Service Related Project Presentation

Exploring the psychological needs of patients receiving a

transplant in a National Health Service Transplant unit

LAURA CATHERINE WEDLOCK

2014 COHORT

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Aims of this presentation

Introducing topic and rationale

Why is the current research important?

Outline aims of the research, methods and analysis

Discuss themes generated from research data

Consider service implications/future research

Conclusions

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Background

Organ transplantation is the process of transferring cells, tissues or organ from a donor to a

recipient, to restore bodily function (WHO, 2015)

Development of improved immunosuppression in 1980’s (Starzl et al., 1985) led to fewer rejections

and better patient outcomes

NHSBT (2015) documented transplant activity 2014 – 2015

Over 7000 individuals awaiting transplant across UK

High numbers of patients on waiting lists for long periods – impact’s psychological health

Mauthner et al. (2013) – Patients in pre-transplant stage experience feelings of fear, anxiety and

predominately Loss

Need useful information and consistent support

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Psychological health of patients

Psychological health of transplant patients:

Depression can affect up to 60% of transplant patients at some stage (Corbett et al., 2013)

Lung transplant recipients have particularly low quality of life pre-transplant (Ortega et al., 2009)

The psychological health of patients should be a main focus throughout process; individuals should be

supported to deal with the changing needs and challenges that arise as they move from pre to post

transplant

Literature identified links between psychological health and long term survival in this

demographic (Rosenberger et al., 2016; Smith et al., 2015)

Importance of individuals being encouraged and supported to be psychologically healthy

What are the needs of patients, in order to support their recovery and wellbeing?

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The Present Study

Research was conducted within an NHS cardiothoracic (Heart and lung) transplant unit in

England

Research question and aims considered in collaboration with psychologists working in the service

Focus on patient perspective to improve understanding

Research question: Explore the experiences of individuals who have undergone transplant

within an NHS transplant unit

Aim: To increase understanding of what patients informational and support needs are, and how these change through their experience from pre to post-transplant. Findings would have

important implications for how the service develops future informational resources and

organises support opportunities for both patients and their loved ones.

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Methods

Design

Qualitative research

Ethic approval sought through NHS and

local R&D

Participants

7 men

Age range: 40s - 65

All recipients of a lung transplant

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Diagnosis Time on

waiting list

Time since

transplant

Age

Albert Emphysema 12 + months 3 years 63

Daniel Pulmonary

Fibrosis

6 months 1 Year 50s

Herbert Sarcoidosis 16 months 6 months 40s

Malcolm COPD 5 months 3 years 65

Sidney Emphysema

and COPD

1 week 4 years 64

Joe Primary

pulmonary

hypertension

3+ years 5 years 40s

Tom Emphysema 3 weeks 5 years 59

Data collection and Analysis

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Semi-structured interviews conducted; 6 within the transplant unit and 1 in a participant’s home. Each interview lasted approximately 1 hour

Interview schedule facilitated flexible discussion. Questions developed to make participants reflect on their

experience:

How did your support needs change throughout the process? What information was most beneficial to you?

Did certain information become more important at different stages in the process?

Analysis conducted using Interpretative Phenomenological Analysis

“Examining how individuals make meaning of life experiences” (Pietkiewicz & Smith, 2014, p.14)

Transcripts analysed individually; codes generated from transcripts were iteratively grouped and reviewed to

identify final themes

Results

4 final themes generated from the data:

Theme 1: Emotional impact of the pre-transplant process

Theme 2: Gaining information and developing expectations

Theme 3: Identifying and satisfying support needs

Theme 4: Adapting to post-transplant life

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Emotional Impact of the pre-

transplant process

Participants discussed experiencing fear and anxiety, which had an impact on their ability to remain positive and led to considerable thoughts around mortality.

Experience was described as extremely isolating for individuals; they pushed people away or felt unable to connect with others. Each man discussed their varied ability to and techniques for seeking comfort and support, to come to term with their situation

Loss pervaded all participant accounts; loss of role, autonomy, control and independence. This continued post-transplant, with the men limited by the need to adhere to rules to maintain health

Each participant emphasised pre-transplant as a stage of particular vulnerability, where needing help is necessary, but accepting it is hard

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Gaining information and developing

expectations

Good connections forged with professionals important for developing realistic expectations

Participants felt it was easier to gain information relating to pre-transplant/surgery stage than information about post-transplant/recovery stage

Professionals must be aware of patient anxiety and level of knowledge – “You find that doctors know something and they think you know as well…Like I hate people using abbreviations. What the hell does that mean?” (Malcolm)

Important for patients to feel prepared for recovery stage – Hallucinations, psychological, social and physical side effects

Current information resources do not adequately prepare individuals

Being informed increased individuals feeling of preparedness and control – Lack of information led to greater anxiety and difficulties coping post-transplant

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Identifying and satisfying support

needs

Psychology input/role highlighted by participants as useful and important resource

Saw psychology as an ‘ally’ (Tom) and more approachable than doctors

Several men didn’t meet with psychology until in the post-transplant stage – would have found earlier input beneficial Feel that psychology should have a larger role in their care and be more present throughout the experience

