ABSTRACT

Undocumented Mexican immigrants have had to regularly confront a prohibiting health care system despite alienation, marginalization, and the threat of deportation. In this article, I explore the impact of political exclusion and alienating discourses on the health habitus of undocumented Mexican mothers through the narrative of one mother, Marta Garza, who finds herself at the painful intersection of political and medical alienation. Marta’s narrative reflects an analytical framework that centers undocumented motherhood as a space of necessary resilience and strain, wherein she is forced to advocate for her children’s health despite prohibitive barriers and dangerous potential consequences.     

Relating information needs to the cancer experience. 2. Themes from six cancer narratives

Many different issues may arise for individuals with cancer, where the provision of information can be an effective coping strategy. It is also clear that information needs change over time and vary from person to person. This paper considers six cancer narratives from a study seeking to identify the information needs of people with cancer that emerged out of their cancer experience. Six respondents were invited to tell their story through in-depth interviews and narrative analysis uncovered thematic aspects of the lived experience. Themes emerged which showed that cancer impacts on different aspects of an individual's self-identity, including body image, family, social and work relationships. Cancer was viewed as an intrusion and the illness engendered feelings of vulnerability that impacted on their normal coping mechanisms. This resulted in a decreased ability to process information. While individuals expressed medical information needs, they were less likely to articulate their need for information when it related to other areas of their lives. Individuals reached a turning point during their experience, when the self-acknowledgement that they were living with cancer, enabled them to become more active respondents in the information process. As this stage cannot readily be identified as occurring at a specific point of the cancer trajectory, communication channels need to be kept open regarding information-giving. This raises questions about areas for further study.     

"I thought it was only ordinary fever!" cultural knowledge and the micropolitics of therapy seeking for childhood febrile illness in Tanzania

Economic considerations are often cited as important determinants of health-seeking behavior. This paper describes a situation in peri-urban Tanzania where user fees do not constitute the primary reason why mothers delay seeking prompt treatment at a public health facility for their young, febrile children. Mothers commonly believe that they are dealing with an ordinary fever and not malaria or any other serious illness complicated by fever. Hence, they engage in extended home-based treatment. Drawing upon an ethnographic study, this paper illustrates how cultural knowledge about disease symptomatology, cultural meanings associated with febrile illness, gender relations, and patterns of communication between health care providers and mothers significantly influence outcomes for childhood febrile illnesses. It is argued that an overemphasis on the correlation between user fees and treatment delays with regard to childhood illnesses tends to divert attention from other significant cultural factors and existing structural constraints that influence the dynamics of health care seeking and health outcomes. At a time when calls to implement artemisinine-based combination therapy as one of the front-line strategies in Tanzania are increasingly frequent, there is a need to pay closer attention to the contextual factors and socio-cultural dynamics that influence patterns of treatment-seeking for childhood malaria.     

Narratives about illness and medication: a neglected theme/new methodology within pharmacy practice research. Part II: medication narratives in practice

AIM: Part 2 of this paper aims to provide a methodological framework for the study of medication narratives, including a semi-structured interview guide and suggested method of analysis, in an attempt to aid the development of narrative scholarship within pharmacy practice research. Examples of medication narratives are provided to illustrate their diversity and usefulness. METHODS: The framework is derived from the work of other researchers and adapted for our specific purpose. It comes from social psychology, narrative psychology, narrative anthropology, sociology and critical theory and fits within the social constructionist paradigm. The suggested methods of analysis could broadly be described as narrative analysis and discourse analysis. Examples of medication narratives are chosen from a variety of sources and brief interpretations are presented by way of illustration. CONCLUSION: Narrative analysis, a neglected area of research in pharmacy practice, has the potential to provide new understanding about how people relate to their medicines, how pharmacists are engaged in producing narratives and the importance of narrative in the education of students. IMPACT OF THE ARTICLE: This article aims to have the following impact on pharmacy practice research: Innovative approach to researching and conceptualising the use of medicines. Introduction of a new theoretical perspective and methodology. Incorporation of social science research methods into pharmacy practice research. Development of narrative scholarship within pharmacy.     

