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.
The role of carers in wellbeing interventions for haemodialysis (HD) patients from South Asian backgrounds
To better understand the experience of those who care for South Asian HD patients and to explore similarities and differences with carers of patients who identify with a white heritage. To also explore carer perspectives on wellbeing support for their family member.
Impact of COVID-19 on physical activity in adults with long term conditions living in the UK: a quantitative study
We are conducting a funded research project to better understand the impact of COVID-19 and government restrictions on the physical activity and mental health of adults living with long term conditions in the UK.
ImpRoving the Reporting of ITch using AcceleromeTErs in kidney patients (IRRITATE)
To find out if wearable devices (or ‘accelerometers’; see picture) can help with assessing sleeping problems in people with kidney disease who suffer from itch.
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.
Assessing and reducing the impact of COVID-19 on the wellbeing of people with chronic kidney disease (CKD) receiving in-centre haemodialysis during the outbreak
The aim of the study is to improve support for people with chronic kidney disease (CKD) who need in-centre haemodialysis in the UK during the COVID-19 outbreak.
Pregnancy choices with kidney disease
Engaging and supporting women with Chronic Kidney Disease with pre-conception decision-making (including their experiences of COVID 19): A mixed-methods study
CONVINCE - The comparison of high-dose Haemodiafiltration (HDF) versus Haemodialysis (HD)
The CONVINCE study aims to determine the best possible dialysis treatment by comparing high-dose HDF versus conventional high-flux HD treatment by carrying out a prospective randomised controlled clinical trial addressing clinical endpoints, quality of life and a cost-utility analysis.
COVIDENCE-UK study
Currently, the risk factors, adverse outcomes, impacts on mental and economic wellbeing and the natural history of COVID-19 in the UK population are largely unknown. The COVIDENCE UK Study will collect data from volunteers around the UK to answer scientific questions surrounding COVID-19.
Other research opportunities
The National Institute for Health Research (NIHR) ‘Be part of research’ website lists COVID-19 research opportunities it is funding.
Oxford University is running a large study of potential treatments for COVID-19, called the RECOVERY trial. It is open to kidney patients with COVID-19.
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.
Genomics England is working with the NHS and people who have had COVID-19 to understand whether there are genetic factors that mean that some people experience severe symptoms whilst others experience only mild symptoms.
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
Impact of COVID-19 on physical activity in adults with long term conditions living in the UK: a quantitative study
We are conducting a funded research project to better understand the impact of COVID-19 and government restrictions on the physical activity and mental health of adults living with long term conditions in the UK.
In particular, the aim of this study is to assess the impact of physical distancing/self-isolation/shielding on physical activity behaviour and mental health, as well as barriers/facilitators to physical activity participation.
Study type
Quantitative study
Who is able to participate
Adults with long term conditions (LTCs), like chronic kidney disease, living in the UK.
Inclusion criteria are: 1) adults (aged, 18 years or older); 2) people with one or more than one LTCs; 3) resident in the UK (England, Scotland, Wales, and Northern Ireland); 4) to have a device with internet connection.
Where is the study happening?
Online, so you can participate from home.
Open and close dates of recruitment
April 2021 - 31 July 2021 (with extension possibility)
How do I get involved?
Answering the online survey
Summary
Currently, we are conducting a funded research project to better understand the impact of COVID-19 and government restrictions on the physical activity and mental health of adults living with long term conditions in the UK. The aim of the project is to assess the impact of physical distancing/self-isolation/shielding on physical activity behaviour and mental health, as well as barriers/facilitators to physical activity participation.
This study is an extension of our previous research conducted with the general population during COVID-19 restrictions. Our previous work demonstrated that people who were more physically active during COVID-19 restrictions benefited from better mental health and well-being, however, there was preliminary evidence that people with long-term conditions may have been adversely affected.
With that in mind, we are launching an online survey aimed specifically at adults living with one or more long term conditions in the UK.
Based on our previous research experience, we estimate that the completion of the survey will take an average of 20 minutes per participant.
Has the study received ethical approval? Please provide REC number.
The study has been reviewed and approved by the University of Southampton Research Ethics Committee under reference 63225.
Who is funding the study?
NIHR ARC Wessex
ImpRoving the Reporting of ITch using AcceleromeTErs in kidney patients (IRRITATE)
To find out if wearable devices (or ‘accelerometers’; see picture) can help with assessing sleeping problems in people with kidney disease who suffer from itch.
