Communication About Intimacy Needs in Hospice and Palliative CareIN-TALKNCT07737145
IN-TALK: Co-producing a Hospice Intimacy Support Toolkit in England
An observational study of Communication About Intimacy Needs in Hospice and Palliative Care, run by Dorothy House Hospice.
Trial summary
People receiving hospice care may experience concerns about intimacy, closeness and physical affection that can affect their quality of life and wellbeing. However, healthcare professionals often report feeling uncertain about how to initiate or respond to conversations about intimacy needs. Read more about this study
- Who is it for?
- Ages 18 years and olderHealthy volunteers can take part
- Conditions the study is for
- Communication About Intimacy Needs in Hospice and Palliative Care
- What is being tested?
- Experience-Based Co-Design (EBCD) workshops
- Type of treatment
- Lifestyle or therapy programme
- How many people
- 794 participants
- Where
- No sites listed yet
- Study dates
- 1 Nov 2026to 31 May 2028
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- Healthy volunteers accepted
- Adult, Older adult
Study population: The study population comprises adult hospice service users (including patients, partners, loved ones and bereaved people receiving palliative and end of life care or support services from hospices in England) and registered and non-registered healthcare professionals working in hospices in England.
Who may be able to join
- Hospice service users: Aged 18 years or over. Hospice service users: Patients, partners, loved ones and bereaved people who are receiving, or have received, care or support services from hospices in England.
- Hospice service users: Able to understand and communicate in spoken and written English, independently or with the support of an interpreter.
- Hospice service users: Able and willing to provide informed consent. Healthcare professionals: Registered or non-registered healthcare professionals currently working within hospices in England involved in patient care and support.
- Healthcare professionals: Aged 18 years or over. Healthcare professionals: Able and willing to provide informed consent.
Who cannot join
- Hospice service users: Cognitive impairment that impedes communication. Healthcare professionals: Registered and non-registered Healthcare professionals currently working outside of hospices; and England.
Trial locations and contacts
No sites are listed yet. Contact the study team or a site near you to ask about taking part.
About this study
Official title: Co-producing a Hospice Intimacy Support Toolkit to Enable Intimacy Needs Conversations in England
People receiving hospice care may experience concerns about intimacy, closeness and physical affection that can affect their quality of life and wellbeing. However, healthcare professionals often report feeling uncertain about how to initiate or respond to conversations about intimacy needs. This can result in unmet needs and missed opportunities to provide holistic, person-centred care.
The aim of the IN-TALK study is to co-produce a hospice intimacy support toolkit to support healthcare professionals in initiating and responding to conversations about intimacy needs with people receiving hospice care in England.
This prospective mixed methods observational study uses Experience-Based Co-Design (EBCD) as its co-production methodology to develop a hospice intimacy support toolkit. Findings from the surveys will inform a series of co-production workshops involving hospice service users and healthcare professionals. Together, participants will co-produce the content and design of a hospice intimacy support toolkit to support person-centred care in hospice services across England.
Read the detailed description
IN-TALK is a 24-month prospective mixed methods observational study which uses Experience-Based Co-Design (EBCD) as its co-production methodology to develop a hospice intimacy support toolkit. The study is funded by the National Institute for Health and Care Research (NIHR) Research for Patient Benefit (RfPB) Programme (Grant Reference NIHR209649).
The study aims to co-produce an evidence-informed hospice intimacy support toolkit to support healthcare professionals in initiating and responding to conversations about intimacy needs with people receiving hospice care in England.
The study comprises two interconnected work packages. Cross-sectional surveys of hospice service users and healthcare professionals will generate evidence to inform Experience-Based Co-Design (EBCD) workshops, through which participants will co-produce a hospice intimacy support toolkit.
Work Package 1 will undertake cross-sectional surveys of hospice healthcare professionals and hospice service users in England. The surveys will explore experiences of intimacy needs conversations, perceived barriers and facilitators, confidence, education and training needs, and priorities for improving support within hospice care. Survey findings will be analysed using descriptive statistics and qualitative analysis of free-text responses where appropriate.
Work Package 2 will use Experience-Based Co-Design (EBCD) methodology to bring together hospice service users and healthcare professionals in a series of co-production workshops. Workshop participants will review the findings from Work Package 1, identify priorities for improvement and collaboratively design the content, format and implementation considerations for a hospice intimacy support toolkit. Workshops will be delivered in two face-to-face locations and one online workshop to maximise accessibility and participation.
The study will produce a hospice intimacy support toolkit intended to support healthcare professionals to address intimacy needs as part of holistic, person-centred hospice care. No investigational medicinal products, medical devices or experimental interventions will be evaluated. Participants will continue to receive usual hospice care throughout the study.
