Many researchers have begun vital work to understand the impact of COVID-19 on all those affected by kidney disease. The results of these studies can be used to better understand how to get the right support in place for people with kidney disease during the outbreak and afterwards. It is possible to join many of these studies from home.
We have listed details of these and other 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
PERCEIVE-KTR
We're doing this study because we want to find about how people with a functioning kidney transplant think and feel about themselves. We would like to know about a Variety of topics, such as:
- How you eat, and think about food
- How kind you are to yourself when you’re going through a difficult time
- How you think and feel about your body
We want to explore whether our thoughts and emotions have an effect on our physical health.
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.
Development of a support programme for care partners (e.g. family and friends) of people living with a kidney condition
This study aims to develop a new programme that will provide support to care partners (e.g. family, friends, colleagues, neighbours) who provide unpaid care, help, and support to someone living with a kidney condition.
Optimising routine collection of electronic patient-reported outcomes (extension)
This study aims to better understand why older people and people who live in deprived areas are less likely to use digital health technologies such as ePROs, and what would make these technologies more accessible and easier to use.
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.
PERCEIVE KTR
We're doing this study because we want to find about how people with a functioning kidney transplant think and feel about themselves. We would like to know about a variety of topics, such as:
- How you eat, and think about food
- How kind you are to yourself when you’re going through a difficult time
- How you think and feel about your body
We want to explore whether our thoughts and emotions have an effect on our physical health.
Study type
Online survey
Who is able to participate
Two groups of people can participate:
- People who are living with a kidney transplant with a kidney function of 15% or more (i.e. an eGFR of 15 or more)
- People who do not have any type of kidney disease (to the best of their knowledge)
Where is the study happening?
On the Leicester University website
Open and close dates of recruitment
26 July 2021 to 31 August 2022
How do I get involved?
Go to the study link on the Leicester University website
Summary
We would like to find out what sorts of things affect the health of people who have had a kidney transplant. We want to use what we find to help people who have had a kidney transplant to live happier and healthier lives.
Has the study received ethical approval? Please provide REC number.
Has received ethical approval from the University of Leicester’s Medicine and Biological Sciences Research Ethics Committee (Ref: 26219-rjl48-ls:healthsciences).
Who is funding the study?
Economic and Social Research Council
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]
Development of a support programme for care partners (e.g. family and friends) of people living with a kidney condition
Aim of the study
We want to develop a new programme that will provide support to care partners (e.g. family, friends, colleagues, neighbours) who provide unpaid care, help, and support to someone living with a kidney condition. Tell us what you would want to have in a support programme in our online survey.
Study type
Anonymous online survey
Who is able to participate?
Anyone who is:
- 18 years old or older
- Providing unpaid care, help, and/or support to someone living with any kidney condition who is also 18 years old or older
- Living in the UK
Unpaid care, help, and/or support can include many things like:
- Helping your friend/family member around the house with cooking, cleaning, shopping, etc.
- Helping with your friend/family member’s medical care (e.g. being in touch with their medical care team, getting prescriptions for them, helping with their medical care (e.g. home dialysis), going with them to medical appointments)
- Giving your friend/family member emotional support (e.g. listening to their concerns, helping them with feelings of worry or stress)
Where is the study happening?
Online
Open and close dates of recruitment
Mid-January to end of May 2022
How do I get involved
The survey and more information can be found here.
Summary
Many people providing unpaid care, help, and support to someone with a kidney condition, who we also call care partners, experience challenges during this time. To support people who are providing unpaid care to someone with a kidney condition cope with some of the challenges they experience, we would like to develop a new support programme.
To make sure the programme we develop is useful and acceptable to the people who will use it, we have created an online survey to learn about:
- What it’s like to provide unpaid care, help, and support to someone with a kidney condition and,
- What you would want to have in a programme that could provide support to others who provide unpaid care, help and support to someone with a kidney condition
The online survey is anonymous and we expect it will take around 15-20 minutes for you to complete.
Has this study received ethical approval? Please provide REC number.
Ethical approval has been obtained from the University of Exeter, Psychology Research Ethics Committee
Lead investigators
Chelsea Coumoundouros
Email: [email protected]
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.
More information
Optimising routine collection of electronic patient-reported outcomes (extension)
Aim of the study
To better understand why older people and people who live in deprived areas are less likely to use digital health technologies such as ePROs, and what would make these technologies more accessible and easier to use.
Study type
Qualitative interview study
Who is able to participate?
People with chronic kidney disease who are 70 years of age or older AND/OR live in a deprived area
Where is the study happening?
Remotely via video call or over the telephone
Open and close dates of recruitment
Until Monday 31 October 2022
How do I get involved
If you are interested in taking part, please contact the research team by emailing or calling Helen Chadwick: [email protected], 0161 306 7767
Summary
Researchers from the University of Manchester are developing a program called OPT-ePRO to help support kidney patients with using digital health technologies, including electronic patient-reported outcomes (ePROs).
Digital health technologies are used to treat patients and collect and share a person's health information. Examples of digital health technologies include, virtual healthcare appointments, mobile health apps, wearable health devices, and ePROs. ePROs are online questionnaires for patients to report symptoms and how their condition affects their quality of life.
The purpose of this research study is to better understand why older people and people who live in deprived areas are less likely to use digital health technologies such as ePROs, and what would make these technologies more accessible and easier to use.
The research involves an interview lasting 45-60 minutes, and can be done by telephone or video call. You will also be asked to complete two different questionnaires to assess your digital skills and your ability to understand information about your health.
Once you have completed the interview, you will receive a Love2Shop voucher or an Amazon voucher to thank you for your contribution.
Has this study received ethical approval? Please provide REC number.
22/NW/0127
Lead investigators
Principle investigator: Dr Sabine van der Veer
Co-investigator: Helen Chadwick
Who is funding the study?
The Health Foundation