IN-TALK: Co-producing a Hospice Intimacy Support Toolkit in England
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Experience-Based Co-Design (EBCD) workshops.
- Who it may be relevant to
- Registry conditions: Communication About Intimacy Needs in Hospice and Palliative Care. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Center list to be confirmed — check the primary protocol.
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Official title
Co-producing a Hospice Intimacy Support Toolkit to Enable Intimacy Needs Conversations in England
Overview
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.
Interventions
- Behavioral Experience-Based Co-Design (EBCD) workshops
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.
Primary outcome measures
- Priorities for an intimacy support toolkit [Time frame: Up to 24 months]
Secondary outcome measures (2)
- 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).]
Eligibility criteria
Inclusion criteria
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.
Exclusion criteria
Hospice service users: Cognitive impairment that impedes communication. Healthcare professionals: Registered and non-registered Healthcare professionals currently working outside of hospices; and England.
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Observational model
- Other
Study locations
Center list to be confirmed — check the primary protocol.
Identifiers
NCT: NCT07737145 · NIHR209649 · IRAS ID 360318