Understanding the health, caring activities, and experiences of informal carers of patients in hospital at home services
| ISRCTN | ISRCTN15466542 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN15466542 |
| IRAS number | 356322 |
| Secondary identifying numbers | CPMS 70349 |
- Submission date
- 25/09/2025
- Registration date
- 08/10/2025
- Last edited
- 03/10/2025
- Recruitment status
- Recruiting
- Overall study status
- Ongoing
- Condition category
- Other
Plain English summary of protocol
Background and study aims
Hospital at Home (HaH) services, also known as Virtual Wards, enable patients to recover at home with frequent visits from health professionals, reducing the need for hospital stays. This approach is often preferred by patients and helps reduce pressure on hospitals. Informal, unpaid carers, such as family members and friends, play a crucial role in supporting patients by assisting with practical tasks, providing companionship, and patient monitoring. However, this role can be demanding and may negatively impact carers' well-being. There is limited research on the experiences of carers within HaH services.
This study aims to understand the experiences of carers of patients receiving care from HaH services in the NHS. It will explore carers' health and well-being, the tasks they perform, and the impact of caring. The study will also investigate what carers think about HaH care received and identify areas for service improvements to better support carers, recognizing their crucial role in patient care, patient outcomes and supporting the NHS.
Who can participate?
Participants must be:
• Caring for a family member or friend receiving hospital at home care during the first seven days of their treatment
• Aged 18 years or over
• Not paid for the care they provide (except for carers’ benefits and allowances)
• Likely to have face-to-face or other contact with the patient and be involved in organising or providing practical, emotional, or other support that assists the patient’s care or wellbeing
• Able to participate in English or with support from an interpreter and/or translated questionnaires
What does the study involve?
Carers will be asked to complete a questionnaire survey and/or interviews on two occasions: once whilst the patient is receiving HaH care, and once after they have been discharged. The survey includes questions about the carers health and wellbeing, their caring role, and the impact of caring. The survey will take approximately 20-30 minutes to complete and can be completed online, by post, by phone, or in-person. The interviews will explore carers experiences of being a carer, the care activities that they carry out, their perceptions of the HaH care received, and their support needs. The interviews will take approximately 45-60 minutes and can be completed online, by phone, or in-person.
What are the possible benefits and risks of participating?
An improved understanding of carers’ roles and support needs may lead to improved services and support for carers of patients receiving care from HaH services in the future. Some participants may find it useful to talk about their experiences. However, talking about experiences of caring and the caring role can be emotionally difficult and there is a possible risk that participating will cause some feelings of distress.
Where is the study run from?
London South Bank University (UK)
When is the study starting and how long is it expected to run for?
August 2024 to February 2027
Who is funding the study?
National Institute for Health and Care Research (NIHR) (UK)
Who is the main contact?
Professor Neil Brimblecombe: brimblen@lsbu.ac.uk
Contact information
Principal investigator
London South Bank University
London
SE1 0AA
United Kingdom
 ORCID ID |
0000-0001-9873-777X |
|---|---|
| Phone | +44 2078157815 |
| brimblen@lsbu.ac.uk |
Scientific
London South Bank University
London
SE1 0AA
United Kingdom
| ORCID ID |
0000-0002-8523-3182 |
|---|---|
| Phone | +44 2078157815 |
| woodk6@lsbu.ac.uk |
Public
De Montfort University
Leicester
LE1 9BH
United Kingdom
| Phone | +44 116 207 8982 |
|---|---|
| ngaal@dmu.ac.uk |
Study information
| Study design | Multicentre convergent parallel mixed methods design |
|---|---|
| Primary study design | Observational |
| Secondary study design | Mixed methods |
| Study setting(s) | Home |
| Study type | Other |
| Participant information sheet | Not available in web format, please use contact details to request a participant information sheet |
| Scientific title | A mixed methods study investigating the health, caring activities, and experiences of informal carers of patients in hospital at home services |
| Study objectives | Hospital at Home (HaH) services, also known as Virtual Wards, enable patients to receive acute care in their own home, with frequent visits from healthcare professionals. This model reduces hospital admissions and is often preferred by patients. Informal, unpaid carers (e.g. family or friends) are critical to the success of HaH, providing practical assistance, emotional support, and safety monitoring. However, this role can place significant emotional, physical, and financial strain on carers. HaH services are expanding rapidly across the NHS, yet little is known about how this model affects carers’ health and wellbeing. This study aims to explore the experiences of informal carers supporting patients during and after HaH care. It will assess the impact on carers’ health, wellbeing, and finances; examine the nature of the caring tasks performed; and investigate carers’ perceptions of the HaH model. |