Study type
Observational pilot study
Who is able to participate?
The research team are looking for people with kidney disease who:
- Are 18 years or older
- Are under the care of a kidney doctor
- Are currently bothered by moderate to severe itching
- Have their own email address
You can not participate if you:
- Have been diagnosed with a sleep disorder, skin condition, Parkinson’s disease or restless legs.
- Have taken sleep medication or other drugs with a sedative effect in the past four weeks
Where is the study happening?
You can undertake all study activities at home. All contact with the research team will be via post, email and phone/zoom. There is no need for you to attend the hospital for any research visits.
Open and close dates of recruitment
Recruitment opens 23 March 2021 and closes 28 May (or when we have recruited 45 participants, whichever comes first)
How do I get involved?
If you are interested in taking part, please contact the research team by emailing Dr Sabine van der Veer on [email protected]
Summary
One in three people with kidney disease are bothered by itchy skin, but many do not discuss this with their care team. Itchy skin can lead to sleeping problems. Researchers and students from the University of Manchester are looking into this problem. They want to know if wearable devices (or ‘accelerometers’; see picture) can help with assessing sleeping problems in people with kidney disease who suffer from itch.
The research involves wearing an accelerometer on your non-dominant wrist for seven nights to record your movement, filling in a daily sleep and itch diary, and completing an online questionnaire. Once you have completed your data collection period, you will receive a shopping voucher to thank you for your contribution.
Has this study received ethical approval?
Yes. It has been approved by the University of Manchester Research Ethics Committee (reference 2021-11340-18075)
Lead investigators
Dr Sabine van der Veer - University of Manchester
Who is funding the study?
Kidney Research UK
More information
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%)
Assessing and reducing the impact of COVID-19 on the wellbeing of people with chronic kidney disease (CKD) receiving in-centre haemodialysis during the outbreak
The aim of the study is to improve support for people with chronic kidney disease (CKD) who need in-centre haemodialysis in the UK during the COVID-19 outbreak.
Study type
This is a mixed-methods longitudinal study involving online questionnaire surveys and optional telephone interviews at baseline and 3-month and 6-month follow-ups.
Who is able to participate?
To take part you must be over the age of 18, currently receiving in-centre haemodialysis treatment, currently living in the UK, and able to understand and speak English.
Where is the study happening?
Across the UK via online questionnaire surveys and optional telephone interviews all done from your own home.
Open and close dates of recruitment
Open now: January 2021 to Autumn 2021
How do I get involved?
Please access the weblink below for more information about the study and guidance on how to take part:
https://derby.qualtrics.com/jfe/form/SV_6zYJmAIsg6RQoUl
Summary
We are looking for people currently having in-centre haemodialysis to take part in a research study to improve support for people with chronic kidney disease (CKD) who need hospital dialysis in the UK during the COVID-19 outbreak. The study involves completing an online questionnaire survey about experiences of in-centre dialysis during the COVID-19 outbreak.
People who complete the survey will then have the option to take part in a telephone interview where one of the researchers will speak with them to gain a more in-depth insight into the responses they gave in the questionnaire and identify what support would be useful and how it should be delivered. We will also conduct follow-up surveys and interviews in 3 and 6 months’ time to find out how CKD patients are managing as the outbreak develops, and we will work with renal organisations to help inform the content and delivery of additional online information, advice and psychological support based on the study findings.
Has this study received ethical approval?
This research study has been ethically approved by the University of Derby Health, Psychology and Social Care Research Ethics Committee (Reference: ETH1920-2748).
Lead investigators
- Professor James Elander, University of Derby
- Ms Romaana Kapadi, University of Derby
- Ms Carol Stalker, University of Derby
- Mr Ian Danton, University of Derby
- Professor Nick Selby, University of Nottingham
- Professor Maarten Taal, University of Nottingham
Who is funding the study?
No funding has been received for this research study.
For further information or to discuss this research study please contact either Romaana Kapadi ([email protected]) or James Elander ([email protected]).
*Please note that the research team are currently working remotely and are therefore only available via email.