- Being tested
- Experience-Based Co-Design (EBCD) workshops
- Keywords
- Hospice care, Palliative care, Intimacy, Communication, Co-production, Mixed methods, Healthcare professionals, Education, Training, Person-centred care, Support toolkit, Hospice service users, Holistic care
- Medical subject headings
- Communication
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Experience-Based Co-Design (EBCD) workshopsBehavioural
Experience-Based Co-Design (EBCD) workshops are used as a co-production research method to collaboratively develop a hospice intimacy support toolkit with hospice service users and healthcare professionals. The workshops are part of the research methodology and are not a therapeutic or clinical intervention.
| Study group | Role | What they receive |
|---|---|---|
| Hospice service users | Adults receiving hospice care in England who meet the study eligibility criteria and participate in the survey, the Experience-Based Co-Design (EBCD) workshops, or both, to inform the hospice intimacy support toolkit. Receives: Behavioral: Experience-Based Co-Design (EBCD) workshops | |
| Healthcare professionals | Healthcare professionals working within hospice services in England who meet the study eligibility criteria and participate in the survey, the Experience-Based Co-Design (EBCD) workshops, or both, to inform the hospice intimacy support toolkit. Receives: Behavioral: Experience-Based Co-Design (EBCD) workshops |
What is being measured
The primary outcome is the main question the study is designed to answer.
Priorities for an intimacy support toolkit
Identification of priorities for the content, format and implementation of a hospice intimacy support toolkit through analysis of survey findings and Experience-Based Co-Design (EBCD) workshop discussions involving hospice service users and healthcare professionals.
Measured: Up to 24 months
Secondary outcomes (2)
Hospice service users' intimacy support needs and priorities
Self-reported intimacy support needs, preferred sources of support, and priorities for hospice intimacy support identified through an e-survey of hospice service users.
Measured: During the cross-sectional survey data collection period (anticipated November 2026 to March 2027).
Healthcare professionals' confidence and educational needs
Self-reported confidence, perceived barriers and facilitators, and education and training needs relating to conversations about intimacy needs identified through an e-survey of hospice healthcare professionals.
Measured: During the cross-sectional survey data collection period (anticipated April 2027 to September 2027).
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted30 Jul 2026
- Study start1 Nov 2026 (estimated)
- Primary completion30 Apr 2028 (estimated)
- Study completion31 May 2028 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Communication About Intimacy Needs in Hospice and Palliative CareStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Other
- Time perspective
- Cross-sectional
- Enrolment
- 794 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Dorothy House Hospice
- Sponsor type
- University, hospital or other
- Collaborators
- St Oswald's Hospice, University of the West of England, Bristol, National Institute for Health and Care Research
- Responsible party
- Sponsor
- Investigators
- Dr Kate Sugar, Principal investigator, Dorothy HouseProfessor Candida McCabe, Study chair, Dorothy House
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07737145
- Sponsor's protocol ID
- NIHR209649
- Other IDs
- IRAS ID 360318
- Acronym
- IN-TALK
- Status last verified
- Jul 2026
- First submitted
- 2 Jul 2026
- Last updated
- 30 Jul 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Undecided
Study at a glance
From the registry record, last updated by the sponsor on 30 Jul 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Co-producing a Hospice Intimacy Support Toolkit to Enable Intimacy Needs Conversations in England
- ClinicalTrials.gov ID
- NCT07737145
- Acronym / sponsor ID
- IN-TALK / NIHR209649
- Keywords
- Hospice care, Palliative care, Intimacy, Communication, Co-production, Mixed methods, Healthcare professionals, Education
- Study type
- Observational
- Recruitment status
- Not yet recruiting
- Enrolment
- 794 participants (estimated)
- Lead sponsor
- Dorothy House HospiceUniversity, hospital or other
- Collaborators
- St Oswald's Hospice, University of the West of England, Bristol, National Institute for Health and Care Research
- Study start
- 1 Nov 2026 (estimated)
- Primary completion
- 30 Apr 2028 (estimated)
- Study completion
- 31 May 2028 (estimated)
- First posted
- 30 Jul 2026 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
People receiving hospice care may experience concerns about intimacy, closeness and physical affection that can affect their quality of life and wellbeing. However, healthcare professionals often report feeling uncertain about how to initiate or respond to conversations about intimacy needs. This can result in unmet needs and missed opportunities to provide holistic, person-centred care.
The aim of the IN-TALK study is to co-produce a hospice intimacy support toolkit to support healthcare professionals in initiating and responding to conversations about intimacy needs with people receiving hospice care in England.
This prospective mixed methods observational study uses Experience-Based Co-Design (EBCD) as its co-production methodology to develop a hospice intimacy support toolkit. Findings from the surveys will inform a series of co-production workshops involving hospice service users and healthcare professionals. Together, participants will co-produce the content and design of a hospice intimacy support toolkit to support person-centred care in hospice services across England.
