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Registered nurses' understanding of truth-telling as practiced in the nursing-home: An Australian perspective
... 26 Family members caring for kin with Alzheimer's disease, who rely on lying as a communicative strategy, 'must deal with their misgivings about how they have violated the normal expectations of intimacy and trust'. 9 Based on findings reported elsewhere from a larger study 8,27,28 the understanding and meanings care providers hold about truth-telling (and lying) requires an understanding of the context in which communication occurs. The perceptions the care providers have about the residential aged care facility (RACF), how they describe it as 'Home away from home' (and what this means), as a place of little time and a plethora of situations have implications for the operation of truth-telling as a whole. ...
... 33 The analysis of data sought to determine participants' understanding and the conditions and consequences of their understanding about truth-telling in the residential aged care facility. 8,28,35 To this end, the larger study objectives were to understand why the care providers and residents think, feel, and act the way they do about truth-telling in practice; and to reveal the conditions in which this operates and the consequences of the care providers' and residents' truth-telling beliefs, feelings, and actions. ...
This analysis examines the practice of care providers in residential aged care lying to residents with dementia. Qualitative data were collected through multiple methods. Data here represents perceptions from registered and enrolled nurses, personal care assistants, and allied health professionals from five residential aged care facilities located in Queensland, Australia. Care providers in residential aged care facilities (RACFs) lie to residents with dementia. Lying is conceptualized as therapeutic whereby the care provider's intent is to eliminate harm and also control behaviour. Care providers of residents with dementia in RACFs need guidance around lying. An ethical framework cognisant of an ethical theory of good and ethical theory of right supplemented by a theory of virtue is proposed. A complimentary four stage communication strategy that promotes truth telling as a first option while also recommending the lie as a suitable strategy is also promoted.
... although they deal with death frequently, the organization of their work lives precludes them from benefi ting from traditional coping strategies like visiting the cemetery (Bachelor, 2007), or attending funeral services, so workers must develop their own tactics for dealing with emotions surrounding death and loss. They also must develop strategies for dealing with the stress of performing emotional labor (Hochschild, 1983) with families as they support and manage information about decline (Tuckett, 2006). ...
Interviewing about death and loss can bring up unexpected emotions for respondents and interviewers. Positivist social scientific research methods often either ignore the emotions of the researcher, or argue that emotional expressions are to be avoided in research, even when the topic is thought to inspire intense feelings – like death and dying. This article argues for taking an alternative position toward emotions in death and dying research. Using data from over two years of participant observation and 34 semi-structured interviews with hospice workers, I illustrate one potential way to productively and ethically share emotions during a research interview. This approach includes learning and being open to the ‘moderated cry’, which involves minimal tears, the absence of sobbing, and an overt acknowledgment of the emotional reaction. This article illustrates the ways respondents in this research used the moderated cry as well as the value of reconsidering prohibitions on emotions in research.
The current literature highlights that professional healthcare staff admit to regularly telling lies in practice, to people with dementia. This, despite the Nursing and Midwifery Council and the General Medical Council being explicit in their codes of conduct that nurses and doctors must not tell lies to patients. Both codes also highlight the duty of beneficence and non-maleficence, and it is known, that sometimes, telling the truth to people with dementia can cause great distress. The purpose of this study was to use ethnography to undertake a critical analysis of the concept of lying in clinical practice in the context of people with dementia. The aims of the study were as follows: • To develop a taxonomy of lies • To use the taxonomy to develop a model which could be used in practice, to explore the impact of lie telling Current literature has used either phenomenology or grounded theory to ask staff their perceptions of what they say when they tell lies. Uniquely, the methodology used for this study was ethnography, with the researcher acting as a complete participant observer, observing lies told in practice to people with dementia by staff (nurses, doctors, allied health professionals and healthcare assistants). By using ethnography, this study has recorded previously unidentified phenomenon and brought new knowledge and insight to the topic area. Data was collected from two wards for people with moderate to severe dementia over a period of 45 shifts, equating to approximately 338 hours. The data was analysed using thematic content analysis.
