| 1. |
- Abbey, Susan E., et al.
(författare)
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Qualitative interviews versus standardised self-report questionnaires in assessing qualityb of life in heart transplant recipients
- 2011
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Ingår i: The Journal of Heart and Lung Transplantation. - : Elsevier. - 1053-2498 .- 1557-3117. ; 30:8, s. 963-966
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Tidskriftsartikel (refereegranskat)abstract
- Quality of life (QoL) studies in heart transplant recipients (HTRs) using validated, quantitative, self-report questionnaires have reported poor QoL in approximately 20% of patients. This consecutive mixed methods study compared self-report questionnaires, the Medical Outcomes Study 36-item Short Form Health Survey (MOS SF-36) and the Atkinson Life Satisfaction Scale, with phenomenologically informed audiovisual (AV) qualitative interview data in 27 medically stable HTRs (70% male; age 53 ± 13.77 years; time since transplant 4.06 ± 2.42 years). Self-report questionnaire data reported poor QoL and more distress compared with previous studies and normative population samples; in contrast, 52% of HTRs displayed pervasive distress according to visual methodology. Using qualitative methods to assess QoL yields information that would otherwise remain unobserved by the exclusive use of quantitative QOL questionnaires.
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| 2. |
- Holm, Marie-Louise
(författare)
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Fleshing out the self : Reimagining intersexed and trans embodied lives through (auto)biographical accounts of the past
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This thesis explores how current ways of imagining possibilities for intersexed and trans embodied lives within medical contexts might be informed by and reimagined through the historical lived experiences of intersexed and trans individuals as they have been articulated in autobiographical accounts.Postmodern, queer, intersex, and trans researchers and activists have criticised existing standards of intersex and trans healthcare for limiting the possibilities for diverse embodied lives by articulating certain forms of embodiment and selfhood as more likely to enable a liveable life than others. This has often been done in a medico-legal context by referring to experiences in the past of the unliveability of corporealities and gendersexed situations that differ from privileged positions. With a point of departure in these critiques, this thesis reopens questions about how intersexed and trans people may be embodied and have relations with others by reflecting upon the period of the first three-quarters of the 20th century, when the present standards of care and diagnostic categories were emerging, but had not yet become established.Drawing upon a unique set of historical source material from the archives of the Danish Ministry of Justice and the Medico-Legal Council, intersexed and trans persons’ life stories are rearticulated from their own and medico-legal experts’ accounts written in relation to applications for change of legal gendersex status and medical transition. In this way, the process is traced through which these life stories have been repeatedly rearticulated in order to become a usable basis for diagnosis and decision-making. At the same time, the stories are unfolded once more in a rearticulation focusing on their complexity and diversity.
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| 3. |
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| 4. |
- Mauthner, Oliver, et al.
(författare)
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Heart transplants: : Identity disruption, bodily integrity and interconnectedness
- 2015
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Ingår i: Health. - : Sage Publications. - 1363-4593. ; 19:6, s. 578-594
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Tidskriftsartikel (refereegranskat)abstract
- Of heart transplant recipients, 30 per cent report ongoing or episodic emotional issues post-transplant, which are not attributable to medications or pathophysiological changes. To this end, our team theorized that cardiac transplantation introduces pressing new questions about how patients incorporate a transplanted heart into their sense of self and how this impacts their identity. The work of Merleau-Ponty provided the theoretical underpinning for this project as it rationalizes how corporeal changes affect one’s self and offer an innovative framework to access these complex aspects of living with a transplanted heart. We used visual methodology and recorded 25 semi-structured interviews videographically. Both visual and verbal data were analyzed at the same time in an iterative process. The most common theme was that participants expressed a disruption to their own identity and bodily integrity. Additionally, participants reported interconnectedness with the donor, even when the transplanted heart was perceived as an intruder or stranger. Finally, transplant recipients were very vivid in their descriptions and speculation of how they imagined the donor. Receiving an anonymous donor organ from a stranger often leaves the recipient with questions about who they themselves are now. Our study provides a nuanced understanding of heart transplant recipients’ embodied experiences of self and identity. Insights gained are valuable to educate transplant professionals to develop new supportive interventions both pre- and post-transplant, and to improve the process of informed consent. Ultimately, such insights could be used to enable heart transplant recipients to incorporate the graft optimally over time, easing distress and improving recovery.
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| 5. |
- McCormack, Donna, et al.
(författare)
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Monster Talk : A Virtual Roundtable with Mark Bould, Liv Bugge, Surekha Davies, Margrit Shildrick and Jeffrey
- 2018
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Ingår i: Somatechnics. - : Edinburgh University Press. - 2044-0138 .- 2044-0146. ; 8:2, s. 248-268
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- This roundtable brings together scholars and artists working with the monster and the monstrous. It took place between December 2017 and June 2018 via email. Participants responded to an initial email question from me, and then to each other's responses, along with framing questions from me. The ‘temporality, polyvocality, and virtual space of this roundtable’ (Dinshaw et al. 2007: 177) evokes this roundtable's indebtedness to scholars in the fields of queer and critical ethnic studies, as well as bringing to the fore the monstrous in its unstable and individually collective form. I am grateful to the invitees who came to the table and shared their time and thoughts.
