IN-TALK: Co-producing a Hospice Intimacy Support Toolkit in England

Communication About Intimacy Needs in Hospice and Palliative Care

Hospice care, Palliative care, Intimacy, Communication, Co-production, Mixed methods, Healthcare professionals, Education, Training, Person-centred care, Support toolkit, Hospice service users, Holistic care

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.

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.

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