Benefit of flexible and individualised support

Some couldn’t attend organised support groups – felt they missed out on useful support

Usefulness of peer support – sense of camaraderie

Benefit of opportunities to meet together and discuss experience – things doctors don’t explain

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Adapting to post-transplant life

Each individual went through period of adjusting to ‘new life’ – mourning what they had lost, while coming to terms with improved health and the challenges that come with new organ

Life gaining new perspective

Sense of fragility in men’s accounts – Identified psychological aspects of recovery, which men need continued support with

Side effects were a prominent part of patient experience; individuals reported feeling that more detailed and balanced information would be useful, as would support coming to terms with side effects, some of which are life long

Each man discussed ‘personal responsibility’ and giving back as part of their role in recovery

Following rules/looking after themselves and assisting future patients was of particular importance

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Discussion and service Implications

Results illustrated how challenging the transplant experience is and also the influence which good information/support can have on the development of realistic expectations, coping and recovery.

Participants identified:

The importance of comprehensive information for patients and loved ones, suitably communicated

The need for psychological input and monitoring, to ensure patients are being adequately supported. Re-evaluation of how psychology assesses, monitor and support patients

The benefit of peer support and patients being aware of what support resources are available to them

Supports previous research:

Having appropriate preparatory information early in the process influences post-surgical psychological and physical outcomes (Auer et al., 2015)

Peer support provided access to practical information, positive coping models and empowered individuals (Hughes, Wood & Smith, 2009)

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Conclusions

Service implications:

Promoting a consistent environment and staff team that empowers patients, makes them feel involved in their care and able to seek information

Consideration of opportunities for patients and their loved ones to seek information out with arranged appointments; E.g. drop in sessions, online or telephone consultations

Patient input in the development of future information resources

Revised methods of how psychologists assess and monitor patient support needs

Development of future support group opportunities

Future Research

Research around which methods of communication are preferred by patients/loved ones could assist with the future development of information/support resources

A more novel research area could be around patient experience of post-surgery hallucinations, and how they can best be informed/supported in dealing with this experience

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Reflections

A challenging, but positive learning experience

Gained experience of applying for NHS and local R&D ethics – good practice for thesis

Useful experience with regards to learning to analyse, code and transcribe qualitative data

Encountered difficulties recruiting heart transplant recipients due to my availability at outpatient

clinics and the expertise of clinicians who agreed to assist with recruitment

Would be interesting to see if another study looking at heart patients found similar or different themes

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References

WHO. (2015) Transplantation. Retrieved from: http://www.who.int/topics/transplantation/en/ on 15 November 2015

NHSBT. (2015)

Mauthner, O., Poole, J.M., De Luca, E., Abbey, S.E., Shildrick, M., Ward, J., Gewarges, M., & Ross, H. (2013). Life on the Heart Transplant Waiting List: Life on Hold? Life at All? The Journal of Heart and Lung Transplantation, 32(4), 196. DOI: http://dx.doi.org/10.1016/j.healun.2013.01.480

Corbett, C., Armstrong, M.J., Parker, R., Webb, K., & Neuberger, J.M. (2013). Mental Health Disorders and Solid-Organ Transplant Recipients. Transplantation, 96(7), 593-600. DOI: 10.1097/TP.0b013e31829584e0

Ortega, T., Deulofeu, R., Salamero, P., Roman, A., Masnou, N., Rubio, S., Garcia, O., Casanovas, T., Cofan, F., Twose, J., & Ortega, F. (2009). Health related quality of life before and after a solid organ transplantation (Kidney, Liver and Lung) of Four Catalonia Hospitals. Transplantation Proceedings, 41 (6), 2265-2267. DOI: http://dx.doi.org/10.1016/j.transproceed.2009.06.175

Rosenberger, E.M., DiMartini, A.F., DeVito Dabbs, A., Bermudez, C.A., Pilewski, J.M., Toyoda, Y., & Dew, M.A. (2016). Psychiatric predictors of Long-Term Transplant related outcomes in lung transplant recipients. Transplantation, 100(1), 239-247. DOI: 10.1097/TP.0000000000000824

Pietkiewicz, I., & Smith, J. A. (2014). A practical guide to using Interpretative Phenomenological Analysis in qualitative research psychology. Psychological Journal, 20(1), 7-14. DOI: 10.14691/CPPJ.20.1.7

Starzl TE, Iwatsuki S, Esquivel CO, Todo S, Kam I, Lynch S, Gordon RD, Shaw BW., Jr Refinements in the surgical technique of liver transplantation. Semin Liver Dis. 1985 Nov;5(4):349–356.

Smith (2015).

Auer et al 2015

Hughes J., Wood, E., & Smith, G. (2009). Exploring kidney patients’ experience of receiving individual peer support. Health Expectations, 12(4), 396-406. DOI: 10.1111/j.1369-7625.2009.00568.x

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Thank you for listening! ANY QUESTIONS?

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