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| 6. |
- Poole, Jennifer, et al.
(författare)
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Grief and loss for patients before and after heart transplant
- 2016
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Ingår i: Heart & Lung. - Philadelphia, PA, USA : Mosby, Inc.. - 0147-9563 .- 1527-3288. ; 45:3, s. 193-198
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Tidskriftsartikel (refereegranskat)abstract
- ObjectivesThe purpose of the study was to examine the loss and grief experiences of patients waiting for and living with new hearts.BackgroundThere is much scholarship on loss and grief. Less attention has been paid to these issues in clinical transplantation, and even less on the patient experience.MethodsPart of a qualitative inquiry oriented to the work of Merleau-Ponty, a secondary analysis was carried out on audiovisual data from interviews with thirty participants.ResultsPatients experience loss and three forms of grief. Pre-transplant patients waiting for transplant experience loss and anticipatory grief related to their own death and the future death of their donor. Transplanted patients experience long-lasting complicated grief with respect to the donor and disenfranchised grief which may not be sanctioned.ConclusionsLoss as well as anticipatory, complicated and disenfranchised grief may have been inadvertently disregarded or downplayed. More research and attention is needed.
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| 7. |
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| 8. |
- Poole, Jennifer, et al.
(författare)
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The obligation to say 'thank you' : Heart transplant recipients experience of writing to the donor family
- 2010
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Ingår i: American Journal of Transplantation. - : Elsevier BV. - 1600-6135 .- 1600-6143. ; 11:3, s. 619-622
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Tidskriftsartikel (refereegranskat)abstract
- Transplant recipients are encouraged to write anonymous thank-you letters to the donor family. We prospectively explored heart transplant recipients' embodied responses to the 'obligation' to write a thank-you letter using audio/video-taped open-ended interviews (N = 27). Fifteen of the 19 participants, who wrote letters to the donor family, expressed or visually revealed significant distress about issues such as the obligation to write anonymously and the inadequacy of the 'thank-you'. Writing the thank-you letter is not a neutral experience for heart transplant recipients. Rethinking the obligatory practice regarding the thank-you letter and developing the necessary support for the recipient through this process is necessary.
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| 9. |
- Ross, Heather, et al.
(författare)
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What they say versus what we see : 'Hidden' distress and impaired quality of life in heart transplant recipients
- 2010
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Ingår i: The Journal of Heart and Lung Transplantation. - : Elsevier. - 1053-2498 .- 1557-3117. ; 29:10, s. 1142-1149
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:Quality of life (QoL) studies in heart transplant recipients generally rely on quantifiable self-report questionnaires and have shown that approximately 20% of patients undergo distress and poor QoL not clearly related to medical variables.METHODS:Building on existing qualitative research, we used a phenomenologically informed audiovisual method to explore the nature of "distress" in heart transplant recipients. Focused open-ended interviews were conducted in non-clinical settings with 27 medically stable heart transplant recipients (70% male, mean age 53 ± 13 years, range 18 to 72 years; mean time since transplant 4.1 ± 2.4 years). Interviews were audio/videotaped and transcribed verbatim. A qualitative software program (NVIVO8) was used to code interview transcripts and videotaped bodily gestures and "expressive artifacts" as well as vocal tone and volume.RESULTS:Distress was displayed by 88% of patients during the interview, and 52% displayed a profound disjunct between the words they used to describe their quality of life (e.g., "wonderful") and their embodied expressions of the same (e.g., protective body posturing, distressed facial expression). Most also expressed significant distress when discussing issues such as the donor and their "gift of life," as well as a disrupted sense of bodily integrity and identity that they felt could only be appreciated by fellow heart recipients.CONCLUSIONS:Increased awareness of this distress and disruption related to bodily integrity and identity after heart transplant may allow transplant professionals and researchers to see beyond "words" to more effectively reduce distress and improve quality of life.
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| 10. |
- Shildrick, Margrit, 1949-
(författare)
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Becoming-Maternal : Things to do with Deleuze
- 2009
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Ingår i: Studies in the Maternal. - : University of London, Birkbeck College. - 1759-0434. ; 2:1-2
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Tidskriftsartikel (refereegranskat)abstract
- Given that psychoanalysis is so often the privileged discourse in the relation to the maternal feminine, it makes good sense to ask whether a Deleuzian alternative should be heard. The difficulty is that the whole discourse of the maternal and motherhood is represented only by silence in Deleuze’s own work, and feminist scholarship has largely failed to remark that absence. Nonetheless I look to Deleuze for an approach that decisively contests any psychoanalytic model that bases itself around the concept of lack – however that might be twisted and transformed in relation to the maternal – and that incorporates a positivity that might critically revalue the feminine. Starting with a brief excursus through phenomenology, I consider two pertinent issues: first that the ‘event’ of giving life might be rethought in the mode of the impersonal; and second that the slide from encounter to connection, and from maternal-foetal embodiment to the notion of assemblage, might open up at very least a quasi-Deleuzian notion of positive flows, desire and energies. Could becoming-maternal figure more productive pathways that transform our understanding of the materiality of motherhood?
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