| Ethics approval(s) |
Approved 12/08/2025, London South Bank University Research Integrity & Ethics Committee (London South Bank University, London, SE1 0AA, United Kingdom; +44 2078157815; ethics@lsbu.ac.uk), ref: EPH2425-0249 |
| Health condition(s) or problem(s) studied | The health, caring activities, and experiences of informal carers of patients in hospital at home services |
| Intervention | Following their enrolment into the study, each carer will be invited to complete six short, validated questionnaires about their health, wellbeing, caring experiences and service use. Completion of the questionnaires will take approximately 30 minutes. Carers will complete the questionnaires a two time points, once within the first seven days of HaH starting, and again around five weeks after the patient has been discharged. The questionnaires can be completed online, by phone, or by post. In addition, some carers will be invited to take part in interviews. Interviews will take place at two time points, once within the first seven days of HaH starting, and again around five weeks after the patient has been discharged. Interviews can be undertaken in-person, on the telephone, or online. Each interview will take approximately 45 minutes. Expected average total length of participation will be approximately six weeks. There will be no further follow up after this point. |
| Intervention type | Other |
| Primary outcome measure | Self-reported carer health and wellbeing, as measured qualitatively and quantitatively (EQ-HWD, Zarit Burden Interview, semi-structured interviews), administered at two time points – during and after HaH care |
| Secondary outcome measures | 1. Themes arising from carers reported experiences measured using semi-structured and carer activity interviews at two time points (during and after the patient’s HaH care) 2. Identified relationships between carer characteristics and wellbeing and perceived burden measured using Zarit Burden Interview, the CO-OP WONCA, the Carer Experience Scale, the WEMWBS, and the EQ-HWB at two time points (during and after the patient’s HaH care) 3. The demographic profile and contribution of unpaid carers supporting patients utilising HaH measured using the Carer Activity Interview at two time points (during and after the patient’s HaH care) 4. Carer wellbeing, perceived burden, and psychological and physical status measured using the Zarit Burden Interview, the CO-OP WONCA, the WEMWBS, the EQ-HWB, and the Carer Experience Scale at two time points (during and after the patient’s HaH care) 5. The economic impact on carers, including out of pocket expenses and health/social care use measured using the Client Service Receipt Inventory (CSRI) at two time points (during and after the patient’s HaH care) |
| Overall study start date | 01/08/2024 |
| Completion date | 01/02/2027 |
Eligibility
| Participant type(s) | Carer |
|---|---|
| Age group | Adult |
| Lower age limit | 18 Years |
| Sex | All |
| Target number of participants | 158 |
| Key inclusion criteria | 1. Informal carer 2. Not receiving payment for their caring role (excluding carer benefits or allowances) 3. Carer aged 18 years and over 4. Caring for someone receiving Hospital at Home care during the first 7 days of their treatment 5. Carer likely to have face-to-face or other contact with the patient and involved in organising or providing practical, emotional, or other support that assists the patient’s care or wellbeing. 6. Carer able to give consent 7. Carer able to participate via English or with support from an interpreter and/or translated questionnaires |
| Key exclusion criteria | 1. Unable to give informed consent 2. Carers paid to support the patient (excluding carer benefits or allowances) 3. Carers aged under 18 years of age |
| Date of first enrolment | 01/10/2025 |
| Date of final enrolment | 31/10/2026 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centre
15 Marylebone Road
London
NW1 5JD
United Kingdom
Sponsor information
Hospital/treatment centre
15 Marylebone Rd
London
NW1 5JD
England
United Kingdom
| Phone | +44 20 7798 1300 |
|---|---|
| simon.lewis4@nhs.net | |
| Website | https://www.clch.nhs.uk/ |
"ROR" |
https://ror.org/008ngcp91 |
Funders
Funder type
Government
Government organisation / National government
- Alternative name(s)
- National Institute for Health Research, NIHR Research, NIHRresearch, NIHR - National Institute for Health Research, NIHR (The National Institute for Health and Care Research), NIHR
- Location
- United Kingdom
Results and Publications
| Intention to publish date | 01/02/2028 |
|---|---|
| Individual participant data (IPD) Intention to share | Yes |
| IPD sharing plan summary | Available on request |
| Publication and dissemination plan | Planned publication in peer reviewed journals and conference presentations |
| IPD sharing plan | Metadata generated during the current study will be available via the London South Bank University repository. Requests should be made to Neil Brimblecombe: brimblen@lsbu.ac.uk |
Editorial Notes
25/09/2025: Trial's existence confirmed by the National Institute for Health and Care Research (NIHR) (UK).