Making sense of nonsense: experiences of mild cognitive impairment

Alzheimer’s disease (AD) is a stigmatised condition popularly assumed to be a death sentence for diagnosed individuals. Consequently, people with AD are often deemed incapable (and perhaps unworthy) of contributing to the social discourse surrounding their illness experience. Data from qualitative interviews with 18 people diagnosed with the potential precursor of AD known as mild cognitive impairment (MCI) are examined. Using grounded theory methods, analysis revealed overarching themes of uncertainty concerning definitions of memory loss, MCI, and AD as well as distinctions between normal ageing and dementia. While this confusion over the terminology and prognosis mirrors the lack of scientific consensus about nosology and appropriate treatment regimens, such ambiguity creates social and psychological tensions for diagnosed individuals. Arguably, participants’ unequivocal fear of and subsequent desire to differentiate their experiences from Alzheimer’s, however, stems from the exclusively negative social constructions of AD. Drawing from Goffman, these findings demonstrate the psychosocial impact of ‘framing contests’ and how ‘courtesy stigma’ can apply not only to associated persons but also associated conditions, such as MCI to AD. Given the underlying nosological creep – or medicalisation – of the recent diagnostic guidelines proposing two new pre‐dementia stages, understanding the illness narratives of MCI is critical.     

Associations between family relationships and symptoms/strengths at kindergarten age: what is the role of children's parental representations?

BACKGROUND: The quality of the family relationships plays an important role in the development of children's psychopathology and in their socio-emotional development. This longitudinal study aims to investigate whether family relationships are related to children's symptoms/strengths at kindergarten, and whether family relationships are predictors of changes in children's symptoms/strengths between 5 and 6. Our main interest is to examine the role of children's parental representations. METHODS: One hundred and fifty-three kindergarten children (67 girls, 86 boys) participated in this study. Children's parental representations were assessed using a story stem task (age 5). The family environment was assessed using parents' ratings (age 5). A multi-informant approach (parent, teacher, child) was employed to assess children's symptoms/strengths at 5 and 6. Children were interviewed using a standardised puppet interview. Parents and teachers completed questionnaires. RESULTS: Children's parental representations as well as the family environment were associated with children's symptoms/strengths at 5 and 6. When controlled for gender, children's representations were the only predictor of changes in symptoms/strengths between 5 and 6. A large number of negative parental representations at 5 predicted an increase in conduct problems. A large number of positive parental representations at 5 predicted an increase in pro-social behaviour. In terms of emotional symptoms and hyperactivity/inattention, symptoms at 5 were the only predictor for symptoms one year later. CONCLUSIONS: Our results suggest that kindergarten children's narrative representations may elaborate the processes underlying the expression of child disturbance and strengths, and underline the relevance of the play and narration of young children for diagnostics and therapy.     

Eliciting Adaptive Emotion in Conversations with Parents of Children Receiving Therapy for Leukemia

Clinician–parent communication may often be difficult, especially soon after the diagnosis. The aims of this article are to identify the communication strategies associated with expressions of adaptive emotions in parents and to explore the effect of the type of leukemia and of parent's gender on parents’ expressions of emotions. The data are obtained from 4.622 conversational turns of 20 videotaped interviews with 10 mothers and 10 fathers of children at their first hospitalization for leukemia. A coding scheme for parent emotional expressions was reliably applied by two independent judges. An original self-report questionnaire on parents’ emotional states was used before and after the interview. Positive politeness of interviewer elicits adaptive emotional expressions in parents. Mothers of children with acute myeloid leukemia and fathers of children with acute lymphoblastic leukaemia appear more distressed during the interview. This interview can be identified as an innovative technique of communication with parents of children with cancer.