We have listed details of studies in which you may be interested in participating. We will add to this as we hear of new research opportunities. The projects and study teams are independent of Kidney Care UK and it is best to contact the teams directly for more information about each study. All studies have received independent ethical approval.
Currently available opportunities
Self-management for young adults with chronic kidney disease
A person-centred, theory-based self-management intervention specific to Young Adults (YAs) living with Chronic Kidney Disease (CKD) stages 1 to 5. A Rapid Evidence Assessment (REA) and mixed-methods study.
What were people’s experiences of the winter power cuts?
Did you have a power cut for two or more days because of a storm this winter (November 21 – February 22)?
A team of researchers from King’s College London are looking for participants to interview over a video or telephone call about their experiences of the power cut(s). Anyone who is selected to take part will receive a £30 Amazon voucher for their time.
Support experiences of people who are helping kidney patients
A team of researchers wants to develop a new online emotional support programme for people who are helping someone with a kidney condition. In order to develop the programme they would like to interview friends and family of kidney patients about their experiences of receiving support and their thoughts about online emotional support programmes.
Exploration of caregiver experiences of conservatively managed end-stage kidney disease to inform development of a psychosocial intervention: The ACORN Study
The aim of this study is to explore the experiences and unmet needs of informal carers of patients with ESKD receiving conservative management, in order to inform the development of a psychosocial intervention.
Why do people say “no” to a kidney transplant? Understanding patient decision making and choice. A constructivist grounded theory study.
In this study we want to better understand how people with kidney failure make choices about choosing not to have a kidney transplant.
Understanding how different people living with kidney disease have been affected by remote services after the Covid-19 pandemic
This study is trying to understand how appointments with a kidney team (by phone or video call) have affected different people living with or at risk of kidney conditions.
Other research opportunities
The National Institute for Health Research (NIHR) ‘Be part of research’ website lists Covid-19 research opportunities it is funding.
The Join Zoe COVID Symptom Study asks people to report on their health on a daily basis via a smartphone app. This will allow the researchers to track any symptoms of Covid-19 that people are experiencing and understand what some of the early symptoms could be.
PROTECT, an existing long-term online study looking at ageing, has opened a new arm to study the impact of Covid-19 isolation on the physical and mental health of people aged over 50, and find new ways to support them.
Self-management for young adults with chronic kidney disease
A person-centred, theory-based self-management intervention specific to Young Adults (YAs) living with Chronic Kidney Disease (CKD) stages 1 to 5. A Rapid Evidence Assessment (REA) and mixed-methods study.
This research aims to address the current CKD self-management by examining the key elements of the CKD self-management interventions identified in the existing literature (phase 1 – REA literature review), as well as, identifying existing self-management behaviours among YAs living with CKD through collection of qualitative (individual interviews and/or focus groups) and quantitative (questionnaire-based study) data (phase 2).
The findings from both phases will be beneficial in informing future research in the self-management interventions field, particularly for YAs with CKD stages 1-5. It is also aimed that the findings from this first stage (phase 1 and 2) will inform the development of an appropriate person-centred, theory-based self-management intervention for YAs living with CKD stages 1 to 5 (phase 3). Finally, the research may also include phase 4, which will aim to assess the feasibility, accessibility, and potential effectiveness of the proposed self-management intervention through collection of qualitative and quantitative data.
Study type
Mixed-methods study
Who is able to participate?
4 groups of participants:
Young adults (males and females, between 18 to 35 years of age, diagnosed with CKD stages 1 to 5), their parents/guardians, caregivers, and health and social care professionals.
Where is the study happening?
Participants will be able to choose to complete the questionnaires at home either online or via pen and paper. Dependent on COVID-restrictions, they could also complete the questionnaires either at the Kidney Wales office in Cardiff or the Swansea University Singleton campus.
Participants may be invited to take part in a focus group or individual interview, depending on their preference. This could be from home (telephone or online) or it could also take place either at the Kidney Wales office in Cardiff or the Swansea University Singleton campus. However, if they do not wish to take part in the interviews, they can still complete the above-mentioned questionnaires.
