Participant Observation at the End-of-Life: Reflecting on Tears

Tullis, Jillian A.

doi:10.1080/10410236.2012.699888

Cited by 8 publications

(7 citation statements)

References 6 publications

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“…Other findings from these data have been published elsewhere. 22,[26][27][28][29] In each of these studies, our methods included audiotaped and transcribed interviews, and detailed field notes of our observations. What we noticed in the course of pursuing these studies was that some patient narratives about their experiences with hospice care fell outside of the goals of those projects.…”

Section: Methodsmentioning

confidence: 99%

Resisting the hospice narrative in pursuit of quality of life

Tullis

Roscoe

Dillon

2017

Qual Res Med Healthc

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The overall hospice philosophy is to provide care that enhances a dying person’s quality of life. Most individual’s quality of life is improved when they embrace hospice eligibility and reimbursement requirements, such as stopping burdensome and ineffective curative treatment, addressing pain and other symptoms, and seeking avenues for closure. However, this institutionalized prescription for enhancing quality of life at the end of life does not work for all patients. This article considers what happens when patients’ personal definitions of quality of life at the end of life resist the prevailing narrative of appropriate hospice care. Using a series of examples from more than 600 hours of participant observation, our findings reveal narratives of resistance that fall into three themes: i) patients and/or family members who deny the imminence of death despite an admission to hospice; ii) patients who request treatments usually defined as curative; and iii) patients who resist the organizational constraints imposed by the institutionalization of the hospice model of care. Analysis of these themes illustrates the subjective nature of quality of life at the end of life and the pressures of standardization that may accompany the growth and maturity of the hospice industry in the United States.

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Section: Methodsmentioning

confidence: 99%

Resisting the hospice narrative in pursuit of quality of life

Tullis

Roscoe

Dillon

2017

Qual Res Med Healthc

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“…I do not think the patient and Sara realized that something special occurred; my emotions and thoughts were all kept inside and not verbalized or included in the field note. At the time of the study, I found it difficult to know how to handle or make use of my own emotions in the research process, an experience also described by Tullis (2012). Rethinking the situation, I can see that the one aspect of the common ground the three of us shared in this situation, although from very different angles, was the presence of suffering and death.…”

Section: Lived Observationsmentioning

confidence: 97%

“…Would they speak to someone about it and who? Were emotions expected and allowed by patients, relatives, and staff, and what functions did emotions serve (Tullis, 2012)?…”

Section: Lived Observationsmentioning

confidence: 99%

“…Being close to suffering and dying persons and to death, the researcher might feel confronted with the vulnerability of life, and to one’s own mortality and losses (Kristvik, 2012; Valentine, 2007; Woodthorpe, 2009). There are descriptions of unexpected and unanticipated ethical situations during the research process without any clear solutions (Lawton, 2000; Tullis, 2012; Valentine, 2007; Woodthorpe, 2009), and the role of empathy and reciprocity in the researcher–participant relationship is discussed (Newbury, 2011).…”

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confidence: 99%

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Lived Observations

Thoresen

Öhlén

2015

Qual Health Res

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As researchers in palliative care, we recognize how involvement with seriously ill and dying persons has an impact on us. Using one's own senses, emotional and bodily responses in observations might open intersubjective dimensions of the research topic. The aim of the article is to highlight how phenomenological theories on intersubjectivity can be useful to develop rich and transparent data generation and analysis. We present three field note examples from observation in a hospice ward, which illuminate how researcher awareness of aspects of intersubjectivity can add valuable insights to data and analysis. Out of the examples, we elaborate on three arguments: (a) how the researcher's lived experience of time and space during fieldwork triggers new research questions, (b) how observations as an embodied activity can bring new insights and open new layers of meaning, and (c) the value of observations in gaining insight into relational aspects in a hospice.

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“…Other CHC scholarship uses narrative and performative frameworks to illuminate embodied power dynamics surrounding health and illness as they intersect with disability and ableism (Scott, 2012(Scott, , 2015Spencer, 2019) (in)fertility (Johnson and Quinlan, 2016); pregnancy (Peterson, 2016), heteronormativity (Arrington, 2012;Silverman et al, 2012;Hudak and Bates, 2018), aging (Roscoe, 2018); and dying (Tullis, 2013;Sharf, 2019). A particularly compelling autoethnographic CHC study explores a researcher's (lack of) credibility when she seeks treatment for chronic pain and encounters health care providers and community members who greet her pain-wracked body with doubt, skepticism, and even ridicule (Birk, 2013).…”

Section: Embodied Frameworkmentioning

confidence: 99%

Embodied Methods in Critical Health Communication

Ellingson

2019

Front. Commun.

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At the center of critical questions posed about power and health communication are issues of embodiment-whose bodies are judged to be healthy and whose are not, which identities are affirmed and privileged and which are stigmatized and marginalized, which material practices are pathologized and which are lauded. Critical health communication (CHC) research may be enacted by critical-interpretive researchers who employ critical embodiment theorizing frameworks that guide their questions posed, co-construction of data, and forms of analysis and representation. CHC researchers are uniquely poised to attend to the embodied aspects of health, illness, health care delivery, and public health in order to improve the health of local and global communities.

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Participant Observation at the End-of-Life: Reflecting on Tears

Cited by 8 publications

References 6 publications

Resisting the hospice narrative in pursuit of quality of life

Resisting the hospice narrative in pursuit of quality of life

Lived Observations

Embodied Methods in Critical Health Communication

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