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.
Descripción general del estudio
Estado
Intervención / Tratamiento
Descripción detallada
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.
Tipo de estudio
Inscripción (Estimado)
Contactos y Ubicaciones
Estudio Contacto
- Nombre: Dr Kate Sugar
- Número de teléfono: +44 1225 722988
- Correo electrónico: kate.sugar@dorothyhouse-hospice.org.uk
Criterios de participación
Criterio de elegibilidad
Edades elegibles para estudiar
- Adulto
- Adulto Mayor
Acepta Voluntarios Saludables
Método de muestreo
Población de estudio
Descripción
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 de estudios
¿Cómo está diseñado el estudio?
Detalles de diseño
Cohortes e Intervenciones
Grupo / Cohorte |
Intervención / Tratamiento |
|---|---|
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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.
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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.
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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.
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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.
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¿Qué mide el estudio?
Medidas de resultado primarias
Medida de resultado |
Medida Descripción |
Periodo de tiempo |
|---|---|---|
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Priorities for an intimacy support toolkit
Periodo de tiempo: Up to 24 months
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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.
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Up to 24 months
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Medidas de resultado secundarias
Medida de resultado |
Medida Descripción |
Periodo de tiempo |
|---|---|---|
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Hospice service users' intimacy support needs and priorities
Periodo de tiempo: During the cross-sectional survey data collection period (anticipated November 2026 to March 2027).
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Self-reported intimacy support needs, preferred sources of support, and priorities for hospice intimacy support identified through an e-survey of hospice service users.
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During the cross-sectional survey data collection period (anticipated November 2026 to March 2027).
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Healthcare professionals' confidence and educational needs
Periodo de tiempo: During the cross-sectional survey data collection period (anticipated April 2027 to September 2027).
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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.
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During the cross-sectional survey data collection period (anticipated April 2027 to September 2027).
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Colaboradores e Investigadores
Patrocinador
Colaboradores
Investigadores
- Investigador principal: Dr Kate Sugar, Dorothy House
- Silla de estudio: Professor Candida McCabe, Dorothy House
Fechas de registro del estudio
Fechas importantes del estudio
Inicio del estudio (Estimado)
Finalización primaria (Estimado)
Finalización del estudio (Estimado)
Fechas de registro del estudio
Enviado por primera vez
Primero enviado que cumplió con los criterios de control de calidad
Publicado por primera vez (Actual)
Actualizaciones de registros de estudio
Última actualización publicada (Actual)
Última actualización enviada que cumplió con los criterios de control de calidad
Última verificación
Más información
Términos relacionados con este estudio
Palabras clave
Términos MeSH relevantes adicionales
Otros números de identificación del estudio
- NIHR209649
- IRAS ID 360318 (Otro identificador: Health Research Authority (HRA))
Plan de datos de participantes individuales (IPD)
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Información sobre medicamentos y dispositivos, documentos del estudio
Estudia un producto farmacéutico regulado por la FDA de EE. UU.
Estudia un producto de dispositivo regulado por la FDA de EE. UU.
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