Heart Failure Carer Support Programme: Implementation Testing in the UK.
Heart failure is common in the UK, and many patients rely on unpaid family carers who often feel unprepared and unsupported. This can negatively affect their own health. The HEart faiLure carer support Programme (HELP) is a new initiative, developed with carers, to help them look after themselves and the person they care for. This study aims to find the most effective way to offer HELP throughout the UK. It will also evaluate how the programme impacts the wellbeing of both carers and patients. Heart failure nurses will deliver HELP to around 180 carers and patients across three UK locations. The programme involves six online educational sessions, a booklet, and a website. Researchers will assess its effects on hospital visits, quality of life, and carer burden.
At a glance
What is this study about?
This study, called the Heart Failure Carer Support Programme: Implementation Testing, focuses on an important area of care for people living with heart failure in the UK. Many individuals with heart failure depend on unpaid support from family and friends, known as carers. These carers often find themselves without the necessary preparation or support for their significant role, which can unfortunately lead to problems with their own mental and physical health.
The HEart faiLure carer support Programme (HELP) is a new initiative designed specifically for these carers. It's unique because it was developed alongside carers of heart failure patients, with the aim of equipping them with tools and information to manage both their own wellbeing and the care of the person they look after. This study is testing the HELP programme to figure out the best way to make it available to all carers across the UK.
Ultimately, researchers want to understand how effective HELP is. They will be looking at its impact on both the carers and the patients they support, hoping to improve the quality of life for both groups. The findings from this study will be crucial in developing a robust plan to roll out HELP nationwide, ensuring more carers get the vital education and support they need.
Key takeaways
- A study testing a new support programme (HELP) for heart failure carers.
- Aims to find the best way to deliver support across the UK.
- Involves online educational sessions and resources.
- Looks at benefits for both carers and patients.
- Participation includes weekly sessions and follow-up questionnaires.
- Developed with input from carers themselves.
Who may be eligible?
This study is looking for both carers and the heart failure patients they support. For carers, you need to be 18 or older, able to use a computer or similar device, and comfortably take part in conversations and read materials. You must be providing regular, unpaid care for someone with a diagnosed heart failure condition who is currently receiving treatment and experiencing symptoms, or has needed medical attention for their heart failure in the last six months. You also need to be able to speak and understand English.
For patients, you must also be 18 or older, able to comfortably talk with others and read. You need to have a clinical diagnosis of heart failure, be on standard treatment, and either have heart failure symptoms or have needed medical attention for your heart failure in the past six months. Crucially, you must be receiving regular, unpaid support from a loved one or friend, and this carer must agree to take part in the study.
Unfortunately, if you are under 18, or if you are unable to give consent (agree to take part), you won't be able to join the study. Also, patients whose carers decline to participate won't be eligible.
- Are you 18 or older?
- Do you provide unpaid care for someone with heart failure?
- Does the person you care for have heart failure symptoms or needed medical help recently?
- Can you comfortably use a device like a computer and read English?
- As a patient, is your carer willing to take part in the study?
This is a guide only — the research team will confirm whether you can take part.
What does participation involve?
If you decide to take part, heart failure nurses will deliver the HELP programme to you. This involves six online educational support sessions, each lasting about an hour, which will be held weekly. You'll also receive an educational booklet and access to a website that offers extra support and advice. Throughout the study, you'll be asked to provide information by completing questionnaires and potentially taking part in interviews. This helps researchers understand how HELP is affecting you and the person you care for, and how best to run the programme. Information will be collected at the start, during the programme, immediately after the six weekly sessions, and then again six months later. The total duration of your participation, including follow-up, will be around 7.5 months.
Potential risks and benefits
Locations (5)
- Royal Victoria HospitalBelfast, United Kingdom· Not yet recruiting
- Ulster HospitalBelfast, United Kingdom· Not yet recruiting
- Craigavon Area HospitalCraigavon, United Kingdom· Not yet recruiting
- Glasgow Royal InfirmaryGlasgow, United Kingdom· Recruiting
- King's College HospitalLondon, United Kingdom· Not yet recruiting
Common questions
What is 'heart failure'?
Heart failure means your heart isn't pumping blood as well as it should. It can lead to symptoms like breathlessness and tiredness.
What kind of support will carers receive?
Carers will get six weekly online educational sessions, an educational booklet, and access to a website with additional advice and support.
Who will deliver the HELP programme?
Heart failure nurses will be responsible for delivering the HELP programme sessions.
How long will I be involved in the study?
Participation involves weekly sessions for six weeks, plus follow-up questionnaires and potential interviews at the start, immediately after the sessions, and six months later. So, around 7.5 months in total.
Will I have to pay to take part?
No, participation in the HELP programme and the study is free of charge.
How to find out more
Gareth Thompson, PhD
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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