Co-producing a hospice intimacy support toolkit to enable intimacy needs conversations in England
Funded by the NIHR
Many people living with a serious illness continue to value intimacy, connection and close relationships. However, serious illness can affect how people experience and maintain these important aspects of life. Patients, partners, loved ones, bereaved people, and healthcare professionals may find it difficult to talk about intimacy, leaving important questions, concerns and support needs unaddressed.
The study is funded by the National Institute for Health and Care Research (NIHR) through its Research for Patient Benefit (RfPB) Programme (Grant Reference Number: NIHR209649) and is sponsored by Dorothy House.
Research team
Chief Investigator: Dr Kate Sugar, Senior Researcher & Evaluation Lead, Dorothy House
Co-lead: Professor Candy McCabe, Head of Education & Research, Dorothy House
Sponsor Representative: Mr Wayne de Leeuw, Chief Executive, Dorothy House
Co-investigators:
- Mr Terry Prendergast, Patient Partner with Lived Experience
- Ms Amanda Lee, Head of Strategy and Research Development, St Oswald’s Hospice
- Professor Mwidimi Ndosi, Professor of Rheumatology and Health Outcomes, UWE Bristol
- Professor Alison Llewellyn, Professor of Supportive, Palliative and End of Life Care, UWE Bristol
- Dr Julie Taylor, Education & Development Manager, Dorothy House
- Ms Anne Montague, Education and Professional Development Lead, Dorothy House
- Charlotte Spence, Research Team Coordinator, Dorothy House
- Dr Samantha Stone, Research Fellow, Dorothy House
Patient and public involvement
People with lived experience of trying to maintain close relationships when receiving hospice care have been involved in shaping the IN-TALK study from the outset. Patients, partners, loved ones, bereaved people and healthcare professionals have worked alongside the research team to help design the study, shape recruitment and develop plans for sharing the findings. Their involvement helps ensure the research is inclusive, accessible and focused on what matters most to those affected.
Aims of the study
The IN-TALK study aims to understand how patients, partners, loved ones, bereaved people and healthcare professionals experience and talk about intimacy in hospice and palliative care. Working together, we hope to develop practical resources that help healthcare professionals feel more confident having open, informed and timely conversations about intimacy, relationships and connection. We also hope to create resources that empower patients and those important to them to raise questions or concerns about intimacy and feel more comfortable starting these conversations themselves.
How will we do this?
Why this research matters
Good hospice care is about more than managing symptoms. It is about understanding what matters most to people and supporting their wellbeing, relationships and quality of life, helping people to live as well as possible throughout serious illness and towards the end of life.
The IN-TALK study will help us better understand how intimacy can be recognised and supported in hospice and palliative care. By working together with people who have lived and professional experience, we hope to develop practical resources that improve support and encourage meaningful conversations about intimacy and relationships.
How can I get involved?
We are in the set-up stage of the IN-TALK study and are in the process of developing opportunities for people to take part.
In the coming months, we will be inviting patients, partners, loved ones, bereaved people and healthcare professionals to contribute through surveys and co-production workshops.
If you have any questions about the study or would like further information, please contact Dr Samantha Stone, Research Fellow: samantha.stone@dorothyhouse-hospice.org.uk