The role of Australian rural radiographers in radiographic interpretation, communication and disclosure of their radiographic opinion with a specific focus on plain film radiography was examined in a two phase, exploratory interpretive study. Data were collected using questionnaires and interviews and analysed thematically. This reports one of the key themes identified in the thematic data analysis. ‘Disclosure of Radiographic Opinion to Patients’ comprises the three interrelated sub-themes Acting Ethically, Selective Disclosure and Filtered Truth. It is wholly concerned with the ways in which rural radiographers choose to disclose their radiographic opinion to patients. Without a clear picture of where they stand medico-legally, rural radiographers draw on experience and a strong ethical framework as the basis for these complex decisions. Rural radiographers frame their disclosures to patients in a manner that is governed by the diagnostic, therapeutic and emotional impact the information disclosed may have on the patient. Disclosure to patients was found to be selective, often diagnostically vague and ethically filtered.
A qualitative study using individual semistructured interviews was undertaken to explore the perceptions and experiences of 23 aged care residents with mild dementia concerning the deaths of coresidents. The views of 25 facility staff members were also explored. The study was based in 3 aged residential facilities in Victoria, Australia. Interview data indicated that residents and staff had differing views. Residents reported that the impact of the death of a coresident was much less than staff members thought. Residents generally wanted to be told about the death of someone they knew and considered attempts to hide the death and the removal of the body both unnecessary and disrespectful. Both groups agreed that the celebration of the life of a resident was important, although they differed in their preferences for the way this is done. These findings have implications for staff education and practice.
This entry discusses research that treats “face-to-face communication” as a subject in its own right possessing specific self-emergent dynamics and not as indicative of something else (such as “personality” or “power structure”). The concept of face-to-face communication is used in contrast to medial forms of communication and emphasizes properties in situations of bodily copresence of the persons who communicate. Since, in physical copresence and temporal simultaneity, communication is unmediated and direct, this type of communication is also called “interaction.” In particular, the fact that interaction is immediately responsive and that communicators orient their actions at this fact has challenged sender–message–receiver models of communication. After a brief overview of the historical dimensions of the subject, the entry presents the emergence and establishment of interaction studies in the 20th century, followed by current questions and future directions of research.
I would like to speak about what I consider the future of grounded theory. I will discuss in whose hands the future of grounded theory appears to be and what accounts for its spread, its use and misuse, and where the majority of grounded theory studies are occurring. I will then briefly review poor grounded theory, qualitative grounded theory, social fictions, and theory bits. Finally, I will touch on the future structures in which grounded theory will be taught and centered.First, a few guidelines are necessary. Grounded theory refers to a specific methodology on how to get from systematically collecting data to producing a multivariate conceptual theory. It is a total methodological package. It provides a series of systematic, exact methods that start with collecting data and take the researcher to a theoretical piece that is publishable.
