In 2019, we conducted in-depth interviews with six kidney transplant patients to learn more about their experiences going through kidney transplantation.
Kidney transplantation is a major surgery and can be a life-changing experience, and we were particularly interested in hearing about people’s experiences of emotional and psychological support throughout their transplant journey.
Although we spoke to a small number of people, similar themes emerged across all the interviews we conducted. It was clear from all participants’ stories that their transplant journeys had a strong psychological, emotional, physical, social, and sometimes financial impact on their lives. In many cases, they navigated this process without being signposted to formal and professional help and support, even though everyone we spoke to expressed that they felt this would benefit from additional help and support.
We were able to pull four key themes out from the interviews we conducted. These were:
- Building and discovering a sense of identity, purpose, and lifestyle in the face of uncertainty and changes;
- Lack of awareness and understanding from others, including the healthcare system, that exacerbates struggles and issues;
- Lack of clear and compassionate communication from the healthcare system; and
- Lack of appropriate emotional support & signposting.
Read our report in full for an in-depth exploration of these themes, and to see our recommendations for how support for kidney transplant patients can be improved.
We'd like to thank all our participants in this project for their time and their openness in sharing their experiences with us.
This report was researched and written prior to the 2020 Coronavirus pandemic. We are aware that the pressures and challenges that the health and social care systems face have changed drastically and rapidly over recent weeks, and that this will affect how well services are able to respond to our reports and feedback.
We felt, however, that it was important for us to still release this report on the experiences of kidney and kidney and pancreas transplant patients. We believe that our findings are still important, and still needed to be acted on. Given that transplant patients, as a group, face a serious risk from coronavirus, we think that some of our findings, particularly around emotional support and access to healthcare whilst immunocompromised, are particularly relevant in this current moment. We would like to see local health and care systems working to ensure that those at risk are kept informed, safe, and are provided with support that is suitable to them during this difficult time.
Whilst we will send this report out to local healthcare providers and commissioners, we will be sure to re-send it once the pandemic has eased, to ensure that the recommendations that we have made in this report are being followed up on. We would like to make sure the contributions and time of our participants are not forgotten.