1. Pancreatic transplantation: revealing trauma in patients with type 1 diabetes
S Jackson1, K Gleeson2 & RM Smith3
1University of the West of England, Bristol, UK, 2University of Surrey, Guildford, UK, 3Academic Renal Unit, Clinical Sciences at North Bristol, UK
Background
pancreas transplants now performed per annum in the UK
Psychological recovery from pancreas transplantation is a major problem resulting in more frequent clinic attendance and delayed return to full activities of daily living
Information guiding intervention to optimize psychological recovery is lacking
This study was undertaken to try to better optimize psychological support for patients post pancreatic transplantation
Participants & Methods
Qualitative design:
semi-structured 1:1 interviews
average length of interview 1 hour
digitally recorded and transcribed verbatim;
data analysed independently by 2 researchers using Inductive Thematic Analysis
Participants
20 participants with T1DM
Gender: 10 female, 10 male
5 pre-transplant; 15 post transplant
time since transplantation: from 7 weeks to 3 years
transplantation type:
7 pancreas only
8 simultaneous pancreas & kidney
Results
PTSD (post traumatic stress disorder) is a mental health condition triggered by an event perceived as being terrifying in some way
Traumatic stress was related to both the experience of transplantation, and the participant’s pre-transplant life with uncontrolled hypos
We found extensive evidence of PTSD symptoms amongst our study population
PTSD symptoms
Study themes: Pre-Transplant
Trying to avoid thinking or talking about the traumatic event
Theme: Diabetic identity (Resisting diabetes) – participants would describe the hypos and some of the shocking events associated with them in a very factual, unemotional way. Their descriptions tended to minimise their impact and imply that it was other family members and friends who were having problems dealing with it. They tended to emphasise their ability to cope rather then dwelling on the difficulties.
Feeling emotionally numb
Avoiding activities you once enjoyed
Theme: Diabetic identity (Diabetes is more than symptoms) – there were many accounts of how the worsening of their T1DM and the increased hypos were unpredictable for others to have to deal with. Participants described how they felt like second-class citizens and not as good as others because they weren’t normal and needed help to manage their condition. Post-transplant patients started to talk about being able to think ahead and have proper plans of things they would like to do, which revealed how limited and hopeless they had felt prior to the transplant.
Hopelessness about the future
Overwhelming guilt or shame
Self-destructive behaviour, such as drinking too much
Theme: Diabetic identity (Resisting diabetes) - there were a number of ways in which people resisted their diagnosis of diabetes and its other health consequences. In some cases the desire not to accept their diabetes was manifest in behaviours that led to poor control of blood sugar levels and risky behaviours.
Flashbacks, or reliving the traumatic event for minutes or days at a time
Study theme: Post-transplant
Theme: Adjustment (Powerful memories) – included participants’ incredibly detailed memories of the morphine dreams and very vivid hallucinations they experienced in hospital, as well as the strong feelings associated with their memories of uncontrolled, unpredictable hypos prior to transplantation.
Upsetting dreams about the event
Hearing or seeing things that aren’t there
Memory problems
Theme: Transformation (Different person) – described how the transformation following transplantation was comprehensive. Participants described the embarrassment and distress associated with no longer being able to remember appointments and the difficulties in being able to settle to read, watch the television, or do other tasks that required them to sit and concentrate.
Trouble concentrating
Irritability or anger
Theme: Transformation (Different person) – participants described how their unpredictable emotional reactions were causing problems with family members. Some participants described how they didn’t recognise themselves in the emotional responses they had to fairly innocuous events, such as watching the evening news, an experience they reported as being strange and unsettling, as well as being difficult to explain to others.
Difficulty maintaining close relationships
Trouble sleeping
Theme: Transformation (Different person) – there were descriptions of significant changes in sleep patterns, the most common issue being significant periods of insomnia. Participants reported changes in energy levels: some seemed to have loads of energy even to the extent of being unable to settle, while other s had too little energy and were easily startled.
Being easily startled or frightened
Conclusions
The change following transplant is instant and dramatic for most patients, but it involves negotiating complex changes in identity as well as adjustment in every aspect of life. The new health regime that follows the transplant also potentially keeps the patient in a sick role and in touch with the trauma. There is the constant risk of organ failure and being plunged back into having scary hypos.
These data suggest that this patient group may require psychological support to assess and address potential traumatic stress associated with T1DM and transplantation.