Pregnancy choices with kidney disease
Engaging and supporting women with Chronic Kidney Disease with pre-conception decision-making (including their experiences of COVID 19): A mixed-methods study
The aim of this study is to improve support for women with CKD with the complex choices they need to make in relation to pregnancy by:
- Identifying needs and preferences of women of reproductive age with CKD by improving our understanding of how women make decisions about pregnancy, and investigating associations between pregnancy, health, well-being and psychosocial contexts
- Constructing a theoretical model for decision making in relation to pregnancy, an essential first step in the development of a pre-conception ‘Shared Decision Making’ (SMD) intervention for use in clinical practice.
Study type
Mixed methods study utilising surveys and in-depth qualitative interviews, ongoing stakeholder consultation activities with patient and public representatives and a multi-disciplinary intervention development group.
Who is able to participate?
All women with kidney disease who are on dialysis or have a transplant aged between 18 and 50 and living in the UK
Where is the study happening?
Across the UK, via an online survey available at the Cardiff University website
Open and close dates of recruitment
Open now: September 2020 to Spring 2021
How do I get involved
By completing a short online survey. The questions will be tailored to you depending on your current knowledge, needs and circumstances so rest assured your opinion and experience matters. The survey asks about things like; your kidney disease, current circumstances, choices about pregnancy, health and wellbeing, communication with healthcare professionals, information needs, impacts of COVID 19, and your support networks. The whole survey will take approximately 20-30 minutes. Once you have completed the survey, you will be taken to a page with information on organisations and resources that may be of help.
We will also be inviting a small number of women to take part in an informal interview over the phone or online video call. If the answer to this is yes, you can enter your contact details and we may get in touch to arrange to talk at a time and in a way that suits you.
You can also enter your details if you want to be kept updated about the study findings, news and other opportunities to take part in research on this topic.
Summary
Women who have Chronic Kidney Disease (CKD) face complex decisions about becoming pregnant. We know very little about these women’s knowledge of the ways kidney disease may affect family planning and pregnancy, their needs in terms of psychological and social support, and understanding how they weigh up the pros and cons of starting a family whilst living with kidney disease.
In this study, we want to better understand the key factors that influence decision making about pregnancy from women’s perspectives, such as the impact of pregnancy on their health and of their kidney on their pregnancy, pressure from family, risk of passing on an inherited condition, miscarriages, anxiety and depression, feelings of shame and guilt, burden on relationships, and social care needs. We will carry out an online survey and one-to-one interviews with women of childbearing age across Wales, who we can follow up in future research. We will work closely with the Multi-Disciplinary Teams (MDTs) across Wales, including doctors, nurses, midwives, social workers and psychologists, who deliver care and education to women with CKD about family planning, to learn about how they support women with their decision making.
The information we collect will be used to help us design a ‘Shared Decision Making’ (SDM) intervention. Shared Decision Making is a process where Professionals and patients work together to come to informed decisions about future treatment. Health professionals share the best available evidence in an easy to understand way. Patients are encouraged to share what matters most to them in terms of their priorities, concerns, lifestyle, personal circumstances, and preferences. Encouraging Shared Decision Making could help engage women and better support them with the complicated and emotional decisions they need to make about family planning and pregnancy.
Has this study received ethical approval? Please provide REC number.
Yes. REC Number: 20/WA/0157
Lead investigators
Dr Sian Griffin Consultant Nephrologist and Transplant Physician, Cardiff and Vale University Heath Board,
& Dr Leah Mc Laughlin Bangor University, School of Health Sciences, Wales Kidney Research Unit
Who is funding the study?
The Kidney Patient Research Partnership, Kidney Care UK & BRS Joint Grants Programme 2019.
CONVINCE - The comparison of high-dose Haemodiafiltration (HDF) versus Haemodialysis (HD)
The CONVINCE study aims to determine the best possible dialysis treatment by comparing high-dose HDF versus conventional high-flux HD treatment by carrying out a prospective randomised controlled clinical trial addressing clinical endpoints, quality of life and a cost-utility analysis.
Study type
Clinical trial
Who is able to participate?
A subject must meet ALL of the following criteria in order to participate:
- Signed and dated written Informed Consent Form obtained from the subject or his/her guardian or in accordance with local regulations.
- Male or female aged ≥ 18 years.
- Diagnosed with ESKD.
- Established on haemodialysis for 3 months or longer.
- Likely to achieve high-dose HDF (≥23 L in post-dilution mode), according to the protocol (Appendix I).
