Rainbows is a research active hospice and is involved in research that seeks to improve care for babies, children and young people and their families.

We believe that research is important as it provides the necessary evidence required to improve or change practice with the aim of improving the care that we give to babies, children, young people and their families. We also believe that everyone has the right to be involved in research if they would wish to be.

If you’re interested in learning any more about research at Rainbows and how you might get involved, please contact our Research Manager, Wendy Gamble.


  • How can I become involved in research?

    There are a number of ways in which you could be involved:

    • You may be given some information about a research study in the form of a letter of invitation or a flyer, this may be in paper format or electronically, offering information about a current research study and telling you about how you may become involved
    • You may receive information about research from a member of staff whilst you are visiting or staying at the hospice
    • You may have seen details of research projects on display at Rainbows or on the website about current research projects which may be looking for people interested in taking part
      You could ask a member of staff to contact the research team at Rainbows to ask whether there is any current research happening that you could get involved with
    • You can ask to be put in contact with the research team and you can express an interest in being kept informed of any future studies that you may be eligible for and give your permission for us to contact you to keep you informed of these.

    We would also be interested to hear your views about research, even if there isn’t a current study that you can be directly involved in.

  • What will happen if I’m interested in participating in a research study?

    You will be given a participant information sheet telling you about the study and what is involved, which you can read in your own time and the researcher will be happy to answer any questions you may have. If, after discussing the study, you decide to participate you will then be asked to sign a consent form. Even after you have signed the consent form you can withdraw from the study at any time.

  • Is it compulsory for I or a member of my family become involved in research?

    No. Participating in research is entirely optional for anyone and, if you are approached, you absolutely have the right to refuse and say no. Being involved in a research study or preferring not to participate will not in any way affect the care you receive at Rainbows or as a relative or carer or compromise any other right.

  • What does research involve?

    Precisely what is involved differs from project to project and depends on the topic of the research. Some common research methods that are used are:

    • Questionnaires
    • Group Discussions, either face to face or remotely
    • One to one interviews with a researcher, either face to face or remotely
  • Will my personal details be shared with other people?

    No. All information given to the researcher will be held securely and will remain confidential. If anyone wishes to share any of your personal information as part of research they will require your explicit consent to do this.

  • Where can I find out more about research?

Current Research at Rainbows:

C-Pos Study

The C-Pos study is a very important large multi -centre national programme of studies aiming to develop, evaluate and validate a patient-reported outcome measure(PROM) in children and young people.

Rainbows are participating in this second phase of the study which is validating the measure and testing the psychometric properties.
This phase involves asking children, families and staff to complete the measure twice to check if it measures what it’s intended to measure, and if it does so accurately in order that this tool can be used to improve care in routine clinical practice.

Rainbows, as one of over 60 sites nationally, will be identifying potential study participants in accordance with the specified inclusion / exclusion criteria.
The study is recruiting

  • children and young people from 5-17 years who are living with a life limited or life-threatening condition
  • parents / carers of a CYP living with life-limiting or life-threatening condition
  • key health and social care professionals responsible for treating the participating CYP

A member of their clinical care team will contact potential participants initially to let them know about the study and what it involves and will give them a brief information leaflet about the study. If they are interested the clinical care team member will obtain verbal permission to share their contact details with the research team. The research team will then send out the appropriate study pack to the potential participant using their preferred communication method, either online or paper by post.

Participants will be asked to complete the survey at 2 timepoints following consent, the second one being approx. 1-3 weeks following the completion of the first one.

If you’d like to find out more please contact Naomi Seaton, Research Nurse at Rainbows Hospice.

Memories in Heartbeats Study

This Rainbows study is being undertaken by Rosie Robinson, Music Therapist at Rainbows, and is exploring the role of Music Therapy in antenatal bonding and memory making experiences and how it might complement current memory making processes already being offered by services such as bereavement midwives working within hospital trusts.

The main aim of this project is to explore the feasibility and acceptability of using antenatal music therapy for families experiencing a pregnancy where there is a foetal diagnosis of a life limiting condition and there is an agreed comfort care plan in place for the baby.

Rosie will offer to work with study participants to identify or compose a piece of music that is special to them which she will audio record. She will then combine this with the recording of baby’s heartbeat and put it into a memory bear for the family to keep.

Six months after the Music Therapy session, participants will be invited to speak to the researcher to talk about how the experience was for them.

We hope that this study will offer information to demonstrate whether this intervention is valuable and worthwhile and whether we may be able to conduct further studies to incorporate it into existing memory making services offered by healthcare trusts.