Discharge from palliative care study
| ISRCTN | ISRCTN18098027 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN18098027 |
| IRAS number | 322302 |
| Secondary identifying numbers | RG_23-097, IRAS 322302, CPMS 54454 |
- Submission date
- 14/11/2023
- Registration date
- 29/12/2023
- Last edited
- 28/07/2025
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Other
Plain English summary of protocol
Background and study aims
In the next 20 years, more people are expected to die in community settings, such as their homes. Specialist palliative care is a service often provided by hospices and hospitals that provides support for people with illnesses that cannot be cured and those at the end of their life who are dying, and their close persons. Some people think discharge from specialist palliative care cannot happen - but it does. Around a third of patients are discharged and move to a community setting, as their needs and preferences change. The aim of this study is to understand patients’, carers’, and general practice professionals’ experiences of discharge communications from specialist palliative care. The study will listen to the experiences of these groups to identify how to improve discharge communication in ways that better support patients’ and carers’ needs.
When someone is discharged, there should be 'discharge communication' with the patient’s General Practitioner. 'Discharge communication' can be spoken and/or written. It is well known that good discharge communication is important for patient care and safety. However, it has previously been found that discharge letters from specialist palliative care vary in quality and content. Patients were not always involved in these communications and offered their letters, as they should be. Currently, little is known about how these discharge communications affect patients’ and carers’ experiences or what their communication needs are at this critical moment in their lives.
Who can participate?
Adult (18+ years old) patients or carers of patients who are discharged to primary care from a participating specialist palliative care facility and primary care healthcare professionals
What does the study involve?
This is a 15-month study starting in January 2024. The study team will speak to a wide range of people who have been recently discharged from hospital or hospice and their carers, as well as staff in General Practice teams to gather their experiences and identify how discharge communications from specialist palliative care can be improved. This will include 30 carers and/or patients with different conditions recruited through hospices and hospitals, in inner city, semi-rural and rural areas. There will also be interviews with 15 healthcare staff. The content of these interviews will be analysed to understand people’s discharge experiences and communication needs. This will help to identify what information is important, and how discharge communication can be made better and easier to understand.
Patient and public involvement:
The need for this project was identified through patient and public involvement in our previous study exploring the content of hospice discharge letters.
The research proposal was developed with three people who have lived experience of palliative care as a patient or carer. They advised on the content and this summary.
Dissemination:
A summary of best principles for discharge communication from specialist palliative care will be co-produced and shared with key specialist palliative care organisations and networks. The findings will be published in academic journals and presented at conferences.
What are the possible benefits and risks of participating?
Participation will not be related to any changes to the medical intervention and care for participants or those they are caring for.
While participants may not experience personal benefits from participating in this research, their views will help us to understand ways of improving discharge communication and processes. Indirect benefits participants may experience include feeling valued as part of a team through being involved in research, and supported, and empowered through speaking to someone and being heard. An anonymised acknowledgement of the contribution of study participants will be provided in all study outputs such as publications as a collective anonymised statement.
Participation in a research study at the end of life – when physical capacity, interpersonal connections and social worth can be experienced as declining – have been experienced as empowering and helped to reaffirm a sense of personhood, self-worth, and dignity. This can occur when participants feel that by taking part in research study they still have something of value to give that could benefit others and society. It can also occur during semi-structured research interviews, which prioritise active listening and are a recording of a person’s life and experiences, allow participants to feel seen, heard and valued as a person.
Taking part in this research should not cause participants any direct harm. The topic of this study is palliative and end-of-life care – this means interview discussions may naturally include talking about death and dying. Talking about end-of-life care and dying may make participants feel sad or leave them with questions that the research team cannot answer.
Where is the study run from?
University of Birmingham (UK) and University of Warwick (UK)
When is the study starting and how long is it expected to run for?
October 2023 to March 2025
Who is funding the study?
National Institute for Health and Care Research (NIHR) (UK)
Who is the main contact?