- Willing to have a dialysis session with duration of ≥ 4 hours, three times a week.
- Understands study procedures and is able to comply.
Where is the study happening?
Countries within Europe
Open and close dates of recruitment
November 2018; early 2021
How do I get involved?
- study progress can be viewed on the Convince Trial website
- some UK centres are taking part in the study
- and you could ask your local centre whether they are one of the sites.
Summary
Information about end-stage kidney disease
End-stage kidney disease
End stage kidney disease (ESKD) ranks among the most severe chronic, non-communicable diseases world-wide.
Patient quality of life and outcomes
Despite improvements in dialysis machine and dialyzer technology, and the introduction of newer drugs, the survival of patients with kidney failure treated by dialysis remains high, and improvement in survival has not improved as much when compared to other chronic conditions, including some of the more common cancers.
In addition, many kidney dialysis patients feel tired and lack energy. This impacts on their quality of life, and the rates of self-reported depression are increased in kidney dialysis patients.
Dialysis
Over the past decade, an alternative to standard haemodialysis (HD) has become available ‒ haemodiafiltration (HDF). HDF uses the same dialyser, and dialysis water, but differs from standard HD, as the dialysis machine takes more fluid away from the blood as it passes through the dialyser, but then replaces this fluid by returning the same amount with dialysis water, so the additional amount of fluid removed is balanced by the fluid replaced.
HD removes water soluble toxic compounds that accumulate in patients with kidney failure mainly by diffusion, and a smaller amount by convection. HDF differs by increasing the amount removed by convection. Diffusion is very efficient at removing small molecules, but not so good at removing larger molecules, whereas convection is more efficient at removing larger molecules.
Although on one hand HDF improves the range of water-soluble toxic compounds removed, unlike the healthy kidney, neither HD nor HDF can offer selective removal of molecules, so both treatments can potentially lead to the loss of important molecules, such as vitamins and some proteins. So, although HDF increases the range of water-soluble toxic compounds removed, it could also lead to an increased loss of important molecules.
Studies on Haemodialysis & Haemodiafiltration
There have been several studies comparing HD and HDF, but many of these have been too small to be able to come to any firm conclusion as to whether HD and HDF are equivalent treatments, or one is better than the other. Statisticians have tried to combine these studies to get enough patients to compare HD and HDF, but once again these analyses have failed to demonstrate a difference. However, the studies included in these analyses often differ, so making comparisons difficult.
As such, there is current uncertainty as to whether HDF offers any benefit over standard HD, or whether treatments are equivalent, or if HD is better for patients than HDF.
The CONVINCE study has been designed to answer whether HD or HDF offers patients a better treatment, or whether treatments are equivalent, by enrolling a large number of kidney dialysis patients, currently dialysing in Europe.
The CONVINCE study will collect information from patients about quality of life, as well as information about hospital admissions and patient survival.
Results from the CONVINCE study will be used to:
Develop best practises and new guidelines for doctors and dialysis centres on the most effective and efficient type of dialysis for patients with kidney failure.
Has this study received ethical approval?
13/04/2018 candidate number 28748
Netherlands Trial register (NTR) 7138
Info on Trial Register website
Lead investigators
- Peter J. Blankestijn, University Medical Center Utrecht
- Mark Woodward, The George Institute for Global Health, Oxford
- Andrew Davenport, University College of London
- Diederick E. Grobbee, Julius Clinical
- Bernard Canaud, Fresenius Medical Care Deutschland GmbH
- Fernando Macario, Diaverum Renal Services Group
- Giovanni Strippoli, University of Bari Aldo Moro
- Claudia Barth, B. Braun Avitum AG
- Mathias Rose, Charité Universitätsmedizin Berlin
Who is funding the study?
European Union's Horizon 2020 research and innovation programme
More information
COVIDENCE-UK study
Aim of the study
Currently, the risk factors, adverse outcomes, impacts on mental and economic wellbeing and the natural history of COVID-19 in the UK population are largely unknown. The COVIDENCE UK Study will collect data from volunteers around the UK to answer scientific questions surrounding COVID-19.
Study type
Online questionnaire study
Who is able to participate?
You can take part if you are 16 or over and living in the UK.
Where is the study happening?
It is all done online from your own home
Open and closing dates of recruitment
The study will be ongoing for five years and you can sign up at anytime, although the earlier you sign-up the more valuable data can be collected.