Open and close dates of recruitment
Up to 6 months
Summary
This research is a multi-phase study involving four phases. Phases 1 involves Rapid Evidence Assessment (REA) literature review to establish key elements of the existing CKD self-management interventions. Phase 2 (the current study) involves the collection of quantitative data (questionnaire-based study) and qualitative data (a focus group or individual interview). Phase 2 is conducted in order to identify the gaps in self-management interventions for YAs living with CKD stages 1 to 5, which need to be addressed. Whereas, phase 3 involves the development of a person-centred, theory-based self-management intervention for YAs living with CKD stages 1 to 5, based on findings from phase 1 and 2. Finally, phase 4 aims to assess the feasibility, accessibility, and potential effectiveness of the proposed self-management intervention through collection of qualitative and quantitative data.
Has this study received ethical approval?
Yes. ics Committee name: HRA and Health and Care Research Wales (HCRW)
Reference number: 19/EM/0339.
Lead investigators
- Paula Krawiec (researcher)
- Professor Jaynie Rance (lead supervisor)
- Professor Paul Bennett (2nd supervisor)
Who is funding the study?
Swansea University (50%) and Kidney Wales Foundation (50%)
How do I get involved?
If you are willing to contribute your views, please contact us and we will be able to provide you with further information.
Researcher: Paula Krawiec
Email: [email protected]
What are people's experiences of the winter power cuts?
Aim of the study
To find out about people’s experiences during the storm-related power cuts. Were there difficulties during these periods? What support would be better in future power cuts?
The team aims to learn lessons from these events about what did and didn’t help. In particular, they want to look at how people with a range of different needs experienced the power cut(s) so that they can assess whether people’s disabilities and/or health conditions affect the needs they have in these situations.
You will be given £30 for taking part. This will be as an Amazon or other shopping voucher or a charity donation to the British Red Cross.
Study type
A one-to-one interview which will take place via an online video call or via a telephone call. This will last roughly 45-90 minutes, with additional comfort breaks. You can communicate via the chat function if you prefer.
Who is able to participate?
Participants must be aged 18 or over, can speak (or sign) English fluently, live in the UK and have experienced power cuts for 2 or more consecutive days because of a winter storm. The team are particularly interested in: Storm Arwen, Storms Malik & Corrie, Storm Dudley, Storm Eunice and Storm Franklin.
The researchers would particularly like to hear from people with a range of needs which would include people undergoing home dialysis therapies.
How do I get involved
To take part, email [email protected] saying ‘I would like to take part in your research’ and please state whether the following apply to you:
- You are aged 18 or over
- You can speak or sign English fluently
- You had a power cut for 2+ consecutive days between November 2021 and February 2022 because of a storm.
Postal address: Poppy Ellis Logan, Department of Psychological Medicine, KCL Weston Education Centre, 10 Cutcombe Road, London, SE5 9RJ
Has this study received ethical approval?
Yes - Ethical Clearance Reference Number: HR/DP-21/22-27205
Who is funding the study?
This project is being funded by King’s College London.
Future publication
The results of the project will be summarised in Poppy Ellis Logan’s PhD thesis, which will be published after 2024 and accessible via the King’s Research Portal. Poppy will also try to publish it in a peer reviewed journal.
More information
For more information, please visit www.tinyurl.com/powercuts where you can find out more about the project, the interviews and the team.
Support experiences of people who are helping kidney patients
Aim of the study
To to develop an online emotional support programme for family members, partners, and friends of people with kidney conditions.
Study type
Qualitative interview study (over video call)
Who is able to participate?
Anyone who is 18 years old or older, living in the UK and a family member, partner or friend of someone living with any kidney condition (who is also 18 years old or older).
Where is the study happening?
Remotely via video call
Open and close dates of recruitment
Open for recruitment since April 2022. Recruitment will be closed around March 2023
How do I get involved
If you are interested in taking part, please email [email protected]
Summary
Many family members, partners, and friends of people living with a kidney condition experience challenges. Researchers at the University of Exeter want to develop a new online emotional support programme to support people who are helping someone with a kidney condition.