This thesis argues that truth-telling in high level (nursing home) aged care is a undamentally important aspect of care that ought to reside equally alongside instrumental care. The health of the resident in a nursing home, as with individuals in other care contexts, is directly linked to care provision that allows the resident to be self determining about their care and thus allows them to make reasonable choices and decisions. This qualitative study explores the meaning of truth-telling in the care providerresident dyad in high level (nursing home) aged care. Grounded within the epistemology of social constructionism and the theoretical stance of symbolic interactionism, this study relied on oral and written text from care providers (personal care assistants and registered nurses) and residents. Thematic analysis of data relied on practices within grounded theory to determine their understanding and the conditions and consequences of their understanding about truth-telling in the nursing home. Through an understanding of the relationship-role-residency trinity, truth-telling in high level (nursing home) care comes to be understood. It has been determined that the link between truth-telling and the nature of the care provider-resident (and residents' families) relationship is that both personal carers and nurses in this study premise their understanding of truth disclosure on knowing a resident's (and resident's family's) capacity for coping with the truth and therefore catering for the resident's or family's best interests. The breadth and depth of this knowing and how the relationship is perceived and described determine what care providers will or will not tell. That is, the perceptions both personal carers and nurses have about the relationship - how they describe themselves as 'family like', 'friend' and 'stranger', has implications for the way disclosure operates and is described. Additionally, how care providers perceive and understand their role determines what care providers will or will not tell. That is, the perceptions both carers and nurses have about their own and each other's role - how they describe themselves for example as 'hands-on' carer and 'happy good nurse' has implications for the way disclosure operates and is described. Furthermore, care providers' meaning and understanding of truth-telling in aged care is not possible in the absence of an appreciation of how the care providers give meaning to and come to understand the care circumstance - residency, the aged care facility, the nursing home. That is, the perceptions both personal carers and nurses have about the aged care facility - how they describe residency as 'Home away from Home' (and what this means), as a place of little time and a plethora of situations have implications for the operation of truth-telling as a whole. Recommendations from the study include the implementation of a telling audit to better serve the truth-telling preferences of residents and the reorientation of care practices to emphasise affective care (talk rather than tasks). Furthermore, it is recommended that changes occur to the care provider roles, that care providers define themselves as facilitators rather than protectors, and education be ongoing to improve communication with and care of residents with dementia and those dying. Finally, the language of residency as 'home' needs to capture an alternate philosophy and attendant practices for improved open communication.
Controversy exists as to whether Alzheimer's disease (AD) patients should be told their diagnosis, yet no research has been done examining older patients' attitudes on this topic. This study examines patient's attitudes toward this topic.
A prospective, community-based study. Participants read vignettes of two patients, one with AD and one with terminal cancer, and then answered questions regarding their attitudes toward these illnesses.
A community-based retirement community in Charlottesville, Virginia.
One hundred fifty-six community-dwelling older persons (mean age 79.7 +/- 6.9 years).
A structured questionnaire disclosed demographic data (age, sex, race, religion, marital status), personal experience with cancer and AD, and opinions about being told the diagnosis of these diseases.
Most participants (n = 124, 79.5%) responded that they would prefer to know if they had AD, but the number was significantly fewer (Fischer exact test, P < .001) than those who would want to know if they had terminal cancer (n = 143, 91.7%) Interestingly, significantly fewer married subjects would want their spouse to know if the spouse had either illness. Only 65.7% (n = 69) of subjects would want their spouse to know if the spouse had AD (Fisher exact test, P = .008), whereas for cancer, 80.2% (n = 77) would want their spouse to know if the spouse had cancer (Fisher exact test P < .001). No demographic variables distinguished subjects who did from those who did not want to know the diagnosis for themselves or their spouses for either AD or cancer. Among the reasons some subjects gave for wanting to know of the diagnosis of AD was being able to consider suicide.
Although these results may support disclosure of diagnosis for most patients with AD, clinical and ethical issues remain in individual cases.
Questions pertaining to patient adherence and provider roles are part of the classical repertoires in sociological and health services research. While extensive research programmes consider why patients do not follow medical advice, less is known about how practitioners assess patient adherence. Similarly, there has been much work on provider roles changing with the organisation of healthcare, but less attention to the ways providers conceptualise, choose and strategically enact practices in the course of their work. Using data from a year-long ethnographic study of two diabetes clinics, I examine some of the stances medical practitioners actively choose and enact in their treatment of diabetes patients - educators, detectives, negotiators, salesmen, cheerleaders and policemen - and how they tailor their actions to specific patients in order to maximise their adherence to treatment regimens. Findings suggest that the notions of 'patient adherence' and 'physician roles' are conceptually broader and more fluid than what is captured in existing literature, and this rigidity potentially impairs our ability to learn more about the everyday practices of medical work.
The older patient-healthcare provider relationship in a managed-care environment
- J Nussbaum
- L Pecchioni
- T Crowell
Eventually it’ll be over: The dialectic between confinement and freedom in the phenomenal world of the hospitalised patient
- M Shattell