How do I get involved?
You can sign up on the study website
Summary
The COVIDENCE UK national research study is designed to find out whether people with conditions such as kidney disease may be at increased risk of coronavirus disease. The researchers are looking to recruit a broad mix of people from all over the UK, including those who have NOT had coronavirus infection, and those who HAVE already had proven or suspected coronavirus infection.
The study will involve filling in an on-line questionnaire to collect information about your lifestyle, diet, longstanding conditions and prescribed treatment. Completion takes 30-60 minutes. After that, you will be contacted monthly via email to report possible symptoms of coronavirus disease. The data you provide will be linked to your medical records, to allow the study team to investigate whether coronavirus infection may affect long-term health.
Has this study received ethical approval?
This research has been ethically approved by Leicester South Research Ethics Committee (ref 20/EM/0117).
Lead investigators
Professor Adrian Martineau – Queen Mary University of London
Who is funding the study
Other research opportunities
The National Institute for Health Research (NIHR) ‘Be part of research’ website lists COVID-19 research opportunities it is funding.
Oxford University is running a large study of potential treatments for COVID-19, called the RECOVERY trial. It is open to kidney patients with COVID-19.
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.
Genomics England is working with the NHS and people who have had COVID-19 to understand whether there are genetic factors that mean that some people experience severe symptoms whilst others experience only mild symptoms.
The role of carers in wellbeing interventions for haemodialysis (HD) patients from South Asian backgrounds
Aim of the study
- To better understand the experience of those who care for South Asian HD patients and to explore similarities and differences with carers of patients who identify with a white heritage.
- To explore carer perspectives on wellbeing support for their family member.
Study type
Qualitative: 1-1 Interview
Who is able to participate?
Carers of patients receiving HD who are themselves over the age of 18 years and identify with either a South Asian or white ethnicity.
Where is the study happening?
A one-to-one interview will be carried out remotely via telephone or on an online video conferencing platform as per carer preference. The interview will be carried out by (1) either a researcher from a South Asian background and if you prefer either in Gujarati, Urdu or Punjabi, or (2) by a member of the research team in English.
Open and close dates of recruitment
Open now until 31st August 2021.
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: Dr Emily Beadle
Email: [email protected]
If you do decide to take part, as well as receiving the study information sheet, you will be asked to sign a consent form. This is just so that we can be sure that you have understood the information about the study and your role as a participant. Agreeing to join the study does not mean that you have to complete it.
The researcher will then arrange a convenient time and date with you for the interview. During the interview you will be asked questions related to your role as a carer, what support you think is useful for HD patients and you yourself, and we will also seek your views on how care needs may have been affected by the pandemic.
With your permission, the interview will be recorded to help with transcription for data analysis. The recordings and all transcripts will be stored securely and deleted upon completion of the study. Only anonymised transcripts may be retained for up to 5 years.
Summary
Carers play an important role in the health and wellbeing of kidney patients. In this research, we are interested to learn more about the experiences of carers of family members who are receiving haemodialysis (HD), particularly how this role may have changed over the COVID-19 pandemic. We also want to find out more about carers views on the wellbeing support needs of their family member, and how they might themselves be involved in interventions designed to help.
This study will provide important knowledge that will be taken on board in our work that focuses on the development of interventions to support psychological wellbeing for HD patients.
The study involves 1-1 interviews. We are particularly inviting carers from South Asian backgrounds who identify as Gujarati, Punjabi or Pakistani to take part. We are also keen to invite carers from white ethnicities to contribute too so that we can explore how carer experiences and views are similar and where they differ.
South Asian carers can be helped to take part in Gujarati, Punjabi or Urdu as per their preference. All carers are able to take part in English.
We will find out key themes within the data and use them to feed into the co-design with patients and carers of an intervention that feels culturally responsive to the needs of patients and their families.
Has this study received ethical approval? Please provide REC number.
This study has received ethical approval by: The University of Hertfordshire Health, Science, Engineering and technology Ethics Committee with Delegated Authority.
The UH protocol number is LMS/SF/NHS/02917
The study also has ethics approval from the REC when recruitment of carers was through the NHS (though does not apply here): 18/NW/0433
Lead investigators
Dr Shivani Sharma, [email protected] (and Professor Ken Farrington).
Who is funding the study?
The British Renal Society and British Kidney Patients Association