To make sure the programme they develop is useful and acceptable to the people who will use it, they want learn about:
- Your experiences of receiving support, for example from health professionals, or friends and family
- Your thoughts about online emotional support programmes
The interview will take place via video-call (e.g. Microsoft Teams or Zoom). Interviews will take 45-60 minutes..
Has this study received ethical approval? Please provide REC number.
Ethical approval has been obtained from the University of Exeter, Psychology Research Ethics Committee (Reference: 513911)
Lead investigators
Lead researcher: Chelsea Coumoundouros
Supervised by: Professor Paul Farrand and Dr. Joanne Woodford
Who is funding the study?
This research project is being funded by the European Union’s Horizon 2020 research and innovation program under the Marie-Sklodowska Curie grant agreement No 814072.
Exploration of caregiver experiences of conservatively managed end-stage kidney disease to inform development of a psychosocial intervention: The ACORN Study
Aim of the study
The aim of this study is to explore the experiences and unmet needs of informal carers of patients with ESKD receiving conservative management, in order to inform the development of a psychosocial intervention.
Study type
Qualitative study (semi-structured interviews and focus groups)
Who is able to participate?
People over the age of 18 who provides, or has provided, informal care to a person who has end-stage kidney disease and is receiving conservative management (also known as supportive care).
We are recruiting people who are currently informal carers, or who were previously carers but their loved one has died in the past 2-24 months.
Where is the study happening?
The study is currently running in the Northern and Western Health and Social Care Trusts in Northern Ireland, and the Royal London Hospital in Whitechapel. However, we welcome recruits from anywhere in Northern Ireland or England
Open and close dates of recruitment
Recruitment opened in September 2022 and will be running until March 2024.
How do I get involved
Contact Claire Carswell at [email protected] or Gladys Laurente at [email protected]
Summary
Kidney failure can impact significantly on the mental and physical health of both patients and their informal carers. Treatment options include kidney replacement therapies such as transplant or dialysis, however people who are frail, elderly and who have multiple conditions may not live any longer if they choose to have dialysis. An alternative option to
is conservative management (CM), where patients choose not to have dialysis, instead focusing on a palliative approach to care where symptom management, psychosocial and spiritual support are the priorities.
Patients who choose conservative management often receive most of their care from informal carers such as family and friends. Therefore, informal carers of patients with kidney failure who are receiving conservative management may have their own support needs that must be addressed. However, we don’t know much about the experiences and opinions of informal carers of patients receiving conservative management, particularly when their loved one is approach the end of life. As a result, we don’t know what support they need and how it should be provided.
Therefore, the aim of the ACORN study is to explore the experiences of informal carers by carrying out semi-structured interviews across Northern Ireland and England. We will also carry out focus groups with both renal healthcare professionals and informal carers. Towards the end of the study we will hold national workshops where key stakeholders will contribute to the development of a psychosocial intervention, which will ultimately aim to support the needs of informal carers.
Has this study received ethical approval? Please provide REC number.
Ethical approval has been obtained, reference: 22/EE/0089
Lead investigators
Lead investigators: Professor Helen Noble at Queen’s University Belfast.
Who is funding the study?
Marie Curie Research Grants.
More information
Why do people say “no” to a kidney transplant? Understanding patient decision making and choice. A constructivist grounded theory study.
Aim of the study
In this study we want to better understand how people with kidney failure make choices about choosing not to have a kidney transplant.
Study type
Qualitative study inviting people to take part in an individual interview – which can take place at home, local renal unit (with their permission), telephone or video.
Who is able to participate?
We would like to hear from anyone who has decided they do not want a kidney transplant when they would otherwise be suitable
Adults over 18 who have chosen not to have a kidney transplant
Where is the study happening?
