Leading light

Magi Sque is Professor of Clinical Practice and Innovation with the School of Health and Wellbeing at the University of Wolverhampton and the Royal Wolverhampton Hospitals NHS Trust.

Her career began as a registered nurse at Guy’s Hospital in London, followed by 17 years specialising in oncological nursing. She is now best known for her pioneering research into the psychological and social aspects that underpin organ donation after death, and is a leading international expert in her field.

Magi can pinpoint the moment that transformed her career. During a visit to her native Jamaica 30 years ago, Andrew Sharp, the three-year-old son of a friend, was admitted to a hospital in Miami for a tonsillectomy. He never came out of the anaesthetic. Andrew’s mother made the decision to donate his organs for transplant.

Magi says: "My daughter was around the same age as Andrew and I wondered how Andrew’s mother had been able to make what must have been an extremely difficult decision. Although I was a registered nurse, at that time I knew little about organ donation.

"Something about that event resonated in the back of my mind. Years later in 1991 when I was a nurse teacher at the Dorset & Salisbury School of Midwifery & Nursing, John and Margaret Evans, the founders of the British Organ Donation Society (BODY), a peer support organisation for families and individuals involved in organ donation and transplantation, came to talk to intensive care staff about their experience of donating the organs of their 20-year-old son John who was killed in a motorcycle accident. Listening to the Evans’ experiences I had a kind of epiphany. I realised that this subject was not well known about and needed investigation."

Magi was successful in achieving a nursing research studentship from the Department of Health and started a PhD at the University of Southampton in 1993. The work focused on the organ donation experiences of 24 bereaved family members and the organ donation attitudes, knowledge and behaviour of 2,465 UK registered nurses.

This was the seed corn for a programme of research that has gained world recognition. Magi’s Theory of Dissonant Loss has contributed to national and international policy on the care of bereaved families with whom organ donation is discussed. Fittingly, Magi’s PhD is dedicated to Andrew Sharp and his family.

Extensive track record

Magi has an extensive track record of studies in organ and tissue donation and transplantation, end of life care for individuals and families and post-mortem decision making.

Nationally Magi works with the Department of Health as an expert in organ donation, and internationally she is Chair for the Deceased Donation Working Group of the Ethical, Legal and Psychosocial Aspects of Transplantation European Platform [ELPAT]. In 2009, the Royal College of Nursing conducted a series of surveys to ascertain the most influential pieces of nursing research over the last 50 years. Of the 79 papers recorded, five were Magi’s publications.

Her most recent role has seen her appointed as Chair in Clinical Practice and Innovation, a joint post with the University and the Royal Wolverhampton Hospitals NHS Trust. In this role, Magi will help to advance the development of multi-disciplinary research to drive forward innovation and enhanced quality in clinical care.

She explains: "Healthcare needs to be evidence-based so that we give patients the best quality of care possible. The way to gain evidence is to carry out research, expertise which lies within the auspices of the University. The University can support Trust staff to enhance their quality of care by researching with them the questions they identify and what is needed in the clinic."

Interesting research

Professor Sque is currently involved in three interesting research projects. She led a project funded by the British Renal Society titled ‘Life on the list: An exploratory study of the life world of individuals waiting for a kidney transplant’. Magi and her co-investigators found life on the transplant list was about trying to live life as normally as possible, ‘seeking normality’, a circumstance that was enhanced or constrained by certain factors.

"It is the whole idea of keeping hope alive by keeping healthy, so that if a suitable kidney becomes available you’re ready. We also identified that there appears to be some misunderstanding about the transplant list, which is related to individuals’ perceptions of how a list works, i.e. that it is normal on lists to go on at the bottom and to work one’s way up. Clarity and transparency could be increased with a move away from use of the term ‘list’ to an alternative term, such as a ‘register’."

Another ongoing project, funded by the National Institute for Health Research (NIHR), focuses on increasing the acceptability and rates of organ donation among British ethnic minority groups. Magi explains there is a 40% refusal rate among the general public when asked to donate organs from a deceased relative; this rises to 70% within ethnic minority groups. However British ethnic minority groups are over-represented on some transplant lists due to a predisposition to diabetes, which can lead to kidney failure.

Magi states the top reasons why people don’t want to donate a family member’s organs are that they knew their relative didn’t want to donate, or the family don’t like the idea of surgical intervention upon the body of their deceased relative.

"This relates to the theory of ‘gift of life’ or ‘sacrifice’. If asked, 90% of people would probably say they think organ donation is a good thing. The gift of life notion is used regularly to promote the idea of donation, but the context changes markedly when the bereaved family is at the bedside of their loved one. Then donation can appear to be more of a personal sacrifice for both the family and the donor and reasons preventing donation arise."

Barriers

Magi is leading on a Department of Health project seeking to further understand the barriers to organ donation and the factors that affect the decision of the bereaved family.

"What is important to families and often why positive decisions are made about donations is that the family is able to develop a rapport with health professionals. They feel their critically ill relative and themselves have been cared for, not only in intensive care but through the whole hospital experience. For example, if there is an unpleasant incident in Accident & Emergency that has sometimes been enough to put them off the whole idea of donation.

"An important aspect is the respect shown to the potential donor and the care given to the family. It can also be important for the family to receive correspondence from recipients so they know their deceased relative’s donation is recognised, valued and will never be forgotten."

Little research had been carried out into the social and psychological aspects of organ donation prior to Magi’s PhD, meaning there are still many areas to investigate.

Magi says: "When I finished my PhD, I was asked what I was going to do with my time now and I replied that I thought I had enough to keep me busy for a lifetime. The more questions we try to answer, the more questions we raise."

To join the organ donor register visit the website: www.organdonation.nhs.uk