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Well, I wouldn't be any worse off, would I, than I am now? A qualitative study of decision-making, hopes, and realities of adults with type 1 diabetes undergoing islet cell transplantation

Speight, Jane, Woodcock, Alison J., Reaney, Matthew D., Amiel, Stephanie A., Johnson, Paul, Parrott, Neil, Rutter, Martin K., Senior, Peter and Shaw, James A.M. 2016, Well, I wouldn't be any worse off, would I, than I am now? A qualitative study of decision-making, hopes, and realities of adults with type 1 diabetes undergoing islet cell transplantation, Transplantation direct, vol. 2, no. 5, Article number: e72, pp. 1-9, doi: 10.1097/TXD.0000000000000581.

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Title Well, I wouldn't be any worse off, would I, than I am now? A qualitative study of decision-making, hopes, and realities of adults with type 1 diabetes undergoing islet cell transplantation
Author(s) Speight, JaneORCID iD for Speight, Jane orcid.org/0000-0002-1204-6896
Woodcock, Alison J.
Reaney, Matthew D.
Amiel, Stephanie A.
Johnson, Paul
Parrott, Neil
Rutter, Martin K.
Senior, Peter
Shaw, James A.M.
Journal name Transplantation direct
Volume number 2
Issue number 5
Season Article number: e72
Start page 1
End page 9
Total pages 9
Publisher Lippincott Williams & Wilkins
Place of publication Philadelphia, Pa.
Publication date 2016-05
ISSN 2373-8731
Summary BACKGROUND: For selected individuals with type 1 diabetes, pancreatic islet transplantation (IT) prevents recurrent severe hypoglycemia and optimizes glycemia, although ongoing systemic immunosuppression is needed. Our aim was to explore candidates and recipients' expectations of transplantation, their experience of being on the waiting list, and (for recipients) the procedure and life posttransplant.

METHODS: Cross-sectional qualitative research design using semistructured interviews with 16 adults (8 pretransplant, 8 posttransplant; from 4 UK centers (n = 13) and 1 Canadian center (n = 3)). Interviews were audio-recorded, transcribed, and underwent inductive thematic analysis.

RESULTS: Interviewees were aged (mean ± SD) 52 ± 10 years (range, 30-64); duration of diabetes, 36 ± 9 years (range, 21-56); 12 (75%) were women. Narrative accounts centered on expectations, hopes, and realities; decision-making; waiting and uncertainty; the procedure, hospital stay, and follow-up. Expected benefits included fewer severe hypoglycemic episodes, reduced need for insulin, preventing onset/progression of complications and improved psychological well-being. These were realized for most, at least in the short term. Most interviewees described well-informed, shared decision-making with clinicians and family, and managing their expectations. Although life "on the list" could be stressful, and immunosuppressant side effects were severe, interviewees reported "no regrets." Posttransplant, interviewees experienced increased confidence, through freedom from hypoglycemia and regained glycemic control, which tempered any disappointment about continued reliance on insulin. Most viewed their transplant as a success, though several reflected upon setbacks and hidden hopes for becoming "insulin-free."

CONCLUSIONS: Independently undertaken interviews demonstrated realistic and balanced expectations of IT and indicate how to optimize the process and support for future IT candidates.
Language eng
DOI 10.1097/TXD.0000000000000581
Field of Research 170106 Health, Clinical and Counselling Psychology
Socio Economic Objective 920104 Diabetes
HERDC Research category C1 Refereed article in a scholarly journal
ERA Research output type C Journal article
Copyright notice ©2016, The Authors
Free to Read? Yes
Use Rights Creative Commons Attribution Non-Commercial No-Derivatives licence
Persistent URL http://hdl.handle.net/10536/DRO/DU:30086271

Document type: Journal Article
Collections: Faculty of Health
School of Psychology
Open Access Collection
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Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au.