Dr Katharine Weetman, k.e.weetman@bham.ac.uk
Contact information
Public, Scientific, Principal Investigator
Interactive Studies Unit
90 Vincent Drive
University of Birmingham
Edgbaston
Birmingham
B15 2TT
United Kingdom
 ORCID ID |
0000-0003-0377-3933 |
|---|---|
| Phone | +44 (0)121 414 3344 |
| k.e.weetman@bham.ac.uk |
Public, Scientific, Principal Investigator
Unit of Academic Primary Care
Warwick Medical School
University of Warwick
Warwick
CV4 7AL
United Kingdom
| ORCID ID |
0000-0002-0879-4277 |
|---|---|
| Phone | +44 (0)2476 150619 |
| John.Macartney@warwick.ac.uk |
Study information
| Study design | 15-month observational study design (multi-centre) involving qualitative semi-structured interviews |
|---|---|
| Primary study design | Observational |
| Secondary study design | Cross sectional study |
| Study setting(s) | Charity/Voluntary sector, Community, GP practice, Home, Hospice, Hospital |
| Study type | Other, Quality of life, Safety |
| Participant information sheet | Not available in web format, please use contact details to request participant information sheet. |
| Scientific title | Improving patients’, carers’ and primary care healthcare professionals’ experiences of discharge communication from specialist palliative care to community settings: a qualitative interview study |
| Study objectives | Observational study only. The study aim is to understand how discharge communications from specialist palliative care services to primary care are experienced by patients, carers, and healthcare professionals, and how these communications might be improved to support effective patient-centred care. |
| Ethics approval(s) |
Approved 04/12/2023, Coventry and Warwickshire NHS REC (HRA) (2 Redman Place, Stratford, E20 1JQ, United Kingdom; +44 (0)2071048211; coventryandwarwick.rec@hra.nhs.uk), ref: 23/WM/0250 |
| Health condition(s) or problem(s) studied | Palliative care |
| Intervention | This is a 15-month observational study, (multi-centre) involving qualitative semi-structured interviews. This is a single interview study only with no intervention or follow-up. This is a qualitative study exploring the lived experiences of those receiving specialist palliative care discharge communications. Qualitative methods are well suited for generating rich data drawing on participants’ accounts and allow for the exploration of experiences in relation to contextual settings. The research team will interview 30 adult patients and/or carers and 15 healthcare professionals (n = 45) and will seek a range of experiences of discharge communication by using a maximum variation approach to sampling, including purposively recruiting people from a range of demographic backgrounds from 4-6 specialist palliative care services (hospitals and hospices) as well as 5-7 General Practices. Interview data will be analysed using a reflexive thematic approach and will involve input from the research team. |
| Intervention type | Other |
| Primary outcome measure | Patient, carer, and healthcare professional experiences are measured using qualitative semi-structured interviews conducted over the duration of approximately 1 hour |
| Secondary outcome measures | There are no secondary outcome measures |
| Overall study start date | 01/01/2024 |
| Completion date | 31/03/2025 |
Eligibility
| Participant type(s) | Patient, Health professional, Carer |
|---|---|
| Age group | Mixed |
| Lower age limit | 18 Years |
| Upper age limit | 99 Years |
| Sex | Both |
| Target number of participants | 45 |
| Total final enrolment | 38 |
| Key inclusion criteria | Inclusion criteria for patients and carers: 1. Adult (18+ years old) patients or carers for patients discharged to primary care from a participating specialist palliative care facility at a hospital or hospice following an episode of care 2. Discharge event no longer than two weeks ago at the time of participant screening and selection for the study Inclusion criteria for primary care healthcare professional interviews: Working in a participating General Practice team (including associated community nursing) and receiving and/or acting upon discharge communications. This may include, but not be limited to, General Practitioners, Nurse Practitioners, and District Nurses. |
| Key exclusion criteria | Exclusion criteria (all): 1. Children (those aged <18 years old) 2. Patients who are deemed by their care team or treating clinician as lacking the capacity to provide informed consent to participate in the study (e.g. Alzheimer’s) or are otherwise deemed unsuitable for study participation 3. Patients discharged to providers or units other than primary care (e.g. discharge to secondary care) 4. Persons who have expressed a prior wish not to participate in research 5. Bereaved carers (<6 months ago) 6. Healthcare professional who has worked for less than one month in Primary Care |
| Date of first enrolment | 01/02/2024 |
| Date of final enrolment | 30/03/2025 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centre
Birmingham
2SQ
United Kingdom
Sponsor information
University/education
Research Strategy and Services Division
Research Park
Edgbaston
Birmingham
B15 2TT
England
United Kingdom
| Phone | +44 (0)121 414 3344 |
|---|---|
| researchgovernance@contacts.bham.ac.uk | |
| Website | https://www.birmingham.ac.uk/index.aspx |
"ROR" |
https://ror.org/03angcq70 |
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 | 30/03/2026 |
|---|---|
| Individual participant data (IPD) Intention to share | Yes |
| IPD sharing plan summary | Available on request |
| Publication and dissemination plan | Study findings will be shared widely and publicly. This may include, but not be limited to, publicly available reports, as well as in academic papers and conference presentations. The findings will also be summarised for policy-makers of discharge processes. The research team will write a policy briefing paper that will summarise study findings and provide recommendations for policy and practice. This will share principles for how specialist palliative care clinicians can best communicate discharge with patients, carers and primary care clinicians. The researchers will invite clinicians, policy makers, commissioners, and PPI representatives to a blended half-day dissemination event where they will share the study findings. These will also be shared with key stakeholders and organisations (e.g. Hospice UK) and on social media. Key outputs will be a co-produced summary of best principles for discharge communication from specialist palliative care. |
| IPD sharing plan | The datasets generated during and/or analysed during the current study will be available upon request from Katharine Weetman, k.e.weetman@bham.ac.uk, in accordance with the below. The full datasets will not be made available due to the potentially identifiable nature of the in-depth qualitative data. Access to patient-identifiable data will be restricted to members of the study co-ordination team who require it for the performance of their role, inclusive of the research team. However, the data and results may be used for secondary analysis for future research and/or research involving modified or different research questions; this may be undertaken by the research team and other researchers. In the latter case, data will only be shared in secure and pseudonymised form with other researchers. |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Study website | 20/02/2024 | No | No | ||
| Study website | 20/02/2024 | No | No | ||
| Protocol article | 20/06/2024 | 21/06/2024 | Yes | No | |
| Results article | 26/07/2025 | 28/07/2025 | Yes | No |
Editorial Notes
28/07/2025: Publication reference added.
01/04/2025: The recruitment start date was changed from 01/10/2023 to 01/01/2024.
11/03/2025: Total final enrolment added.
21/06/2024: Publication reference added.
20/02/2024: Study websites were added.
10/01/2024: Ethics approval details added.
08/01/2024: Study contacts updated. The sponsor reference was changed from RG_23-093 to RG_23-097.
16/11/2023: Trial's existence confirmed by the National Institute for Health and Care Research (NIHR) (UK).
