IN-TALK: Co-producing a Hospice Intimacy Support Toolkit in England (IN-TALK)
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.
Aperçu de l'étude
Statut
Intervention / Traitement
Description détaillée
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.
Type d'étude
Inscription (Estimé)
Contacts et emplacements
Coordonnées de l'étude
- Nom: Dr Kate Sugar
- Numéro de téléphone: +44 1225 722988
- E-mail: kate.sugar@dorothyhouse-hospice.org.uk
Critères de participation
Critère d'éligibilité
Âges éligibles pour étudier
- Adulte
- Adulte plus âgé
Accepte les volontaires sains
Méthode d'échantillonnage
Population étudiée
La description
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.
Plan d'étude
Comment l'étude est-elle conçue ?
Détails de conception
Cohortes et interventions
Groupe / Cohorte |
Intervention / Traitement |
|---|---|
|
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.
|
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.
|
|
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.
|
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.
|
Que mesure l'étude ?
Principaux critères de jugement
Mesure des résultats |
Description de la mesure |
Délai |
|---|---|---|
|
Priorities for an intimacy support toolkit
Délai: 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.
|
Up to 24 months
|
Mesures de résultats secondaires
Mesure des résultats |
Description de la mesure |
Délai |
|---|---|---|
|
Hospice service users' intimacy support needs and priorities
Délai: During the cross-sectional survey data collection period (anticipated November 2026 to March 2027).
|
Self-reported intimacy support needs, preferred sources of support, and priorities for hospice intimacy support identified through an e-survey of hospice service users.
|
During the cross-sectional survey data collection period (anticipated November 2026 to March 2027).
|
|
Healthcare professionals' confidence and educational needs
Délai: During the cross-sectional survey data collection period (anticipated April 2027 to September 2027).
|
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.
|
During the cross-sectional survey data collection period (anticipated April 2027 to September 2027).
|
Collaborateurs et enquêteurs
Parrainer
Collaborateurs
Les enquêteurs
- Chercheur principal: Dr Kate Sugar, Dorothy House
- Chaise d'étude: Professor Candida McCabe, Dorothy House
Dates d'enregistrement des études
Dates principales de l'étude
Début de l'étude (Estimé)
Achèvement primaire (Estimé)
Achèvement de l'étude (Estimé)
Dates d'inscription aux études
Première soumission
Première soumission répondant aux critères de contrôle qualité
Première publication (Réel)
Mises à jour des dossiers d'étude
Dernière mise à jour publiée (Réel)
Dernière mise à jour soumise répondant aux critères de contrôle qualité
Dernière vérification
Plus d'information
Termes liés à cette étude
Mots clés
Termes MeSH pertinents supplémentaires
Autres numéros d'identification d'étude
- NIHR209649
- IRAS ID 360318 (Autre identifiant: Health Research Authority (HRA))
Plan pour les données individuelles des participants (IPD)
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Informations sur les médicaments et les dispositifs, documents d'étude
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