Detailed description
IN-TALK is a 24-month prospective mixed methods observational study which uses Experience-Based Co-Design (EBCD) as its co-production methodology to develop a hospice intimacy support toolkit. The study is funded by the National Institute for Health and Care Research (NIHR) Research for Patient Benefit (RfPB) Programme (Grant Reference NIHR209649).
The study aims to co-produce an evidence-informed hospice intimacy support toolkit to support healthcare professionals in initiating and responding to conversations about intimacy needs with people receiving hospice care in England.
The study comprises two interconnected work packages. Cross-sectional surveys of hospice service users and healthcare professionals will generate evidence to inform Experience-Based Co-Design (EBCD) workshops, through which participants will co-produce a hospice intimacy support toolkit.
Work Package 1 will undertake cross-sectional surveys of hospice healthcare professionals and hospice service users in England. The surveys will explore experiences of intimacy needs conversations, perceived barriers and facilitators, confidence, education and training needs, and priorities for improving support within hospice care. Survey findings will be analysed using descriptive statistics and qualitative analysis of free-text responses where appropriate.
Work Package 2 will use Experience-Based Co-Design (EBCD) methodology to bring together hospice service users and healthcare professionals in a series of co-production workshops. Workshop participants will review the findings from Work Package 1, identify priorities for improvement and collaboratively design the content, format and implementation considerations for a hospice intimacy support toolkit. Workshops will be delivered in two face-to-face locations and one online workshop to maximise accessibility and participation.
The study will produce a hospice intimacy support toolkit intended to support healthcare professionals to address intimacy needs as part of holistic, person-centred hospice care. No investigational medicinal products, medical devices or experimental interventions will be evaluated. Participants will continue to receive usual hospice care throughout the study.
Study design
- Observational model
- Other
- Time perspective
- Cross-sectional
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| Hospice service users | – | Behavioral: Experience-Based Co-Design (EBCD) workshopsAdults receiving hospice care in England who meet the study eligibility criteria and participate in the survey, the Experience-Based Co-Design (EBCD) workshops, or both, to inform the hospice intimacy support toolkit. |
| Healthcare professionals | – | Behavioral: Experience-Based Co-Design (EBCD) workshopsHealthcare professionals working within hospice services in England who meet the study eligibility criteria and participate in the survey, the Experience-Based Co-Design (EBCD) workshops, or both, to inform the hospice intimacy support toolkit. |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Adult, Older adult
- Study population
- The study population comprises adult hospice service users (including patients, partners, loved ones and bereaved people receiving palliative and end of life care or support services from hospices in England) and registered and non-registered healthcare professionals working in hospices in England.
Key inclusion criteria (4 listed)
- Hospice service users: Aged 18 years or over. Hospice service users: Patients, partners, loved ones and bereaved people who are receiving, or have received, care or support services from hospices in England.
- Hospice service users: Able to understand and communicate in spoken and written English, independently or with the support of an interpreter.
- Hospice service users: Able and willing to provide informed consent. Healthcare professionals: Registered or non-registered healthcare professionals currently working within hospices in England involved in patient care and support.
- Healthcare professionals: Aged 18 years or over. Healthcare professionals: Able and willing to provide informed consent.
Key exclusion criteria (1 listed)
- Hospice service users: Cognitive impairment that impedes communication. Healthcare professionals: Registered and non-registered Healthcare professionals currently working outside of hospices; and England.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Experience-Based Co-Design (EBCD) workshopsExperience-Based Co-Design (EBCD) workshops are used as a co-production research method to collaboratively develop a hospice intimacy support toolkit with hospice service users and healthcare professionals. The workshops are part of the research methodology and are not a therapeutic or clinical intervention. | Behavioural | Healthcare professionals, Hospice service users |
Primary outcome
Priorities for an intimacy support toolkit
Time frame: Up to 24 months
Identification of priorities for the content, format and implementation of a hospice intimacy support toolkit through analysis of survey findings and Experience-Based Co-Design (EBCD) workshop discussions involving hospice service users and healthcare professionals.
2 secondary outcomes
Hospice service users' intimacy support needs and priorities
Time frame: During the cross-sectional survey data collection period (anticipated November 2026 to March 2027).
Healthcare professionals' confidence and educational needs
Time frame: During the cross-sectional survey data collection period (anticipated April 2027 to September 2027).
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 30 Jul 2026.
- Individual participant dataSharing planned: Undecided
Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Dr Kate Sugar principal investigator
Dorothy House
Professor Candida McCabe study chair
Dorothy House
Questions about this trial
What is this clinical trial studying?
An observational study of Communication About Intimacy Needs in Hospice and Palliative Care, run by Dorothy House Hospice.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: opening soon, as of the sponsor's last update on 30 Jul 2026. Status can change between updates, so confirm with the study contact before making plans.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Dr Kate Sugar (+44 1225 722988, kate.sugar@dorothyhouse-hospice.org.uk), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Priorities for an intimacy support toolkit (time frame: Up to 24 months). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 30 Jul 2026.