Working in partnership 

Collaboration is central to our research. Our research and education partners include LOROS Hospice, the University of Leicester, Loughborough University, the University of Lincoln, the National Institute for Health and Care Research (NIHR) and Together for Short Lives. We also work with the NIHR Regional Research Delivery Network as part of our growing research activity. 

Rainbows organises and chairs the Research in Children’s Hospices (RiCH) Group, bringing together people involved in research across children’s hospices to share knowledge, build connections and strengthen research across the sector. 

Research we’re involved in 

Rainbows takes part in research covering different aspects of children’s palliative care, from improving clinical practice to understanding the experiences of children, young people and families. Some studies are developed and led by Rainbows, while others are led by universities and other organisations across the country, with Rainbows contributing as a research partner.

  • Transitions research

    Rainbows is working with LOROS on research exploring gaps in health and social care as young people move from children’s to adult palliative care services. 

  • Memories in Heartbeats

    Memories in Heartbeats is a Rainbows-led study exploring the role of music therapy in antenatal bonding and memory making for families who find out during pregnancy that their baby has a condition which means they may not survive to full term or birth, or may be born with complications that significantly shorten their life. 

    The study explores whether antenatal music therapy could provide meaningful support for families where comfort care is planned for their baby after birth, and whether a musical memory-making tool could complement the support already provided through bereavement midwifery services. 

    As part of the study, a baby’s recorded heartbeat can be combined with music chosen by the family to create a memory track. This can then be saved in a recording device, such as a memory bear, giving families something personal to keep. 

    The research will help determine whether this approach is both feasible and acceptable to families, and whether it could complement other memory-making opportunities already offered by hospital bereavement teams. 

  • Dystonia Impact Qualitative Interview Study

    Childhood-onset hyperkinetic movement disorders, including dystonia, are a group of conditions that cause excessive and involuntary muscle contractions, which can lead to abnormal postures and repetitive movements. Everyday activities such as cooking, writing or playing can make involuntary movements worse and have a significant impact on daily life. These conditions are common but remain critically under-researched. 

    The study aims to identify what matters most to children and young people with childhood-onset movement disorders, and to their families. 

    Children, young people and parents will be invited to take part in an interview, either face-to-face or online. Interviews will last approximately one hour, although those with younger children are expected to be shorter and can include breaks. Participants will receive £30 on completion of the interview as a thank you for their time. 

    Lead researcher: Dr Hortensia Gimeno, Queen Mary University of London

  • Developing Effective Service Models for Adult Palliative and End of Life Care for People with a Learning Disability – DAPPLE Study

    The DAPPLE study aims to improve the quality and accessibility of palliative and end-of-life care for people with a learning disability, by developing robust guidance for health and social care services alongside recommendations and accessible resources. 

    This forms part of a wider research programme looking at how effective models of adult palliative and end-of-life care can be developed for people with a learning disability. 

    For this part of the study, researchers will spend time with people with learning disabilities in different settings, such as at home, during outpatient appointments or in hospital. Through informal, ethnographic conversations with individuals, their families and friends, carers and professionals, researchers will explore people’s needs and experiences of services – including what works well, the challenges they encounter and what could be improved. 

    Lead researcher: Professor Irene Tuffrey-Wijne, Kingston University London

  • Research Evaluating Staff Training Online for Resilience: A cluster randomised controlled trial of online Acceptance and Commitment Training (ACT) to improve mental wellbeing in staff caring for terminally ill people and their caregivers – RESTORE

    RESTORE is a study exploring whether online psychological skills training can improve the mental wellbeing and resilience of staff caring for people receiving palliative and end-of-life care and their families. 

    The study uses Acceptance and Commitment Therapy (ACT), delivered through an online psychological skills training course, and compares this with the wellbeing support normally available to staff within palliative care organisations. 

    Hospices taking part in the study will be randomly allocated to one of two groups. One will complete the RESTORE training programme, while the other will continue to access its usual staff wellbeing support. 

    The RESTORE programme includes eight weeks of online learning, with therapist-led online sessions during weeks one, four and eight, followed by a booster session in week 12. Once data collection is complete, participants at hospices that initially received their usual wellbeing support will also be offered the RESTORE programme. 

    Lead researchers: Dr David Gillanders and Dr Anne Finucane, University of Edinburgh

  • Ethnic Minority Backgrounds: Reflections on Access, Care and Experiences (EMBRACE)- a qualitative study of parent – carer perspectives

    The EMBRACE study explores the health, caring experiences and support preferences of ethnic minority parents and carers of children with a life-limiting condition. 

    Researchers are looking at families’ experiences of providing care and accessing services for their child, alongside parents’ and carers’ own health and wellbeing and the care and support they would find most helpful. 

    The study uses semi-structured interviews to explore experiences of accessing services, care and support needs, who families feel should provide that support and where it should be available. The interview topics have been developed using existing research and in collaboration with a Patient and Public Involvement (PPI) group. 

    The study will recruit parents, including step-parents and adoptive parents, as well as long-term foster parents and guardians of children with a life-limiting condition who meet the study’s eligibility criteria. 

    Lead researcher: Professor Lorna Fraser, King’s College London