NHS health boards in Wales (Betsi Cadwaladr, Swansea Bay and Cardiff and Vale University Health Boards in Wales)
The study is being advertised by third sector organisations (kidney community charities and kidney patient organisations) to promote the study widely across United Kingdom
Open and close dates of recruitment
July 2022 until 30th April 2023
How do I get involved
Contact Emma Jones PhD student at Bangor University
- Email: [email protected]
- Phone: 07522627230
Summary
Kidney transplantation offers significant benefits for people with kidney disease by improving quality of life, providing freedom from dialysis, and reducing co-morbid complications associated with being on dialysis. However, little is known about the reasons why some people with kidney disease decline kidney transplantation when they are otherwise medically suitable. A comprehensive understanding of the experiences and factors influencing decision-making is critical to developing education and renal services for people living with kidney disease.
Has this study received ethical approval? Please provide REC number.
Ethical approval has been obtained, NHS Ethics ID 313751
Lead investigators
Emma Jones: PhD student
The study organisation is overseen by Jane Noyes who is a Professor in Health and Social Services Research and Child Health at Bangor University and is supervising Emma on behalf of Bangor University (and Dr Kate Shakespeare Senior Clinical Psychologist, Betsi Cadwaladr University Health Board and Dr Leah Mclaughlin Wales Kidney Research Unit, Bangor University are supervisors).
Who is funding the study?
KESS 2 East BUK2E040
Kidney Wales Charity (Registered Charity Number: 700396)
Betsi Cadwaladr University Health Board (BCUHB) BCUHB Friends of Renal Care (Number 1138976) and Kidney Patient Association (Number: 1120824) as well as a third Patient Endowment fund
Wales Kidney Research Unit (WKRU) non-financial support.
More information
Understanding how different people living with kidney disease have been affected by remote services after the Covid-19 pandemic
Aim of the study
We are trying to understand how appointments with your kidney team (by phone or video call) have affected different people living with or at risk of kidney conditions. The project will be used to:
- To understand what works well and what does not work well, when having your appointment by telephone or video call.
- To create some resources for staff and patients to improve the way in which telephone and video appointments are carried out.
Study type
Qualitative (one to one and group discussions with patients)
Who is able to participate?
You are being asked to take part in this project if you:
- Have a kidney condition or you are at risk of having a kidney condition, for example if you have diabetes or high blood pressure)
And
- Identify with one or more of the following groups:
- Young people aged 18 – 30 years.
- Persons with hearing and/or sight problems.
- Persons living with a mental health condition.
- Persons with learning disabilities/differences
- Persons experiencing homelessness.
- Persons from ethnic minority groups: - African, Caribbean, Asian or mixed-race heritage.
Where is the study happening?
The discussion will take place in-person or online, dependent on what you feel most comfortable with
Open and close dates of recruitment
February 2023 until May 2023
How do I get involved
To take part, you can get in touch with project assistant Patricia, who is based at London South Bank University.
Call/WhatsApp: 07966219978
Email: [email protected]
Summary
The project is being led by Professor Nicola Thomas who is a kidney nurse. We are inviting people living with or at risk of kidney disease to take part in this project to understand how appointments by telephone or video call (also called remote care) has affected people from different groups, for example people with a hearing problem, people with learning disability or people from different ethnic groups.
The project will be used to:
- To understand what works well and what does not work well, when having your appointment by telephone or video call.
- To create some resources for staff and patients to improve the way in which telephone and video appointments are carried out.
If you decide to take part, you will be contacted by Patricia Tum from London South Bank University to arrange a time for you to take part in a discussion, either on your own or with other people. The discussion will take place in-person or online, dependent on what you feel most comfortable with. If you are in a group, this will take around 60 minutes. If you are on your own, the discussion will last around 30 minutes.
You will be asked some questions about your experience of telephone or video calls from your healthcare team during the pandemic.
If you choose to take part, you will be given £10 voucher as a thank you for your time and effort in the project. Once all the information from the project has been written up into one report, we will share this with you and healthcare teams around the country.
Has this study received ethical approval? Please provide REC number.
Yes, we have approval from the Ethics Committee of London South Bank University.
ETH2223-0101
We do not need REC approval as we are not contacting people via the NHS.
Lead investigators
Professor Nicola Thomas
Who is funding the study?
Kidney Care UK